It sounds like such a short amount of time. But for us, it has been the longest 6 months of our lives.
Six months without hearing his voice (other than the Mom whisper I was lucky enough to get) Six months with only one way hugs, six months without hearing his laugh, six months without bringing him to school, six months without seeing him enjoy things, six months of him no being able to walk, six months of him not being able to control his body, six months of him not smiling. Six months of him not getting to play with his friends or his brothers. Six months of him not being able to express himself. Six months of tube feedings and diapers. Six months of range of motion and re-positioning every hour or so.
This is hard. The hardest thing we have ever gone through. I'm honestly not sure what could be harder. The hardest part is not having a special needs child, it's not the unknown, it's not even the life change that we are all going through. It's the pain of missing someone who is right in front of me. It's the idea that one day I had one child and now, that same child....isn't the same. I love him so much. Please don't misunderstand me. I love him now more than I EVER thought was possible. I am so proud of him for everything he has endured and how how he tries. He inspires me. But it's just different. The pride I had in him before was different. I knew he was going to go so far in life. He was so extremely smart. He was so friendly. He was so happy. He was a dork and he didn't even care. He flaunted that dorkiness with pride and it read very well. The things that he got excited about made me proud, science, space, underwater life.....he was just cool. He did great in school and always wanted to do his best. The only thing he was a slacker in was chores. I always imagined that he would be super successful. I mean he was 10 and was honestly already trying to pick a college. He wanted to go to college in Washington state, all because I told him it was the most beautiful state I had ever been to. He talked about it all the time. It's not that I am not still proud of him, because I am. But now this future that was so bright.....is now, so different. I am so blessed to have him, and I know he can come out of this and live a normal life.....but even a normal life is going to be so hard for him. He could have social problems, he could have attention problems, he could just not have the same drive he had before. AND THAT IS FINE.....but it just makes me so sad.
Sometimes I look at him and think....man he looks so much more grown up then before....but I have come to realize that I think that just because he doesn't smile or laugh. I miss his little squinty eyes when he smiles. I miss his giggle.
Now, I know what your all thinking, Look how far he has come in six months. And this is something that can not be ignored. He is amazing. There are things that are still issues and scares for us. We go next month for a CT, a reconstructive 3d CT, and a MRI to not only find out if his body is accepting his skull but also to see his his brain is developing water on it. Both are HUGE prayer requests. But the neurosurgeon did an exam on his head physically and said he thinks that his body is taking his skull well, this was so encouraging, but we will know for sure when all the tests are done. He is also getting botox this month or next month on his arms. Praise report is he doesn't need it on his legs this time. He is getting much stronger with his head control, so much so that he is trying to lift his head when he lays down. He is getting better at his eye gaze device, even though he isn't at the point where he can use it as communication, we are getting him familiar with how to use it by playing games and soon he will be able to communicate. We also are one step close to having a neurologist, which has been a heartache trying to find him one.
We are thankful. We are blessed. We are hopeful. But its still hard, its still scary, and we still have sad days.
Hopefully in 6 more months we have more to be thankful for.
Love you guys!
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