Lil' Samsquatch

Movin' On Up

2011-12-16T20:41:00.000-08:00

Sammy,

I want you to know that I'm always here for you. Moms are kind of important people (thank you very much). We are a source of great knowledge, wisdom, and infinite love. Use me. Ok? Good.

So, remember when I was feeling so sad? I talked to my mom...Grandma. And you know what? All she did was listen, and then after all the listening, she said one little sentence that somehow made me see everything differently ~ or begin to. And, I feel like I'm moving back up to where I was feeling before. Like I said, moms are kind of great.

Then, the next day, after writing that letter to you, something pretty awesome happened. We saw Tiffany. You know, she's your OT. I'm glad you like her because she adores you. At least she really seems to. You were up for your 6 month evaluation, and do you know what? You rocked it. We could only do part of the evaluation because Tiff and I were talking so much and you were enjoying the swing so much, so she just kept you on as she worked on your balance. ANYway. Did you know that only 1 year ago, one of your goals was to put a small-ish object into a bowl/bucket, hand over hand, with minimal assistance? A year ago, you didn't want your hands touched. You didn't want to be directed. You were a tad challenging, my dear. But on Tuesday, you took 6 small blocks and put them in the bucket, by yourself!

By yourself Sammy!!!

I cried happy tears. I felt like a dork, but I couldn't hold it back. And then Tiffany teared up too.

You have such a light about you Sammy, and I just know that as you continue to progress and gain better control of your body, you will be able to express what is in your heart. You have left a mark on this world Samantha Lee. And you have a bright future ahead.

I love you so much. I'm totally smitten.

Mommy

A Mess

2011-12-12T21:19:00.000-08:00

Samantha,

I love you. There is no question about that. I adore you. I can't imagine my life without you. And I know you're molding me into a better person everyday. I know it. But evenstill, sometimes my heart aches. You've been doing so well lately. You haven't had a seizure since last March (knock on wood) and hopefully that means that we've finally turned a corner with those blasted seizures. Something seems to be clicking for you recently...a lightbulb has gone off. You are giving more eye contact, seem to have a desire to DO things, and overall, I just couldn't be happier.

Except.

I'm not.

I feel horrible about that. I know the blessing you are to me. And, yet, I have struggled this past week more than I have in years. Seriously. Years. I haven't felt this way since you were an infant. You, in your Samantha fashion, have been waking up way way too early. The other morning, as I tried to get you back to sleep on the couch, I wished you were "normal." Oh, it makes me sick to even say that...but it's true. I wished you didn't have to move your fingers constantly. I wished you'd stop rubbing your face against my shoulder. I wish you were able to hold. still. I wished you would sleep. I wished you could say words. Words. Just thinking about you being able to TALK makes me cry. I look at this picture, into your eyes, and I know you have something to say. So...Say It. I wished you didn't have tight muscles and you didn't have to wear stinkin' braces on your feet that rub against your skin and give you sores. But do you tell me about it? No. I just discover it. I wished you didn't have the necessity to chew on your fingers, incessantly, leaving you with chapped skin. I wished. I wished. And I wished.

And then, I felt really bad that I had wished all those things instead of wishing for a patient heart.

But, that's what I'm praying for now. I'm not exactly sure why things are hitting me like this right now. It's been a long time. I understand that this is probably normal. But I don't want to be "normal," just like deep down, I'm not sure I want you to be "normal" either.

Until I figure this mess out, know that I love you so so much. And all this stuff I wished for that morning, YOU I would keep the same ~ and if that means keeping all the rest, ok.

I'll work on my attitude.

I love you,
Mommy

Sorry Sammy

2011-12-02T17:03:00.001-08:00

But when I came across this picture just now...it was too funny not to post. Sorry, I think this is hilarious. Maybe it's not even that funny...but to me it is. I sure love you!

Still Around

2011-12-01T13:11:00.001-08:00

Well, it's been a long time. We're ok. Busy. And we've been through a lot lately. I wrote about it on our family blog and you can read about it too if your interested ~ an adoption fell through and it was kind of hard on us. But we are doing well. Sammy is fantastic. And life is happy and good.

In the meantime, however, I've been debating this blog. Do I keep it up? Do I just keep everything on our family blog? I'm torn.

Hope things are merry and bright for you all. I have a TON of blog catching up to do. Let the catch-up begin...tomorrow when I have "time." hmmm

You Make Me Proud

2011-09-21T10:16:00.000-07:00

Samantha,

I love you so much. And you are doing so well. You are making it through your second full day at Now I Can and you are taking it like a champ. Yes, you yell and cry at times. But right after, you are so smiley and it makes everyone here so happy. I love seeing your progress. You are already standing taller and straighter. Imagine what things will be like for you if you can just understand how to stand better. Your world will be more accessible for you. You will realize that walking correctly is actually easier...you always do try to make things more difficult than they need to be don't you? Well, let's work on that ok?

You're a rock star. Just thought you should know.
Love you,
Mommy

Off to Utah

2011-09-14T13:55:00.000-07:00

I can't believe the time is here. We've been talking about it for so long, and now it's time to go to Utah for Sammy's therapy. Now I Can. It seems a little surreal. I told my sister it reminds me of having a baby. You talk about it and talk about it and then one day you think "Woa! I'm having a baby next week!" Sure, I'm not going to be having a baby, but there's so much rushing around I'm doing and the final preparations...

I'm not sure what to expect. But I expect a lot. Not from Sammy. Or even from Now I Can to tell you the truth. But I do expect it to be a good experience for our family.

I'll be posting on this and our family blog -- probably more detailed stuff on our family blog since I'm not doing so hot on keeping this one up. In fact...I may stop doing this blog and combine it all on one blog. Not sure yet anymore...that's for another day though.

Until then...Now I Can is what we'll be doing the next few weeks. Wish us luck.

First Day of Kindergarten

2011-09-10T16:23:00.000-07:00

It's so weird to think that Sammy is FIVE and in Kindergarten. I just can't seem to believe it. From all reports, she is doing very well adjusting to the all-day schedule. She is happy and transitions well (which, luckily, has always been the case).

Just recently I had a phone conversation with her teacher, who I absolutely love, and she informed me that Samantha is starting to mimic more and more. Everyday she reads them the same book. Mrs. Boyer said that Sammy gets excited when she pulls out the book. And then, there are a few parts where a bus driver (in the book) yells, 'NO.' Well, guess who does it too? SAMMY. That's right. Sammy enthusiastically yells out "NO" when they get to that part in the book. And finally, at the very end, the bus driver says "YES" and Sammy repeats "YEAH" every time. Now, that just about made my heart melt. It may seem like a little thing, but it's a big 'ole deal to me. As a side note: I'm so happy we have Laura for a teacher. I knew they were hiring a new teacher. At our last IEP, the principal told me they weren't sure who the new teacher would be, but she was hoping for one that 3 other schools wanted. Well, we got her! She has 30 years experience, knows about the program we're doing at home with Sammy, and is all-around fantastic. She knows her stuff...is 'old school' good. What do I mean by that? She has a ton of experience, believes in what she does, and as new stuff comes out, she's all about adjusting and adding it to her classroom. It's all for the benefit of her kids. I love her. I made it very clear that I wanted Sammy to stay at her school, and I'm so glad it worked out that way (she could have been moved to another school).

Callie waiting with Samantha for the bus.

All smiles.

It should be easier to get a good picture. Oh well. At least there aren't any tears, right?

Here comes our door-to-door service! We LOVE our bus driver this year. Dee is incredible. She's already become a friend and I'm sure she'll be added to our family by the end of the year. I love love love this woman. It's also really nice that Sammy gets picked up last this year. Her bus time is only 1/2 hour later, but it makes a huge difference for me in the morning. Less rushing, more enjoying.

the best

2011-08-28T15:45:00.001-07:00

Sammy ~

I just wanted to make sure you know you're the best.

Love you,
Mommy

you are precious

2011-08-19T17:50:00.000-07:00

Samantha,

I'm sorry that sometimes, in the midst of frustration, I forget who you are. I always remember the obvious -- you are my daughter. But I tend to forget that you are also Heavenly Father's daughter and I allow my frustration in a situation take over. This morning, you woke up so early because of your cold I'm assuming, and when I went to get you, help you go back to sleep, you wouldn't. I was so tired. I went in to care for you and love you, but after an hour, I wasn't feeling as much love as I was feeling a deep desire to sleep. I put you on the couch and left in frustration as you cried. And it's not just that you cried, but you cried as if you were betrayed -- and that breaks my heart. I still feel horrible about it.

I just found this letter I had written Samantha from back in January. The thing is, I could write a similar letter to her today.

Samantha,

I'm sorry that sometimes I get frustrated. Today, while we were doing therapy, you wouldn't cooperate. I'm sure it's because, well, frankly...who wants to work like that? It's uncomfortable and difficult. But when I'm doing the therapy with you, I tend to allow myself to feel frustration that sometimes overtakes me. I opted out for a bit. I sat down in the hallway and let you crawl around and do what you want. Callie was trying to help, but wasn't helping...and I told her if she wasn't going to help she had to leave. That's fine, I suppose, but it was the tone.....

My letter could continue. The thing is, each day I will make bad choices, and each day I will recommit to do better. And, I really believe that as I do that...I'll be making progress. At least I hope so or else my life will seem pretty pathetic. So I keep truckin', and those dear children of mind still love me and forgive me. I'm so blessed.

My Baby Rides the Short Bus

2011-08-18T13:00:00.000-07:00

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli

My rating: 2 of 5 stars

Perhaps my expectations for this book were too high. Or, perhaps I just went into reading this with a different purpose than what the book is meant for. Either way, I have to say, I was sorely disappointed. I had such high hopes. I had hoped that this book would address the reality of life with special needs, but also give a figurative high five to me...a pep talk of sorts...a "hang in there because life is good" type of book. In the introduction alone, I immediately started feeling bad and overwhelmed with my life. Instead of feeling uplifted, I felt a heavier weight, which was unexpected. For me, the tone felt bitter and angry. And I understand that, truly. Samantha's life hasn't been a walk in the park day in and day out, but I have tried to overcome some of those feelings and have tried my best to fill my life with light and love. And I felt very attacked for choosing to live that way. I believe the book is supposed to highlight lives from varying backgrounds, but instead, again I felt attacked for being a Christian woman who puts her trust in God, who doesn't live an "alternative" lifestyle as is so often mentioned, who likes the school my daughter is in and plans to keep her there, and and and. I was the type of person that these individuals often referred to who just didn't understand...the moms who were clean-cut, religious, and because of that seemed to just not get it. I often felt sad, discouraged, frustrated, and angry -- feelings I have tried to overcome -- while reading this. Even the contributors in the book who tried to lighten things with humor were often crude in their language and very sarcastic, still giving off that angry tone. It wasn't for me. I wasn't sure if the purpose of the book was to connect with other families with special needs, to buoy each other up, or to get a book out there to the rest of the world informing them of the difficulties of parenting special needs children. I'm still not 100% sure.

However, with all that said, I'm glad I didn't put the book down (which was my plan). Because as I read, I read about the unconditional love that these parents had. I read about how they are willing to do anything for their child. I read about happiness and victories. There were some entire pieces that focused on the joy of their children...but a majority was focused on the "dark side" with a final paragraph or sentence in there -- sort of the disclaimer -- "but I love my child with all my heart." And I believe them. That's not the point.

I believe there is immense value in sharing our experiences, good, bad, the ugly. But it was just too heavy for me, too discouraging, to read all in one book. Story after story, experience after experience, I just felt a weight that made me feel...icky...(how progressive is that word?). On the other note, a book that only highlights the joys and blessings of our special needs children may be too unrealistic or fluffy for others. And, therein lies the joy of books...and the freedom of reading what suits us.

Ultimately, I'm glad I read the entire book because I feel more informed about the literature that is already out there, and I know this book actually was a pretty big hit. Maybe that means my opinion is in the minority. And that's ok with me. I would hesitate to recommend it to everyone with special needs children as I believe it just needs to fit your personality and what you need at the time of your coping/healing/dealing process.

View all my reviews

Such a Lady

2011-08-17T21:31:00.000-07:00

Here, Sammy sits as she ponders the mysteries of life...

and then proceeds to explain to Callie, only to have this information fall on deaf ears.
Such is the life of a little lady.

Looking Back

2011-08-14T18:02:00.000-07:00

I recently came across an old post on our family blog. At the time I wrote that post, I was scared. I was scared for Samantha's future and our own -- as a family. I often contemplated what our lives would be like without her. I was in fear of waking up one morning without her. I was in fear of all the what if's that all of a sudden entered our lives when we stepped into our new special needs life. I look back and read this post and a flood of emotion comes back -- the sadness, frustration, panic.

As I reread this post, and remembered those feelings, it occurred to me that looking back was exactly what I was doing. I was looking back. Looking back to a time that was difficult. Looking back to a time when I felt like I was struggling to breath at times. Looking back to a time when I felt alone and a bit isolated -- as much as I tried not to be. Looking back to moments when I thought I just couldn't make it. Looking back.

As I read, I was looking back at what once was -- and reflecting on what we had overcome. See, you can only look back when you have made it through. The tunnel may seem dark and narrow at times. You may begin to feel claustrophobic and like the tunnel will cave in on you, especially when you can't see the end. And while you're army crawling through that dark tunnel, sometimes it feels like you can only see or feel where you currently are. But, ultimately, when you make it through, that's when you have the pleasure of looking back and seeing what you made it through.

In deep appreciation today, I reread that post -- realizing where we are now. Reappreciating how in love I am with Samantha and Callie, and Marcus. And feeling an increased amount of respect, honor, and love for my Heavenly Father -- for sustaining me during that time. I didn't realize it then. It was only a logical sustaining. I understood, logically as I leaned on my quivering faith, that He was helping me. But today, I look back -- 4 years later -- and know He guided us through.

I'll never know the future. I can't predict Samantha's life. But I no longer fear for her. Now, we are going through a particularly good, stable time in her life. And I'm sure, in fact I have no doubts in my mind, that fear will creep its ugly way back into my life...but then, when that happens, I hope to stumble upon THIS post, so I can look back and be reminded that I can make it through...I can feel love and peace...and I will know He's there. And that will help me to once again look forward.

Ready for School...Again

2011-08-11T22:05:00.000-07:00

This summer just flew by. I truly cannot believe that it's almost over and we'll be starting school, again. And this time, we're not talking about pre-school. No ma'm. We're talking kindergarten. Seriously? My baby is 5 and is going to be attending kindergarten?!

Samantha seems to sincerely enjoyed school, so that's a good thing. But I so clearly remember her first day of preschool up in Spokane, Washington. I cried. It was a huge deal. I drove her and picked her up everyday. She was so loved and simply, adorable, being a little school girl. Then we moved to California, and I drove her again. This time it was further, but I loved taking her to school, seeing her face light up as we entered the classroom. Then...the day came where we took the bus. Driving just became too much for me with Callie. Oh boy. The first day on the little bus ... heartbreaking. She was/is sooo small and to see her all strapped in and driving away....her little head barely visible over the window. I cried. I sure did. But she LOVES it. She giggles on the bus, loves the vibration, the loud sound. Sammy. She's her mother's child. I loved school, and so does this little one.

So here's to the upcoming new school year and new classroom. I hope it's as joyful and productive as this past one has been...but if I have to choose between the 2, I really think I'd choose joyful (at least today).

Lucky?

2011-08-08T15:47:00.000-07:00

Whatever you want to call it...I'm feeling that way. I've been reading My Baby Rides the Short Bus -- more to come on that later (most definitely -- I have my feelings about this here book), and I have to say I'm not sure how I've dodged so many of these special needs bullets that everyone seems to write about in this book. Sure, I've had some doctors who aren't as thorough or even nice. But, really. We've had extraordinary doctors. I feel like, for the most part, they have done their job. They have tried their best. They have answered my questions. We may not see things they same way all the time, but that, to me, doesn't mean that they are out to make my life miserable. We have had great therapists who care about and love Samantha. We have had AMAZING teachers who adore Sammy. IEP's have never been a problem. Not once. I haven't had to go in ready to fight for what I want for Sammy. Now, surely we've had our struggles and not everything has gone smoothly, but I'm either "blessed" or dang lucky because this book is making me feel guilty that I haven't had to go through these same things as the writers in this book. This book is definitely...well, there'll be more on it later.

Has anyone else read this? I'm not sure, yet, that I'd recommend it.

Seeking Normal

2011-07-31T16:32:00.000-07:00

I feel like, over time, I've embraced the special needs life. It has become who we are as a family. We entered this strange community as soon as Samantha was born, and we cannot leave it. We will always be a part of it, and it will always be a part of us. And, that's ok with me. At times, that seems so strange, so weird, that I embrace it like I do. But, it was a clear decision that I made -- that I felt I needed to make.

With that said, there are times when I seek "normal" -- I crave it. Samantha just graduated from pre-school, and as ridiculous as I think pre-school graduation is, I think it's adorable! I have seen preschool graduations on many of my friend's blogs, and it made me sad that Sammy's school didn't seem to have one. There were no programs, no certificates. She simply will move onto kindergarten in the Fall. And that secretly made me so sad.

The other day Samantha came home from school with this picture...

I can't tell you the joy it brought me. First, because she's so dang cute. But secondly, it fulfilled that part of me that wanted "normal," even if normal is ridiculous (at least in my opinion). This picture, and it's just a picture, to me meant that my Sammy was having the same celebration of preschool as other kids her age. It meant that she was moving on, graduating, to new adventures in her life. And, that is something to be celebrated!

I used to feel like these were conflicting feelings -- embracing our life while still desiring "normal." But, I have realized that you can have both. And it's ok to have both. Wanting normal doesn't mean that I want Samantha to change. That's really never been (at least in the past few years) what I want. I just want her to have similar joys and experiences in life. I want her to be treated the same, even if that's different. Does that even make sense? (sigh)

Even if I can't articulate those thoughts, you got to admit that this picture is pretty cute and makes this mama pretty proud. I love my little Sammy.

Favorite

2011-06-30T18:48:00.000-07:00

While we were in Michigan, we had some family pictures done...and this picture just melts my heart. I think it's my favorite of the entire day.

5 Years

2011-06-23T12:21:00.000-07:00

Oh how quickly 5 years pass by. Today, Samantha, you are 5 years old. FIVE years old. That's incredible to me. Today you giggled and smiled as you pushed the bowling ball down the little ramp. I hope I never forget that. You loved it. Today you smiled every single time one of your cousins came up and said, "Happy Birthday Sammy." You know it's your birthday. You must. Because there is this light in your eyes today. You are beautiful. You are smart. And every day I feel more and more blessed that you are mine...that I am your mommy. I love you baby girl. You have expanded my heart more than I thought possible. I hope you have a fabulous rest of your birthday and today, as you are surrounded by all of your family (from my side), understand how much we love you. We all love you so much.

xoxo,

Mommy

My Problem

2011-06-15T21:54:00.000-07:00

Dearest Munchkin,

I have a serious problem. I talk about you too much. But, the thing is, you fit into every single conversation. I have to restrain myself from interjecting "Samantha stuff" into my conversations. Seriously. And lately, I'm having to constrain myself more and more! But sweetheart, when you have a face like this....

how can you not consume my every thought? It's a fair question. You're a babe -- you good looker you -- and I adore you completely. You quite simply light up my life (as cliche as that sounds) and I wouldn't replace you for anyone else in this world.

I love you to the moon and back. For eternity.
Mommy

Samantha Syndrome

2011-06-03T19:28:00.000-07:00

Today was the big fat 'ole geneticist appointment. Anxious? I tried to be sneaky about it, but yes, I was a little anxious. Here's the short version (and usually short is better with me). Three different diagnoses were mentioned:

* Seckel Syndrome: She is not convinced, at all, that Samantha has Seckel Syndrome. Big 3 cheers. That was one of our biggest concerns because with Seckel Syndrome comes higher risk of cancer, life-threatening anemia, etc. I wasn't feeling up to that today. She didn't see enough evidence, at all.

* Primary Autosomal Recessive Microcephaly: She's also not convinced that Samantha has what she was originally diagnosed with. So, even though at birth she seemed to have fit it, now that she's almost 5 (holy cow!) she doesn't really fit it anymore.

* Microcephalic Osteodysplastic Primordial Dwarfism: She only brought this up because after some research that Marcus had done, he asked questions. Not convinced with that also. Though Sammy does seem to fit parts of the symptoms, I guess, after some of Marcus' research, there are some big things that she doesn't fit -- like even though she is small, she is looking completely proportionate (except for her head), etc. Classic signs of dwarfism are absent.

We are looking into having an updated MRI (our last one was in 2007) and at the same time, doing a bone scan. At least they'll have that on file so if something comes up, they have recent information and they can use when speaking with specialists.

For now, it looks like our second concern -- any other major health issues that we need to be concerned about (kidney problems, cancers, aneurysms, etc) -- aren't really an issue either because we simply don't know. And that feels great. I'm ok going into the unknown. After all, even with Callie we have no idea if she will, heaven forbid, be hit by a car or whatever.

Dr. Bergoffman said that at this point, she felt Samantha fit the "undiagnosed" category -- yes, certainly there's a strong probably that she has some kind of microcephalic syndrome, but what that could be is completely unknown. Marcus mentioned that perhaps she just has Samantha Syndrome, and who knows? Maybe one day other kids will have Samantha Syndrome. But for now, I'm feeling relaxed again.

~*~*~*~*~*~*~

Samantha Syndrome: A form of microcephaly, presenting in utero. Small in stature, though no signs of true dwarfism. Happy. Playful. Children with this syndrome tend to light up the room when they enter and change people's hearts and lives for the better.

Appreciated Feedback

2011-06-02T10:37:00.000-07:00

Thanks for the emails and phone calls with all the non-profit information. We may have to take a different approach than what we were originally looking at, but I think we'll have one up and running that can benefit Sammy and other kids and families. I'm excited for it.

In the meantime, check out this cutie patootie trying to take a bit of an apple! I know her hands should be more open and relaxed, I know her left hand should actually be holding the apple instead of pressing against it, but I love the smile in her eyes -- she's so proud of herself.

How to Properly Thank

2011-05-29T23:13:00.000-07:00

I had some thoughts today that I shared over at The Green Piece. It's something that I realized today -- about the love of the Lord. And I just have to say, I feel so blessed. I'm not saying that if all of stuff wouldn't have happened that I wouldn't be a blessed person. Because, truthfully, I feel like my life is a testament of the Lord's involvement in our lives daily. But, I'm just saying that I know all this goodness has come because of my Heavenly Father. I just recognize that all this is one, big, fat, huge blessing...and it's incredible.

Which leads me to this question: How do I adequately express my gratitude?

I'm a huge believer in thank you letters. I believe they should be handwritten (though some of our business sponsors will only receive typed out letters, and our participants received an email...tacky? I hope not.). I believe they should be individualized. And I believe, above all, they should be sincere. Ok. Great. That's my belief on thank you notes. So, I can send those...and I have and will continue to until they are all done.

But how else?

I have discussed with Marcus the desire to begin our own non-profit organization where we can not only continue to fundraise and people can get the tax benefit (thus making it easier to fundraise), but we can pay it forward...help other families who are similar. Sweatin' for Sammy was great, but how many other kids are there in this community that we could sweat for? I don't know. It's a lot to consider and a lot to organize, but we are seriously (or at least I am seriously) thinking about it right now. I have a name in mind, even. Yeah! I mean, sometimes that's the hardest part, right? Who knows what will happen, but I get pretty excited about the idea -- about helping others feel what I've felt recently. Oh the joy we could feel as we give a helping hand to families who are trying so hard to help their special children. Pretty exciting stuff.

So, you out there...who's done it -- started a non-profit? What do you suggest? What do we need to know that we're maybe not thinking about? Tell me your thoughts, suggestions, successes, and what to avoid. I need the good, the bad, and the ugly if we're going to make this work (and I really want to).

What's the Diagnosis? Part 1

2011-05-24T19:09:00.000-07:00

Now that Sweatin' for Sammy is over, I have other things that I need to focus on again. Everything else I was involved in was a little neglected, and so now, real life begins again.

One of those things is working with the geneticist here. When Samantha was born, she was diagnosed with Primary Autosomal Recessive Microcephaly. We were given information and sent on our way. There really was no need for follow-up. There was no genetic test that could be performed to confirm the diagnosis, but she seemed to fit the diagnosis pretty well. Ok.

While living in Spokane, Samantha's pediatrician (Dr. Olson) was very much involved in the special needs community. He suggested we see a geneticist because he was pretty certain there was now a test for this rare condition. We visited with the geneticist, and she said she thought the original diagnosis was accurate. We discussed all the same stuff, so none of it was new to me. As is customary, I received her notes from that appointment in the mail. This time, however, I either didn't read the report, or didn't notice "seckel syndrome" on that paper.

Last year a family friend passed away, leaving behind his wife and young child. He was about Marcus' age and it really got me thinking about ... life. How fragile it is. How we just never know. And I got thinking about losing Samantha and it made me sick. So many of you have lost your children, and my heart breaks for you. I just can't imagine my life without Samantha or Callie. I decided that I wanted to give one more shot to finding out if there was a genetic test out there that could confirm her diagnosis -- Primary Autosomal Recessive Microcephaly. What if she didn't have that?  Are there things we should be keeping on eye on that we aren't simply because we don't really know her diagnosis?  Heart/lung/bone issues?

When we moved to California and Marcus got a job with Kaiser Permanente, I decided it was time to investigate.  I have done a majority of this on my own, as not to stress out Marcus while he endures a stressful year. I got Samantha's DNA tested (the new microarray test), and it came back "normal." A genetic counselor has been gathering all our files and we now have an appointment for June 3 to meet with a geneticist. The geneticist will meet Sammy, measure her, we may get some scans done, possibly additional blood work (not all at once most likely).

I'm not sure what to expect. At first, I thought "Ok, maybe she has Seckel Sydrome." But Seckel Sydrome comes with a lot of complications...higher risk of leukemia is one. Marcus is terribly stressed out thinking of what we may hear that day, and I'm just not sure how I feel. I'm the type of person who likes to know it all...lay it out on the table and I'll go from there.  But I can also be very "Who knows? And there's nothing we can do about it anyway."

The geneticist we met in Spokane, looking back, seemed less thorough. I'm not sure how many records she had of Samantha's. She didn't measure her. And, she states in the report that Samantha "was referred for genetic evaluation by Dr. Olson's office due to a previous diagnosis of primary microcephalic dwarfism (Seckel Syndrome)" yet that's not the original diagnosis that she had.

So, was she just careless? Or doe Sammy really have Seckel Syndrome, and we now have to watch for life-threatening anemia and signs of leukemia? I have always felt blessed that we knew her diagnosis early on; we've never had to search and search for what she may have. But now, I'm starting to wonder if we are just beginning a process that I never imagined we would.

Jenny. Welcome, again, to special needs living. Right?

Sammy sitting on the deck, watching her sister and cousins run around. She's amused.

Wow!

2011-05-23T15:33:00.000-07:00

Sweatin' for Sammy -- 5k was a huge success. Some of the highlights from the day, for me, include the following:

* Seeing Kelly Dippel there, ready to walk with her coffee mug in hand -- she had been up until 4:30am the night before, and was there ready to do this for Sammy!

* Being at Quicksilver at 6:30am, when it was quiet and peaceful (and cold) and feeling that surge of energy and excitement with simultaneous peace

After the 5K family picture

* Knowing that volunteers were working at Hellyer Park in order to make this event free for us...incredible...knowing that they weren't with us at the 5K but off-site working for Sammy...feel a lot of appreciation for those guys.

Christine Valasco, our timing guru!

* When Jackie (who vounteered in our committee but has never met any of us or Samantha) met Sammy for the first time. It was magical for me.

* Seeing Sammy in that oversized Sweatin' for Sammy t-shirt

* The incredible turnout (and the 40 additional people who registered the day of)

* Seeing the awesome banner that FastSigns donated -- awesome

Part of the Davis family.

* Being with my brother and his family who we don't get to see terribly often

* Meeting a woman who wants to hold her own fundraiser for Samantha

At the start line -- all ready to take off.

* Meeting a husband and wife who read about Samantha in the newspaper and decided to come out to donate and give us the blanket she made for Samantha (for the record, I LOVE this blanket and slept with it Saturday night. I have to keep reminding myself it's for Samantha -- not me!)

* Getting to the top of that blasted mile long hill!

Our gorgous banner.

* Drinking ice cold water up at the top

* Crossing the finish line with Sammy and seeing the crowd cheer and clap for her. Quite emotional.

* Being surrounded by family

* Being surrounded by friends

* Being surrounded by strangers who were there for my little girl...humbling feeling

* All the volunteers!

Jen and I before people starting coming in.

* Seeing all the awesome t-shirts that said Sweatin' for Sammy. It was just a cool feeling knowing that they were all wearing Sammy's shirt.

* Sammy totally happy during the walk/hike and yelling "Go! Go!"

* Watching people get their medals at the end of the race

Kelsey Black, Sydney Black, Diane Black (event planner/coordinator/goddess), me, Jennifer Williams, Lori Ellington, Marty Judd, Kim Nelson, and Ranger Patrick right in the center. I loved our ranger. He was so helpful and made sure we had everything we needed.

* Amazed seeing how many people stayed after the race to just be there

* People taking pictures with Samantha in front of the banner

* Having Marcus by my side

Penni and Chad. So much hard work from this fine lady!

* Announcing we have enough money for Samantha's 1st session of therapy and hearing those cheers!

* Going to Subway and Pinkberry after the race and seeing how many people were there.

* Talking to a man who participated and he, not knowing I was Samantha's mom, expressed how deeply he felt about the race (I did tell him I was Sammy's mom...and he gave me a hug)

Callie was such a good sport and had a lot of fun. She took the microphone from Tom Pack and invited everyone over for a party. The crowd liked that idea. That's our Callie -- always up for some fun!

* The hugs from so many people

* The fabulous nap afterward!!!
* Callie taking the microphone and inviting everyone over to "my house" afterwards.

Trail of runners at the trail head

And that's just a few of the highlights. It was an incredible incredible day. I talked to my mom on the phone later that afternoon and tried to express some of the feelings I had there. One thing that was overwhelming, was this sense of family. There were definitely people there who I know and would call family -- aside from my actual family members being present. And, of course, there were complete strangers there as well. Yet, noone felt like a stranger to me. They were all there for Samantha. We had a total of 179 participants on the trail, in addition to our abundance of volunteers. We were a large group, but we were small. It felt very intimate. We were on a hard trail, immersed in nature, walking/running/hiking/sweatin' for Sammy.

As people have already discussed plans to do this again next year, I think about all those who were there on Saturday and the intimacy of that event -- the closeness and the love -- and I feel so blessed to have been there with these people who were there in the beginning of, what I feel, is the beginning of a journey.

This 5K has changed my life. Yes, it is helping us to cover therapy expenses, but it's more than that. It has changed me. To see not only the willingness, but the excitement, and, almost a passion, in these people -- all for Sammy -- it has changed me. And I'm so excited for our next chapter.

Thank you to all who helped, volunteered, attended, etc.

The after-the-5K-party where Subway donated 15% to Sammy. Pinkberry donated 20% -- didn't get a picture there, but we had a lot of people hitting up that frozen yogurt!

Amato's and More

2011-05-16T21:33:00.000-07:00

Tonight I went to Amato's Pizzeria. Let me just say, I was in awe. First, yes...we did a Chevy's fundraiser back in April and the turnout was shockingly amazing, to say the least. Tonight, while I was there, the crowd was smaller, but just a glorious. I saw friends and family. I met Mahmood, the owner of Amato's. He is a kind and generous man. To name a few things, he bought an acquaintance's shopping items in the checkout line once without her knowing it...until she went to pay and her bill ended up being $5.49 (when the value of her purchase was clearly much much more). Another acquaintance was stranded and he drove up a rental car to give to her so she wouldn't be stuck. There are plenty of other stories like this. He's just a good man.

Mahmood doesn't know me personally, or Samantha. When he heard about her, though, he decided he needed to get involved and whipped up this fundraiser. He then told Kelly (I'll introduce her in a moment), "After tonight, I'll write a check for $500 in addition to whatever the fundraiser brings in." I mean, really. He also offered his restaurant to me for a silent auction, or anything else we would want to use it for. This man beams charitable love and goodness.

I also met Kelly Dippel tonight. She's a petite woman with a powerful drive. This lady is incredible. My friend, Penni Allen, decided that she needed to have a meeting with Kelly -- since Kelly was awarded Most Influential Woman in Silicon Valley a couple years back. Now, it's obvious Penni has some drive of her own! Kelly, once hearing about Samantha, got involved. Her organization, Silicon Valley Cares, took Samantha on and got the word out. They have their members participating in the run. They are advertising it. Their PR person, Cheryl Ryan, wrote an article that will be going in the Almaden Times on Wednesday (by the way, Cheryl was delightful...very warm and beautiful). Kelly talked with Mahmood and instigated the shindig tonight. Tonight, I met Kelly's other members on Silicon Valley Cares. They are all like her -- kind, warm, generous, loving, wanting to make a difference in the lives of people living in their community. I was so touched by their goodness. And as they gushed over my baby girl, I was so proud to be Sammy's mom.

I feel like a broken record saying this, but I feel like Samantha is so much more than this one child. I feel like she is truly representative of the impact one child, one individual, can have on an entire community. It's amazing for me to witness.

So, tonight. Thank you to Kelly Dippel and her crew. Thank you to Silicon Valley Cares. Thank you to Mahmood and Amato's Pizzeria. Thank you for loving my little girl and showing it through your service. It has left a deep impression on our hearts.

Right Around the Bend....

2011-05-15T12:23:00.000-07:00

In the Mouth

2011-05-13T15:09:00.000-07:00

I came across this old picture today. This was last Christmas. Oh, Sammy. She used to love this window shade...not because it kept the sun from her eyes, but because it was a great toy. She'd pull it and hit it back and forth...and on this day, she found it to be a nice chew toy. Great.

Lately Samantha has been chewing on her fingers a ton. I'm not exactly sure why she has reverted back to chewing her fingers, but I hate it. I really do. The tips of her fingers are getting dry -- from always being wet (strange if you take the time to think about it). She is approaching the big #5 birthday, so it was suggested to me that her 5 year old molars may be coming in. Maybe. But whatever. She's still my cutie patootie with a tiny little bootie. I love my girl.

Miracle

2011-05-12T00:33:00.000-07:00

"The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him."

~ Pablo Caslas

Samantha, oh how I hope you know what a miracle you are...and there has never been and most definitely will never be another one like you. I love you. You have changed my life for the better.

When You Know Her

2011-05-10T21:56:00.000-07:00

Recently, I've read two articles in two different newspapers, written by two very different people...about Samantha.

The first article was written by a local journalist who writes for the local paper here. Her articles are picked up and published in the San Jose Mercury News. She's been a writer for a long time. Though I didn't know her personally, my experience with her was very pleasant. I was touched by her kindness and sincerity. As I've posted earlier, her article can be found here.

Then, just a few days later, a second article was published in The Eleight -- Leigh High School's newspaper. This article was written by a senior who writes a column about her senior experience. I don't know how long she's been writing, but she's talented and has a bright future. I happen to know this journalist personally, and my experience with her is always pleasant. I am constantly touched by her kindness and sincerity. She goes above and beyond what others would think of as "nice," "generous," "thoughtful." She takes after her parents that way...they're an awesome and poweful force...this incredible family. Her article can be found here, and it's worth a read.

There are some similarities in these 2 articles:
* The subject: Samantha
* The plug: Sweatin' for Sammy 5k
* Some back history

However, as nice as both the articles were, Ms. Sydney Black's was just so touching to me. Why? How is it that a senior in high school could evoke such emotion from me? Naturally, I was touched that this person I knew had such strong feelings about Samantha...but that's just it. Sydney knows Samantha. She plays with her. She helps me with therapy. She holds her and comforts her. She sees her every Sunday and throughout the week. She's part Black, part Green.

And it's made me think: what happens when we get to know people? For me, I become more invested -- especially if I like ya -- and more attached. I feel more deeply. An article about a situation/story/or little girl can be touching. But when it's written by someone who knows her...when you know her...it's just so much different. And...that's made me think. Don't we all have someone in our lives that we just wish people would take the time to know? We think when you get to know her...if you'd just take the time to know him like I do...you'd see. You'll fall madly in love with my little girl when you know her.

Anyway...just some thoughts swirling around the 'ole noggin tonight. I'm feeling very grateful for my friends, and for strangers, who already are falling in love with Samantha...and I sincerely hope that they'll all get to know her on a different level one day. Possible? Probably not. But a mom can still hope.

Christmas Flashback

2011-05-02T20:34:00.000-07:00

Came across this picture tonight and had to laugh. Yep, this was in the middle of filiming our rendition of "How the Grinch Stole Christmas" and of course Sammy was one of the whos from Whoville. Oh, love this picture!

Put Your Head on My Shoulder

2011-04-30T20:42:00.000-07:00

Dear Samantha,

You make me melt. You do the smallest, simplest thing, and I'm in tears because I feel my heart overflow with joy.

You have a cold. And colds are hard because you can't blow your nose. You can't clear things out yourself. You just kind of suffer through it, all stuffed up. I mean, you've suffered through worse, but I think we all agree that colds are annoying. Today Jacqueline came from the newspaper and took some pictures of you for the upcoming article. You weren't particularly happy, but you weren't sad. Oh how I wanted you to shine so everyone who saw you in the paper would feel your spirit through those eyes of yours. But, you're a little foggy with this cold and...that's ok. You were perfectly chipper 2 hours after Jacqueline left. I wished she could have been there then. The rest of the day you were perfectly pleasant.

Usually you go to bed quite well, but tonight, about 45 minutes after you were in bed, I heard you singing. Well, you aren't really singing, but that's what we call it. Grammy calls them whale calls. I went in, you smiled so big when you saw me. We went through the routine of the saline nasal drops and Eucerin around the face (you get so chapped when you have colds), and you just smiled at me and locked eyes with mine like I was the most magical, fantastic, perfect being in the world. And you know what? I felt like I was. You made me feel like I was pretty wonderful.

I turned off the lights, and you put your head on my shoulder. That's when the tears filled my eyes and gently flowed over onto my cheeks. You have never put your head on my shoulder before, and it was...so simple, but so beautiful. You normally just curl up into a tight ball against my chest, but this time, it was a perfect way to end my evening. You fell asleep almost instantly and after a few moments I laid you down.

I'm not sure what it was about you laying your head on my shoulder. Partly, it was so normal...and not many things about your life are considered "normal." But, I think it has a lot to do with the love you shared with me only moments before -- that look of adoration -- and then to just lay your head on my shoulder...that absolute trust, maybe. Again, I'm not sure why that moment was so dear to me, but it was.

And it's a moment I hope to never forget.

We're In...Now WE Can

2011-04-26T14:25:00.000-07:00

Deciding to take Samantha to Now I Can in Utah came up pretty fast. The following months have been intense and fabulous! I've said this before, but the love that we have felt from our friends, family, and perfect strangers has been overwhelming. In an attempt to not sound so dramatic -- I just feel like we are witnessing something great. I feel like our family, Samantha specifically, is a part of something greater than this therapy. Yes, I believe that this therapy is going to be fantastic. I expect to see miracles, like, ohhhh using a spoon to feed herself, walking up stairs. I don't know what it'll be, but I believe there will be real physical miracles that come from this therapy.

Today, however, as I met with friends to coordinate Sweatin' for Sammy - 5K, I realized I was witnessing another kind of miracle...the kind that brings friends, families, strangers, and entire communities together. The kind of miracle that knits people's hearts together.

Though both kinds of miracles can be life changing, today as I sat with these selfless woman, I thought to myself that if THIS is the only miracle that comes from all of this, it may just be worth it. But, just have it be known...I'm expecting some of those other physical things to come along too. Am I pushing my miracle limit? I sure hope not.

And, finally. YES. The purpose of this post. Drum roll please:

After our Chevy's fundraiser, we had enough money to pay the downpayment of $700 and secure Samantha's therapy session. She is scheduled for September 19 - October 7. We are so ExCiTeD!!! Wahoo!

My Girl

2011-04-25T15:33:00.000-07:00

I'm grateful for days at the park, for days when we're together as a family, for days when you are smiley and happy. I love those days. And I love you. You'll always be my little girl.

It's Been Awhile...

2011-04-17T00:08:00.000-07:00

Hey there little Sammy,

It's been awhile since I've posted on your blog. This is why...

We've been working like crazy lately. We recently decided that for sure we were taking you to Now I Can. Once the word got out, we got fundraisers like crazy going on. We did a restaurant fundraiser at Chevy's. It was a hit. Diane Black started researching, and then creating, a 5K for you scheduled for May 21 (the day after my birthday). I can't think of anything I'd rather do to celebrate my birthday than run for you. Sweatin' for Sammy. I like the ring of it. I came up with it after Daddy said he wanted something fun and with alliteration. That was the first thing that came to my mind -- after Sauntering for Sammy, but I wasn't really serious about that one. Don't worry.

Scott Emert -- you don't know him but Uncle Ted played soccer with him for years and so, I know him too, is putting a fundraiser together for you while we're in Michigan this June. He, Jason Emerine, Scott Wickham (who I had a crush on back in the day -- and now he's doing this for me...strange really) and some other guys are putting a silent auction together. It's pretty incredible. Their new goal is to earn enough money to get you to Now I Can TWO times.

I've been overwhelmed with the ourpouring of love.

On Thursday, when I dropped you off at Scribbles and Giggles, Ann (manager) said, "She must bring you all so much joy. Look at her." And you know what? You do. You bring us so much joy. And what I have discovered is that what I thought I knew -- that you bring joy to others around you -- is actually true. People want to do so much for you because you do so much for them, in your little way. You are great, Samantha. And sometimes I stand in awe that you are mine.

I love you.
Mommy

Cerebral Palsy Awareness Month

2011-03-18T22:22:00.000-07:00

March is Cerebral Palsy Awareness Month. That's right. There is such a thing. I've been thinking about this a lot the past couple weeks. I wanted to post something right away -- to make people...well...aware. But, it just never happened. Too many other thoughts on my mind.

And honestly, I've never really associated Samantha with Cerebral Palsy (CP). I know she has it, but it's so secondary to who she is. If I'm going to label her with a diagnosis of any kind, it's Chronic Sweetness and Lovable-ness (CSL as it's also known around these parts).

I remember one day reading a report from her neurologist. Written on the paper, he mentioned cerebral palsy. I was so worried. I knew that name, but I had no idea what it meant. At our next visit, I wearily asked him about it. He informed me that Cerebral Palsy is an umbrella diagnosis. It's a diagnosis that really just explains a group of symptoms.

Samantha has microcephaly -- the jury's out on what her actual diagnosis is, but for now it's the same as what it was the day we met with the geneticist at Primary Children's Medical Center. For now, Samantha has Primary Autosomal Recessive Microcephaly. I have just spent a good 45 minutes scanning different articles, looking for something that would better explain her diagnosis, but unfortunately, they just left me depressed. So, I won't share that annoying stuff. BUT, what I do know is that we were told upon her birth, due to her small brain size, she wouldn't amount to much. And what we DO know that she is very much MUCH. She's more MUCH than most I know -- and they have a "normal" brain. I'm getting off track here...back to CP...

So, Samantha has a group of symptoms including high and tight muscle tone and jerky movements. It's the way she moves that classifies her as Spastic Quadriplegia Cerebral Palsy with Ataxia. So, what the heck does that mean? It means her movements are spastic (jerky and sharp), it affects all 4 limbs, and she has balance issues. All of this is true.

As I talked with Samantha's physical therapist today, who just finished a very intense course with Billi Cusick (creator of the TheraTog and an internationally known pediatric physical therapist who specializes in cerebral palsy and other neuromotor deficits), she told me about some of the things she learned the past week. I have no references for the information I am about to share.

1. Billi Cusick eats, breaths, and sleeps pediatric physical therapy. I don't know. We'd have to ask her ourselves.

2. Billi Cusick is intense -- in a good learning-a-lot way.

3. Recent research shows that CP, though the diagnosis is because of mobility problems, the real problem is a sensory problem! Whhhat?! This is exactly what we've been doing with Samantha! Sensory craziness. Glen Doman said this in the 1960s, and now research is catching up I suppose. So, she continued, it's important to have them on their feet, on the ground, trying to move even if we think they can't. They need as much sensory input as they can get. That will help the central nervous system and that, in turn, will help with the symptoms -- mobility, muscle, etc. I was very excited to hear this, and she got really excited when I told her more about our therapy. "Isn't it good to hear that there's some stuff backing up what you're doing and the progress Sammy's making?!" she asks. Um, yeeeaaah.

Very interesting stuff -- if I do say so myself. And I do. My thoughts are wandering. Here was my original point when I started (for heaven's sake Jenny! sheesh):

Things change everyday. Research and funding and blah blah blah changes how we all see things. But it's also WHO we interact with that changes us. When I saw Cerebral Palsy on Samantha's paper, I was so worried. But you know, it doesn't change who she is. She's still my little Sammy and she's adorable and kind and I could just tickle her all day long to hear that laugh. But, knowing she has cerebral palsy -- and microcephaly and epilepsy -- and knowing kinda what that means has deepened my love and respect for her a little. She's one tough cookie. I feel gratitude to have her in our home. And I have such gratitude for those other families that help me feel like we're not so alone in this journey.

So, for all you CP fighters and heroes out there...this month is for you. I give you all my love and respect.

Oh So Peaceful

2011-03-14T20:51:00.001-07:00

Choosing to Act

2011-03-01T21:16:00.000-08:00

How do we respond when someone asks us questions about our kids? Or, how about....how do we respond when someone says something hurtful about our kids? How do we talk to others about our kids and their special needs?

Recently I had an interesting experience. Now I can call it interesting, though at the time it was a mix between hurtful and...well...educational. I was stopping by a friend's home quickly to pick up my phone...yes, it had fallen out of my pocket and for some time I was quite panicked -- not because I couldn't find it, but that Marcus would have even more ammunition to support his claim that I'm always losing my phone! Samantha and Callie were both in the car. My friend's little boy (we'll call him Son) was outside playing with a neighbor friend (we'll call him Boy). Since I was just going to run to the door, I left the girls in their carseats.

The two boys approached the car as I was getting out. They were looking through the minivan's slightly tinted windows at the girls. Son said to Boy, "Her head is really really small. It's so tiny. She's a freak." Did I hear that correctly? He's such a good little kid, I'm sure he didn't just call my daughter -- who has obvious special needs -- a "freak." I mean, he knows her afterall. His mom visit teaches me...they are in church together. No, I didn't hear that correctly.

"Yeah, I know. She's a freak."

Hmmm. Guess that confirms it. I wasn't quite sure what to do in the moment. I was hurt and sad and really angry. But what is the right way to deal with something like this? I was almost up to the door when I heard him confirm what I had thought he said...and my knee-jerk reaction was to defend her. So, I said, "Hey guys, she's not a freak." But they were already riding their bikes up and down the sidewalk again. It was so fast. It happened so. fast. Was my opportunity gone? Yes. So, I decided to create the opportunity again.

I got my phone from my friend and headed back to my car. The boys were close by again and so I said, "Hey guys, Samantha and Callie want to say HI to you." I opened the car door so they could see both of the girls...but then another friend came up along the sidewalk and started talking to me. My opportunity vanished, again.

Had I not be delighted by my friend's presence, this is how it would have went down:

~*~*~*~*~*~

I would introduce Boy (because Son already knows her) to Samantha and kindly continue to point out the obvious. "She is small isn't she? Do you know she's actually older than her sister, Callie?" I'm smiling. This is all very light and happy. This is when I go into teaching mode and explain that she has a smaller brain, but she's learning to talk, and she can walk, and if you make funny faces she will sometimes laugh really hard with you! Kids like making Samantha laugh. I do this when kids at the store stare. It works really well and we all walk away feeling good. But today I was going to add that, "I heard you call her a freak. I wouldn't say she's a freak, just different, though, huh?"

~*~*~*~*~*~

I learned a lot in those quick few seconds. I had never heard someone call my daughter FREAK before, and that stung. It hurt really bad. I know Son's just a kid. But it was still wrong and cruel. How hard was it to not want to say, "Well, you're a bit of a freak yourself little punk!" in that split moment? How hard was it not to get emotional?

When Samantha was an infant, we got a lot of looks and stares. Most people were kind, but some were unintentionally cruel. I realized during that time that I have the choice to act or react. It's easy to react to what people say...but then don't we often have regrets when we react too quickly? What is harder, at first until it becomes habit and a part of who we are, is to decide to act -- to educate and help change perceptions of what special needs really is.

Early on, for my own sanity and emotional health, I decided that I was going to act. I was going to seek teaching opportunities to help educate people about Samantha and her condition. Instead of walking around the victim of gawking eyes and pointing fingers, I was going to walk around as if I had a treasure (because I do) and if someone was courageous enough to approach me...no matter if they knew how to approach me or not...I was going to give them a slice of knowledge about my treasure. I gradually felt more and more comfortable talking about Samantha until it became no problem.

Even still, when this boy called my Sammy a freak, it hurt and I wanted to react to his label. He was wrong and he needed to know it. But, had I done that, I would have missed the opportunity to teach. Well, turns out I missed the opportunity anyway, but oh well. The theory is still a good one, and one that I stand by. Choosing to act gives me power...and ultimately, more happiness.

Being Different

2011-02-02T14:20:00.000-08:00

Samantha,

There will be times in your life when people say not-so-nice things about you. It makes me sad. It doesn't seem to bother you right now, but I believe that in time you will understand their cutting words -- you will sense their attitudes. This may make you sad.

After you were born, there was a time I cried every single day. I told myself that I would still live my life, go out like I would with any baby. So, we went everywhere together. And it seemed like every day, someone would ask me questions, make comments (not always intending to be rude), or gawk (if they only knew how obvious it is). I would be fine, but when we'd get to the car, I'd cry. Sometimes I couldn't even make it to the car. You see, you, Samantha, are so tender to me. I can't really explain how much I love you. So, when other people aren't kind, or insensitive rather, it makes me sad. Couldn't they all see that you weren't so different? You are a person, a little baby girl. You breath. Your heart pumps blood throughout your body. You are a daughter and granddaughter.

After a few months of this, I decided that I couldn't live my life that way. I prayed a lot. And I came to realize that you are different -- and I became increasingly ok with that. See, now, yes, you look different than other people. You are small. Your head is smaller. Your hands are tight in fists. You hold your arms curled tight. You walk with a staggering gait. But, you also have a different mission. I believe that you are here to teach us -- and I'm not just talking about our family, but the world -- to be more compassionate, kind, loving, patient, Christ-like. That is incredible.

So when people say something that isn't so nice, just remember that you are different, and that's ok. That's how Heavenly Father wants you to be -- so to Him, and me -- for now, in this life, you're pretty perfect.

I love you.
Mommy

Now I Can ... begins

2011-01-12T16:30:00.000-08:00

Samantha, we've been told, responds well to therapy. I'm not sure how long that will last, but she does. She responds well to this new therapy we're doing at home, she responds well to PT and OT, she responds well to water therapy...she responds and she does it well. Great.

So when I heard about Now I Can, I wanted to try it out, now. while she's young. while she's "responding well." Echo (our PT in Spokane) recommended Sammy have some intensive therapy. She said Sammy'd be a good candidate. Also, intensive therapy (4-5 hours a day for a few weeks) has shown to have greater results than 1-2 hours a week (which is what we do now).

I had been putting it off, just because there were other things on my list, until the other day. I get their monthly emails, and there was the email address to Jon. He's the financial guy in their office. I thought, "Why not get information?" And, so I shot him an email. He responded the next day (today). He gave me his phone number and I called.

The awesome thing about this, is that he's going to call my insurance and find out if they cover anything and what and all that jazz. My list just got way shorter. I like when people do work for me. It makes things easier.

So, I'll wait until I hear back from him -- probably in the next couple days -- and go from there. I'm hoping our insurance will cover something. That would make me happy. But, who knows? And if not, that's ok too. It just means more fundraising...but I'm thinking this is worth it.

My Biker Girl

2011-01-11T13:25:00.000-08:00

Grandpa sure did it this time. He made Sammy some adaptive bike pedals and bought sheer delight to both her and her mommy. That's right. Sammy'll be trying to ride a bike ladies and gentlemen. Watch out!!!

Trying to push the pedals on her own.

Feeling like a big girl.

Well, we all fall down sometimes, right?

One Smart Cookie

2011-01-07T21:37:00.000-08:00

I'm talking about you little Sammy Sam. The other night, I was thinking about all the things you're saying and trying to do, and I realized something. You are saying things like "I go" and "I kicking." We think you are sincerely saying "I don't want to." Now, that last one may be a mimic in full, but you use it appropriately. The thing here, though, is that you are using the pronoun "I." I have never said to you "I go?" Never. I ask you, "You go?" or "Are you going?" I never use I for you. This only leads me to conclude that you have figured out, and understand, that I means you! So, you get that when you use I, you are talking about yourself. This is a big deal. That is a big concept.

What does this really mean!?

What this really means is that you are one smart cookie my friend. That's right. YOU. And, this also leads me to believe that you understand a lot more than you can let us know. All this knowledge is hidden in you. Some of it's because you can't verbalize too much yet -- you're still discovering new sounds and are figuring out how to use your mouth and tongue to make sounds and words. Some of it's because your body limits you. If we tell you to do something, you may know what we're talking about and maybe you want to be obedient and do as you're told, but you either physically can't do it, or perhaps you can't figure out just how to make your body do it yet. But, some of it, I'm sure, is because you're perfectly happy doing whatever you want to do. You've got a good deal going on here...and if we were to catch on that you know more than we think...oh boy, things would change. Am I right, or am I right? I know, you're thinking, "Let them think I don't get it. That way, I can keep throwing things, licking the table, chewing on things, breaking dishes, yelling and screaming whenever I want (in a playful way of course, but still distracting while in church!), and pretty much getting away with everything."

Well, we're catching on little lady. And, just because you're so dang cute, you'll probably keep getting away with a whole lot. Wait a minute! See! You even know how to use your looks to get your way! Unbelievable! You're one clever little girl Sammy Sam Sam. I sure love you.

Gibber Gabber

2011-01-06T14:18:00.000-08:00

Samantha,

You are talking so much these days. I'm not sure why, but you are talking up a storm...or at least trying. It's encouraging, to say the least. I love hearing your babbles. On some level I suppose this was what it was like for me when Callie was an infant. It's fun to hear different sounds and to see and hear communication progress. But with her, I expected that progress. I took for granted her speech development. I was amazed by it, but I took it for granted. With you, every new sound you make thrills me because I never know what to expect. I've tried to translate this over to Callie and any of our other kids -- to be thrilled with each step...not to take anything for granted. I'm trying to not just live life, but marvel at it a long the way. Thanks for teaching and reteaching me that lesson.

So, what are you saying? There are a few things we know for sure, and some that we think for sure. I'm going to count them all. Scribbles and Giggles keeps reporting to me that you talk nonstop. So keep it up girl. We're all loving it!

Love
Mommy

I'm pretty sure in this picture you're saying "Holy cow Mom! Did you see that car?! We need one of those!" And of course you're right, ya know.

Changes

2011-01-05T15:03:00.000-08:00

Little Sammy Girl,

Lately, I've been a little 'lax, to say the least, about doing therapy at home with you. Holidays came and went, and so did my motivation to do much besides exist. You've been incredibly happy lately, and I love that. Christmas and New Years were really fun. But now it's time to get back in the saddle and work. It's hard for me, for some reason, to get motivated. Partly, it's because I'm so tired. Worn out. Exhausted. But I feel like we need to get back on track and I need to just do it.

Your school schedule has changed, and that has also been hard. I'm not sure how you're doing with it, but I know I'm exhausted. You've been switched to the morning class. Before the break, your teacher called and asked how I felt about it, even though no matter how I felt about it, if I wanted you to stay at Argonaut I'd have no choice. So, I rearranged therapy, work, and Scribbles and Giggles and we're making it work. We used to have pretty easy, laid back mornings. Now, I wake you up at 6:45am Monday through Friday. The good thing is that so far you are happy. The bad? I'm tired, really tired. And I had forgotten how difficult it can be to have you home to wreak havoc! You have a way of getting into everything. You're very talented young lady. Even with that said, it's nice to have you home. I didn't realize how much I had missed having you and Callie around, together. Just us girls. I used to be getting you ready to get on the bus to GO to school at the same time you are coming home from school now. It's quite the adjustment. Another change. But it'll be good I think. If only we can both last.

Yesterday morning, Grammy woke us up and said, "Doesn't Sammy have to get the bus?" WHAT?! Yes. It was 7:22am. The bus comes at 7:30. I learned that I have to set my alarm every morning. When I took you to school, your teacher told me how well you had done in the morning class. "Sammy was the star of the afternoon [because you had a lot of one on one time], but I can see she's already watching the other kids and there will be some really good modeling for her." That's good news. You were the only ambulatory child in the afternoon. That was fine until new kids came to the afternoon, and they can't keep up with you when they have to give a lot of care to these other kids. So, into the morning class you go. And I hope you'll learn from these other kids. I hope you will see all their good movements and words and try to copy them. You're one amazing lady Sammy.

I love you,
Mommy

Family

2010-12-30T20:04:00.000-08:00

Samantha,

You have a lot of people who love you. You really do. Callie adores you. Today, we went hiking around Castle Rock. I was walking with Callie, and she asked, "Where is my sister Sammy?" I told her that you were with Uncle Colin. Callie replied with a sincere, "Oh. I love my sister Sammy." She always qualifies you as her sister. You're her sister, Sammy. You, likewise, love Callie. You really seem to light up around her, and it makes me so happy to see it. I hope that as you both grow up, you're bond will continue to grow. I felt so strongly when Callie entered our life, that a big reason for her coming to our home was for you. I felt so so strongly that she was meant for you almost...that you two make a match of some sort. I love you both so much.

And then there's your cousin Nathaniel. Callie called him Famel, and that seems to have stuck. You and Famel are pretty tight too. He seems fascinated with you and you're pretty fond of him yourself. I'm not sure what it is. I've thought about it a little bit, and maybe it's because he's so fresh still...so new and clean and pure that he is able to more fully see people for what they really are. Maybe he was told about you before he came down. Or, maybe he watched you, knowing he'd be your cousin. Or maybe he just thinks you're super cute. But you sure make him light up, just like you make us all light up.

I sure love you Sammy. You're on wonderful little lady and I feel so blessed that you are in our family -- or rather, that we're in yours.

Love you,

Mommy

The Grinch Who Stole Christmas

2010-12-27T13:56:00.000-08:00

Samantha and Callie's acting has yet again astounded us all. We hope all your Christmases were merry this year.

Note from School

2010-12-02T10:11:00.000-08:00

The following note was in Sammy's lunch bag when she got home from school yesterday:

Jenny,

We tried to feed Sammy her yogurt and granola but after a couple of bites she said, "NO!" So, we stopped coaxing.

She wanted to drink a lot of water, though, so that's good.

~ Argonaut Staff

This makes me smile.

Still True

2010-11-22T21:16:00.000-08:00

January 2009

I wrote this post for Kidz a little bit ago. It was posted today. Over the course of a few weeks, I have certainly had my rough days with Samantha. In fact, just the other day I was so frustrated getting her dang Theratog on her...she kept grabbing the velcro and pulling off those tabs before I could move on to the next part. It was frustration beyond belief! But, I have to say, in spite of her stripping off her theratogs as I try to put them on, I'm convinced Sammy's pretty close to perfect, and I still believe every single thing I wrote in that little blog post. She's an angel.

Need to Clarify

2010-11-17T08:15:00.000-08:00

I recently made a post on Kidz about the book What To Do With Your Brain-Injured Child. There was a very valid comment and concern that was posted, and I feel compelled to reply to that, though I found I couldn't stop once I got going...so I decided to create my own post to help explain our process and experience a bit more. I want to repeat that I truly feel like this comment was very valid. We should question things. When we read something that contradicts information we have received, we should investigate. That is what I believe. So, I thank this mother for posting that comment and making us all aware of what's out there. If we didn't share these things with each other, there would be no point in Kidz. What community would we be if we neglected to share information with each other? So, thank you Tiffany. Now, though, I feel like I need to clarify some things...maybe why we choose it instead of coming off like I was announcing to the world the best thing next to sliced bread. ('cause really, who can beat sliced bread?)

Below is what I began to post, and thought I'd just post it here instead:

Thanks for sharing that site Tiffany. I think it's really important that everyone know the full picture and not go into anything blindly, especially when it comes to helping our children. I immediately went to the article and read it. And, though I understand what is said, I question it on some points. My regular PT, old and new, use patterning with Sammy during our sessions...so the issue of patterning I'm quite comfortable with. And there has been more recent research that shows evidence of these techniques...and they aren't connected with Doman. Now, I honestly wouldn't put full stock in his institute, only because what I've heard is that they stay really strict to what Glenn Doman, the founder, developed. There was a group of therapist who broke off from Glenn Doman's group over the past few years (maybe 10) and started implementing new research with the old...what Glenn developed. As I think about the program we do with Samantha, there's so much more than the psychomotor things that the article speaks of. In fact, we are currently doing little of that (if any come to think of it). Instead, it is sensory intensive...but perhaps that's thanks to the group that has broken off? I feel comfortable with our therapist who uses a combination of her training with Doman, but also newer methods. Perhaps the institute in Utah is among those people who broke off? I'm not sure. Our therapist works independently but is connected with the Family Hope Center in PA.

Due to my husband's recent job (yeah!), we just changed insurance companies. We had to switch all doctors. (not yeah!) When we met with our neurologist, I answered all her questions and informed her about Samantha's history. I then told her about this new therapy we were doing. As I explained it to her, she encouraged us to continue with it. It made sense to her, based on her knowledge of the brain. Of course it was a condensed version I told her...but I told her what exercises we were doing with Samantha 5 days a week. She seemed to fully approve and, again, encourage us. It was a validating experience if nothing else.

Anyway, this could be such a long comment...a post in fact:)...but ultimately, there are 2 schools of thought. One is my husband's: you need, not just facts, but enough of them to make it substantial. I agree. Mine: Sometimes, if something works, I'm not going to wait until they come around. If it's anecdotal evidence, sometimes that's enough for me. My mom and dad think echinacea cures their colds. Studies have shown NO evidence of that. My parents are never sick. It drives my sister crazy and she's always telling them they're crazy!:) I know, placebo effect...but hey, if it works and it doesn't hurt you...(though, I really do feel like at the time I was well enough informed. I read books and articles and talked to those who had used the method. I felt good about it.)

Could this therapy hurt? Yes! Though, I don't see how it can hurt the kids. Based on the article I read, I can see how it could rip a family a part...the time in intensive and it's quite expensive if you go to the institute in PA. But we haven't had that experience. It's quite inexpensive through our therapist (a mother who got into it for her own son...and then started doing it to help others...now traveling all over the world with clients from CA to Hong Kong), and I have felt nothing but support and encouragement knowing that anything I can do will help, even if I don't do my program 100% -- which I've never done. I actually felt far more stress 2 years ago when I was driving to 6 therapy appointments in 5 days. I had little life and was tired and busy and it was very hard to do that with a walking 9 month old in tote! Yikes! For us, this book led us to our therapist and it's been a great experience.

I feel a little sheepish now though. I hope I haven't come off an idiot or uninformed, but I really did research quite a bit before we decided, and we felt good. But perhaps I should have stated the information differently in the post. I guess, I believe the biggest things is feeling good about what you do. We're religious and so spent a lot of time praying about it and feeling, actually, guided to it and our decision. But others could easily say that was false hope. For me, it's different. But it's important to feel good about whatever therapy or medicine or doctor you decide on. We felt like when we began, we were/are ok with Sammy being the way she was/is. I'm not searching for a "cure" (which admittedly it seems like Glenn Doman says he can provide in many cases) just for something that will help her, aid her, in her progress to be whatever she is supposed to be...and I'm ok if she's supposed to be just like this the rest of her life. She's incredible this little bundle of fire! For me, though, I need to know I've wisely done what I could. And, that may be just being her mommy, no therapy at all. But, for now, I think there's something for me to do.

Sheesh, was this too long? Yep:) If anyone has further questions, let me know and I can tell our whole story, or it's in pieces on our blogs. But again, no matter what, it's so important that we feel good about what we do and choose for our children -- no matter what our school of thought -- because they're our babies. I don't think there is one Cure All out there. And Doman made me skeptical based on all his work helping a vast range of people...but it just felt right for us.

I think there are a lot of parents of special needs kiddos are able to say, "Wow. Look at what they are doing in spite of the diagnosis." To me, that's proof of the potential within our children. I see Samantha doing wonderful amazing things and think, "You, little girl, are a miracle." So, it makes me wonder...what if I were to find what works for her, that somehow unlocks the door to allow more of that to shine through? What if I understood the brain better, how if functions, how it changes, how it's so easily molded, and use that knowledge to help her and my other kids? For me, through priesthood blessings and prayer, I feel like I've found something that works for her, for now at least. I haven't given up on other therapies. We still have PT and OT in and out of school...and I'm looking into Now I Can for an intensive session. But, I feel so much peace about our decision with this. No matter what, though, Sammy's always our lil' Samsquatch. One heck of a girl.

So, anyone want to read a novel? Because if you made it through this comment, you just did:) (you may be able to mark it on Goodreads! ha!)

Still There

2010-11-16T11:15:00.000-08:00

Sometimes I can get a little excited about momentary happenings...like Sammy saying words, and then she doesn't say them again for a long time. I still classify all those "little" things as BIG things and usually it doesn't get me down. But I get extra super excited when I notice that whatever it is I saw is still there days after. Like, saying "more" and "water."

Today, before the bus came, I decided to be unhealthy and let her have some cake for a mid-morning snack. It was there, I thought, what the heck. It's good motivation. I gave her a bite. "mmmmm" I gave her another bite. "mmmmmmoo" I went to give her more, but she just smiled, as if she was thinking, "Come on Mom. We both know you're going to give me that cake no matter what I say." But I didn't. I didn't give her that bite until she said, "mmmmmmmoo" -- and she did.

Her mouth was getting pretty dry. I thought she may want water. I held the cup, and before I could ask her, she said, "wa-ya. waaaa wooo." I'm calling that water.

So, it's still there. The girl's got words.

Words Words Words

2010-11-14T22:04:00.000-08:00

The other computer is down and so I won't have any pictures to share for a bit, but we have some good news today.

Words! Samantha didn't say any NEW words today, but she said significant meaninful words.

While she ate, she clearly told me "more" over and over again.
I asked if she wanted water, and I swear she said "water" and started immediately drinking from her cup.
Later, when we were doing some therapy, she was very unhappy about the light in her eyes. I said, "Sammy, if you want me to stop, you'll have to tell me 'no'." She looked at me and said, "NO!"

I love her words! This was a very exciting day, indeed!

Therapy Update

2010-11-10T15:31:00.000-08:00

Samantha dear,

Well, we are back on track, I'm happy to report. Yes, I took a couple weeks off doing some therapy with you, and it was hard to get going again. We were hitting...oh 50% or something. I hated that I wasn't doing what I should be doing, but I couldn't find the umph to do it after all of us being sick.  So, I decided to SNAP out of it. And I called Patty. And it did the trick. I think I just needed to hear that it was ok to take those couple weeks off while we were sick and then just do the best you can do. After all, she said she just did the same thing with her kids...and she informed me that Decembers in their home is pretty much therapy-free. It's good hearing from other moms doing the same thing.  I never thought I was someone who "needed" that...a group of sorts to buoy me up. But golly it looks like I am after all. What have you turned me into lil' Sammers?! Oh, I love you for it.

So, here's the official update lady. I'm really proud of you. You've done some great stuff lately.

Eyes: I think your eyes are officially dilating and constricting like ours. Quickly. They shrink up pretty fast when we can actually get a look at them. Today, while you were eating breakfast, I flashed the light in your eye. I know. We weren't in a dark room, but we were pushed for time and I wanted to do it. Even, in the daylight, I could see an immediate change ... shrinking of that pupil. So, that's that. We'll keep doing it until we hear differently, but I think your eyes have actually been like this for a while now. So, yeah! (Hopefully when Donna comes back in January she'll agree.)

Startle: Remember how before, when we'd try to startle you by banging pots and pans or blocks together you just looked up at us like we were annoying you? Actually, most of the time you'd smile at us. It's cute. Well, I didn't realize what we really needed was for you to jump a little bit. So, we've been working, and your startling has WAY improved. We were hitting about 50% on a good day. Now, we're getting between 70-90% of the time. I have decided that the times you don't startle, I think it's becuase you see me and what I'm about to do...but I carry through anyway. See, I'm supposed to be sneaky about it, and this mama just isn't always so sneaky. Because, really, you are beginning to startle to noises just around you more often. For example, I turned the stereo on and it was a little loud...a song was playing...and you were shocked, but then smiled. A door slammed yesterday and you startled. Callie threw something on the deck (yes, out of 2 year old anger). You were inside, but the door was open. You had been concentrating on some task and when you heard that, you startled...immediately popped your head up and had a look of concern. So, I call this improvement. But, again, we'll continue to do it. I'm not confident that you have it yet, but I think you're making fantastic progress here. And let's be honest, it's kind of fun to scare you.:)

Textures: This is the hardest for me to do because I don't think I have a really good variety of textures...so I'm working on that...but also because it takes longer. I know, we're talking seconds here, but still. You're not too cooperative during this either, so it's just the exercise I dislike. Ok? There it is. I don't like doing this one so it gets put off. In terms of progress? I think it's about the same. I can tell you like or dislike certain textures, but I'm thinking it's not enough.

Sound Location: Hello! Huge improvement here. Really.  You are starting to be able to locate sounds almost 100% of the time...quickly. I've only been focusing on periphereal, above and below. But, I've noticed you turning to sounds that are behind you. These aren't sounds that I'm creating for therapy, but just sounds. So, you're more quickly picking up stuff behind. Yeah. I'll be starting to work on that next. I want to finish the week off strong and I want to practice with some more higher pitches this week. It seemed like there was one that you were slower at finding...and I want to make sure you get that. I'm not sure if it was the pitch or the distractions in the room.

Smell:  Well, I've discovered you don't like cloves.  Either does Callie. I don't get it. mmm Cloves. Oh well.  We'll keep introducing you to smells though until I get some more, real distinguishable likes and dislikes here.

Hands: I love your hands. I feel like, again, they are just so much more open. I'm trying to work on having you USE your open hands now more effectively, but ya know. In time.

Babinski Reflex: Same. You are in new DAFOs now that are set to neutral. Before you were in a heel kind of, which I totally hated, but you had lost so much range that we had to put you in those stinky heeled DAFOs. But now, you're in neutral and are standing up so much straighter and are a super star. We are working on integrating your Babinski reflex.  Your new neurologist actually thought that you had an integrated babinski in the one foot, but then you didn't do it again. So, maybe that's a sign of improvement...headed in the right direction.

Keep working Sammy. You are awesome! You impress me everyday.

I love you,
Mommy

Sisters

2010-11-05T08:49:00.000-07:00

Sammy,

You have a little sister who loves you so much! It's really sweet to watch. She's (mostly) happy and caring and tender and wonderful to you. The other day, while you were at school, we went to the park. On the way there she said, "I want to go to the park with Sammy." She kept insisting we get you from school so you could play together. While we were at the park, she was telling her new friends there "Sammy is my sister." She loves you. And the cool thing is, even if you don't always cooperate with her hugs, you pretty much love her too. You light up when you see her. She makes you smile and laugh. It's pretty fun to watch.

Feeling blessed,
Mommy

Oh That Face

2010-11-04T09:23:00.000-07:00

Samantha,

You have the most expressive face, and I love it! I'm grateful for it. This is just a quick sampling of some of your funny and happy happy faces -- that first one is pretty stellar, don't you think?

I love you!
Mommy

Oooooh my...

2010-11-03T14:47:00.000-07:00

you never cease to make me laugh.

Cutest Patient Ever

2010-11-01T14:02:00.000-07:00

And that's one pretty cute doctor too.

Happy Halloween 2010.

And Chloe...though I don't know you, I'm not feeling any creep-factor. Read all you want.

Seizure Meds?

2010-10-24T23:14:00.000-07:00

Dearest Samantha,

You have been such a little gem the past two days. You have quite honestly glowed and it's been so fun. Today, in particular, you were a delight. I'm talking pure delight. Good stuff there. You smiled a ton. You giggled. You enjoyed a 2 hour walk with me without complaint. It was a good day. And, though I'm not sure what will happen tomorrow because of it, we forgot to give you your seizure medication this morning. And it just makes me wonder...how is this stuff really affecting you? I mean, I know it helps with the seizures, but how does it make you feel? I wonder if it makes you sleepy and thus, irritable sometimes. Though, honestly, you are usually a happy girl, but even still...I wonder. The days we have forgotten your morning dose (we are responsible, I swear), usually on rushed Sunday mornings, you are purely magical...people become even more smitten by your smit-ability. My dear, you are quite charming. But, we will continue with the medication until you are stable (seizure free) for a year. Sorry. Doctor's orders. We'll see. But I sure love you, even when you're a little cranky.

Forever your mommy I'll be.
Mommy

Too Cute

2010-10-21T14:18:00.000-07:00

There are many reasons why people blog. Some people do it to make their voice be heard...to take a stand and spread it to whoever will listen..er...read. Some do it to connect to other bloggers. Others do it to journal. I lean towards this. I use blogging to remember thoughts, feelings, etc. But, I certainly do it to connect with others -- especially with Sammy's blog. I created this for her/me/our family to remember this time and to be able to recognize God's hand in our lives. Through seeing the ups and downs of it all, hopefully we'll be able to also see the miracles and the purposes behind it all. Definitely, as I've read older posts from our family blog, I'm reminded of the tender mercies from the Lord. It's been a cool experience.

But it's also super fun to see pictures like these from time to time. I stumbled across these pictures of Sammy and was just, well, delighted to say the least. Recently, I've noticed how old she's getting. Her looks really are changing. And as cute as I think she is, there's always something about "baby" pictures, or younger pictures. She's too cute! What a babe. ahhhh

Microcephaly

2010-10-19T15:39:00.000-07:00

Microcephaly affects 2 - 2 1/2% of the entire
population. Microcephaly is COMMON - it is far more
common than other well known disorders (i.e.
Autism). Microcephaly affects more than 25,000
infants in the United States each year.

If it's so common, how come nobody seems to know about it? Whenever I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have to explain this statement above. It can be tiring. Sure, Sammy's type of microcephaly is rare, but microcephaly in general isn't. And how come whenever I type it in, there's a red squiggly line underneath "microcephaly" and the spell check doesn't recognize it as a word, even though it's a legitimate condition that 25,000 infants are affected by each year in the USA alone? I'm not sure, but I'm feeling a little...blargh...about the whole thing today. I guess I need to think of it more like...every time I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have the opportunity to educate them. That would be a better attitude. But come on...

I think about all these other conditions/diseases/disorders that are raising good amounts of money. I don't want to discount their work or their need...that's not my point here. But I wish microcephaly somehow was able to gain more recognition so that we could find out stuff about this...about my child. I'm glad when people raise a ton of money for their kid's cause; again, that's not my point. It's just...sometimes I feel -- discouraged? I'm not sure that's the right word either.

Guess it's just one of those days.

Neuro Therapy Update

2010-10-19T11:45:00.000-07:00

Samantha,

We've been working really hard, trying to do all your therapy as best we can at home. You still get PT with Kathy and OT with Tiffany through CCS, but we are supplementing with this therapy at home. You know the drills. You scored really low for your neurological age. Bummer. I think you tested at 7 months! Woa lady. You aren't 7 months anymore. So, we're helping you get neurologically older.

There were some basic, life saving skills that you lacked that we are trying to develop. Like, you don't startle to loud noises. Tell me, what would I do if you had walked out in the road, a car was coming by, honked their horn, and you laughed? Because that's what you do now with loud noises. Not even a cringe. This isn't good Sammy and I can't imagine losing you that way. How about eating anything...even if it smells Nasty McNasters? There's a reason things smell the way they do. We aren't supposed to eat molded food or excrement. You want to put anything in your mouth. So, we're working on your olfactory sense. We're helping you smell better. When Donna poked you with a pin, you didn't give any sign of discomfort until poke #10! Girlfriend! Are you kidding me?! Sure, she wasn't piercing the skin, but it was unpleasant when she did it to me...and it was for you too. But your reaction is a bit slow. So, we're sharpening up the sense of touch by rubbing textures all over you. I'll explain it all to you later. In the meantime, keep letting me do what I need to do. Ok? Because I sure love you.

I'm going to keep our progress here for you. Then we can go back and check it out...see the progress. I love you sweet girl. You're doing great!

Eyes: We are using a flashlight in a dark room to practice dilating and constricting your pupils. I think you've made improvement here. But I still need to compare your pupils with Daddy's. You have started to hate doing this, so I give you an M&M after each time. You're a little better during the sessions because I think you anticipate the chocolate? Or maybe because you're just giving me a break on this one.

Startle Reflex: You are starting to startle about 50% of the time now. That's an improvement. You still giggle, but it's after a little jump.

Hands: We're working a lot on your hands, and girl, I've seen a ton of improvement here. I didn't even know if you could open your hands! Ok, I'm exaggerating, but still . They are always so tight and red; but now, your hands are much more open. You are gripping things better. I think this has to do with this exercise combined with the texture exercises.

Babinski Reflex: So, tell me Sammy. How are you going to properly step if you've never integrated your babinski reflex? When something hits your foot, your toes still curl upwards, like an infants. Taking a step will be harder if your toes naturally want to curl up. So we're still working on integrating that to making your toes push down, like mine do and Daddy's and Callie's do. You'll get there. Hey, you're walking and they said you wouldn't. So I know walking properly can be done.

Textures: You are much more quick to get goose bumps and tell me you aren't happy with a rough texture. You laugh, but it's a complaint. It's on the verge of yelling at me or crying. Whereas the soft textures, you giggle or smile. Futhermore, young lady, when we were at Dr. Nachbauer's last week, you developed a poopy diaper and you really complained and cried until I changed it. You have never done that before Then I got report from Nicole at Scribbles and Giggles that you did the same thing there. So, I'm pretty excited about that. You should want your diaper changed, and now you do. Yippee.

Locating sound: I'm still working on sounds in front of you and in your peripheral range. I know you can hear. That's never been the question. But you have never been able to locate where the sound comes from. You struggle the most with up above and to the sides. But you've improved a lot on your left side...the right side, last week, was still lagging. Now, though, you are consistently responding more quickly to sounds on your right. This has been fun to watch the past 2 weeks because there's been a lot of improvement.

Smell: I've seen a change here. I've mainly been working on good smells. We've done lemon, orange, cinnamon, mint. I just don't have a good variety of "bad" smells. Ok, I have none. I really need to work on that. Anyway. You are starting to really smell them instead of me just passing it along your nose...and after you smell it, you want to eat it. Before, you wanted to take a bite out of it before you even knew what it was. Twice I've taken a nasty diaper (I know, is this borderline abuse?!) and passed it by your nose. Yuck to the max! Both times you cringed. You pulled up her nose, turned your head away, and pushed my arm away with your hand. So that's HUGE progress I think. Remember when you wanted to eat the barf smelling thing that Donna put in front of your nose? Gross.

So, we're making progress sweet girl. Just keep on keepin' on, and we'll see even more changes...I just know it.

Love you!
Mommy

Smile

2010-10-16T13:57:00.001-07:00

Samantha,

Before the school bus comes is a happy time in our house. Not that we're happy that you are leaving for a few hours, but you always seem really happy. Maybe you are anticipating school. I think you really like it there. You like your teacher, Kathy, and the aides, Claudia and Sharon. And they sure love you. A lot.

Most of the time, we wait outside for the bus. We sometimes wait for the school bus inside. When we're inside, you like opening and closing the front door, playing with the shoes (and when I say "playing" I really mean throwing), and playing the piano. You're one talented girl, you know that?

Here are some pictures from a little bit ago. You sure looked cute that day. The video isn't the best, but it makes me smile whenever I see it anyway.

I love you!
Mommy

Standing Straight

2010-10-07T10:00:00.000-07:00

Aside from that crazy look, I sure like the way you're standing straight Sammy! Good work! Keep it up little lady.

Smurfette

2010-10-06T12:25:00.000-07:00

A few Sundays ago...after getting home from church, we went in the backyard. Um...actually, I took a nap and Marcus took the girls out back. When I woke up, Marcus led me to Samantha so I could check out the newest Smurfette. Yes, she started chewing on the chalk. Non-toxic chalk? I hope so. Sheesh. She does look good in blue though.

mmmm

2010-10-05T12:15:00.000-07:00

I love Sammy Stew!

I Know

2010-09-30T15:55:00.000-07:00

Samantha,

There are some days when I am so sad that you can't just tell me what you want, need, or think. It's not so much because there's this inner-aching within me to hear your voice...though that is there definitely, but because I simply want to know. I want to know what you're thinking. I want to hear everything you have to say. And yes, I'd love to hear your tiny voice tell me the things all moms want to hear...that you love me. I melt every time Callie tells me, so I'm pretty sure you, Sammy, saying it would have equal effect. Today you spontaneously kissed me for the first time in a VERY long time -- though you freely give kisses to Colin! -- and it made my day by the way.

My friend sent me the Meaghan Smith cd. There's no secret, I'm totally loving this girl. I love her style, her awesome voice, and you and Callie love dancing to "Heartbroken"...but when I got to the song "I Know" I immediately thought of you and all of my favorite scenes from your life passed through my mind. I know this is a love song, but I'm so in love with you -- my tiny little girl. And whether you can vocalize it or not, I'm pretty sure that I know you love me too. And I'm pretty sure, one day you'll tell me in words. And I'm also pretty sure that every time I hear this song, for the rest of my life, I'll be thinking of you.

I love you!
Mommy

It's in our hello
In the way your smile glows
And it's in our good bye
In the tear in your eye
And all in between
When you're lookin at me

I know, I know, I know
What you don't say

It shimmers through
In the things you do
When you write me a note
And send it by the post
What you might not sign
On that bottom line

I know, I know, I know
What you don't say

Words are not needed
And though my ears
Could be misled
My heart can hear instead
What goes unsaid

You'll leave me with this
A hug and a kiss
And that little phrase
Those three words
You can't say
But please don't feel blue
Cause I always knew

And I know, I know, I know
And I love you too

Sweet Moment with Samantha

2010-09-27T17:06:00.000-07:00

I've been looking for this picture for a long time now. I haven't been able to find it. This was taken a few years back. Just days before Samantha had her craniosynostosis surgery, our friend, Jeff Allen, took some family pictures for us. He's a fabulous photographer and you can see some of his work here. (Plus he has an awesome wife.) He got a good family picture for us, but this was my favorite picture of the entire day. I am so self-conscious that it's hard to get a picture of me in the moment. I'm always so worried about my big nose or uneven smile...(I know I know...I need to work on that...blah blah blah...be confident...blah blah blah). So, because it's not-so-easy to get an in-the-moment shot, there was just something about this picture that is so precious to me. It is that instant...that sweet moment with Samantha...when I'm just talking to her and being her mom...protecting her from the cool March air. I love this picture.

Jeff, I'll always love you for capturing this moment for me. Thanks.

A Plea

2010-09-25T23:03:00.001-07:00

Samantha,

For the love....STOP waking up at 4am. And if you do, go back to sleep. No more. We're done.

My threat stands. If you keep waking up like this all next week again, I'll still love you, but I make no promise that I'll like you all that much -- at 4am anyway -- you usually have a way back into "like" by around 8am anyway you tricky girl. But really, just because your grin and giggle makes me weak does not mean you are allowed to wake up when it's still very dark outside. It's not good. Not good at all.

I'm standing firm.

I love you.
Goodnight.

Mommy

What To Do About Your Brain-Injured Child

2010-09-21T14:36:00.000-07:00

I don't know where to begin. About 6 months ago my life took a dramatic turn. Someone introduced me to Glenn Doman's work, and I began reading all of his books. They were basic parenting books -- how to give your children knowledge. I thought of Callie as I read the pages, though my friend said she thought it would be good for Samantha too. It wasn't until a few weeks ago that I read What To Do About Your Brain-Injured Child. This book is, to say the least, revolutionary. In it, he details all their research and how his program came to life.

After fighting in the Battle of the Bulge (interesting), he became a physical therapist where he worked with many stroke patients -- old and young. After a years time of massaging, stretching, doing exercises, no one showed any improvement, and some, even, were worse. How could this be? What he realized was that the traditional methods (back in the 1940s, 50s, and 60s) were only attempting to correct the symptoms of the real problem. The real problem is what he calls "brain injury." The injured brain could have received its injury before the baby was even born. Or, the injury, such as stroke, occurred later...post-natal. Of course this is the reader's digest version of the reader's digest....but he got a team together -- with Temple Faye (renowned neurologist...interesting article using his methods for autism found here) and other knowledgeable people in their fields -- to work together to come up with some answers. Why aren't people getting better? How do we fix the brain? What are parents supposed to do with their brain-injured children?

After coming up with a "plan" to help their patients, the results were phenomenal. As they did "exercises" that "exercised" the brain, patients were walking who had been in wheelchairs their entire lives, blind patients were seeing, deaf patients were hearing. Nearly 100% of their patients showed improvement after a year's time, and most showed significant improvements.

Doman and his team didn't claim to be miracle workers...just doctors who wanted to really fix the problem. He said there are a few cases that they couldn't help. But due to the impressive results, the received funding necessary to open a clinic and doctors and patients were coming from all over the world to Philadelphia to see and learn for themselves. That institute is still there. They still see patients. Other institutes throughout the world have been opened (Japan, Argentina, Brazil) to do this work within their own regions.

What is interesting to me, aside from the dramatic results that they saw, is that at one time these methods were considered extremely radical...yet today, some of these methods are widely used. Patterning. Oxygen therapy. Some of this stuff doesn't sound so strange anymore. Though some of the old school traditional methods are still used, they are often blended with the discoveries made by Doman and his team decades ago. They are becoming more and more mainstream.

I have mentioned this before, but I have always felt like I needed to keep searching for Samantha. I feel like we've had some amazing therapists, but they didn't have all the answers that Samantha needed...and then, Elaine led me here. I can't tell, after all the researching I've done to find out more about these methods, read the medical journals, etc...I can't begin to explain the peace I feel. I don't feel the need to keep searching because I finally feel like we have found it for her.

I don't believe I'm as naive to believe that Samantha is going to be "cured" or miraculously "healed," but I do have faith...and I would even say spiritual confirmation that we have commenced the proper course for Samantha for her to achieve her potential. I'm not looking for Samantha to be healed, I'm looking for her to be the little girl Heavenly Father intended her to be in this lifetime. For many reasons, He intended her to be microcephalic, with seizure disorder, developmental delay, etc. I'm ok with that, as long as I'm doing what I'm supposed to be doing in this lifetime, and becoming who I'm supposed to be, too.

Sammy and I -- and Marcus and Callie and Grammy and Bampa and Colin and Grandma and Grandpa and and and -- we're all in this together. And I'm so excited!

One thing I'd like to mention is that his therapy program, though varying from child to child depending on their needs (just like any other therapy, hopefully) is very parent/family-centered. A therapist came from Texas to assess Sammy and set up a routine that we do with her at home daily. It's been good so far.

Whether you plan on changing your methods of therapy for your child or not, I recommend this book. It's easy to read and understand and is just very eye opening.

LAME

2010-09-20T13:46:00.000-07:00

I know I'm not the smartest cookie out there, but WHY oh why can't I get Sammy's picture up there centered?! Frustration.

Great Expectations

2010-09-18T11:11:00.000-07:00

I've been thinking a lot about my expectations for Samantha. Do I expect less from her because of her condition? Do I expect less from her because others do? Shouldn't I, as her mother, have higher expectations than others do? I've thought a lot about this recently and wrote about it. I decided to share it with Kidz because I thought, maybe I'm not the only one who has experienced some of this...the fear of expecting too much and then getting "hurt," or struggling with how much to expect. You can read it here.

Not Fun

2010-09-17T11:56:00.000-07:00

(PT would not be happy seeing her sit like this! Oops)

This happens every time...and I still never learn. I read about everyone's kids and their seizures, and I remember. I remember the days with 10, 15, 20 seizures. I remember using Diastat every other week. I remember taking turns each night with Marcus, sleeping with Samantha on the couch, just in case she had one and we had to give her Diastat. I was so afraid that she would have a seizure in the middle of the night and not wake up.

We played around with her medicine and dosage quite a bit. Nothing really worked. I started doing craniosacral therapy with her, and amazingly, things started to slow down. She was stable enough that we were able to wean her off of one medication completely (phenobarbital), and lower her incredibly high dose of Trileptal. We did craniosacral therapy for about a year. I found therapists who were kind and gave me a great deal. When we moved to Spokane, WA, our insurance actually covered it and we loved our Shauna! Samantha just loved her. I think she (Samantha) could tell that she felt better when she saw Shauna.

It's been almost 2 years now where I feel like things are relatively stable. Due to the Green Family Funds, we don't do craniosacral anymore. Maybe we will again soon if I can find someone. But even still, Samantha does pretty well. And when I read about seizures again, I can't help but ache for all these parents, and then also think, "Oh I'm so glad we're passed that."

And then something happens like this morning. Samantha has a cold. I am holding her as she is trying to fall back to sleep. I think she's asleep when her head suddenly jerks up. Her body goes stiff, then begins to curl in a little, and I hear the noise...the noise in her throat -- the clicking. We think it's her tongue. She doesn't breath. I put her on her side so the saliva can come out (we've learned from past experience that if we don't do this she often vomits after). I whisper in her ear, "Come on Sammy. Come on. It's time to stop. We're all done now. Come on. Come on. Coooome on sweetie. I'm here with you. It's ok. It's ok. It's ok."

It's not ok. It's really really not ok. Her seizures are relatively short now. 1-3 minutes. It looks as if she isn't breathing, but she gets enough, they say, during that short time that she should be ok. And when I asked her neurologist about her dying from a seizure, he tells me how relatively rare that is. Usually the seizures are secondary to something else that cause the death. But it still bothers me. And I still think about it.

I laid in Callie's bed with Samantha this morning for a long time. She was sleeping, but I didn't want to leave her. I let Callie watch some tv while I just held Sammy.

And then, once she was up, she was fine. You would have never known that her brain went haywire just a few hours previous. Seizures are NOT fun. Never. No matter what. I am grateful for her progress, but I still feel a little deflated every time she has one, and I'm reminded that this is real. That as great as I feel, as optimistic, as wonderful as I can feel about things....Samantha's fragile life is real and there are things that will happen that I don't like...that I will never like. I guess I was in need of another reality check or something.

At least she's still so dang cute!

Appreciation

2010-09-15T14:52:00.000-07:00

Today I was inspired by my friend who's living A New Kind of Perfect. Her post today reminded me just how grateful I am, and I wrote about it over at Thru the Tulips. It's good to have friends that remind you of all those good things in life. Thanks friend!

Redemption

2010-09-14T18:32:00.000-07:00

Well Samantha,

You have redeemed yourself. After a fabulous night's sleep (I'm talking 7:30-6am), you were a delight in school today. You know how I know this? Because your teacher sent home a little note that said, "Samantha had a wonderful day today!"

So, there you go. You're redeemed.

Love you,
Mommy

Shape Up

2010-09-13T21:15:00.000-07:00

Samantha,

We're going to have a serious one-way discussion here, ok? I talk. You listen. I'm your mother -- you remember that. Now...today you received your first "bad" letter home. That's right. I was surprised and a little disappointed. It stated that you were "unbelievably fussy and crying" today. Now now. Is that a way to treat your teacher and aids? Last night I cut your hair. Are you upset with how that turned out? Or perhaps it was because you woke up at 4am. Could we work on that? Do you think if you slept longer you could be happier during the day? Let's put a good honest effort into getting good sleep. Ok? In the meantime, I don't want any more notes from your teacher. You're a sweet girl, and that's how they know you. So shape up missy pants. We all love you and are behind you 100%, but you got to give us a smile from time to time.

Love you unbelievably.
Mommy

Reality Check

2010-09-09T13:15:00.000-07:00

Samantha,

You are a light in my life. In so many ways, you make me a better person. You give me perspective and true happiness. You inspire me.

I'm working on a book ~ because of you. Because of what you have taught me. Because of the road you've led me on. A book. This morning I emailed someone who is contributing a part of this book...and I cried. I wept as I wrote about how her story was inspiring...but I wept because of what she went through. She lost her son, at a very very young age. And I kept thinking of you. What would I do without you? I would feel so empty.

And then I read a blog post of a friend of mine. She wrote about her daughter, Leah. Remember Leah? Though you both are so different, she reminds me of you. Her smile that brightens the entire room. Her big, shining eyes. Her long hair always done up. (I try Sammy. I really do. It may not look nice by the end of the day, but I try.) And then there's the lack of control over your bodies. And the lack of verbal communication that must make it so frustrating for you both. Leah is so precious. She's a good friend to have. And her mom was writing about Leah, about how things happen that are out of their control, and how she fears losing her. I've been an emotional mess. The thought of Leah leaving them is killing me. I don't think it's in the near future, but I ache right now for them. Ache.

As I've been working on this book, I've been thinking a lot about faith and hope. These are good things. Great things. They are what keep us going. And that is precisely why I'm doing this book. But, today, the reality of the lives we live hit me. No matter how much faith you have, there is still real pain. Job was a very good man, but he wasn't spared pain and horrible trial. Faith will help us, but we still have to go through it all, and sometimes, I just don't want to. I don't want my friends to. I don't want anyone to go through it. I can struggle through the years with you, but the thought of having you go...I can't really bear that right now. So stick with me kid. Ok? Because I think I need you for a little longer.

Love you to pieces,
Mommy

Do You Know?

2010-09-08T22:09:00.000-07:00

Sammer,

Do you know how much I love you? I sure hope so. Tonight, you were such a sweetheart, I just kept thinking, "I love you so much. I just love you so so much." You were a little fussy, so I decided a bath was in order. It has always worked for you. Even as an infant...when you were crying non-stop for the first 6 months of your life ~ that was a real dirty thing you did little girl -- not fun indeed ~ a bath would help you calm down. Needless to say, you had a lot of baths. And tonight was no different; the bath calmed you down. You played. You splashed. You talked up a storm! And then after you got out, you played a little more. About 1/2 hour later, I picked you up, getting ready to put your evening casts on, and you were out...like a light! You fell asleep in a manner of minutes, all curled up into my chest. When you are like that, all curled up into me and calmly sleeping...I could hold you forever like that.

No matter the package you came down here in, you are a pure angel.

I love you so much. I just love you so so much.

Love,
Mommy

Rylee's: The Reason to Snack

2010-09-03T12:05:00.000-07:00

Ok, if I had my own chip company, I would totally do this...but alas, I do not. But luckily Rylee's family does. Rylee is a little girl, born with microcephaly. Her family created Rylee's Snacks and I'm so excited about this that I'm about to run to Whole Foods and Trader Joe's to find out how to talk to their buyers and get Rylee's Snacks into their stores! Rylee's Snacks are kettle chips made preservative free, and all that other good stuff, and part of the proceeds go to the Foundation for Children with Microcephaly! How cool is that?!

I've always had a desire to do something really big for FCM...to raise awareness, to raise money, to...I don't know...make kettle chips and sell them to the world! I'm so excited for this family and for the larger-than-we-think "micro" community.

Hip hip hooray!

Read the article on it here.

Hands

2010-09-02T14:14:00.000-07:00

Samantha was born with hands, but she has never used them properly. Most of the time they are tight, balled up into fists. They have been this way since she was an infant. We have worked on having her open them up, and we've seen improvements...but she still has a long way to go. There have been moments when she actually even relaxes and we see her hands laid out "normally" on a surface. That's quite a sight, and I get really excited!

Recently, with our new at-home therapy program we are doing, I do an exercise with her hands. I think I'm supposed to do it about 10 times, but I do it all the time...every time I think about it. And lately, that's been a lot. Plus, Analisa, my wonderful sister-in-law, regularly does these hand exercises with her. It takes about 2 minutes, and we're done.

Results? In 2 short weeks, her hands are opening up. She doesn't fight me anymore. This morning, even, she sat still as I did it...stretching her fingers back as far as they'd go. It was amazing. Earlier this morning, in PT, Kathy was shocked at the use of her hands! She asked me if this was because of the program we had started -- I told her that I didn't know exactly, but there has been definite changes since we started. That is soooo exciting!

We are all born with parts of our bodies for a reason. We have hands for a reason. And what if, just what if Samantha could use her hands better? Maybe she could explore more. Maybe she wouldn't feel the need to put everything into her mouth because she could explore with her hands instead. Maybe, she could one day she could even feed herself! Oh, the possibilities are endless when you can use your hands! AHHH Wahoo for progress!

Workin' the Flashlight

2010-08-31T14:08:00.000-07:00

Yesterday I officially began therapy with Sammy at home. Yes, this new neuro program. We are starting small. For two weeks we will work on one thing, and 2 weeks later we'll add to the program. This week, we are working on Samantha's eyes. Interesting. I've had her eyes checked by a pediatric ophthalmologist at Primary Children's Medical Center in Salt Lake, City, and things checked out fine. But even still, I've frequently had therapists ask me how her vision is. They ask because it's probably routine, but when they ask me again, it's because they feel like her vision may not really be all that great. I know she can see me across a room. I am very confident that she can "see" but how well is she seeing? I do also know that depth perception is definitely not so great. But aside from that?

When Donna came and evaluated Sammy, she noticed that her pupils were rather large. And when she did a quick flash of light, they were slow to dilate. There is a reflex within the eye that causes our pupils to dilate according to the amount of light. If they don't do that properly, then they can't appropriately see images as well...and if she can't properly process the amount of light, how can she possibly move on to a larger "eye" task of depth perception?

One thing that is incredible, is that we can develop this reflex by practicing it. As we do so, the brain gets that stimulation and learns how to process it. So, how are we improving this reflex? Yep. I'm flashing some light in her eyes for a second at a time. Sounds crazy, I know. And many will think this is a pile of bologna...but you can think that. That's ok with me. I was worried about flashing light in her eyes, but then found out that the only dangerous light to our eyes are UV light...and as amazing as the flashlight is, it doesn't have those rays in it. Nope. No tans coming from this flashlight.:)

So, the week begins. I'm to do this 10x a day. Yesterday I did it 4 times. Oops. I have found that it's harder to schedule it in than I thought it'd be. Maybe I just have to get into the routine. So, here's to week one!

Neuro Developmental Therapy

2010-08-27T14:33:00.000-07:00

Samantha has had many priesthood blessings during her short life. All of them have brought me peace in the moment, but some of them I think of often. The words run through my mind and I am constantly reminded of blessings the Lord has in store for her.

When she was born, her great grandfather gave her a blessing. Because of certain things that were said, I have felt that there are things we need to do in order to help her achieve her earthly potential. I have tried very hard to be her advocate...to do whatever we can to help her progress...to take her therapies seriously, etc. But, I'm also just her mom...so I love and hug her as much as I can, and if she's upset...well, I've been known to tell our therapists, "I think she's done for the day." BUT, I can also be one tough cookie. There's got to be balance, right?

There was another blessing she received where she was told her head would grow. I remembered being shocked. Samantha's head measured small in utero, but continued to grow...until she was 4 months old. At that time, her head stopped growing, and measurements have been the same since then (32 cm) and she is now 4 years old. No growth. But, I have faith in that blessing. So, how can that be? Well, maybe in the next life. I asked her neurologist once about brain growth, and he said, "Well, as long as progress is being made, the brain is growing. It may not be measurable, but there's some kind of growth." That satisfied me. I felt like as long as Sammy was progressing, there was fulfillment to that promise.

About 8 months ago I spent many hours reading a series of books by Glenn Doman. I was intrigued and read as much as I could. He has an institution in Pennsylvania where you can get your child evaluated and put on a program. I felt pretty sure that we needed to do this, but I didn't know how to do that. A friend directed me to Patty, a woman in our stake, who had gone through a program based off his research and saw huge successes with her children. I immediately called Patty. She told me her story (her story consisting of 3 of her children) and told me about Donna Bateman...a therapist who was trained by, and continues to work with, the Family Hope Center -- an offset of Glenn Doman's institute, pedagogy, etc.

Long story short -- we met with Donna. She flew out to San Jose and did an evaluation on Samantha. (And, this was way way way less expensive! She's a mom who became trained herself because of her son who had his own problems. She is now wanting to share this with the world...and does.) She did an evaluation on Samantha. She got us set up on a program. And we will begin next week.

The idea is that you need to start at the basics of the brain. There are certain reflexes, reactions, skills that kids should have. If they don't, then we need to go back to those and work on those before we can move on. It's so much more than that, but this post is already too long. We went to a seminar that explains it all (though you can get all the information in Doman's books), and Marcus, who is spending many hours a day studying for the EPPP (psychology licensing test) found that what they were teaching us matched what the scientific world knows and says about the brain. So, no funny stuff here. Marcus, the good man that he is, is often leary about what I introduce. He wants facts. Research. Stuff to back it up. But, he usually goes along with it as long as he doesn't see any danger in it. This time, we both feel so good about this path we're pursuing, and I can't wait to begin.

Side note: Research has shown that with this program, brains grow. And not just how my neurologist told me...but the actual measurements change. I can't help but wonder if we will see any changes, if this will be a greater fulfillment of the blessing Samantha was given. Either way, though, we press on.

This Mare Eats Oats

2010-08-27T13:19:00.000-07:00

Maren, a friend of mine from back in our BYU days, is a fantastic person. Our paths crossed for a short time at school, and we reconnected when I moved out to California. She lives not too far away, and it was fun to know someone in the area. When Maren's daughter was diagnosed with Rett Syndrome, I remembered what it was like to get the news that my life was going to change forever. That I was entering the "special needs" arena. I felt a different connection with her ~ and her attitude, her realness, her drive and determination have made me respect and love and be in awe of her even more.

Recently Maren asked a group of women to share "How I Do It." She asked li'l 'ole me to be one of those women. I was flattered. Today, my post is up on her blog. I have written about Samantha many times, but I've never sat down to think about her and our life in these terms ~ how do I do it? It was good for me to write. So, go on over and check out This Mare Eats Oats...and while you're there, check out the other stories. They are truly inspirational.

Therapy Therapy Therapy

2010-08-26T13:46:00.000-07:00

Where to start? We began therapy when Sammy was 3 months old when we lived in Provo. PEEP -- Provo Early Education Program. It was good for us. Sammy began physical and occupational therapy then. Robyn was our PT. I liked her a lot. She was just like a spunky, fun, young grandma. That's what she reminded me of. She was in love with Samantha -- and I assume that's how she was with all her kiddos. Annie was our OT, and boy did I adore her. She was so knowledgeable, compassionate, gentle...perfect for us. I loved it there, and we saw progress. Annie was the one who suggested craniosynostosis. She told us who to talk to and how to pursue it. She led the way for us, and after much prayer, we knew it was the right path she was leading us on.

We moved to Spokane, Washington. Internship! We would be there for only one year, but when we go the assignment, I felt like we were going there for Samantha. I wasn't sure why, but I felt it.

About 2 weeks after arriving to Spokane, we began therapy! Wow! PEEP connected us with someone to talk with up there in Spokane, and after meeting with her (and Samantha having a seizure in her office), she went to bat for us. Everything was set up so quickly. I went and visited several places to find out who I felt the most comfortable with...and I decided where we'd do PT, OT, and speech. I thought it was going to be a pain because in UT, the therapists came to us...here in WA, I'd be driving Sammy around to different locations for therapy. But, it worked. And not only did things get moving quickly, we were with some of the best in the state. I didn't know this until about 6 months into it though. It was busy. We were doing OT 1x a week, PT 2x a week, speech 2x a week, and craniosacral therapy 1x a week (and hello! our insurance in WA covered craniosacral! amazing!). That's 6 appointments in 5 days. We were busy. But her progress was incredible.

We began water therapy there as well through Center for Pediatric Therapy. (Echo was our therapist...owner and PT extrodinaire. Leanne was our water therapist. AMAZING is all I can say.) Here we were introduced to the TheraTog and Samantha's alignment and posture improved so so much. I was so sad to leave Washington. She made big improvements in the speech areas -- not that she was saying a ton, but she began making new sounds and showing some cognitive improvements. I adore and miss Carlie. The Achieve Center was a place that Samantha enjoyed going. She loved Carlie and always worked hard for her. Carlie adored Sammy, and when we moved and said our goodbyes, she cried with us.

And now we are in California. The transition was NOT easy. It took us so long to get through all the red tape and get into therapy. It took us forever to get evaluated. And it took me awhile to even really trust our therapists. That's more my fault than theirs, but I felt like we came from Heaven and my faith in them, based on our first appointment, well...I was skeptical. But time has shown that they do good things with Sammy. She is continuing to make progress. For that, I am grateful.

But, there is more to be done. I know it. I feel it.

Living Life

2010-08-22T11:10:00.001-07:00

I've been thinking about life lately. I suppose that's a good thing. I mean, we're all living...it's a good thing to contemplate from time to time. But as I was thinking, I realized that I'm not sure how much living I'm actually doing. Lately, I have felt that I'm doing a lot of surviving. You know that feeling? Survival is good. It's essential if we want to live. But see, they are two different things. Within our brain, we have certain parts that keep us "alive." They allow for our survival. They keep our hearts beating, lungs working, etc. That allows us to survive. What is it that allows us to live? Sure, there are higher functions that our brain performs that allow for "living," but first, what is it to live?

To me, to live is to experience. To love. To feel. To learn. We all do this on different levels. We all have different brains that will process information differently. I've often thought about Samantha and her life. I've never once thought that she was merely surviving, because it seems like every moment of her life she is encumbered with hugs, kisses, tickles, and pure love. Samantha lives life pretty well. The girl is a little love bug that people cannot get enough of. And could you blame them? She's a babe. She's incredible. And she's just so dang cute.

As we began a new therapy for Samantha, we were told that her neurological age was about 8.8 months. Crazy. I was surprised, but not all that surprised. Partly because I know she is delayed -- the average of all her tests would have placed her somewhere just a tad higher --, but also because she was pretty sick that day so I figured she wasn't going to test real well. I've thought a lot about it though...8.8 months. And her chronological age is like...50 months or something like that. Would I say she's been missing out on life? No. But that doesn't mean that I'm not going to do whatever I can to help her experience as much LIFE as she can while she's living on this earth. I want to help her develop all her senses, to feel fresh air, to express her needs and wants, to feel textures and gain strong opinions on what she likes and doesn't like (um...in a couple years I may take this back). To experience. To feel. To love. To learn. I will do whatever I can to make sure that she always lives life.

And one day, if her body is tired and worn, and she's just surviving, and I can tell it's time...well, I'll beg for her to stay and live some more before I'll accept that it's time for her to live -- to experience, to feel, to love, and to learn -- somewhere else. BUT, until that day, I'm playing the Mommy role as hard as I can.

Thru the Tulips

2010-08-20T22:20:00.000-07:00

I was asked to share our story on Thru the Tulips. Feel free to check it out.

Also, this month my friend, Maren, has invited several friends to share "How They Do It?" How they survive their various trials. She extended the invitation about a month ago, giving time for them to think and properly write down their thoughts. They all have been so touching to read. If you have time, it's worth going over to read these inspirational stories by such amazing and strong, faithful, incredible women. I feel like I've been made better by just reading their stories. It's worth the time.

Missing This

2010-08-18T14:51:00.000-07:00

Missing the Michigan beach...even if we weren't swimming, it was always a fun day at the beach.

And here's one big PLOP! Sounds louder than it was...at least there's a smile, right?

Where to Start?

2010-08-16T21:05:00.000-07:00

I'm not exactly sure where to even start. Saturday was the seminar we attended for Sammy's new therapy, Brain Development 101, and today from about 10am-5pm Donna, from Parents with Purpose, was over at our house evaluating Samantha and then creating an individual plan for her. I can't tell you how excited I am, and how overwhelmed I am. I don't feel like the work for us will be hard to do -- rather, hard to organize.

This is short. I'm so tired. Sammy woke up at 3:45am and it was a long day with Donna. I will post more tomorrow, but aside from being tired, I feel good. I feel....good.

Progress

2010-08-13T14:56:00.000-07:00

"Progress of the best kind is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step."

- Samuel Smiles

It made me think a lot about my life in general, but mainly Samantha. I look back at as much as I can remember from the past 5 years. I feel like there has been such progress made. While living through it, it's so easy to feel like there isn't much happening or changing, but that's because sometimes I'm not so great at seeing the small steps. I want to rush with one big, huge leap instead.

Yesterday at PT, Sammy had her annual re-evaluation. She wasn't terribly cooperative, but Kathy said that she noticed lately Sammy hadn't been mouthing things as much. Now, this could because she's more familiar with the place, and with Kathy, but in general, when Kathy exposes Samantha to something new, she isn't compelled to stick it in her mouth like before. Wow. I love that! How nice would it be (and how much healthier would she be) if she didn't need to explore with her mouth anymore? What if she could actually use her hands?! The concept is amazing to me.

There were other improvements made -- she is crawling up stairs better, she isn't jumping as much (she has more control), she is standing flat footed without her DAFOs for about 4 seconds (though we know she can do it longer -- she just wouldn't). Lately, Samantha has discovered the stovetop. This is bothersome as it means I need to be more careful, but the fact that she is exploring places that she can't even see -- before it was out of sight out of mind. This shows cognitive improvement here.

Tonight we meet Donna Bateman. I don't know much about Donna personally, but I have talked with her twice on the phone for extended periods of time. She is an incredible wife and mother (first) and therapist (second). She has travelled the world helping "brain injured" children. She is doing a fireside tonight at our church, titled "Neurological Development and Spiritual Progression." Tomorrow we are attending the seminar. And then on Monday morning, we really begin. She is coming to our home, evaluating Samantha, creating a therapy plan tailored to her, and then teaching what we'll need to do. I can't tell you how blessed I feel to be connected with her. She lives in Texas but happens to come to San Jose every 6 months. Her client base in California has grown quite a bit, so she comes up here to re-evaluate them regularly. I've heard so many stories regarding success with her program. There is a program like this only through Philadelphia. I considered going to the seminar out there...but with airfare and everything...it was so expensive. Donna is really quite reasonable. Not cheap, but far less expensive than I had figured it'd be.

What I like about Donna is that she is constantly reading, learning from other people, adjusting -- humble enough to know she doesn't have all the answers, but strong enough to stand up for these children of ours and scream at the top of her lungs "They are GREAT and SMART kids! And let's do something about it! Let's change their brains." And it happens. A little girl here was immobile. Laid on the floor. Could not move. After working with Donna (after learning from Donna and having the mother and father do some therapy at home), she is walking. Walking. I have story after story.

The other day my mom asked me what I expected from this therapy.
1) Hard work. It's going to be hard. It's not hard stuff to do -- just hard creating a schedule so we make sure it gets done.
2) A miracle. Plain and simple. I'm not sure what the miracle will be. I'm not expecting Sammy to all of a sudden say "I love you Mom." That would be awesome, but that's not my expectation. I'm expecting small progress, step by step...but that may one day help her be able to feed herself. That would be fantastic. It would be miraculous really. Or, maybe she just can stand still for 30 seconds without falling over. Or maybe she'll sleep better (wahoo!). That surely would be a miracle. Any of those things would change my life. And it would certainly change hers.

So, what will come of it? I can't give definites, but I'm pretty sure we'll see some progress. And that makes me all giddy!

New Stuff

2010-08-12T13:16:00.001-07:00

This weekend will be a big weekend. We are beginning a new therapy that I've been anticipating since I heard about it...and I can't wait to tell you all about it -- after this weekend. Wahoo!

A Special Child

2010-08-12T11:03:00.000-07:00

A Special Child

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

Thinking

2010-08-08T20:33:00.000-07:00

I know there's more going on on the inside of that little head than can be tested or evaluated. I love you, and the potential within you is far more than I can imagine. It's just tapping into it...and I'm trying. And I'll keep trying for you.

Always My Little Baby Girl

2010-08-04T21:34:00.001-07:00

Today I don't write a letter to Samantha. I just write. I love this picture of her. It makes me smile. Of course her hand is right at her mouth for continual chewing. And she's mid-shriek. Love this girl.

Last week I was at Girls Camp -- teenage girls from our church. It was fun. But I did feel apprehensive about leaving and having no reception on my phone. Marcus did amazingly well though -- first time taking Sammy to therapies and even a neurologist appointment. Go Daddy! He got a little lost, but figured it out.

I sent Marcus to the neurology appointment equipped with questions. I was expecting life altering answers. But much to my surprise, there weren't any. It was pretty simple.

Seckel Syndrome -- Yes there's a genetic test for it, but there's no need to get it done (well, that's to be determined by me...the mama...but for now I'm fine with that). The diagnosis of Seckel Syndrome is actually a way of grouping all the symptoms she has -- and she has them all. So, she has Seckel Syndrome, I suppose, but it doesn't matter? I guess not. And it doesn't change anything about the treatment she is getting, her prognosis, nada. So, that wiped out about 1,000,000 questions I had. Pretty easy.

In recently reading Samantha's past neurology report, I read something I hadn't noticed before. Sammy's head is so small, she's actually considered nanocephalic. Tonight, at the dinner table, this came up. And, her Uncle Colin said it this way, "So, in layman terms, instead of having a super small head, she has a super duper small head." Yep. Our little Sammy is super duper small. And I'm really ok with that. She may have a nano-head, but she has a macro-heart. Such a sweetie (and I can say this now because she's asleep...because believe me...today, as she threw up all over me 2 times, then all over the kitchen floor one more...I wasn't thinking "sweetie pie," though I did feel bad for her).

There are days when I feel like a diagnosis is so important -- like it somehow makes things make sense. She's this way because of this gene...or she does that because of this. But honestly, most days, it doesn't matter what she has. She's my little girl no matter what, right? That doesn't change. She'll always be my little baby girl.

Beautiful

2010-08-02T16:12:00.001-07:00

Samantha,

You are beautiful. Sometimes I'm able to catch you in a moment and see how stunning you are. Your lips are a bright rosy red that really make it look like I apply lipstick to you hourly! But they are gorgeous. Your skin has beautiful coloring that becomes deeper shades of golden brown as the summer progresses. You tan just like your Great-Grandma Boal. Your hair is a unique honey brown that lightens up blond with silver highlights. After your surgery, when your hair began to grow back in, the geneticist said she had never seen hair that color -- so silvery blond. During the winter months, your hair is a soft honey color and people regularly stop me to tell me how much they love your hair. I've had a few people, in jest -- I hope, say they wanted a hair sample to take to the salon. Your blue eyes are magical -- they're piercing. People stop me all the time to comment on your eyes. They are striking and gorgeous. Part of it is that your eyes really are a beautiful shade of blue, but it's also that your eyes tell us the things you can't say. Through them, family, friends, and strangers can all see that you are so much more than the palsy, the cramped muscles, and the smaller head. You are determined to succeed. You are secure with yourself and those you love. You are fun and love to laugh. You have a sense of humor and look for joy in life. You are compassionate towards those who care for you -- understanding that we're all in this together and sometimes it's not so easy.

You are amazing. I love you so much. You are an angel.
Mommy

Normal

2010-07-31T21:10:00.000-07:00

Sweet Samantha,

On Wednesday you attended Scribbles and Giggles for the first time. They called me about 45 minutes after you had been there and said you had a fever. I rushed over to pick you up...and you know what? You were happy and giggly and looked just delighted to see me. Yes, you have a way of making a mommy feel ultra-important. The rest of the day at home, you were a gem -- so I figured you had gotten into your tricky ways and somehow managed to make the thermometer read wrong so you could play hookie and hang with me the rest of the day.

Thursday, off to school you went -- and had a great day.

Friday, no school. You have one month break. We played, opened and shut doors -- oh wait, I already said we played, and you were fine. Until, last night.

At midnight you woke up and were upset. Daddy went in and calmed you down. You fell back to sleep. Then at about 4 am, I heard you cry. You weren't screaming, which is what you normally do...your own way of letting me know "I want out of here and I want MOMMY told hold meeeee!" You were more complainy. So, I jumped out of bed and went to the room. You naturally woke Callie up and when she saw me come in, she was very distressed about the entire situation. I picked you up and sat in the room with both you and Callie. You were burning up. You had a fever of 102 -- and I actually think it was a little higher than that, but I didn't get a really good reading since you weren't being super cooperative about me putting the thermometer in your ear. Poor girl. You "slept" with Daddy (apparently you actually nuzzled and kicked for about 3 hours) and I went in bed with Callie and slept with her.

The rest of the day you've been pretty great. Callie has a fever now, but neither one of you have any other symptoms. You're eating well, complain as usual, smile and giggle as usual, are drinking well.

I've recently started working on a project and it's made me think a lot about how different our life is from everyone else's around me. It hasn't made me feel bad or anything -- an observation more than anything. Back in the early days of microcephaly, seizures, hospitalizations, therapies, the global "special needs," I often felt like no one around me understood. I felt so alone, so different. I do recognize that our life is much different than many others. Today though, we were playing on the deck, and as you were stumbling around, trying to pick up and throw Callie's bike to and fro, I thought about how "normal" our life really is -- how we really are just like every other family out there.

We have two beautiful daughters.

You both love us.

We love you both with everything we have in us.

We do everything we can to fulfill both of your needs.

Both of your needs are vastly different.

You get sick.

You get fevers.

You bring us joy.

It goes on and on. And I could certainly write some sentences after each of those statements as fillers -- explaining how our life is different from other families, because it is -- but really, when it comes down to it...we aren't all that different are we? We're pretty normal. And today, I really felt it. In a way, this realization was a tender mercy from the Lord. I think I needed it, and I know He knew it.

I love you so much. I hope you get that. I hope you understand how deeply I feel about you. You are beautiful, clever, and perfectly amazing in every way. You are the sunshine in our life. You, and Callie both, have made my life more complete.

I love you to pieces -- and I love all your pieces.
Mommy

Good Job

2010-07-20T22:38:00.000-07:00

Li'l Sammer,

Despite the fact that yesterday was a rough day of travel, and we had a 3 hour time change...you had a perfectly wonderful day, starting off with hard work in PT and a happy day at school with your friends. You even took a nap on the bus -- probably to catch up on your missed zzzz's with the time change.

I love you to pieces. You're simply the cutest.
Love,
Mommy

19 Months

2010-07-14T06:23:00.000-07:00

Samantha dear,

I found these old pictures of you on Grandpa's computer. These are from 2.5 years ago when Callie came home. You were only 19 months, and so so darling.

I love you baby girl. Thanks for being a good girl for me today when we went to Walmart. And wahoo! We found shoes for you that will fit over your braces...who would have thought that $5.00 shoes from Walmart would be the best fit so far?

Love you to pieces,
Mommy

Sleep

2010-07-12T05:24:00.001-07:00

Dear Samantha,

I love you. But I will love you more if you start sleeping in longer than 5am. This is a promise.

Love,
Mommy

Heartache

2010-07-04T18:55:00.001-07:00

Sweet Samantha,

Today my heart aches. Last night, you had a very rough night. I wasn't sure why, though I assumed it was your cold. You woke up Callie, and I ended up "sleeping" in your room the rest of the night (which as you know means I didn't sleep at all). We didn't go to church today. At 4am, I decided we weren't going to church today. Around 5am you had a seizure in my arms. That hasn't happened in a while. Poor sweet girl. You were asleep when I heard the clicking sound in your throat -- you struggling for air I've always assumed. I put you on your side and begged you to come out of it quickly as I realized I only brought one Diastat to Michigan with us, and I always like to have a spare. You came out of it and began to kick your legs pretty severely as you've been doing the past 6 months or so when you come out of your seizures. Then, surprisingly, you feel right back to sleep in my arms. I've been going to the chiropracter here to fix my neck pain from the car accident, and I'm finally feeling normal. But after last night, my neck isn't feeling so pretty again. It was worth it. Every moment.

My heart isn't necessarily aching because of your seizure. Those suck. Let's be honest. I hate that you have them and it makes me sad every single time. Luckily, professionals believe there was a loss of consciousness during grand mals, so hopefully you don't remember much when they are done. What is really aching my heart, however, is news that we received this morning about a friend of ours. Their son, about 26 years old, is married and they have a baby. Last night, he had some seizures, and is now in the hospital with no brain activity. His seizures were the result of a different problem that occurred, but it still makes me fear for the day when you have a seizure, and that's it. I'll hold you in my arms as you convulse, but you won't come out of it. And instead of my heart aching, it will shatter. And I wonder at my ability to pick up all the little pieces. What would I ever do without you Sammy? I ache for our friends who are now suffering. I think about how much pain I would feel if we were to lose you, and we've only had 4 wonderful years with you. They are sitting in the hospital remembering 26 years of love and sacrifice and...love. Oh how I ache for them, and so much dread that day for us.

I do find peace in knowing that families are forever -- but the pain, I know, is still very real. I love you sweet girl. You are the sunshine in my life. You are amazing in all ways. You just light up a room with your smile, and you have lit up our lives. I'm not sure how it all worked out, but I'm sure lucky to be your mom. I love you with everything I have in me.

You'll always be my baby girl.
Mommy

Pictures of you January, 2008.

Michigan

2010-07-02T13:27:00.000-07:00

Dear Sammers,

We are having so much fun visiting family here in Michigan. We just spent an entire week at Aunt Lisa's and Uncle Adam's. You loved playing with your cousins, and they so much loved playing with you. Despite all the sunscreen, you're bronzing up like the bathing beauty that you are and you've just been really happy here. That makes me happy. Like, sincerely, deep to the marrow in the bones happy.

I love that you love playing in the yard.

I love that you have been wearing your bathingsuit a lot.

I love that you have been opening and closing doors here with such joy and gusto!

I love that you turned four while we were in Michigan.

I love that you were introduced by Callie individually to all the goats at Domino's Farm.

I love that you haven't had a seizure even though you woke up all stuffed up.

I love that you are my little baby girl.

No matter how old you are, you'll always be my baby girl.

I love you.
Mommy

Alice

2010-06-11T12:51:00.001-07:00

Little Sammer,

Today is your last day of school! I can't believe it! And something occurred to me today, for the first time. Yesterday Alice told me that she may not be driving you next year. She got all teary-eyed talking about how hard it is for her each year -- when she loses her kids to other bus drivers. What?! I told her she can't go. You like her too much. I like her too much.

And today, as you left on the bus, it occurred to me that I may have to change bus drivers every year! Really, I know this is harder for me than it is for you...but that just breaks my heart. I love Alice -- so does Callie (even though she looks less than thrilled in this picture). Alice was your first bus driver. She's always smiling and laughing and she has the kindest most gentle tone in her voice. I love that woman. The first day she drove you away, I cried...but Alice makes it all better. She reassured me that you were happy and even have a boyfriend now -- little Harrison. (I saw him with his arm around you the other day...don't try to play it off like it's nothing.)

Oh Sammy, we'll have to adjust year after year, but we'll be ok. At least Alice started us off real well.

I love you baby. Have a great day on your LAST day of school!

Love,
Mommy

Smiling

2010-06-09T11:25:00.000-07:00

It's hard to get a good picture of you. Most of the time you're moving around so fast, it's near impossible to snap a good shot. And then, there are the times when you see me so you just come toward me, and attack the camera. Like this picture. And I swear one day you'll chew those fingers right off! But until then, keep smiling little girl. I love you.

What She Loves

2010-06-06T19:51:00.000-07:00

Capri Sun.
That's what this little girl loves...it just makes her happy. And I'm incredibly impressed every time she sucks out of that straw. I'm not sure how she figured out how to do it, but she did. I guess if the motivation is great enough, you can do anything, eh?

"mmmmm. Thanks Mom."