Worrying & What Ifs

When we left Italy I assumed I would no longer need to worry constantly about Keira because she will (hopefully) be “fixed”; that my focus would shift solely on Livvy and making her as comfortable as possible as this disease continues to take her life. That was wrong. I feel as if I am even more concerned about all the girls than ever before.

For Keira, while it’s an absolute miracle she received gene therapy treatment, in a few months she will be approaching the age when symptoms began to show in Olivia. So I find myself surveying her every move to ensure I don’t see anything “off”, even though she is developing normally thus far.

For Livvy, it is as I expected. We know what her future holds yet each day can be a different symptom causing her pain. While we manage that, we are working on getting her long term care, discussing if “schooling” is even an option for her and continuing her weekly treatments.

For Eva, we answer any questions she has about her sisters as they arise. Things like “Why can’t Olivia get the treatment Keira got?” and “Why didn’t I get MLD?” My heart is already breaking on her behalf in having to lose her sister much too soon. I can only hope and pray that Keira’s treatment does its job and she has a long life ahead of her to make memories with Eva. Otherwise, I am already thinking about the therapy and/or survivors guilt she may deal with as a result.

As any parent of a child with a rare disease, it is hard to keep the “what ifs” at bay and not consider what the future holds but we do our best to stay strong for the girls and keep those faces smiling as much as possible.

2 thoughts on “Worrying & What Ifs

  1. You and David are strong and will travel in this journey with faith, prayers and support from your loved ones near and far. Know you are not alone with this and if possible find a support group for the condition and lean on them also for support. You will find Peace and Grace by not letting this eat at you and meditate daily if at all possible. Keep your faith and know that God loves each and everyon of you.

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  2. How important it is to enjoy the moment!! Each day is so important and the need to always be thankful. You all have been through so much, I pray for peace in the midst of so many “if’s”, we pray Keira will have a long healthy life sharing it with Eva…we love you Uncle Jim and Aunt Judy

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