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, November 10, 2013

Day 24--ANC 5000...WHOA!!!

ANC 5000, Hemoglobin 9.0, Platelets 69

Alice tried three bites of chicken noodle soup stayed down.  She later asked for a pickle, but it hurt too bad to eat it.  Certainly her mouth must still be very tender.  Grandpa Fish has been with Alice today, they went for a walk outside.  It was such a beautiful day, I am happy they went outside.

She walks so's like a duck waddle.  I giggle when I watch her walk fast.  I can't wait until she can run.

Tyler and I were able to get to church on time today.  It's not saying much for us because church is at 1:00 p.m.  Well actually he was on time with the boys, the girls and I came during the opening song.  So technically we were partly on time.  I was feeling good about that.  The children were part of the sacrament meeting (primary program), they sang and shared their parts well.  Natalie however, missed her part and most of the program.  She had an asthma attack during the meeting so I took her home to care for her.  I was thankful I had oxygen and a nebulizer.  I think it was half anxiety inflicted…understandable.

I have been thinking about a few things lately, and have decided to share them.  I mostly want my kids to read this in 15 years or so when they are parents.  It may prove to be helpful.  They can learn from my mistakes. :)

First of all, I will admit that being a parent has been hard for me over the past couple months.  Life has been all over the place for us and things have been very un-routine and chaotic at times.  To be more specific I have disliked disciplining my children very much so!  As if this is new information...I shouldn't lie, when have I ever enjoyed disciplining?  It just seems to be more difficult when I am not with them consistently. Consistency is hard enough for me when it is available, now my challenge has grown.  

I keep wondering if I have enough patience for them, sometimes I wonder if I have too much patience and should just spank them when "I think" they need it.  I find that yelling makes me feel good for about two seconds and then I quickly learn that it only heightens the tension and creates a ripple effect of unpleasant mimicking one toward another.  

Some nights ago when I returned from the hospital I started assigning jobs to the children...a dreadful process.    
I know when my kids haven’t worked enough, when they complain about unloading the dishwasher, how easy is that?  Nobody wanted to work, including myself, I was spent.  I have learned many times over, that it is during these moments when our unattended emotions lose control and spill out all over.  Meltdowns for everyone!
Our poor children are strong as they go with the flow during these challenges of inconsistency; however strong they might be...they have emotional meltdowns too.

I of course react naturally (impatience)...isn't that natural?  Once that route doesn't work I decide to try something else...then something else...then something else, all in which involve threats and demands and whatever else I can muster.  This is far too exhausting and such a waste of time and energy.  

Why so complicated...when it is so simple.  I finally decide to think with my heart and not my head.  The real matter is not the petty subject at hand which caused the chaos, but it is simply the matter of taking each of my children one by one and telling them how much I love them and how important they are.  I tell them that even though I am not always home I still think of them every day and wonder what they are doing.  I tell them that I pray for them.  I worry if they are warm at night. I worry if their friends are not being nice at school....all the while I am hugging them.  A hug is sometimes the best discipline.  Usually when all this is done, whatever is left to discipline is far more manageable...and without realizing the dishwasher is easily unloaded. :)  Hmmm...funny how that works.

I shared a story with Matthew about a sweet woman I met at the hospital.  She cleans our room.  She is beautiful.  She came to America to find a better life for her and her family.  Unfortunately she had to leave behind her younger son who was only five at the time.  She couldn't afford to bring him.  She works two jobs and sends money home to her son.  She hopes in 2015 that she will be able to see her son again here in America.  When they meet again he will be 13 years old.  She told me that every night she cries herself to sleep because she misses her baby.  She works so hard and never complains...just smiles.  

Matthew was very touched by this story and realized that he could be strong for a couple days without Mom and Dad together.  He understood that even though our trials are hard, we are SO very blessed.  

I know when Matthew knelt beside his bed to pray that night, he was thinking of that mother and her boy.

Each day is HARD in its own way, but being grateful is what makes the hard EASIER.


1 comment:

  1. Beautifully said my friend! Please remember not to be too hard on yourself. It is SO difficult to be a 'normal everyday parent' when you CAN'T! It just is what it is! I had to come to realize that the lessons we think our kids should be learning will just have to wait while they are learning OTHER lessons that the Lord knows they should be learning right now ;) You are exhausted and so are they…keep hugging them and before you know it, life will be more consistent and boring ;) I love you!! You guys are AMAZING parents!!!