Thursday, July 15, 2010

It's Time To Write

Wow. Where to begin...

For three years I have been a CASA - short for Court Appointed Special Advocate. I advocate for children who have no voice because they are caught up in the foster care system. I am told I am good at this job. In truth I have been an advocate all of my life – long before I was a CASA.

Today I am a mother – a child of God, a wife, and then a mother. My two children are almost one and a half years old. They have been sick all their lives; although by the grace of God it would be hard to see it if one did not already know. They began their short lives in constant pain, and still experience it frequently. They are repeatedly coming down with the latest viruses to hit the region. They cannot eat food. Literally, they drink a medical food as their “sole source of nutrition” – of how important those exact words have been in our journey.

It is time to write.

I struggle to keep it all straight after so much time and so many doctors. Each one telling me that they are fine. “It’s probably just a virus.” We were told this by their pediatrician at six weeks old as they passed mucus and blood filled stools (which had been getting increasingly worse since birth), and developed matching diaper rashes of open seething ulcers. Are you kidding me? A virus? We had been in the doctor’s office at least twice a week at that point dealing with this.

Every spare moment I had (which was not a lot with two new babies AND my own debilitating illness) I spent researching their symptoms. A few days before the “just a virus” comment, I stumbled across an infant formula that was literally IMPOSSIBLE to be allergic to. There was no clear test telling me that they were allergic to milk or soy, but we had tried all of the formulas in the store – all of them. When I asked the doctor about this liquid gold called Neocate she said; “that’s really expensive.” Again, are you kidding me!? For all she knew I was a multi-millionaire. She hadn’t even mentioned that this stuff existed.

$43 and 24 hours. That was all it took. The rash was gone. The babies whom I had spend 16 hours a day trying to feed just so they would get enough calories to grow, suddenly wanted to eat.

This is only the beginning of the story of my battle with the medical world. It is sometimes difficult for me to remember all the details unless I sit down and think about it, and I don’t want to forget. I feel that we are at a crossroads in this battle. My countless hours of research, my own battle with health and the medical world and faith have me believing that we are on to something – that we finally may have figured it all out. Maybe someday I will write the rest of the story that precedes this entry, but for now, I can’t imagine losing the details of what God is about to do.

We are at a crossroads, and it is time to write.


  1. Nichole (and Shawn), I applaud you for the way you have kept your head up through all of this. I couldn't even begin to understand each detail of what your daily life consists of. Ty and I talked about it, and we'd like to send you $43.00 to help you buy some formula for the babies.

    I love you. We love you. Keep fighting.

    Brittany and Ty

  2. Thanks Brit. We love you two. We are going to be setting up a trust fund for Mari and Ryker and start trying to raise money for the next "phase."