Caring for My Child With Chronic Illness

My son, Mason, is 11. He’s been sick most of his life. He’s been in and out of hospitals and had multiple surgeries and procedures. We’ve traveled around the country for a second opinion (and third and fourth) on his disease to make sure we were giving him the best possible life and treatments.

Mason has chronic lung disease and severe asthma. He has required chest tubes and gets pneumonia frequently. His lungs and airway are all very “floppy” (the medical diagnosis for this is tracheobronchomalacia). He gets sick with what should be a simple cold and it lands him several days in the hospital. He spent Halloween and part of the Christmas holiday this past year in the hospital.

We recently received news that the Make-A-Wish foundation is going to grant him a wish. That was bittersweet. I am so excited for Mason. He’s been through so much in his short life and he’s braved more than any child should ever have to. On the other hand, it was a reminder we may outlive our child. Our doctors singed a paper saying our son is terminally ill. My heart skips a beat just reading that.

Needle pokes and IVs don’t phase him. On top of his chronic airway and lung issues, he also has severe anaphylactic food allergies to milk, eggs, peanuts, tree nuts and seeds. He eats a predominantly soy diet. He has experienced anaphylaxis six times in his life. Ambulance rides are no big deal to him.

All of this is very scary. We live each day wondering who is on the other end of the phone call or if Mason will return home from school safely. He can’t play many sports or activities because he doesn’t have the lung capacity to do so. He takes a lot of medicines.

Through all of this, I have put on a brave face in front of Mason. It is hard to watch my child get poked, prodded, or be on a first name basis with the hospital staff. But, I am human. I have my moments where I leave his bedside for a few moments and break down in the hallway. I’ve had doctors hug me as my husband and other son left the hospital to try and maintain some normalcy, while I stayed behind to see my sick boy struggle to breathe. It’s so hard to see them sick and endure so much pain so frequently. It’s hard to not be able to fix it. There’s not a thing I can do to help him. I can only get him the care he needs and sit by his bedside to reassure him that he’ll be OK. All the while not really knowing what the future holds.

Going without showering and eating hospital cafeteria food is a small price to pay to get to be by his side. It’s hard, yes. But I’ve also learned how strong and brave Mason is. I’ve seen him fight and keep going when he wanted to give up. I’ve seen him put a smile on the face of the hospital staff. He’s an amazing kid and I am so very grateful for the opportunity to be his mom.

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Thinkstock photo by: kdshutterman