One mom shares on parenting through chronic illness and the people who have kept her family going in the tough times.
No matter the shape or size one thing is certain—a family is a family.
Although my family is a “traditional” family, we have to do things a little different. Living with a chronic illness is hard, raising a family is hard but living with a chronic illness while raising a family is really hard.
I was diagnosed with Crohn’s Disease when I was 18, but I’d lived most of my life with it, simply not knowing what was to blame. When I was 21, I met my husband. Our son, Jacob, was born when I was 24, and our daughter Michaela at 26. When the kids were young I spent a lot of time in the hospital but even more time being sick. Up until two years ago I kept a small bag under my bed packed and ready for Andy to grab when I was admitted into the hospital.
I have said for years that when the kids were small Andy was more hands on with the kids than I was. It’s not that I didn’t want to be; it was just that I was sick. And for just as many years I’ve felt guilty about that. As the kids got older they helped. As soon as they were old enough to pick up their toys at the end of the day, they picked them up, not me. They kept their rooms tidy, not me. By having to do it this way I was able to enjoy the fun times with them. Our family also helped out a lot. On a regular basis we would get care packages and money to order dinner in from Andy’s parents. It was hard on them that they lived farther away and couldn’t do more. They also took the kids whenever they could. My parents would take the kids for weekends and overnights. My sister would come and stay with us and cook and clean because she knew it was hard not to have things the way we liked in our home. But for us that wasn’t the top priority. When I was admitted to the hospital it was our family and friends that rallied so that we were all looked after. I really don’t know how we would have made it had it not been for them. They say it takes a village; that is no lie.
It wasn’t until the kids were older that I truly understood how my Crohn’s affected them. The one day I remember so clearly was when our daughter, about seven at the time, asking my best friend “Is mommy going to die today?” Even as I type this now I cry, because no child should have that kind of worry. Our son would crawl up in bed beside me and read to me. He knew that I was sick, and there wasn’t a lot else that he could do to make me feel better, but he wanted to do something.
Just like when they were younger the kids are still a huge help to us. They help around the house and do errands for us a lot. I now go for Remicade infusions every six weeks and because of that treatment, I was given my life back. I still deal with low energy levels, but as those who know me well can attest, I really try hard not to let Crohn’s hold me back from living my life.
I am so so thankful for our family as well as our friends, because without them I really don’t know how we would have made it to this point in our lives. Like any other family, we aren’t perfect and we make mistakes. But this is my family and I love them more than life itself.
This is #1000families post number 70. Do you have a family story of your own to contribute to the 1,000 Families Project? Or do you know a family that might want to do so? Learn more about how the series got started and how to get involved here. You can find all of the #1000families posts here.