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.

Thursday, March 1, 2012

An Alice Inspired Post

Alice had a great day today. She is preparing to come home tomorrow (Friday). We are so excited. I keep trying to imagine seeing all my children together in one place. I love it. It's going to be great. Tyler and I agreed that it feels like she has been away forever. I know some kids stay much longer, but this has seemed plenty long. We have spent the day preparing things at home. Tyler already brought a load of things home and I sorted through it all. Looking at all the toys and such that have been in her hospital room, made me super anxious for tomorrow, it also made me incredibly thankful that she is still with us.

So Alice has created a bit of thinking on my part, after speaking on the phone with a sweet little friend of ours...Grace, I decided to share some insight I gathered from her tender little conversation with her friend.

Grace is actually Natalie's age and her dear friend; they have a lot in common. They even have the same doctor here at Primary Children's Hospital. Grace understands what Natalie and Alice are feeling. Grace wanted to talk to Alice so she called and I thought it would be a good idea to put it on speaker phone so Alice wouldn't have to hold the phone. I am so glad I did because I was able to hear their sweet conversation.

Grace asked Alice if she was feeling any pain, and Alice responded by telling her, "no I not, my PICC line is".
Grace then asked Alice if she was in the hospital, and Alice responded by telling her, "no I not, I'n in my room".

I thought about her answer and was touched by her perception of her situation. I then thought about the attitude that follows this perception. No Alice is not in pain, just her central line, and No Alice isn't in the hospital, she is in a nice cozy room.

With anything we encounter in life we have a privilege of choice as to how to react. That choice is what determines our outcome. Alice chooses to be happy because she does not see her situation as a threat against her optimism. Something that comes so natural for all children. To find joy when it seems as though there is none, is a true test of our attitude.

I love what Henry Ward Beecher once said, "It is trial that proves one thing week and another strong. A cobweb is as good as the mightiest cable when there is no strain upon it."

I truly believe that in all things there is beauty, and through all things there is hope. Sometimes we forget that we have choices, and I will admit that there have been times that I thought I had to play the part that would accompany the burdens we have been carrying. Wearing a frown and having a pity party has never helped my hardships go away, it only makes them harder. People or shall I say Children of Divinity CAN DO HARD THINGS. We were created to overcome and are equipped with the proper tools to combat our individual challenges. Might I add...often times not until after a strenuous amount of hard work, even years of hard work.

Ralph Waldo Emerson said, "That which we persist in doing becomes easier for us to do; not that the nature of the thing itself is changed, but our power to do is increased".

He also said, "When it's dark enough you can see the stars." There is always good among hard.

I’m so sorry for this lengthy post-- I just loved her answer…so simple and profound.

Again thank you to so many who have extended themselves to us. The compassion from others makes finding joy effortless.



  1. Love this post! Thank you for posting it!

  2. Oh happy day; Alice is going home! We are praying that the day goes smoothly and are so thrilled at the thought of your family all sleeping under one roof tonight. So many miracles! Thank you for taking the time to share with us. Enjoy the day! Love you guys- Rebecca

  3. Thank you! I am so happy she's coming home!!

  4. Lisy - You are amazing!! Thank you for this post. My testimony was strengthened just from reading it. I love that quote about seeing the stars when it's dark enough. When we are in our hardest times, there is always some light - we just have to look for it. I can't wait to hear about the reunion with your children. What a special day that will be for all of you. Good luck today and tomorrow. We continue to pray for you! Love, the Shumways

  5. So glad you can all be together again!!!!! Lots of love and prayers flying your way from Florida! Thank you for sharing your journey, I gain strength from all of you!