It started with a singular thought last night when I stood up and made my way to the bathroom. My legs weren’t working right — moving them took a momentum amount of strength and endurance. With each step, I couldn’t help but fester in how difficult it was to simply move; to walk up the stairs to the bathroom. I couldn’t help but focus on how tired I was of being in pain, because I feel that pain every single day and it is so very draining.
And then I started thinking about my boys…my beautiful, perfect little boys. I thought about how they will eventually know what this feels like — the defeat, the desperation, the constant battle with an aching body — and my stomach knotted with fear and sadness.
I know what it feels like to give up, even for a fleeting moment when everything feels like it’s too much. Too much pain, too much guilt, too much exhaustion. I don’t want them to ever experience that kind of defeat.
At just eighteen months old, I was diagnosed with Multiple Osteochondromas; a rare, typically genetic disorder characterized by multiple benign bone tumors that are covered by cartilage that grow on the end of the long bones of the legs, arms, and digits. These osteochondromas usually continue to grow until shortly after puberty and may lead to bone deformities, skeletal abnormalities, short stature, nerve compression and reduced range of motion.
Most cases are hereditary, however rare genetic mutations have occurred. Mine was the later, a rare genetic mutation. My specialist used to tell my parents “it has to start somewhere“, and it started with me.
I grew up feeling rather isolated. In my small, rural town, there was no one who could relate to what I was going through and what I felt. I didn’t meet another person with this disorder until I was almost in grade seven. Up until I got pregnant with my firstborn, I was convinced I wouldn’t have children of my own. I didn’t want them to go through what I went through, and I knew that any child I conceived would have that fifty/fifty percent chance of inheriting Multiple Osteochondromas from me. But then, I met my now-husband and fell in love. Our first pregnancy was an “oops”, but from the moment I found out I was pregnant, I wanted the baby. I prayed every day that he wouldn’t inherit the bone disorder, but he did and so did his younger brother.
This disorder is both a blessing and a curse. It’s a blessing because I know it; I’ve lived it. I can anticipate what it will be like for them. But it’s also a curse because, like I said…I know what it feels like. I know how painful it can be, how scary and often times…how isolating. I know how deeply the guilt resides. Guilt from depending on other people, guilt from having physical limitations, guilt for feeling guilty when it could be worse. When I was little, I used to feel guilty every time I was in pain because I knew my parents suffered along with me.
The guilt grows like the bone spurs; the ache is always present. Some days, it’s not so predominate. Some days, it’s a faint tweak in the background, and the beauty of life can snuff it out. But other days…the guilt twists so sharply and suddenly, leaving you feeling breathless. It’s not the good kind of breathless; it’s not first kisses and falling in love, it’s having the wind knocked out of you…it’s having your lungs pinch as you fight to draw in each and every breath.
No parent wants to face the very real fact that their child[ren] will experience pain and hardship. No parent wants to worry about how that child will carry the cards they’ve been dealt, especially not when that parent knows the hand and is the reason they’ve been dealt it. All I can do is hope and pray that my children will lean each other — and me — when things get to be too heavy and painful. All I can do is hope that they never give up.