When Matty was born we were semi-prepared for what we were in for, we knew things were going to be rough those first months (which ended up being years). Those first few months we loaded with doctor's appointments, hospitals stays, no sleep and a lot of questions but at least we had been given notice while he was in the womb so we weren't knocked off guard. After awhile we settled into a routine and the medicines, wires, throwing and tripes to OT, PT and speech became normal. We had books to read to help us through and I never forgot the poem Welcome to Holland that summed up life with a special needs child perfectly.
Fast forward 13 years with your "typically developing child" who has been living in "Italy" (reference to the poem). Excelling at everything she does, sports, school and friends. She is the "easy" kid, you never worry about her and you are pretty much on autopilot. You have a great relationship and for the most part she is a well adjusted 13 year old (as well adjusted a 13 year old girl can be). Then BOOM overnight you are not in Italy, not even in Holland but in Limbo.
In May Emily suffered a severe concussion during a basketball game. At first we were told it would be 3-4 weeks and then she would most likely be fully recovered and all would be good. Not so much. We started noticing memory gaps, she couldn't leave her room for more than an hour at a time without her head exploding and her balance was so off she couldn't go up and down stairs by herself. So here we are after many tests and 5 months later and we are being told that her brain isn't going to repair and that we need to re-wire, which is going to require several different kinds of therapy and will take anywhere from 18-24 months.
There are no books for this, there is no one I can call and ask questions, there are no support groups. We are in a land of our own.
It has been very hard to watch my child, the child that LIVED for basketball not be able play her favorite sport. It is heartbreaking to watch most of her friends fall away and leave her behind. Since she can only go to school for 2 hours at a time and then she comes home to go to rehab it is tough to keep up those friendships at school. Out of sight out of mind.
It is one thing when the child is born in "Holland", Matty never knew any different world so for him everything is normal. Emily on the other hand remembers how things were before her injury. She knows the difference, feels the chill from friends lost, and understands the ramifications of the injury and knows she may never play again.
It really hit me the other night when we had a parent meeting regarding her AAU team and the Coach was talking about the future, a future that 6 months ago was guaranteed for Emily. As I listened I teared up because I knew that this was most likely no longer Emily's future and as I looked over at Emily and her team I was already seeing them separate themselves from her and the look on her face said it all.
So here we are in Limbo working our way back to Italy but I think for us it will be a different Italy once we get back. We now have seen Italy from a different point of view and I think she is a bit jaded. We will get there, she is a strong kid and nothing will stop her intellectually returning to her brilliant self. We just may need to find a new non contact sport (for my sake).
“And human will is the strongest force ever created. There are those born to succeed and those who are determined to succeed. The former fall into it, and the latter pursue it all costs. They won't be denied.Nothing daunts them.”
