I Watched It

Yes, I watched Extreme Makeover Home Edition last night.  And yes, it was hard.  It always is when something reminds me of Thomas and hits so close to home.

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.

Comments

[Kim]

I noticed the grimaces of pain on the little boy's face too, and honestly, I thanked God that you were brave enough to make the right choice for Thomas. (Not that that mother's choice was wrong for her son. But I know that the choice you made for Thomas was right.) Thanks for being so brave and open and telling your story.

[Claire]

Lovely Post.
The honest, eloquent way that you expose yourself, by telling your story is very brave and I commend you for it.

[Jen]

I caught the show about midway through, and though I wasn't certain of the boy's condition, I guessed it was arthrogryposis, and immediately thought of you.

You are so brave, my dear--for watching, for talking honestly, and for opening yourself up in such a very painful way. Thank you.

[Amy]

The pain your son was in, and would have been in, had he somehow miraculously survived to birth, left you no choice morally. The most critical are usually the ones whose own circumstances would never get them anywhere near your shoes.

[amy]

I have read your story, and my heart breaks for you every time you recount it. I am SO on your side with your decision. Every woman's decision, when it is with no ill-will and informed, is the right decision for her and her family.

[Sarah]

I'm glad you heard from others who went through similar traumas... I'm glad that it helps to make you feel less alone. The loss of a child, especially when you had to make a decision about termination (or end life support, etc) adds another layer of pain.

We didn't have to make a decision about removing our daughter from life support (we were told there was nothing else they could do and then they removed her from her ventilator), but before I even saw her I told her that it was OK for her to "go" if it meant she could avoid a life attached to machines, unable to interact with the world, and in frequent/constant pain.

I think there are many people (probably including myself) who would have made the same decision you did with Thomas to save their child from such a challenging existence.

[cagey]

"I try to be as honest and forthright with you as I can be about Thomas. "

You do not owe us anything, yet have allowed us the privilege of sharing your story all these years. Thank YOU.

My pregnancy with my son was a breeze and I do credit YOU for making me see that every little normal ache and pain was normal and gift to be appreciated. I relished that pregnancy and it was one of the most beautiful periods in my life that I will treasure to my dying days.... So again, thank you.

Peace.

[Cecily]

I cannot imagine how painful it was for you to watch that show. How awful! You are such a brave woman, and I am so grateful that you continue to share your story and help bolster other women like us that have had to make similar horrible decisions.

Thomas is so grateful that you were able to show him so much love and compassion. I believe that with my whole heart.

[laura]

And thank you for sharing the story, over and over. I know someone who had to make a similar decision recently, and having read your story before, I know I felt even more compassionate for the difficulty you both faced.

[fishface]

Beautifully written. You such strength to be able tell your story in the hopes that it will help others in the same situation.

[BethanyWD]

Thanks for continuing to tell your family's beautifully heartbreaking story. I know Thomas is up in heaven smiling down lovingly on his two sisters; and he is no longer in pain, but free.

[geohde]

Thank YOU for sharing.

J

[Natalee]

No, thank YOU for opening my eyes, heart, and mind to "another view". I have always been pro-choice, but was always reluctant to say if I would terminate if I found out about a severe birth defect. Thomas' story helped me see that sometimes, letting go is the most painful, most loving thing a mother can do for her child. Sending you a virtual hug.

[Jess]

A month ago a friend gave birth to baby girl with hydranecephaly, a baby that was not supposed to live more than a few hours, but who is now more than a month old. She was not given the options you were, but has recently signed a DNR. The courage she has displayed and the courage you have displayed in following two different paths is remarkable.

[Monique]

Thanks so much for sharing.

[Melanie]

Kind. Brave. Loving. Protective. Those are the words that come into my head when I think of your painful choice. The same words that describe us all as mothers.

[Kate]

No Julia, thank YOU for having the courage to share Thomas' story with us.

I know before I found your blog several years ago (we were TTC at the same time, and my Brody and your Hannah were due on the same day, although he was impatient and arrived 7 weeks early), I thought of abortion as a black and white issue. Your story made me realize that it's not that simple- that there are people- families- children- and GOD- behind the decision to terminate.

I'm unable to have any more children, but I pray that I am able to face life with the grace and courage you have.

Hannah and Caroline are lucky to have brothers watching over them, and such a wonderful mom and dad here on earth.

[leslie]

I though you were incredibly brave and honest at the time you first wrote about Thomas. Your honesty and clarity continue to impress.

I know what you mean about wanting to run away when faced with making such devastating decisions. When my mother was dying everyone looked to me to make the medical decisions and that moment of utter fear and dismay will stay with me forever. How much worse to have to make such decisions for a much-wanted child! I honor your courage in sharing it.

[Anna]

Oh Julia, I am so sorry you had to make that decision. It's a horrible position for a parent to be in; to want a child so badly, but not at the cost of their suffering. We terminated our first pregnancy because our son was affected (adrenoleukodystrophy). I knew that whenever he started to exhibit symptoms I would do anything to help, anything to alieviate the pain. But by then, there wouldn't be anything I could do. So we did what we could when we could.

Last year when I saw my 34 year old brother die slowly with labored breathing, unable to move, unable to speak, I felt a lot better about our decision.

I am grateful that, as difficult and sad as it was, we were able to make that choice. We couldn't see condemning a child to short painful life. It is possible with ALD that males can live to late teens through adulthood symptom free. I guess I lacked the faith, but I wasn't willing to take that chance with his life.

Thank you for sharing your story. I'm sure Thomas loves you and keeps an eye out for all of you!

[~ bridgette ~]

I, too, saw the show and thought of you. Thank you for being brave enough to share an honest account of your story.

[Duchess]

This is one beautiful post you have written, and please just let me say, even though I don't personally know you, I am so proud of you for being the open connection that so many others have needed. If brave people like you never shared we would all be sitting in the dark, feeling very alone.

[Jill A.]

Thank you, Julia, for writing this today. I'm coming up to my 6 yr anniversery of my DD birth/death. It's hitting me like a tidal wave and the "what if" scenes keep popping up. Your post is a reminder to me of the reality of my reasons for my choice. You are able to say what I have in my heart and can not put into words. You are the brave face of heartbreaking decisions. The human and compassionate and loving face of these decisions. Too many people believe these choices are made lightly and out of convenience.....they are not. Thank you again. Your words have helped me immeasurably.

[Mandy]

I've always admired you for taking the time, words and bravery to explain to us - those you owe no explanation to at all - why you made the decision you did and how you feel about it as the years pass. Your path is one that nobody can truly understand unless they've been on it, but I'm grateful for the times you show us glimpses along the way. To me, your family puts names and faces to the idea behind why I feel so strongly that the option be there when needed.

Big hugs to you.

[Mandy]

I've always admired you for taking the time, words and bravery to explain to us - those you owe no explanation to at all - why you made the decision you did and how you feel about it as the years pass. Your path is one that nobody can truly understand unless they've been on it, but I'm grateful for the times you show us glimpses along the way. To me, your family puts names and faces to the idea behind why I feel so strongly that the option be there when needed.

Big hugs to you.

[R]

Let me add my thanks as well. Thank you for your willingness to share your story. It is both utterly personal and extremely important to so many people--really, to all of us. It's a story that needs to be heard and I thank you for your courage and openness in telling it.