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6 Moments I Appreciate While Caring for My Daughter’s Chronic Illness

I had a moment last spring at my office when I started to feel overwhelmed. I was stressed out about finishing a project, worried about my daughter who was home sick from day care (again) and was completely exhausted from a limited amount of sleep from the night before. As I put my head in my hands to relax for a brief moment, my fingers made contact with something crusty in my hair. I felt around. The whole back of my head seemed to be covered in crust. And then it hit me. I had gone to work with dried vomit in my hair that day.

As I attempted to wash my hair in the office’s kitchen sink, I reflected on how this could have happened. There had been so much vomit the previous night, yet I had no recollection of any hitting me in the back of the head. The only thing I could come up with was my daughter must have vomited in our bed while my head was turned away from her. I must not have realized it had hit me, and as a result, I only cleaned her and the bed. I had skipped the usual morning shower, since my daughter wouldn’t let me set her down without crying, and I absolutely can’t handle her sad, pitiful cries to be held when she is having an episode.

“Did you just take a shower?” my boss asked in confusion as I walked back down the hallway to my office with a wet head. I learned long ago you aren’t supposed to bring your personal problems to work with you. Plus, I figured my boss would rather I not regale him with fun stories about my daughter throwing up on me undetected. “My hair…got something in it,” I told him, hoping that would cover it. He looked perplexed but didn’t say another word.

I went back to my desk and resumed the head-in-hands position. I didn’t want to feel overwhelmed, but I was. It felt like my daughter was sick all the time. We were constantly on edge and afraid she would get sick at any moment. When she was sick, she seemed so miserable, especially at night, writhing around in pain as we paced the floor with her. Every single time someone would ask me, “Is she going to outgrow cyclic vomiting syndrome?” I would feel a twinge of pain in my chest as I answered, “I don’t know. I hope so.”

I’m usually an optimistic person, but the future felt a little bleak. I couldn’t imagine my daughter ever going to school, traveling or holding a job. “Things will get better,” fellow parents of kids with cyclic vomiting syndrome and other chronic illnesses assured me. “You’ll figure it out.” “You’ll find a new normal.” It’s been nearly two years since my daughter was born, and six months since she was diagnosed. Slowly but surely, things are getting better. It’s the little things that add up, and I never realized how much I would appreciate these moments:

1. The first time we met a doctor who actually heard of my daughter’s condition.

I think anyone with a rare condition can relate to this one. We’ve even had doctors and nurses tell us, “That sounds made up,” when I’ve explained my daughter’s diagnosis to them. The first time an ER doctor interrupted my normal spiel of, “She has cyclic vomiting syndrome, that’s when…” with a smile and “I know,” my heart literally leapt. You definitely feel like your child is in better hands when a doctor actually knows what they are dealing with.

Erin Bohn the mighty.2-001

2. When my daughter learned to sign “sick.”

The most challenging part about having a young child with a chronic illness is she can’t communicate with me about it. Not having any idea how she is feeling every day is so hard. The first time she used baby sign language for the word “sick,” I was relieved. As she gets older and her communication gets better, I know it will get even easier.

3. When the day care stopped freaking out about germs.

My daughter isn’t contagious. People have trouble grasping that. I get it, I get it. Vomit means stomach flu in a lot of our minds. After a year of panicked calls from the day care staff, asking us to drop everything and pick up our child, they have finally started to grasp this. It’s so much easier to get a call saying, “Your daughter is having an episode. We’ll take good care of her until you or a babysitter can get here,” as opposed to, “Your daughter is vomiting. Please pick her up ASAP, so she doesn’t infect the other children!”

4. The first time my daughter threw up in an emesis bag.

My daughter still misses — a lot. But just having her hit the bag half the time has been such an improvement.

5. When her medication started to make a difference.

Her medication isn’t a cure. Right now, there is no cure. But with medication, she is definitely much more comfortable during her episodes. Instead of writhing around in pain for four days, she will sit quietly in my arms. She might even tentatively leave my side to play with some blocks. It’s not perfect, but knowing she’s more comfortable during an episode makes life easier.

6. The day I realized it would be OK.

I’ve had some panicked moments about the future. Will my daughter ever be able to go to school? Or get a job? But by putting one foot in front of the other, I’ve realized she will. She might outgrow this and be perfectly fine. Or the way she will go to school and work might look different for her than it does for other people. But either way, she is going to be OK. We’re gonna make it after all.

Follow this journey on No Bohn’s About It.