13 February 2009

Internal Struggle

Life has been an absolute roller coaster ride. The Arthrogryposis Convention is quickly approaching. We're still trying to figure out exactly how we're going to afford to get there this year. But how can the President not get there. The economy is taking a toll on everything and everyone, but somehow we will get there this summer.

Lil Louie has been doing really well despite his continued falls. The other day he hit his chin so hard, that today is day 5 with that nasty bruise. His personality is changing into this tough but amazingly SWEET little guy. I'm so proud of him. He hugs me his way. And tells me he loves me "this much" by spreading me fingers, since he is unable to spread his own. Not a day goes by when I don't catch him performing a little miracle and that perpetual lump in my throat grows ever larger. I carried my son to full term unaware of his condition. He was born at 8 lbs 13 ozs. A very healthy baby especially for a mom of 5' height but especially for being a child with Arthrogryposis. It wasn't until I joined www.amcsupport.org that I learned that typically children with Arthrogryposis are born not just premature but also weighing very little. I wonder how I would have endured the strain of knowing of my son's condition before giving birth to him. My pregnancy was very stressful, and have always been thankful that I was unaware. My son when born was chubby, seemingly healthy except for a few anomalies. And I ponder if my ignorance of his condition saved him.

There are many different forms of Arthrogryposis. Some are lethal. Some are not. Some could be. I didn't know until recently that the split of those that survive are 50/50. One of the hardest parts of being involved with Arthrogryposis Multiplex Congenita Support, Inc is definitely knowing about the babies that bless us with their presence for a short time. On January 30, 2009 we lost a special baby. I don't feel comfortable saying her name, since I didn't ask the parents' permission. But she was here with her parents for a blink of an eye. I'm baffled how a child who I have never met before can bring me to tears. How even though I have never met the parents, or met their baby, I mourn with them. Hurt with them.

I just don't understand how some make it and some don't. I am so sorry that their baby didn't. I'm sorry for all the ones who don't. And learning of those who opt to terminate their pregnancy absolutely shatters my heart. I don't quite understand why the ones that do survive, or live, must endure so much. I've been struggling with that one for a while now. And I'm still not at peace with it at all. I know ultimately I must let go of this struggle. I'm just not there yet.