Tuesday, January 24, 2012

A Bad Idea

Last night I did a first... I Googled different genetic disorders.  Big mistake.  I found one that matched a lot of Dominic's features.  Then I remembered in the NICU when the geneticist saw him for the first time she thought he had a syndrome that affected the 4th chromosome.  The syndrome I found was from a deletion of the p arm of the 4th chromosome.  The features of the kids I found looked so similar to Dominic when he was first born, it was freaky.  Then I started reading the prognosis for these kids... bad idea.

So I know he doesn't have this particular disorder (because two chromosome studies say so), but boy are there so many similarities.  Dominic has all of the features of this particular disorder, plus many, many more.  I realized last night why all of the doctors say he is so confusing, like he is a modge podge of several different syndromes.  This syndrome has like 5 traits, all of which Dominic has, plus about 10 additional ones.

After an hour or so of reading about this, and getting totally upset, I stopped.  Like I said, the prognosis for these kids is not good.  I realized last night that I don't really want to know the name of what Dominic has.  I have so much hope for him right now.  I see him as a toddler, a child, a teenager, an adult.  I don't really want to know if his disorder has a short life span.  I'd rather keep my hope.  I don't want to "prepare" for a grim future.  I want to look at that sweet, fat little man and hope for a long, happy, meaningful life.


  1. Dear Chasity,

    Now is not the time to ponder the future. I speak as a mom with some experience in this venue. You need more time to heal, and to regain some normalcy. However, at some point in the future it is necessary to face the negative possibilities completely. If you can not mentally/spiritually face the suffering when times are comfortable then you will be spiritually more vulnerable to despair when the suffering arrives. I personally have found that by being open to preparing for suffering ahead of time, I have been more open to receiving graces when said suffering appeared. Job Chapter 1 verse 21 is something to reflect upon.


  2. Chas...1 There is a special time for everything. There is a time for everything that happens under heaven. 2 There is a time to be born, and a time to die; a time to plant, and a time to pick what is planted. (eccl. 3:1-2)
    God has picked Dom to be born at this time, in this way, to you...He has a wonderful plan and He is the God of impossiblities!! That's all any of us can do...have faith in His perfect plan. None of us know what tomorrow brings...live today for His glory! (love those babies!!)When suffering comes...He promises to be with us/help us through it...give us peace! Love ya sister! Julie

  3. He is tough...and loved. Those are two things that he already has going for him! I will keep praying for y'all. -Billy B.

  4. I hear ya! It is hard to think on difficulties, sufferings and loss. It would be easier not to know, but at the same time, it is not something we can avoid entirely. I will pray for you. Pray for me. Lately I have been pondering the difficult things of having a child with a chronic life-threatening illness.