Saturday, June 11, 2011

"Comfort or Conflict": Part 1

PhotobucketPhotobucket
Of all the descriptions used to describe Down syndrome, the only one that still makes my heart quicken and my stomach flip is an average life expectancy of 60 years. Photobucket
I may or may not be around when Calvin is 60, assuming he lives that long (of course I am aware a)he may live longer and b)our life expectancy is simply unknown, syndrome or not). The fact that he has Down syndrome does not make the thought of his passing any easier than the thought of Evan's or Nolan's.
PhotobucketPhotobucket
When Calvin tips over in the tub, my heart nearly explodes out of my chest. I was scared about Calvin coming out of heart surgery. I will cut his food into just as small, if not smaller pieces than I did his brothers'. You know that force that exists between a parent and child when the child cries? The one that disengages all other senses and pleads for you to swoop in and save your upset or hurting child? I am happy to report it is just as strong, if not stronger, with Calvin.
Photobucket
My natural desire as Calvin's mom is to see him live a healthy, safe, long life full of love and support. That is exactly what I pray for his brothers as well.

I left Children's Hospital on May 20th, 2010 and immediately called Joe (he was in California on a work trip). I cried and could barely choke out the words. I had to read the piece of paper that said "complete AV canal heart defect". I did not even know what it was. I could hardly go any further. I told Joe about the possibility our son had Down syndrome. Down syndrome trumped a heart defect?! I had so many people say they would be more concerned about the heart. I wasn't. You know what our questions were?
PhotobucketPhotobucket
"How long is he going to live?" "Is his life expectancy shorter?" I was a mile away from the hospital and that is what these expectant parents were discussing. In other words, it was the top of our concern list surrounding Down syndrome.
PhotobucketPhotobucket
It hurt. We loved him, that is why it hurt. We would not love him any less because he has Down syndrome (Ds), and that is why it hurt. Some people choose not to continue their pregnancy once they find out their unborn child has Ds.
PhotobucketPhotobucket
An amniocentesis can be performed as early as 15 weeks gestation (mine was 28) and the "fetus" can be aborted (each state has laws as to how far along the baby can be). Many mothers have begun to feel their child move about. They feel life. This has deterred some women from the pending abortion. What if a test could be conducted as early as 8 or 9 weeks of pregnancy, before other people know or notice or before the parents can feel the baby move? Would the child be easier (in the emotional sense) to abort?
PhotobucketPhotobucket
The answer is 'yes'.
PhotobucketPhotobucketPhotobucketPhotobucket
Such test is expected to be available next year AND it will be a less invasive procedure: a blood sample collected from the mother.

My online friend Erin Witkowski (of Skiing Through Life) was interview by the Associated Press in New York and here is a video of her reaction, along with a written article.

I will continue some of my thoughts in "Comfort or Conflict": Part 2
PhotobucketPhotobucketPhotobucketPhotobucketPhotobucket

5 comments:

  1. Love love love all the pictures.

    Like you, I used to think often about the life expectancy. Then I thought, we never know just how long any of us are going to live. Now, I find myself worrying more and more about Andrew's and my life expectancy. What if we pass before we have taught Ellie everything to make her self-sufficient? She has no siblings. Family is far. I cannot live forever. Life is full of what ifs and as parents, I think it is completely normal to worry. When as parents, we have children with different needs, we worry even more.

    This new test scares me. It only tests for Ds. Why must Ds be singled out? I worry that there will be less and less families who have the joy of raising a child with that extra special chromosome. I am ready for your Part2!

    ReplyDelete
  2. Great post...absolutely love the pictures. Calvin is so adorable! Yes, the whole abortion issue tears at my heart because they make it so easy for families to do it at such a vulnerable time in their life...without all the facts. As the comment before me said, I too used to worry about life expectancy. Now, for whatever reason, I do not. The future is so uncertain for anyone you can waste a lot of time on worry. I have a peace knowing God will always be there...and provide for her, for us, for ALL OF US. That is the greatest comfort of all!

    ReplyDelete
  3. Great post!! I remember being told Russell's life expectancy as well, it crushed me. No on wants to be told right after their child is born how long he can be expected to live for!!!
    Beautiful pictures :)

    ReplyDelete
  4. Great pics! Absolutely adorable.

    Those new tests petrify me as well. And make me unbelievably sad. I wish everyone knew what a absolute blessing a child with Ds is, even though I understand and know what heartbreak and worry you go through when the diagnosis is given. *sigh*

    ReplyDelete
  5. Love the pic of Calvin and Nolan. The look Calvin is giving you is so cute.

    I wish people had all the information possible before they make a decision like that. There are SOOO many couples who would do anything to have a child, and others who throw away the opportunity for whatever reason. We chose not to have any genetic testing done, as we knew no matter what it would not bring any change to our pregnancy.

    ReplyDelete