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, January 25, 2012

An Extra Post From Home

I have so much on my mind and in my heart lately. I don't really know how to express myself sometimes, but at least I will give it a shot. First of all, if I could--I would individually thank every person who has sacrificed in any way for our benefit. Which is many, and we are aware of you. I wish I could write, call, or email each one of you. I would write a letter expressing the gratitude we feel. Frequently I find myself praying before bed or throughout the day, expressing heartfelt gratitude for all of you who have helped. I hope that you would be blessed so much that you wouldn't know what to do with the many blessings...because there were too many. :)

The love, support and kindness shown to our family has made all the difference in the world. We know prayers are being answered!!

I have managed to organize all of Natalie's meds and home infusions with the nurse so I am feeling better about the critical things. It was initially overwhelming, and will always be time consuming. She is fairly cooperative to take them, thankfully. When I picked her meds up from the pharmacy before leaving the hospital I wondered if I should have taken the little red wagon with me, to retrieve them all. :)

I wanted to share some little things about the sweet and painful emotions I have felt over the past little bit.

The day Natalie came home was so special, boy...did she earn it! She is so HAPPY to be home. Now Natalie, Matthew and Blair have each other and that is all they need.
I felt thankful and excited for Natalie as we left the hospital, although, half of my heart was left behind. I felt strange leaving with Natalie. I kept telling Tyler I felt like I was forgetting something. Well I was, my 2 year old. She has been asking Tyler periodically to get Mom as she points across the hall. She still thinks I'm just across the way. It breaks my heart. She feels terrible and I just want to rock her day and night. I Skyped with her tonight and I could tell that she was emotional and homesick. What a beautiful day it will be when she can be home with the rest of us.

When Natalie went back to the clinic today she wasn't happy...she didn't want to smile at anyone. I know it's because she wanted to stay home and bask in the life here. She has been so content to be home. However, it was cute because she asked if we could look through the door of her empty hospital room. She must have felt some appreciation for it, because she smiled when she looked in.

I can't lie, it has been hard for our family to be in different places.
I think we are all quite wimpy because we don't do well scattered. Just to explain, the boys have a room and the girls have a room...not sure why we need more than one room in the house, they end up in the same bed like sardines every night. By morning all the children are in my bed.

Tyler said to me recently that it will be a sad day when the kids stop coming to our bed in the morning. It's our time to lay next to them and talk about anything and everything.

Somehow Blair manages to end every conversation with a discussion on viruses. When he doesn't feel like eating or something doesn't look good to him, he will tell me, "I just have a virus coming up in my body so I can't."

Yesterday Natalie told me she hopes her hair doesn't grow back. I asked her why she didn't want hair anymore. She said, "because I look better without it" thank you to everyone who have complimented her and gave her such confidence. She feels so beautiful--and she is!

I can't say enough about how good it feels to be with my children. I get nothing done all day...and I'm totally fine with it. I have had more fun playing silly games (mostly made up), and have been completely engrossed in the most intriguing conversations, than I could imagine.

Natalie's agenda is to PLAY and PLAY. We played hide n' seek tonight and the rule was you could only hide in the basement. I must have looked for Blair for 20 minutes. I started to get nervous. When I had passed the kids bathroom I noticed the toilet paper roll was empty so I decided to fill it while I was there, I opened the cupboard below the sink to get a new roll and there was Blair grinning from ear to ear.

As fun as it is to play games all day, reality awaits us...just wait, as soon as I begin assigning jobs and beginning school work, the meltdowns will happen--it will become a challenge to incorporate some structure again, but will be much needed and appreciated by all.

I've decided while in quarantine to take advantage of each moment with my children and teach them at any opportunity that passes. When Matthew asks about how earthquakes happen, we have a lesson on geography. Natalie asked me if the planets are going to blow up some day. Not sure if I ever told her that one. Bliar's response is so simple..."I'm so strong I can stop the earthquakes."

Even in difficult times life still passes in a hurry, I wish there were a way I could stop the clock or slow it down. Time is a gift, but sometimes it's hard to hold on to.

Thanks again for everything,


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