Without a Crystal Ball

Our Journey through Chronic Illness

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Parenting a healthy child totally changes your social life. You spend time and energy caring for your child. When events come up that involve late nights, you weigh the pros and cons of what that evening of fun will look like the next day at sunrise when your excited child runs out of bed. Your social life changes as you find friends who also have children, and you discuss diaper consistency, the latest bottles and the coolest new shows on Disney Channel.

This was the image I had in my mind. Even though I was going to be a parent, I thought I’d still have a social life. I was so incredibly wrong about what I thought life would look like.

My son, Von, came in to the world early, and I often thought he was in a hurry to go nowhere. He stayed in the NICU for weeks. We measured each poopy diaper to the gram and counted every single milliliter of milk he drank. Every single thing he did was put on a chart, and my early weeks of motherhood consisted of beeping machines, alarms and sleepless nights wondering when he’d come home. I felt so lonely then. I wanted to take him home. I thought if I took him home, it could be like I imagined. I thought I could put him in those tiny little outfits, and cuddle him to sleep while I watched my favorite shows. I imagined coffee dates with friends during my maternity leave, with them holding him.

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When Von finally came home, he was still so sick that we didn’t go anywhere. The friends I thought I had disappeared, and I wasn’t sure why they left.

I’ve thought of all the reasons a friendship that spanned years would suddenly disappear after Von’s diagnosis. I wondered why all the people in our lives scattered. I knew when we had children, relationships would change. However, I didn’t realize when you have a sick child, it’s sort of like wearing a scarlett letter in the 1700s. The whispers, and the assumptions and blame about what I must have done wrong during pregnancy. In fact, a woman I just met told me Von wouldn’t be so sick had I not eaten all those GMOs during pregnancy. I had friends suggest it was likely the medication I took while I was pregnant. In truth, we’ve never found the answer, and no matter what I hear about why he could be sick, it changes nothing.

I thought my husband and I could at least count on our family. Unfortunately, that assumption was wrong. Family struggled to understand the magnitude of his illness, and I believe many still have no idea how hard we fight. Others just don’t care to check in on Von’s development.

It was hard to arrange play dates when I constantly had to remind them we couldn’t be around other sick children. Von is so fragile, even happy events for most are stressful for our family. We’ve never attended our extended family’s Christmas party because children who attend are often sick. Our holidays are quiet, and often the three of us, or my parents and sibling. It’s not at all how I imagined life would be.

I’m trying hard to find joy in the pain. It’s been incredibly difficult. Our lives are so different. As the holidays get closer, I worry about the germs and what they will do to Von. I feel sad that Von can’t enjoy the basic things other children do, and I struggle to find ways to make this season joyful for him. He’ll hopefully go trick-or-treating, but only to a few homes because there are far too many germs this time of year, and the wind is hard on his asthma. We’ll go to Thanksgiving, but only for a short time because he still struggles around large groups, and this Christmas will hopefully be the first time we can attend a larger family function. It’s hard knowing we have to rely on so many other people to keep their kids home if they’re sick to avoid exposing Von to serious illness. This year, I’m putting my heart in God and hoping he will keep Von well and allow him to enjoy the season instead of fear it. The holidays are a magical time for most, and they scare me to pieces.

I pray for a day when our lives are less isolated, and when people will no longer fear Von’s disease. I pray for a society that isn’t scared of embracing children with serious illness. We get a lot of praise online and through social media. However, in our daily lives, most of us are alone, and most of us really need friends to help us get out of this darkness. If you’re reading this and you have a friend with a sick child, don’t be afraid to say the wrong things. Just reaching out and saying something is better than saying nothing at all.

Originally Appeared on The Mighty

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