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Advocate Second Only to Mommy

Posted Oct 13 2009 10:06pm
This morning my dear friend Wendy (P.J.'s mom) sent me to read this on the Huff Po website. I was upset at best and words not appropriate for a family friendly blog at worst. After reading the editorial and several other post on Julia's site, I had to do something, so I wrote the following and sent to the Huffington Post:

To whom it may concern:


Let me start off by saying I am extremely pro-choice and a Christian. I have said it a million times over abortion was not the right choice for my family and our situation, but I do understand it is may be for others and their situations. This morning a very dear friend of mine sent me a link to the  Huffington Post editorial concerning the doctor who was killed over the weekend in Wichita, KS. But our story starts way before today. In September 2006, we went in for a routine  20 week ultrasound, in a whirlwind situation, we were sent to a perintologist.     He did the ultrasound and found that our baby (we did not want to know the sex) had clubbed hands,  clubbed feet, and arms stuck in extension.    These along with many unknowns were presented to us. On that day, we were given a diagnosis of Distal Arthrogryposis. We were also told and I quote “Some parents choose to terminate”. My immediate response was “I do not.” While I would never judge another mother for making this decision, as I said before, it was not the right decision for me.

All this to say the choice that Julia made was indeed a very personal one and I will not hold that against her, but what I do take issue with is her justification for terminating and her description of  Arthrogryposis.

Here is a little of our story:

  Jackson was born on February 8, 2007 at 8:14 a.m. via C-section, because he was breeched. When my O.B. came back, she asked them to have the neonatal team ready, as we knew that Jackson had been given a diagnosis of Distal Arthrogryposis (meaning he would have club foot and hands) and that sometimes children with Arthrogryposis can need a trache. So they proceeded with the section and when Jackson was born, they all yelled "It's A Boy!" I heard him screaming and that was all I needed! Well, they whisk him away and we don't see him again! This being my first section, I didn't think it was that much out of the ordinary. So they fix me all up and tell me that they are going to take me out to see Jackson. And we wait and wait until finally my nurse comes back in and tells us that Jackson has some tubes and wires, but they are helping him, then they roll me out to see him. What a shocker! We later learned that Jackson had to be "bagged" to help him breath, as he had swallowed amniotic fluid on the way out and possibly had some lung weakness. Shortly after his birth, Jackson was given a diagnosis of Amoplyasi, but now they are not sure that is correct---all we know is that he has a form of Arthrogryposis. But hearing those first cries, I knew our Jackson would be a fighter, always was and still is!

Arthrogryposis is not a death sentence; it is not a painful condition, there are no cramping that we have ever heard about from any doctor, therapist, or adult with the condition. Yes, those with the diagnosis are more likely to develop arthritis at an earlier age, but in and of itself, Arthrogryposis is NOT painful—all of the adults I have met will tell you that. They will say that therapies (physical, occupational, etc.) can be uncomfortable, but NOT PAINFUL.   Julia states “ He would never be able to walk or stand; never grasp anything, never be able to hold himself upright. He wouldn't even be able to suck his own thumb for comfort.”  My son, Jackson is now 2 years old, to this day, he does not stand or walk, without assistance. When he was born, we were not sure if he would grasp things, today he does grasp, but cannot feed himself, and it took a very long time before he could hold himself upright. But I am here to tell you that he leads a very happy and fulfilled life. Our “normal” includes therapy 3-5 days a week, several trips to the doctors across 2 states, but it doesn’t mean that life is not worth living for him or for us.

Jackson’s life and living it with him has changed mine and my husband’s. One very bright light through all of the struggles we face everyday has been AMC Support, Inc. This non-profit organization runs a support group board at www.amcsupport.org. I found the site just a few hours after Jackson’s diagnosis inutero.    I found there, parents and grandparents whose lives were forever changed by their amazing miracles---their children and grandchildren with Arthrogryposis. I also met several adults with Arthrogryposis, they are simply some of the most outgoing, helpful, & open people I have ever met. And everyone we have met tells us, they would not change one thing about themselves and especially not take away their Arthrogryposis, because it makes them who they are!

In closing I will say that every day is not all rainbows and sunshine, there are days when it rains, but our lives, including Jackson’s, are nothing short of wonderful and beautiful. I have taken 2 pay cuts since Jackson’s birth, so that I could take him to therapies, doctors, etc. It is tough financially to raise a child, especially one who is differently-abled. Insurance is a battle, every new therapy is a battle, carrying around a 26 pound child who can’t hold on to you is a battle; but everyone of these battles make me a better mother, a better daughter, a better wife, a better friend and our family that much better. And I have done things I would have never done before Jackson and I have met people I would have never met---one of those people is my very dear friend who sent me this article. Do I want life to be “easier” for Jackson? Yes. Do I want him to walk NOW? Yes. Do I want him to feed himself efficiently? Heck, yeah. But would I ever change anything about him or my life since him? HECK NO!

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