I spend so much of my time being angry. Not at a person, but neutropenia. Chronic benign neutropenia, to be exact.
Doctors define it so simply. Neutropenia is when your body doesn’t produce enough neutrophils. Neutrophils are a type of white blood cell needed to fight infection.
For my 19 month old daughter, Willow, neutropenia means much more. It means pain. The poke of a needle, twice a week. The sting of watching mommy, her protector, administer each shot. The torment of bone pain, as the drugs work their magic producing neutrophils, deep within her marrow. The misery of mouth ulcers, the agony of a fever, or the discomfort of a skin infection when the drugs just aren’t enough.
I guess you could say neutropenia also causes me pain, as it is torture to watch my littlest daughter fight such a big battle. It’s not fair. It’s just not fair.
While antibiotics and neutrophil-boosting drugs like Neupogen help Willow fight physical infection, I am left wondering how to treat the poison coursing through my own body. Anger. It eats at me, just like the bacteria causing Willow’s sores.
I hate neutropenia for making me question every little blemish on my daughter’s body.
I hate neutropenia for robbing my daughter of a chance to play freely with friends for fear of germs.
I hate neutropenia for forcing me into the role of the crazy lady who carries a bottle of hand wash IN HER HANDS at all times.
I hate neutropenia for making me take on the task of administering shots of Neupogen.
I hate neutropenia for ruining too many nights of sleep.
I hate neutropenia for causing me to question every… little… thing.
My daughter also has Down syndrome, and while I’m told the two are unrelated, Willow’s extra chromosome does play a role in how seriously her neutropenia is taken. A simple pimple landed her in the hospital a few weeks ago, as it became infected and Willow spiked a fever. I foolishly thought I could help the situation with some antibacterial ointment. Her hematologist set me straight. According to him, a tiny infection could turn deadly if it enters her blood stream. That’s because, at a month of age, Willow had some heart defects repaired. Those repair sites are supposedly magnets for infection. Gulp. Yet another reason to hate neutropenia. Dang you!
But, I’m done! I’m tired of living this way. Exhausted. And, I’ve come to realize that if I’m going to help my daughter through this, I need to be full strength. I can’t stop neutropenia from attacking my daughter, but I can stop it from tormenting me. Today, I am taking the first step toward letting go of my anger. I’m forgiving my daughter’s attacker.
Neutropenia, you’re evil. Plain and simple. So, why waste my time hating you? You’re not going to change. No, instead, I’m going to accept you for what you are. An inconvenience. Something to be conquered. And believe me, you will be conquered! For months, you’ve held my family captive. Now, it’s time for us to put you where you belong. Behind bars.
From this day forward, I won’t allow you to invade my constant thoughts. I won’t allow you to ruin my day. Neutropenia, I’m done being angry. I’m taking back my life, in hopes of bettering my daughter’s. Sure, you may try to hurt her, but I guarantee, you won’t take her life. That’s because she’ll be too busy living it. Loving it.
Goodbye, neutropenia. I’m over you. And by-the-way, the key to your cell? I’m giving it to God, because I know He’ll never give it back to me.