Friday, December 16, 2011

Movin' On Up

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

Monday, December 12, 2011

A Mess


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

Friday, December 2, 2011

Sorry Sammy

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!

Thursday, December 1, 2011

Still Around

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

Wednesday, September 21, 2011

You Make Me Proud



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




Wednesday, September 14, 2011

Off to Utah

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.

Saturday, September 10, 2011

First Day of Kindergarten

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. 

Sunday, August 28, 2011

the best

Sammy ~


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


Love you,
Mommy

Friday, August 19, 2011

you are precious

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.

Thursday, August 18, 2011

My Baby Rides the Short Bus

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with DisabilitiesMy 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

Wednesday, August 17, 2011

Such a Lady

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.

Sunday, August 14, 2011

Looking Back

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.   

Thursday, August 11, 2011

Ready for School...Again

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).

Monday, August 8, 2011

Lucky?

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.

Sunday, July 31, 2011

Seeking Normal

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. 

Thursday, June 30, 2011

Favorite


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.

Thursday, June 23, 2011

5 Years

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

Wednesday, June 15, 2011

My Problem

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

Friday, June 3, 2011

Samantha Syndrome

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.

Thursday, June 2, 2011

Appreciated Feedback

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. 

Sunday, May 29, 2011

How to Properly Thank

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).

Tuesday, May 24, 2011

What's the Diagnosis? Part 1

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.

Monday, May 23, 2011

Wow!

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!

Monday, May 16, 2011

Amato's and More

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.

Friday, May 13, 2011

In the Mouth

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.

Thursday, May 12, 2011

Miracle

"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.


Tuesday, May 10, 2011

When You Know Her

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 seeYou'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.

Monday, May 2, 2011

Christmas Flashback

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!

Saturday, April 30, 2011

Put Your Head on My Shoulder

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.

Friday, April 29, 2011

Sponsors

In preparation for the upcoming Sweatin' for Sammy 5K we have been soliciting local businesses to sponsor the event.  We were hoping for just a few, but so many have been willing and excited to be a part of this event to help Samantha.  Sure, some haven't been able to take on sponsorship since we do not have 501(3)c status, but I've been overwhelmed with the business support.  So, a sincere thank you to the following:

R. Martin Judd D.D.S
Saputo Cheese (sponsorship, plus donation of string cheese for the event)
Jim Pojda -- Alain Pinel Realtor

And we may have more coming!  This is incredible.  Thank you sponsors, for being fantastic!!!



Tuesday, April 26, 2011

We're In...Now WE Can

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!

Monday, April 25, 2011

My Girl

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. 

Sunday, April 17, 2011

It's Been Awhile...

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

Friday, March 18, 2011

Cerebral Palsy Awareness Month


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.

Tuesday, March 1, 2011

Choosing to Act

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.

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