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Special Needs Parenting: Where did you all go?

Special Needs Parenting: Where did you all go?

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 very excited child runs out of bed.

Each glass of wine you drink, is a headache you can’t sleep off and your life changes from free will and fancy free, to diapers and coffee. Your social life changes as you find friends that 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.

I thought even though I was going to be a parent, I would have a social life. I was so incredibly wrong about what I thought life would look like.

Von came into 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 were of beeping machines, alarms and sleepless nights wondering when he came home.

I felt so lonely then.

I wanted to take him home. I thought if I took him home this 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 my maternity leave as one of coffee dates with friends as they held him and I could get a needed break. 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 itemized in my brain all the reasons a friendship that spanned years would suddenly poof after the diagnosis I received for Von. I wondered why all the people we had 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 was sort of like wearing a scarlett letter in the 1700s.

We were the family of the sick kid.

The whispers and I’m assuming the assumptions and blaming of what I must have done wrong during pregnancy were likely being discussed.

In fact, a woman I just met told me Von would not be so sick had I just not eaten all those GMO’s during pregnancy. Or it was likely the medication I took while I was pregnant I had friends suggest.

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 that if friends would disappear that at least my husband and I could count on our family. Unfortunately, that assumption was again 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. Von wasn’t doing what their kids were doing, and so hanging out with them just wasn’t a priority.

It was hard to arrange playdates when I had to constantly remind them we couldn’t be around other sick children. Von caught illness from other kids and didn’t fight them the same.

We finally had to really clamp down when he got whooping cough at Thanksgiving. I don’t blame anyone for his exposure, but it made me realize that Von is so fragile that even events that are happy for most are stressful for our family.

We’ve never attended our extended family’s Christmas party because children that 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 by comparison to the others are so different. How we celebrate our holidays are different. As we come in to the season with Halloween, then Thanksgiving and Christmas, I have a tightness in my chest as I worry about the germs and what it will do to Von.

I feel sad that Von can’t enjoy the very basic things normal children do, and I struggle to find ways to make this season joyful for him.

He will hopefully go trick or treating but only to a few homes as there are far too many germs this time of year and the wind in October here is hard on his asthma. We will go to Thanksgiving but only for a short time as he still struggles around large groups, and our Christmas this year will hopefully be the first time we can attend a larger family function.

It’s so hard knowing that we have to rely on so many other people to keep their kids home if they are sick, then to risk 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 yet 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 is not scared of embracing children who are fighting serious illness.

We get a lot of praise online and through social media.

However, in our day to day lives most of us are very alone, and most of us really need friends to help us get out of this darkness.

If you are reading this and you have a friend that has 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.

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