For those of you who haven't the foggiest what I'm talking about, last night's show was about a family who's two-year-old had arthrogryposis and a skeletal disorder. I missed the first minutes, so I'm not completely clear on the details - like whether or not they received their diagnosis prior to delivery - but I did hear them say that originally he was not expected to live.
This little boy's severity was closer to Thomas's than anything I've seen documented on television so far. Though still, Thomas's was worse. Watching shows like last night's is difficult in a number of ways, primarily because it begs comparisons. It is inevitable for me and anyone who's heard my story (and can manage to remember the term "arthrogryposis") to watch and wonder. And then the questions come. And the questions are sometimes valid, but sometimes they aren't. Because at the end of the day, their son is not Thomas, and Thomas is not their son.
I was so happy for that family: that their boy lived; that they were given a new home that helped them survive; that he had an older brother to interact with; that they felt blessed for every moment they've been given. And I was jealous. Jealous of the smiles he was able to give.
But I was also relieved. Relieved because of the reality of their situation and what I can extrapolate would have happened to us, had Thomas some how been able to survive until birth, and then managed to live for a few years. Watching the few things their son could do only reminded me that Thomas would not have had even that. Thomas's arms were fixed in a straight position, not bent, as their son's, which meant he would not have had use of his arms. The clubbing of Thomas's hands and feet was more severe, too. And surgery likely would never have been an option because Thomas's bone density was already so compromised.
And that's to say nothing of all the daily life-saving measures - the trach tube, the feeding tube, the colostomy bag, the physical therapy. I watched that mother's fear over their limited access to suction for his trach and my heart melted. We lived (and still do ) in a two-story home. Because stairs are out of the question, we would have had to build some sort of bedroom in the open dining room. The debt from medical bills would have bankrupted us, as it nearly did without any bills beyond his birth. We would have been unable to move to an appropriate house. I would never have begun my freelancing career - or any career, for that matter. Siblings would have been out of the question.
And then there's the aspect that scares me most: the pain. I did not hear this family address it specifically, but at least as often as he smiled, a grimace crossed their beautiful boy's face. He was bright - in possession of all his mental faculties - but unable to communicate beyond a few attempts at sign language (which again, Thomas could not have done). I remember that the physical, mental, and emotional pain of our son were Todd and my greatest fears as we tried to decide what do.
I am quite sure that those who disagree with our decision to end Thomas's life will see this as proof that we were wrong. I cannot help that. And frankly, it doesn't matter one iota. Because to wish for what that family had - to wish our decision away - would be to wish for a life without Hannah or Caroline. I won't do that.
I try to be as honest and forthright with you as I can be about Thomas. I try to do the same thing for myself when I see shows or hear stories of other's suffering from the disease. Because to create a revisionist history of what really happened won't help anyone. Do we know for sure that he would have died in utero? No. But we can be very nearly sure. Can we know if a miracle might have happened? No. But even the most miraculous picture was a grim one for Thomas. And I believed that allowing his suffering to continue in the hopes that God would literally, physically save him was tantamount to daring God, and it was backing away from the trust He placed in me to do what was right by Thomas.
Instead, I try to share that it does hurt to think he might have given us smiles. When the father in the show told of wanting to grab his son, pull out the tubes, and run away with him when he first saw him after his birth, I could do nothing but nod in agreement. But he didn't, because he was being his father. I remember standing in the shower, rocking back and forth while I held my belly, wanting nothing more than to run away - to keep Thomas safe inside and pretend that I knew nothing about what was going on. But I didn't, because I was being his mother.
I have been telling Thomas's story for five years now. In that time I've met and spoken with dozens of families who've faced the decision of termination. Some have, some have not. Every story is different, as is the outcome. But never in that time had I found someone who terminated because of a diagnosis of severe arthrogryposis. Until the five year anniversary of Thomas's passing when I received an e-mail from a woman who was already undergoing the long process of termination for a baby with severe form of the disease. And then the following week, another woman who had terminated years before but always felt isolated and alone until she found my blog.
I don't believe the timing was coincidental. It's just too eerie. I needed to know at that point in time that I was not alone. So for them, and for myself, I want to say that we made the right decision for our children. And had we decided to try and bring them into this world, that would have been the right decision, too.
I know that every time I write about this subject I run a very good chance of incurring hurtful comments from drive-by posters who don't really care to learn about me or my family. But I think it must be worth it because for every one person who tells me I have no right to say the Lord's Prayer, there are thousands more of you who lift me up and thank me.
So thank you for letting me share.