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.

Monday, December 31, 2012

The Reality of It All

Interestingly I have started this post several began months ago and continues to linger on my mind.  I want it on my blog, because someday perhaps my children will read this.  I want them to know the reality and the truth about how it (this medical journey) all happened.  I also want to share it publicly because Tyler and I feel like it is important for everyone reading to know and understand The Reality!

Tyler and I are your average basic people, there is nothing spectacular about us.  We make mistakes every day.  Some days are considered good and successful, other days are discouraging and difficult.  What we have been through over the past several years has been anything but average.  We tread a difficult road.  There are many people who have rough roads to travel.  Not one person travels with smooth paved roads of gold....ours just happens to be like those in Radiator Springs. ;)  that was for my boys...they love Cars.

The good news is that we don't feel like our road is less desirable than another.  We are happy to be where we are.  What we do is specific to us and we feel blessed and honored.

I want to share some of the reasons why we feel so blessed and honored as I answer the question we tend to be asked most often...that of---"How do you guys do it?"

First of all, we feel an enormous amount of trust in God.  We know that he does not make mistakes.  We feel so blessed to have the children we have.  It is not chance that Natalie and Alice came to this earth with a  malady.  Tyler is 1 in 40,000 and I am 1 in 40,000.  The odds of us finding each other are phenomenal.  It happened and we have never regretted it since.  The blessings that have come to our family through our health struggles have provided us with a better understanding of who we are and even a better understanding of the purposes of this life we call mortality.  The blessings in store for Natalie and Alice are experience such struggle that others may gain strength is among the most selfless deeds.  They themselves will perhaps be strengthened beyond their age.

Second of all, we feel that our journey has not been traveled alone.  It's mighty difficult to feel alone and discouraged when you have many people cheering for you and telling you that they are praying for you and your family.  It's tangible!!

Again, the question of---"How do you guys do it?"  Simply answered I would reply in two parts; just as I said--1. Trust in God:  2. Receiving help from others.

The two answers I have provided need explanations.

I want to be specific and write of the sweetness we have experienced from others.  I have hesitated to do this earlier because I was worried I might forget something.  I couldn't possibly list all the ways people have served us, please know that we have been blessed by every single act of kindness, regardless if it's mentioned or not.

Tyler and I understand how much work, time, energy and resources have been given in our behalf...we can't express in words the miracles that have taken place because of it.

We live in a beautiful home that is ideal for our is not ours.  We drive reliable and comfortable cars...they are not ours.  We, the entire family wear new lovey clothes/shoes that we did not buy, but were purchased/donated in the perfect sizes to fit each nicely.  On occasion Tyler takes me out to dinner, he thanks those who provided the means to do so by way of gift cards, etc.  We are thankful to those who have watched our children when we could not be with them.  The children have lovely quilts, games, toys, books and learning tools to keep them busy and engaged.  They have dress ups, they have luggage for the day we get to travel somewhere, they have warm snow clothes, arts and crafts to be creative and innovative.  We have had help with cleaning when it was most critical. We have a personalized laundry service...the real kind of service, the kind that is rendered without a tangible reward. We even had a lovely garden that we did not plant, yet get to enjoy the harvest.  The children have bedrooms decorated especially for them...again something we could not have had time, energy, nor resources to do so, but meant so much to the children.

The meals that have been shared by neighbors, family and friends have been incredible.  Imagine what it's like to have someone fill your entire freezer with the best meals ever, it's amazing, to have a friend bring dinner each week.  The time sacrificed by many in organizing fund raisers to allow Tyler to be home and able to take care of his family in such a time of need is beyond explanation.  Packages that arrive at the door-filled with excitement, the letters and notes, words of encouragement, texts, emails, comments on our blog and much more...So there it is----THIS IS HOW WE DO IT!

It's an incredible thing to look around and every little detail is a constant reminder of that someone who loves us and cares about us.  Everything about us is from the sheer goodness of another's heart.

It just happened, we did not ask for such blessings...they came.  People are good.  People are selfless.  There is no doubt between Tyler and I that we could not have made this journey thus far without the selflessness of others.

Our family unity can be credited to those who stepped up and gave of themselves.  It made it that much easier to do something extraordinarily hard.  It would be too easy to say, 'this is too hard--I can't do this' without support and encouragement from others.

The old saying 'When the going gets tough...the tough get going' needs an addendum.  I will make my own.  'When the going gets tough...and people come together...anyone can get going'.  You are what you think...if someone tells you that you are great--you will be.  If you tell yourself you can do this--you can.  The only thing that keeps us from success is our self.  A positive mental attitude is the first recipe to success...mostly a positive mental attitude is obtained through the kind deeds rendered by others.  We have been able to stay positive with the help of others.

When we first embarked on this double transplant journey...we knew that we were over our heads.  We knew it was going to be bigger than us.  Of course we wanted to do it without help, being independent is a natural healthy desire.  Something better happened though; we felt the importance to accept help.  It's not easy to accept help.  Allowing others to serve and give of themselves has blessed our family more than anything we could have provided ourselves.  We have a deep appreciation and understanding of service.

Our prayer is that the kindness showed to us will be returned in some manner times ten.

So press forward we will...with smiles :)



  1. Lisy, you're amazing. I'm so glad I get to call you my friend. We received your wonderful package and opened it on Christmas. I'll be sure to send a more formal thank you by mail, but in the meantime, please know that we appreciate your thoughtfulness and kindness. Happy New Year to you and all your beautiful family!

  2. Lizy, that was beautiful. You are beautiful. My life has been forever blessed and changed by your journey. The Lord loves you so much! Thank you for having trusted me in such a big way. Illness and circumstances may separate us, but know not a single day goes by that I am not reminded of the gift you are to me and the tender mercy it has been to see many miracles- because you and Tyler allowed me in. I'm forever grateful. Love, Wendy

  3. Wishing you and your family a great new year! You are still such a great influence in my life. xoxo Desiree

  4. I've been reading your blog since the I found it last year from single dad laughing. Your family is inspiring and I'm grateful others continue to bless your sweet family. May God continue to shine through you all.

  5. Beautiful. Thank you for the reminder of the generosity of life! It's also a reminder for me to take the extra step to do something for someone else whenever I can.

  6. Perfectly and beautifully said....Thank you for sharing and for allowing so many people the blessings that come from will be on their end someday, I promise!! We love you!