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.
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!