I Choose to See My Daughter's Rare Disease as a Vacation of a Lifetime

As I sat in the atrium of the clinical center at the National Institute of Health (NIH), I could not help but observe my daughter. We had a very long day of appointments and she was not feeling well; in fact she was so fatigued and in pain she had to use her wheelchair. It was at the end of the day, so the people passing us by earlier were probably on their way home.

In my mind, I could see the similarities, visually, of someone on a vacation. A weary traveler with all that is needed at hand while waiting to board and reach her destination.

Rather than a blanket with a hotel logo, we have one with the NIH, a symbol of a long wait for answers and of those who can continue to search for them.

I believe God has truly blessed my family! Maybe you are wondering, how? This question made me reflect on how long we have been “traveling.” Started this “vacation” 17 years ago to be exact. Trying to figure out how to help Noah.

I know most people go to wonderful destinations, but for us, the NIH felt like going to another world — a world where it did not matter what we packed, where we could be ourselves, not feeling the pressures of explaining or the looks of misunderstanding because she did not fit the mold. It was a place where we could be emotionally safe.

 

We stay at the Children’s Inn on campus, not like your typical resorts, but better. This is a place that gives you the ability to feel at home. Giving you the respite that is so needed. Shelter, care and much love to get you strong enough for the next day.

We see our very dedicated doctors and nurses who want the best for Noah. They understand the complications of rare diseases and there is never a thought of giving up. They have seen my daughter go through hard times battling a rare disease and also struggling with being undiagnosed. Her illness can be debilitating, but she has a strong faith and the gift of writing so she can tell her story.

This is something she wrote that gives a glimpse of who she is: “In passing we go upon our human nature to always stay in balance. We hesitate to see beyond, but it takes an unforeseen circumstance to force us to see. I want to be that force, giving testimony with great exuberance and exhibiting my imperfect life. I don’t think I can wait for the world to figure it out. I am perpetual in my stance to enlighten their hearts. Hope and Courage have truly crossed the street and I know that we are not alone.” — Noah Victoria

I believe with God’s help we will continue to pack our bags, book the hotel and go on that vacation.

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Editor’s note: This story has been published with permission from the author’s daughter.