Sunday, December 30, 2012

Thank God for Perspective!

We woke up Christmas morning this year to the stomach flu at our house. Before the Bible could be read (we start every Christmas morning cuddled in bed reading the story of Jesus' birth) or the presents from Santa could be opened, this first "gift" was upon us. Much to the 5-year-olds frustration she had to wait for Mommy and Giraffeboy to feel well enough to start the morning's activities, and as soon as the last present was unwrapped Mommy went back to bed. There was no going to the big family party at my Aunt's house. I barely registered how cute Giraffegirl and Giraffeboy were opening their presents because I was trying to just make it through without being sick, and really it didn't feel like Chirstmas to me. But I believe that as in so many other times in my life, God blessed me with the gift of perspective, and left me grateful for the Christmas we had. A few days before this Christmas we got an email from our pastor asking us to pray for a family she knew who had just lost their wife/ Mother. This dad was left to raise two young kids, ages 4 and 8, on his own. In addition, 5 days before Christmas I attended the funeral of a close friend's husband, who lost his battle with cancer. My cousin celebrated her first Christmas since her son, age 15, died. So sick or not, as I looked around my room as we curled together watching a movie that afternoon, I couldn't help but realize that I was surrounded by everything I needed on Christmas, and that I was blessed. We are still working on getting better over here, but we are on our way, and we've had plenty of bonding time to enjoy each other as we've been homebound.

This isn't the first time that I've been blessed with perspective. My sister has a close friend whose little girl, Maryah, was diagnosed with ewing-sarcoma bone cancer at age 9. Maryah was amazing- strong, brave, inspirational, and her battle with cancer, including multiple remissions, went on for over 6 years before she died at age 16. Just watching someone so young fight such a hard battle gives you perspective over the things going on in your own life, but in our case, it gave us an even more important perspective and was a blessing. During the years of her fight, my son was born and diagnosed with marfan syndrome, followed by my daughter being born and diagnosed. It seemed that with every new marfan "issue" that came up in my family, my sister would call with the news that something worse was going on with Maryah. I remember vividly the day we got the news that my daughter had marfan syndrome. I was shocked, heavily grieving her perfect health, and I called and cried with my sister on the phone. It wasn't a half hour later that the phone rang. My sister, in her tear-filled voice, told me that Maryah's cancer was back. Suddenly I wasn't grieving my daughters perfect health, but was instead thanking God that she could LIVE with what she had. That wasn't the first time that happened with Maryah and our situation, and it surely wasn't the last, but it lives in my head as a reminder. And don't get me wrong, I would gladly give back all the perspective for Maryah to never have had cancer, for her to be alive and healthy. But I recognize this gift she left us all with.

 Maryah


There are other ways that the gift of perspective has been a blessing in my life. I mentioned earlier that my friend's husband died this year when he lost his battle with cancer. I've watched as he went through the ups and downs of fighting cancer for nearly 10 years, including the periods of remission. I've seen the struggles of dealing with insurance, medical appointments, and so much else. I have another good friend who is fighting cancer too, and I see the struggles she and her family face. And because of our own experience with marfan syndrome I can empathize with the financial strain they go through, and with the insurance struggles and other things. And because of so many situations I've been through with my extended family and friends, I have seen how quickly someone can die, how we aren't guaranteed to live to old age, and how each day is a blessing. When I see these friends fighting these battles I truly realize that it could be me or my family instead. I think of the quote "there but for the grace of God go I", and I am grateful for that grace. It's one more way the gift of perspective has blessed me.

Thursday, December 6, 2012

Taking Things Away

I was ok until his chin quivered. Up until then I had rehearsed it in my head. What I needed to say. Why I needed to say it. How he would react. But that quivering chin as he tried to hold in his emotions did me in.
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.