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, October 28, 2012

Sunday--Home With the Girls

Tyler took Matthew and Blair to church with him today, while I stayed with the girls.  We had a good time playing and eating.  Evie was in heaven to have much of my time as I just played with her.  Natalie was a little sad she could not go to church.  We played UNO, Flippin Frogs, Blocks, played in boxes and baskets, and read from The Friend Magazine (Natalie's favorite).  It was fun...until I turned on the church music (Mormon Tabernacle Choir singing Primary Songs).  Natalie bursts into tears and said, "I want to go to church!"  She misses that feeling of church.  It's true there is a special feeling at church.  I know she feels it at home as we read scriptures, sing primary songs, etc.--but you really can't replace being in church.

I tried to console her, she said, "Mom I wish the doctors would let me go, can you ask them again?" 

Who knows...maybe it will be sooner than we think. 

Usually kids don't want to go to church because it's too long and boring.  I remember thinking this when I was little.  Maybe the trick is to tell them they can't go...then they will want to go ;)  Isn't that how everything works. 

MAYBE...we are closer than we think we are.  I hate to speak too soon, however, it's been almost a week since the girls' flu shots.  So far, no hospital stays, and no fevers.  I know for a fact, had they had a flu shot with their original immune systems it would have been disastrous.  Tyler mentioned that he wrote in his journal that possibly this is the first moment of evidence that things are working the way they should in a healthy immune system.  I said to him, if this be so, then it is a reason to rejoice.  I pray that our feelings are true and continuous.

Natalie was able to have her friend Grace over for a late night recently and they had a great time.  It was awesome to see Natalie interact like everyone else.  Of course Grace and Natalie are two peas in a pod, and entertaining each other is effortless.  I need to say for journal purposes that Grace has been a HUGE blessing for Natalie.  She totally understands and relates to Natalie.  They act like's so cute.

No clinic tomorrow...we are carving pumpkins.  Tyler's favorite thing to do with the kids...and sometimes without them ;)  I have no idea what he has up his sleeve this year.  I'm sure it will look great.


Our favorite toy...A Box.  These two can't hear music and not put on a tutu.  They dance to everything.  I'm so glad we have plenty of princess things and tutus.

I asked Natalie to watch Evie while I took a shower.  This is what I found.  

She had to find a basket somewhere...which means whatever is inside is now on the floor.  It was worth the shower.  It doesn't matter anyway...all things are dumped out.  My least favorite is when they tip over a garbage can for a stool and it doesn't matter whether it was full or not.  Some things we will only miss when we our children are grown and gone.

Natalie requested her favorite dinner...baked chicken legs.  Evie loves them too...and doesn't like help eating them.

1 comment:

  1. SO adorable! I know I ALWAYS say this but seriously, can they get any cuter?
    Emily really missed church too...we all really missed going together so finally I got fed up and decided to try having her go to sacrament with a mask on. She was willing because she wanted to go so bad and we sat on the front row so we weren't surrounded by tons of people and got the sacrament first :) when it got hard to keep the mask on, we went to the Relief Society room and turned the speaker on. it was better than nothing but wow how awful we sounded trying to sing by ourselves :) I took her home after but her primary teacher would always come to the house each week and teach her the lesson that was taught. It was so sweet and meant a lot that the teacher would go the second mile like that. It just helps them feel more "normal" I hope you have a wonderful week full of spooky goblins and pirate legs :)