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When My 5-Year-Old Asks If One Day He Won't Need the Hospital

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As a mom to a chronically ill child with a life-threatening illness, I get a lot of comments from people who feel sorry, or say they don’t understand how I do it. I can’t even count how many times I’ve heard, “You poor thing.” Well, I don’t consider myself poor and I certainly don’t feel bad for my family for what we’ve been through with my medically fragile son. Because of my son and the struggles we’ve helped him through, I honestly feel extremely fortunate to be able to look at life with a different perspective.

My daughter and I had a conversation the other day about how we see life very differently than others who have not experienced long-term hospitalizations and chronic illness. We agreed that even though our world was turned completely upside down due to a medically fragile family member, we are very lucky to be able to truly understand what matters most in life. And that is the relationships you have with others and the love you share together. What else could be more important?

Imagine looking at your child in a hospital bed fighting for his life — all you want to see is a smile or any sign that he will pull through. Hey, there are times when I don’t even recognize him as he cries out in pain, argues with nurses, and behaves unlike any child I’ve raised as he refuses to cooperate. But when he reaches the point to where his treatments are working and he’s beginning to feel better, I see a glimmer of hope in the little person who has a “defect” in his genes.

That glimmer gives me hope and trust in science that some day there will be more knowledge about his rare disease. But until then, the only thing I can do is provide comfort and make every effort to show my little man how to love with all his heart. I pull every ounce of happiness from strength I never knew existed to provide hope, because all I want is for him to be comfortable and happy.

Tough questions have come out of his mouth — questions I thought I had more time to answer, or wish I had more knowledge to fall back on. But I muster up all my strength to turn every negative into a learning experience and twist it into an asset, so he can feel proud of who he is. My son is not only a survivor, he is a warrior. And he believes he is as well.

At only 5 years old, he has already asked me if he will ever “not need medicine” or “not have to go to the hospital.”

My answer? “I hope so. I think you are going to grow big and strong and get sick less as you get older.”

He’s been hospitalized nearly half his life – literally. He’s enjoyed his Make-A-Wish trip already. He was even lucky enough to meet Papa John himself on that trip while we stayed at Give Kids the World in Florida on his trip to Disney and Universal. While he was elated to take his picture with every superhero and Disney character he could find, we were proud to be able to watch our own superhero smile and enjoy himself.

“Be careful what you wish for” has become my new motto in life. I always wanted a son, and I had him. I may have won the lottery when it comes to his basket of medical challenges, but I couldn’t be happier to be his mom. He has taught me more about how fragile life can be and I am so grateful. I’ve been able to slow down and appreciate all of the little things in our daily lives more than I ever would have if he didn’t have a chronic illness.

Milestones for a healthy child are incredible, but milestones for a child whose doctors didn’t think he’d survive beyond a few months are astoundingly beautiful. You haven’t really enjoyed a child’s laugh until you’ve experienced what it’s like to hear a chronically ill child laugh while he’s playing in the cul-de-sac with friends, especially if you never could have imagined he’d even be able to go outside.

My “bubble boy” with a primary immunodeficiency of unknown etiology has burst his bubble and continues to defy medical odds. I’m just here to help him enjoy life and ensure he feels loved and experiences happiness in every way possible.

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Originally published: November 4, 2016
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