The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Wednesday, November 7, 2012

Rehab Visit for Natalie

Natalie visited the Rehab center in American Fork today.  The therapist did well helping Natalie feel comfortable.  Natalie didn't want to go, once she began the session she warmed up.  It was interesting to see how they test the cognitive processes of the brain.

The therapist was very good.  I felt good about the visit.  He confirmed that the injuries on her brain are indeed affecting the way she is able to process information.  He was able to explain the many things Tyler and I have not been able to put our finger on, even describe to another.  He gave us specifics.  The therapist is hopeful that he can teach us the tools necessary to help her brain compensate and bridge the gap that exists.  This will make a huge difference in Natalie's future.

I am anxious to get to work.

I will explain more details later, as we learn more.  It's fascinating to me.

Tyler and I are trying to be careful that we don't provide a crutch for Natalie.  As long as she works hard and views herself no different than another we can be successful.  We try not to give her excuses as to why it's harder for her to understand things.  We reassure her of her strengths and remind her that she is capable of great things, and that it's important to work hard and never give up.  We have hard days...this is inevitable.      She came to me a couple days ago in tears, after working on some homework.  She said, "why don't I get it...I can't understand."

At first I wanted to tell her that she had experienced severe seizures and therefore her mind isn't able to process information as easily as it normally would.  I wanted to take away her heartache and make it all better.  I caught myself before speaking...I immediately sat down with her and told her about the life of a Caterpillar.  She knows how Caterpillars become beautiful butterflies, however, she didn't know how they have to endure immense pain and pressure before they can be beautiful. If they skip this vital step they cannot fly and will never see the beautiful earth from another perspective.

I'm not sure how much sunk in or was understood, however, she seemed satisfied.  There will be many more  similar conversations to come, I'm sure of it.

I am reminded of how thankful I am for hard things, despite how tricky it can be sometimes to recognize.  I would be very sad if I arrived into the life hereafter and felt I didn't get to experience the fullness of victory, accomplishment, and growth .  I know Natalie has endured far more than most can imagine...she must have a great reward in store and a triumph to cherish. 



  1. I am so glad Natalie has such wise parents! It is hard not to give our kids crutches but at what point does it make them give up too easily because of all the things that have happened to them. Emily's teacher this year gave me this one request, "Don't give Emily excuses...just keep telling her how smart she is and that you KNOW she will get it with time" It has been great advice. I hope this therapist is exactly what you need to help sweet Natalie! Good luck!

  2. I love that I get to read these wonderful updates on you & your family. I always learn so much from your insights. Thank you for sharing your thoughts. I just love you! I'm looking forward to hearing more about the neurology appoinent. Xoxo for you all from us!

  3. I'm glad you are getting answers with Natalie - we love you all and are praying for you!