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.

Tuesday, October 9, 2012

The Would Ifs and If Onlys

Clinic was good good as expected.  Natalie had plenty of labs, which is always a struggle, but she did it.  Alice received another shot of Nulasta.  Counts are okay, we assume.  Natalie's were still pending when we left...I have yet to hear back on them, however, they should be okay.  Alice's ANC was 400...thus the Nulasta.

I was able to visit with the doctors for a bit (non-related to our day's visit).  We do have some great conversations, however, this time they just listened to me as I expressed my emotions regarding Natalie's recent hospital stay that gave us quite a scare.

We discussed the oddness of her seizures going so long (3 years) undiagnosed.  They had no tangible characteristics of seizures, thus they were overlooked as something less complicated and serious.

I shared with the doctors all the things I wish I would have done differently during her illness of swine flu (in which these seizure problems stem), as well as all the things I wish the doctors and nurses would have done differently.  Also I was expressing concern and frustration as to why it took three years to realize that her little "funny feeling" episodes were actually seizures.  I told them I just wanted to vent for a they let me.

Let me tell you what happened...something I want my children to know.  Something that will be a part of any life's experiences.  As I was sharing my feelings about the would ifs and if onlys; I began to understand something I thought I knew.  It will be hard for me to explain.  I will do my best.

Over the past eight years since Natalie became ill for the first time, Tyler and I have wondered on many occasions:  Did we do it right?  Should we not have given her those immunizations?  Should we have taken her to the doctor sooner?  Was there something we could or should have done differently?

There are more questions of the sort than there is time to write.  Regardless of what did or didn't happen, the most important thing to understand is that we did our best.  Everyone did their best.  It occurred to me at that moment in clinic that we HAVE received the best case scenario regarding the well being of our children.  The nature of the beast has left its mark, but only a mark.  I felt a peaceful feeling come over me as I allowed myself to accept the idea that Heavenly Father has provided the best case scenario.

Another influence less desirable would want us to adopt the concepts of...if only we did this, or if only we did that.  This is a dangerous way to think.  It cannot change the past nor will it better the future.  It's safe to take comfort in the truth that when we are striving to do the best we know how--the if onlys and would ifs carry no's best to abandon them. 

When we left the hospital that day, I thanked Heavenly Father for teaching me a lesson that I needed and one that I will continue to need.  Of course we will experience sorrow, heartache and regret in this life; this is mortality.  However, the Lord does not intend for us to carry this in our pockets all day long.

Lastly, Tyler and I feel relieved that Natalie is doing well.  This last scare was a blessing in disguise, as it surfaced something more threatening.  Its funny how many "blessings in disguise" we need to experience...I think we have filled our quota for a while...that's my vote anyway. :)


I love the children's book Zen Shorts---this post reminds me of that book.

Natalie liked the Halloween decor in the gardens.

As always...requested by Alice to make a wish in the pond.

Natalie said, "Mom I just want to touch the water without sanitizing my hands after".

Good Morning Alice...ready for clinic?


  1. Thank you for sharing this experience. I too have two medically fragile children. I write about their experience here: They have unspecified Leukodystrophy and I understand that it is often hard to not ask the what ifs and if onlys. I have been following your blog for some time now, and your families positive outlook on life is amazing. You have all been through so much. I hope and pray for the best for your girls!

  2. What a beautiful testimony Lisy! The lessons we learn in this life...if we allow ourselves to learn them...are priceless and make us the people we are today. Thank you for sharing your sacred moments. I love you dearly! Your girls are so lucky and blessed to have you and Tyler as their parents!

  3. Lisy you always have such a sweet, honest, and positive outlook on things (thanks for sharing!) love and miss you!

  4. Lissy you are amazing, I truly mean that! I am amazed that you are always so positive and can see how the Lord has blessed you even in your darkest hours. You are my hero and I'm so blessed to know you and your sweet family. As always you guys are in my prayers and thoughts!