Thursday, September 30, 2010

I Know

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


video



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

Monday, September 27, 2010

Sweet Moment with Samantha

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.

Saturday, September 25, 2010

A Plea

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

Tuesday, September 21, 2010

What To Do About Your Brain-Injured Child

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.

Monday, September 20, 2010

LAME

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.

Saturday, September 18, 2010

Great Expectations

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.

Friday, September 17, 2010

Not Fun

(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!

Wednesday, September 15, 2010

Appreciation

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!

Tuesday, September 14, 2010

Redemption

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

Monday, September 13, 2010

Shape Up

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

Thursday, September 9, 2010

Reality Check

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

Wednesday, September 8, 2010

Do You Know?

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

Friday, September 3, 2010

Rylee's: The Reason to Snack

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.

Thursday, September 2, 2010

Hands


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!

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