My world is the complex, chronic side of parenting. Here are 10 things I wish people knew about having a medically complex child. Hopefully if more people can understand these points, our challenges will be a little easier.
1. Our kids are still kids and need to be treated as such.
Kids with complex chronic issues usually have a lot of equipment and a team of caregivers. When we enter a room, it’s obvious our child has severe health issues. Unfortunately this is intimidating to a lot of people. They don’t know what to say to us or how to approach us. In many cases (depending on where we are), people have never seen a child like ours. Instead of treating our kids like kids, they get treated like patients. Our kids are still kids. They may need to modify the environment, but they are still kids. They like silly things like cartoons, knock-knock jokes, etc.
2. We do not want or need to be pitied.
We realize if you haven’t experienced our world, your initial reaction may be one of shock. The first thing that may come into your head is “oh my gosh, that is so sad.” We are not looking for pity. We have our moments, but most of the time, we’re trying to make the most and best of things. See our kids for what they can do. Don’t pity us for what they can’t.
3. We try hard to stay positive.
We try hard to keep a positive spin on things, but this can backfire. When our daughter, Casey, got really sick and we started to plan her Make-A-Wish, people were confused and caught off guard. They thought things were getting better because we didn’t share that side. Now we try to let our family and friends know when things are bad, but we still try hard not to dwell on those details. We don’t do this just for our family and friends; we do this for us, too. If all you focus on is the negative side of things, it can consume you. We have to stay positive.
4. Don’t assume you know our story.
It’s easy to judge others when you’re not walking in their shoes. Just because my child doesn’t express joy and happiness the same as others doesn’t mean she’s not happy or that she’s suffering. Casey doesn’t have the physical ability to smile or laugh, but to all those who take the time to know her, she expresses joy in many other ways. She may be having a rough day when you see her, but it’s just a bad day, not a bad life. Don’t assume you know everyone’s story just based on what you see at first glimpse. There is so much more to all of us, regardless of ability.
5. We’re exhausted — all the time!
Many of us have help, but even with help, we are on 100 percent of the time. For example, people who provide us with help might get sick, so it’s hard to plan or commit to things because we know at any point we may have to change plans. On occasions where we do go out, we have to be on-call and ready to get home at a moment’s notice (our daughter can go from great to devastating in minutes). We have to forego sleep, we have to wait to get our own health issues handles and we have to pass on that evening out. I used to fantasize about going on fancy trips to exotic locations. Now I fantasize about sleeping through the night and maybe getting a shower. My dream vacation now could be my own bed.
In addition to being tired all time, we may smell bad. We get covered in all types of bodily fluids throughout the day, and depending on our child there may not be an opportunity for a shower for days. We do our best to shower before going out in public, but if you “pop in” we may be smelly, our clothes may be dirty and there is no promise on how the house will look. Enter at your own risk.
6. We see you.
Imagine that every time you enter a room, everyone in that room stops what they’re doing and just watches you. That’s our life. We get used to it, but we are always aware of it. We carry a lot of equipment, our child isn’t quiet and there is usually me and a nurse (sometimes even more people with us) — we’re going to get noticed. We know most of the time people stare out of curiosity. There are a few people who judge and say ugly things, but most of the time people are just curious. I try to engage with people when I see the look on their faces, and I try to be approachable. I welcome questions and love to share our story. There are times I’m in a rush or it’s just a bad day, but most of the time, instead of staring, say hello.
7. We live in constant fear that today may be our last.
Medicine advances every day. There are more and more kids surviving diagnoses who previously did not. For many of us with medically complex kids, our children were not expected to survive birth, their first year, etc. We go into the “borrowed time” category early in our journey. This means we live with the constant reminder that any day could be the last day we have with our child. Each cold, each new diagnosis, each setback may be the one that takes our child. The upside of this is that we see each day as a gift, and we do our best to make them count. It takes a toll on us, though. Knowing we might outlive our child and that every day could be the last is a hard reality to face.
8. We still have hopes and dreams.
Even though we have no idea how much time we have (days, weeks or years), we have a lot of hopes and dreams for our child. These are not the same hopes and dreams that we had before we knew our child has complex medical issues, but they are just as real and just as important. Before we would dream of our child hitting developmental milestones, graduating high school and going to college, getting married, etc. Now our dreams are a lot different. Now we dream we will see another birthday, we will make it through the year without a hospital stay, we won’t have to fight with the school, insurance, etc. to get the services our child needs, that our child will have real friendships and relationships like every other kid, that our kid will be happy. Each year we see another birthday is a huge deal for us. For many families like ours, birthdays are big celebrations. It’s not just another year older — it’s another year gifted.
9. It can be dark in our world, and we need light — not more darkness.
When you’re talking with a parent of a child with complex issues, if they seem to be in a dark place and not able get out of the funk, you can help. We need light. If we look for support and are met with negative feedback at every corner, it can be hard to get out of the dark spot. We need people who celebrate life and can see the positive (regardless how small) in our situation. We need people to remind us of the good stuff. Or if you can’t help us focus on the good stuff, at least don’t encourage us to wallow in our darkness. Help take our mind off things. Tell us about a funny thing that happened at work, remind us of a great time we shared, etc.
10. We really don’t want to ask, but we need help.
Not everyone likes to ask for help, but we all need help, regardless of ability. It took us years to get to a point where we were ready to have healthcare providers come into our home. Once we did, we kicked ourselves for not doing it sooner. It took us a long time to accept offers from friends and family to bring us dinner and help with errands as well. We eventually realized they weren’t offering help because they felt they had to, nor did their offers mean they saw us as burdens. They offer to help because they want to. Accepting this help was good for all of us. It was a way for people who love our daughter to be able to do something, and everything they did was one less thing we had to worry about. There are so many ways you can help families like ours. We may not accept it at first, but please keep offering. Meals, errands, just sitting with us and listening, coffee (coffee is huge, especially when we’re in the hospital), help with chores around the house, picking up the kids from school, walking the dog… the list goes on and on.
We’ve been fortunate to have amazing family, friends and community that support us and Casey in so many ways. We really hope that by sharing insights like this, we can help other families like ours and their communities. The bottom line is that we are human just like you, our kids are kids and we are all in this together. Please don’t judge us; please don’t dismiss us. With help and understanding from our community, our days are a lot easier.
Follow this journey on CaseyBarnes.org.
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