Life is hard. There’s no other way to say it. In the midst of my struggles in recovery, my son has struggled as well. He’s 8. Eight years old seems too young to struggle. His entire life has been doctor appointments, blood work, x-rays, CT scans, surgeries, hospitalizations and more. We’ve seen specialist after specialist and my 8 year old has medical knowledge that children just shouldn’t have. I hear him asking his doctors questions about his medical conditions using words no eight year old should know.
Mason has had pneumonia 13 times in his short life. He has life-threatening food allergies. He has severe asthma. He’s had to repeat grades in school because he’s spent more days in the hospital than in the classroom. He sits at a special table at school for lunch. He finds it anything but “special”. It breaks my heart, but his life is in jeopardy sitting next to the kids eating pizza and drinking milk or eating their peanut butter sandwich. It’s a risk I’m not willing to take. And while he understands, at the same time he doesn’t. He wants to be a kid. He wants to go to birthday parties and share pizza and ice cream with friends. He wants to go to the neighborhood get togethers for pizza. He wants to eat chocolate and have cake and not have to have is own “special” food.
Mason was diagnosed with Common Variable Immune Deficiency and Immunosuppression. He has asthma and his lungs are weak. Too weak, in fact, for a surgery he needs to remove scar tissue to help him breathe. We’re stuck in a place of making the decision to leave his breathing difficult or irritating his lungs in a way that may or may not improve their function, while taking the risk of death. See, his lungs work only at 55% right now. His pulmonologist told us that he has lung transplant patients whose bad lungs work better than that.
We are getting ready to begin a life-long journey with the Cancer and Blood Disease Institute downtown Cincinnati. Mason will receive Intravenous Immunoglobulin Replacement Therapy. Once a month, we’ll travel to spend a day in the hospital for infusions of other people’s blood and plasma in hopes that it will boost his immune system. We’re hoping that these infusions will also help his body stop fighting against itself- stop the swelling inside his little lungs and his joints. We’re hoping improved immune function will ultimately lead to better lung function, breathing and quality of life.
My heart aches for my little boy. He takes it all in stride and seems positive about it. He tells people often that he wants to be a doctor one day. But, I know him because he happens to be A LOT like his momma. He has fears and anxieties as he should. Food scares him, new places scare him. He tells his counselor he has dreams of bad things happening to him. He’s ridden in ambulances, ICU mobile transport vehicles and been in the ER so much that those have sadly become a sense of comfort to him. While sitting in the waiting room for yet another specialist recently, he told me how much he likes being at the doctor because he knows it’s safe there. Those words were like a knife to my heart.
Our list of doctors is long. We pick up 11 medicines a month at the pharmacy for him. Eleven. He faces much in his life. BUT… he’s positive. He hugs me often, and while I see the fear in his eyes, I also see such a brave little boy. This little boys gives me a reason to want recovery. I want to be there for him. I HAVE to be there for him. His struggles are far too many and I NEED to be there. So, in a way, this little boy has pushed me to get better. He’s pushed me to keep going and he’s taught me how to fight. His bravery makes me brave. His strength gives me strength.
Life is hard, but it is worth the fight.~Lindsay