Parenting is hard, whether your kids have special needs or not. There are times in every parents life when you have to be the bad guy, when you tell your kids "no" to something that they think every other kid gets to do. We've been through this many times with both our kids, and though it is sometimes hard, it's a parenting right of passage that we all face. It's just a part of life. When your kids have a medical condition the number of times you have to say no is increased, and there are things you have to say no to that most parents don't need to think about. We plan around these potential "No's", avoid starting things that we may later need to take away, but that isn't always possible. My little marfs didn't come with a handbook, and there is no official list of forbidden activities they must avoid.
The past few weeks have been really hard around here, so much so that it has taken me awhile to process it and come to a place I could write about it. I've talked in my blog before about my son being diagnosed with aspergers syndrome, and as such he has a hard time making friends, and often spends his recess time alone. We found out he was playing gaga at recess. It is the first real activity outside that he has interacted with the other kids. For most kids, it wouldn't matter that they played gaga, a modified form of dodge ball where the ball is supposed to stay on the ground and is batted around with the hand instead of thrown. For my son, whose lenses are already partially dislocated, and whose aorta is enlarged it represented a threat, a serious potential injury, a risk too high to take. So Giraffedaddy and I talked and planned and sat down to have the conversation with Giraffeboy that he could no longer play. We didn't even really make it through our first attempt at the conversation. We outlined the risks, told him we thought he should stop, and when he asked to leave the table we let him. There were no tears from him that day. That was the weekend.
He came home Monday after school and mentioned playing at recess again that day. We couldn't put it off any longer. We needed to know he would no longer do it, that he really understood it wasn't ok. So before bedtime stories we started the talk again. Same outlined dangers, same information, but this time it came with a definite "you can no longer play". And partway through the conversation I saw his chin start to quiver. This little boy, 8 years old, rarely very emotional, so easy going and brave, and I lost it. As I saw the first silent tears rolling down his face, I no longer saw my 8 year old in front of me. Instead I saw that tiny baby, so hoped for, prayed for, wanted, with the same quivering chin when he would start to cry. The tiny boy that from the moment I knew I was carrying him I had sworn to protect and love. It's no wonder I couldn't stop myself from crying. And when that little boy, the brave 8 year old with his silent tears and quivering chin said "I'm sorry mom. I didn't mean to make you cry." I reassured him that I was crying with him, not because of him. I was mourning with him the loss of something that I understood he loved. They were tears of sadness for the opportunities he would never have that most people take for granted. For the unfairness of it all. And for my own failure to protect him from this disappointment.
In the midst of this there have been numerous blessings. Giraffeboy played for more than a week before we were aware that it was happening, and although there have been multiple injuries daily in the nurses office, he never got hurt. I fully trust that he now understands he can't play, and he has always been responsible enough to follow the activity rules we set up (the ball was supposed to stay on the ground, so in the mind of an 8 year old gaga wasn't off limits). I have no doubt he will follow this too. The number of people who have reached out to us as we have filtered through the aftermath, who have offered advice on how to proceed with making sure the school would understand the seriousness and come up with a way to keep him better protected in the future. The friends who called to offer an ear, or whose shoulder I cried on as I struggled with finding a way to keep him safe. My special needs Moms bible study ladies, whose experience dealing with IEPs for their own kids offered so much help. And our faith, on which we relied on for guidance through the whole situation. The truth is that in the end we aren't willing to keep him in a plastic bubble, so there isn't a foul proof way to keep him safe. But after IEP meetings and new plans, we are relatively confident that this won't happen again.
In the end, none of this was about me or my feelings. It's about the baby boy, with a quivering chin, who has grown up way too fast and is an amazing little boy, who holds my heart in his hands. This Mommy couldn't be prouder of who he is becoming.