Monday, April 11, 2011

Cerebral.Palsy.Sucks.

In general I try my best to keep a positive spin on things and I think that's important. I think it goes without saying that we know we are SO very fortunate with the current outcome of our extremely low birth weight babies. It could certainly be a million times worse and there absolutely are many many families dealing with much more difficult circumstances. 

But at the same time I think it's okay and important to also say that it has been a tough road to get here. And while in many ways the journey has gotten easier as time has passed, these things are only now becoming apparent to Andrew as he's growing up and there are still plenty of tough obstacles that we see on a daily basis. 

I think it would be a disservice to Andrew to make light of the things that he has been through and continues to experience.  He is currently on his third pair of leg braces this year and his doctor has now put him on the medication baclofen to help with his tone (Praise the Lord he hasn't needed any horrific botox injections this year).  He's also been prescribed this giant night splint that he wears to bed every night. 

We call him our bionic child.



This thing adds so much weight to his small frame and it came with tools for us to regularly crank it up to increase the amount of stretch he receives. He often wakes up screaming in the night in pain and then we'll remove it. I hate that he has to go through this every night and it just seems impossible to explain to him why he has to wear it and his brother doesn't. Every time it comes off, his leg is covered in sweat so I'm searching for some good socks if anyone knows of any!

We have recently had to ramp up his therapy schedule again. We drive three hours round trip every Wednesday for an hour of physical therapy and then he is now getting an additional hour a week of occupational therapy locally. They recommended two hours but I told them we'll have to wait and see if we can slowly work up to that. On top of these private therapies he also gets occupational and physical therapy through the school district. 

It just sucks that he has to deal with these things when at 4 years of age he shouldn't have a care in the world. He shouldn't have to ask me if today is "There-a-fee" (therapy). It seems so wrong that a 4 year old should have to ask me if it's with Michelle or Jennifer or Wendy or Mary or Andrew and have to keep track of all these extra adults and their expectations on top of his own family and teachers.  

It's so hard to watch him fall down over and over during the course of a day but my heart fills with pride when he jumps right up and keeps going without a peep while onlookers gasp thinking they are about to see some screaming. This kid is as tough as nails! But I also worry that eventually he's going to take a fall hard enough that his little arms might not be able to hold.

It's tough that he can't pick out whichever tennis shoe in the store that catches his eye. Trying to explain to a 4 year old that only very particular shoes will accommodate his braces is a difficult task. This was just the situation today when I was looking at shoes for his new braces, resulting in some tears. Not only does the shoe have to open up very wide and have lots of give in the straps but it also needs to take a lift on the sole. That's a tough order to fill.

It kills me to see his hands and arms tremor from muscle weakness and to see the frustration on his face when he's trying to eat cereal with a spoon or dress himself or scribble with a crayon. But wow am I proud that he has accomplished so many new tasks this year.

Like any parent I just want Andrew to look back on his childhood with happy memories, surrounded in love. I know these challenges are shaping him into a person of character and determination. But I would be lying to you if I said I didn't wish things were easier for him or that he didn't have to deal with so many obstacles and pain. So yes, Cerebral.Palsy.Sucks. but having Andrew in our lives is one of the most amazing blessings I've ever experienced.

Because

Andrew

Perseveres.

Each and every day.

So you can only imagine the depth of my joy and pride to watch my boys take the soccer field for the first time this year.  The boy who was never supposed to walk is doing what many thought would be impossible.

He may be the smallest but is he ever intense.



He may not be the fastest, 
but he runs with EVERYTHING he's got.


And yes he takes some pretty big blows


But he always gets right back up.


Andrew, you never back down! 
We are so proud of you!

9 comments:

Muddy Dump Trucks & Stilettos said...

Your blog moved me deeply today-what special boys you have. I have twin boys and my heart goes out to you for being such a strong momma through these circumstances bc just having twins in general, as fun & adventurous as it may be, is a challenge in itself! I will pray for you & your family-what an inspiring family you are!

lmworley416 said...

I think it's been a while since you have me in tears...he's such an amazing little man! Every time I've seen pics of him and he hasn't had a brace on I was happy. Looking forward to your posting that he made his first goal! He's going to do it, I know he is!
Continuing to lift up prayers!
Psalms 31:24 Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD.
Prayer Bears
My email address

Anonymous said...

You made me cry today. I can't say I know what you are going through as we were fortunate that J had no major issues. My heart goes out to your family. I do know the pride and the love you feel when your very low weight preemie accomplishes something.

Love Gayon

Todd and Randi said...

What a sweet tribute to your little miracle!! I heard an interview with Lysa Terkeurst a few weeks ago where she said God has shown her that she must pray that she have the courage to allow Him to write her childrens' testimonies. Easier said than done, huh? What a wonderful testimony God has written for Andrew so far.

lala00 said...

Both of your boys are fortunate to have a mother who works so hard to make the best of a tough situation. You are all an example of faith in perseverance and I pray that God blesses richly for it!

Lynn said...

Praying in Seattle!
Psalms 116:1-2 I love the LORD, because he hath heard my voice and my supplications. Because he hath inclined his ear unto me, therefore will I call upon him as long as I live.
Prayer Bears
My email address

Penny said...

This is Penny Laurel's mom. Just thought I'd read some of her friends' blogs which I do now and then. The boys are so adorable. I can imagine your struggle to deal with this which must be harder the older - and more aware - he gets. But obviously he is determined and that aspect of his nature will pull him through! Funny - he might wind up with an advantage just through learning to cope with some challenges early on. Wouldn't be surprised!

lmworley416 said...

Know that I'm always here praying!
Psalms 116:3-5 ...I found trouble and sorrow. Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul. Gracious is the LORD, and righteous; yea, our God is merciful.
Prayer Bears
My email address

Cerebral Palsy Family Network said...

Andrew sounds like an amazing child and an inspiration to all of us. Keep at it, kiddo! If you're ever in need, our website is full of <a href="http://www.cpfamilynetwork.org/>cerebral palsy resources</a> that are helpful in all areas of life. Check it out! And good luck to all of you!