If someone were to describe my life, I imagine they’d say I’m a good mom. They’d mention my creativity and probably talk about how hard I work at everything I do. I doubt anyone would describe me as being sick, because when someone looks at me they don’t see my condition. The only thing that might give me away is my medical ID bracelet that I wear hidden underneath my watch, or maybe they might wonder what pill I am taking when an alarm goes off on my phone. But most people who look at me would never believe that anything is wrong.
Let me clarify, I am not actually sick and I am not even close to being disabled, but I do have a chronic condition that will always be a part of who I am. I’m hypopituitary, a condition that took over my life after a few years ago surgery to remove a tumor from my pituitary gland. Unfortunately, my gland could not be saved and now for the rest of my life I have to take a cocktail of expensive drugs to replace cortisol and hormones that my body can no longer make.
I know, what’s the big deal? Well, essentially without this little gland, also known as the master gland, my body does not function on its own. I take a pill to make my thyroid work, I take another pill to stop early menopause, then I take two pills to regulate my kidney function, and most importantly, I take a pill to replace my lost cortisol. It’s this last pill that causes things to get tricky. See, normally people’s bodies make cortisol when they are stressed, scared, or sick. Now if I get sick, my husband has to give me a shot of dexamethasone to keep me from going into a coma. Did I mention that I have to carry these shots with me everywhere I go?
But the worst part of all of this is that my daughter is acutely aware of my chronic condition. At the tender age of 3, we had to teach her how to call Daddy on my cell phone in case I passed out while he was away. Now at 5, it’s no better. If she sees me sit down and close my eyes, she goes into full alert mode: “Mommy, are you OK? Want me to call Daddy?” And it breaks my heart.
When I had her, the last thing I ever imagined happening was that she would have to take care of me, at least not when I’m only 38 years old.
And even worse is that I cannot take care of her when she’s sick. If it’s a cold, sure, I can manage that, but strep throat, pink eye, a stomach bug, or really anything else? Unless I want a trip to the hospital, I have to keep my distance. Not being able to care for my child when she needs me most is quite possibly the most heartbreaking thing I’ve ever experienced.
And this condition doesn’t just affect our lives at home. We’ve missed birthday parties, church dinners, nights out with friends, trips, and so many other things because we hear that so and so is sick and we just can’t risk it. Recently we had to keep our daughter home from school when another child continued coming to school after throwing up on the reading rug. She cried for most of the morning because she wanted to be with her friends. Then we had to cancel a vacation because of some infectious mosquitoes, and it broke her heart again.
Breaking your child’s heart is definitely not on the list of things that most mothers want to do for their children. As mothers, all we ever want is for our children to be happy and healthy, and god forbid we inflict any of our own crazy into their lives or their personalities. Unfortunately I’m doing just that. She’s obsessed with hand sanitizer, and she’s so used to bathing as soon as she walks in the door after school that she’s usually stripping as we walk in. Every day I see her becoming a little more cautious around me, like she’s afraid I’m going to break. When one of her grandmothers leans in for a kiss, she so seriously utters, “It’s cold and flu season, Nana.” Secretly I’m smiling at this, but then the sane part of me chimes in that I need to stop the crazy and I’m devastated all over again.
People who know about my condition are constantly asking me how I’m doing, and I’m constantly telling them that I’m great. The real answer though? Quite frankly, I’m mad as hell that not only do I have to go through this crazy shit, but I’m even more mad that my family, especially my daughter, has to go through it with me. I live every day with a hidden fear that I’m going to get food poisoning or that the person who used the shopping cart before me has norovirus, or even worse, that my daughter is going to grow up and hate me.
It’s this fear, the fear that one day she’s going to look back and tell me that I ruined her childhood because she had to be the world’s youngest nurse and that I made her miss out on so many things that keeps me up at night. That and the fear that one day she’s going to get what I have too.