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.

Sunday, July 15, 2012

Ramble On

I think we've all at one point in our lives have been given advice or understanding from someone we took for granted or just plain blew off. So from the very beginning of our girls journey, when the doctors told Lisy and I it would be at least a year before our lives would become close to normal again, I thought: “sure, it will be tough but we'll just saddle up and get it done." I realized now how green that thought was. As we work to keep the girls healthy and out of the hospital the other responsibilities start to weigh down on both of us and little things can start to loom large and before we know it we get bogged down in arguments on subjects that never had any worth in the first place. Just being quarantined is enough to get us riled up as of late. The other day I had become frustrated enough that I told Lisy, "I need to get out of here." She asked where I was going, and I replied with a terse, "I don't know yet." But I grabbed the keys and split. I was far too short with her, and knew that I would need to apologize when I returned. I made it to the parking lot a few miles away, parked the car and wondered what the conversation would be like when I decided to man up and go back home. A couple hours later when I pulled up in the driveway I noticed Lisy wasn't home. She had piled the kids in the car and went for a drive. (When the kids are too much a drive is how we get them to calm down.) When she came home, I apologized and for the life of me, I couldn't remember why I became so short. We both realized how strung out we have been these past couple weeks and let whatever it was that was causing the strife go. It wasn't our first argument and it certainly won't be the last. But as long as we remember why we love each other; at the end of the day we can always seem to find ourselves back on the same page together.

We are so thankful for the sent packages of games and projects for our children to do. They have been a life saver for Lisy and I as they have kept the kids busy and productive.

Today is clinic for the girls. Natalie of course is not looking forward to it, but Alice is. The doctors have been hinting that soon they will be able to remove their lines.



  1. The memories! It is SO hard not to let your frustrations out on the ones you love the most! When our daughter was first diagnosed someone told us...this trial will either tear you apart or make you stronger than you ever imagined. My husband and I decided on the latter...we had to stay committed to this, just as you are but as you already know, it is SO WORTH it! Can you even imagine going through all this ALONE?? The thought brings shivers down my spine :) You guys are doing amazing. Thank you for being honest. I hate it when people paint the picture that everything is always could it be? Thank you for being human :) Praying for a good clinic day for both girls!

  2. I think of you guys when I'm tired and don't want to get up in the morning...I do not know how you are managing...our girls pray for your girls and they ask me, "Is Heavenly Father going to know that we aren't really praying for 'fishes' and that we are praying for those girls?" :)