Reality Check

Being a mom isn't what I could call "easy."  And that's ok.  I kind of knew that coming into the job. 

Being a mom.  It's a tough job. 

And it gets even harder when you have to make all these decisions about therapies and treatments, surgeries and equipment. 

Today, I feel overwhelmed.  Of course I want what's best for Samantha.  Don't we all want what's best for our children?  And yet, with these little ones who struggle to move, eat, or even breathe on their own, I want so much more for her...or maybe less depending on how you look at it.  I've never had such a deep desire for every day things that we take for granted.  All those simple tasks.  Simple skills.  Simple stuff.  I want that for Sammy.  I've never dreamed about my kids being the next president or famous engineer.  But I never dreamed that I'd so deeply desire them to move "normally" or eat on their own either.   

I have felt on many occasions that there was so much potential within Samantha that just needed to be unlocked somehow.  (Maybe I'm too focused on unlocking the wrong kind of potential ~ a thought that just occurred to me and that I'll have to think about more.)  And so I research.  I read.  I search.  I ask questions.  I try to truly figure out what is best for Samantha.  I mix and match what I think is working, or will work for her.  Why?  Because I really feel like those things will help her.  Much of it is trial and error, and other times I feel divinely led.   

And in all that we do for her, I still feel discouraged and sad at times.  The past week has been hard for me.  I've had difficulty keeping my emotions in as I've watched Samantha around other kids.  In the past, I had compared her.  I don't do that so much anymore because to me, Samantha is her own little person, and all considered, I'm really ok with that. 

But during this week's time, we've played with cousins, friends, and strangers at the park.  In all the situations, I've watched with joy as Callie played and had so much fun with them, while my heart broke watching Samantha wanting to play with them but couldn't.  She kept going towards the kids, but they just pass her by.  It's ok.  I'm not saying that these kids should stop and play with her.  I get that 100%.  It just made me so sad to watch.  And it made me even more sad when she'd cry because she wasn't playing with them.  At first I didn't recognize it as that.  But as soon as I relocated her to be near the other kids, she was happy. 

Samantha has always loved people and being around others.  Aside from any other desire I have for her, my deepest desire is that others will love and want to be around her too.

Here I am, doing all these therapies for her, feeling confused about what is best...liking bits and pieces of this, all of that, parts of something else and trying to figure out how to make them all mesh together and work for Samantha...and what tugs at my heart is ultimately how it will all play out in the end.  Will all of this really help her achieve not just a more functional life, but a happy one as well.

Being Samantha's mom sometimes is not easy.  And I guess it never will be until my heart is separated from hers.  But, I'll take it.  Forever.  

  

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

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.

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!

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