There are lots of articles on sites like The Mighty that cover topics like “Invisible Disabilities”, “Being a Parent to an Autistic Child”, etc. While I know there are a lot of families that can relate to these articles, that is not my world. My world is the complex chronic side and we have a very different struggle. Here are a 10 things that I wish people knew. Hopefully if more people can understand these points our challenges will be a little easier.
- Our kids are still kids and need to be treated as such.
- We do not want or need to be pitied.
- We try REALLY hard to stay positive.
- Don’t assume you know our story.
- We’re exhausted- all the time!
- We see you.
- We live in constant fear that today may be our last.
- We still have hopes and dreams.
- It can be dark in our world and we need light- not more darkness.
- We really don’t want to ask, but we need help.
Kids with complex chronic issues usually have a LOT of equipment, a team of caregivers, and when we enter a room it’s obvious that our child has severe health issues. Unfortunately this is very intimidating to a lot of people. They do not 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. People talk about them in front of them and they can’t see past the equipment and disabilities to see the kid. Our kids are still kids. They may need to modify the environment, but they are still kids. They like silly things, cartoons, knock-knock jokes, etc. You can refer to “How to Talk to a Special Needs Parent” for tips on how to approach our kids and see them as kids, not patients.
We realize that to anyone that has not experienced our world that your initial reaction may be one of shock and 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, bad days, new diagnosis, etc when we are down, but most of the time we are trying to make the most/best of things. See our kids for what they CAN do, don’t pity us for what they can not.
No one likes a Debbie Downer/Negative Nancy- including us. We know that if every time you talk to us all we do is go on and on about all of our issues/struggles that you will likely not want to talk to us much. We try really hard to keep a positive spin on things. This can backfire though. We kept all of the ugly details to ourselves early on, and would just publicly share the positive stuff. When Casey got really sick and when we started to plan her Make-A-Wish people were very confused and caught off guard. They thought things were getting better because we didn’t share that side. Now we try really hard to let our family and friends know when things are bad, but we still try really 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.
It’s easy to judge others when you are not walking in their shoes. Just because my child does not express joy and happiness the same as others does not mean that she is not happy or that she is suffering. Casey does not have the physical ability to smile or laugh, but to all those that 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. We do our best to show people glimpses into our lives. We do this to try to teach the world about kids like Casey. Most of the time people see her and/or hear her story and see it as inspiration. There are times though that people assume that they know her story and don’t see past the disabilities. Instead they see her in a wheelchair, not smiling, and assume she is suffering. I assure you, she is not. She does have moments, but we work with a team of specialists that help to provide her with a full and good quality of life. Don’t assume that 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).
Many of us have help. This may be a few hours a week, to most of the time and it may be a friend or family member, an attendant or a nurse. Even with help, however much we get, we are on 100% of the time. Help gets sick, life happens, and so it’s very hard to plan/commit to things as 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 moments notice (for our kid, she can go from great to devastating in minutes). When we are sick, injured, etc. medications are tricky. We can’t take something that is going to knock us out because we have to be alert and ready to jump in at all times. This is the same for drinking or anything that can alter our abilities. Yes, we have to take care of ourselves and we all know that if we do not that we could get to a point that we are not able to care for our child. This is a lot easier said than done though. In many cases, there simply is not an alternative. We have to forego sleep, we have to wait to get our own health issues handles, 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.
PS- 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.
Imagine that every time you enter a room that everyone in that room stops what they are doing and just watches you. That is our life. We get used to it, but we are always aware of it. We carry a lot of equipment, our child is NOT quiet, there is usually myself and a nurse (sometimes even more people with us), we are going to get noticed. We know that most of the time people stare out of curiosity. Before we had our daughter I would have looked as well. I had never seen anyone like her and it’s human nature to be curious. There are a few people that judge, 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 (most of us do). There are times that I am in a rush or it’s just a bad day, but most of the time instead of starring, say hello. We don’t bite and our kids are not contagious. I promise, you can’t catch Cerebral Palsy.
Medicine advances everyday. There are more and more kids surviving diagnoses that previously did not. With very few exceptions, people are not given expiration dates anymore. We know based on statics that our child is not likely to live past certain ages, but it’s not a guarantee. For many of us with complex chronic kids, our children where notexpected to survive birth, their first year, etc. We go into the “borrowed time” category very early in our journey. Basically what this means is that 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 set back 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 that we will out live our child and knowing that everyday could be the last is a hard reality to face.
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, having their own families, etc. Now our dreams are a lot different. Now we dream that 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 that 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.
When you are 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 very hard to get out of the dark spot. We need people that 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 of things. Tell us about a funny thing that happened at work, remind us of a great time we shared, etc.
No one likes to ask for help. We all want to be independent adults and not feel like a burden to our friends, family and communities. However, we all NEED help, regardless of ability. It took us years to get to a point where were were ready to have home health come into our home. Once we did though, we kicked ourselves for not doing it sooner. It took us a long time to accept friends and family offers to bring us dinner, help with errands, etc. as well too. We eventually realized that people were not offering help because they felt they had to, nor did their offers mean that they saw us as burdens. We eventually realized that they offered to help because they want to. Accepting this help was good for all of us. It was a way for people that love our daughter to be able to do something, and everything that they did was one less thing that we had to worry about. There are so many ways that 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 (HUGE- especially when in the hospital- complex kids’ parents live off of coffee), help with chores around the house, pick up the kids from school, walk the dog, the list goes on and on.
If you know a family that has a child with complex chronic issues, whether they will ask or not, they can use some help. Don’t say “let me know if there is anything I can do.” but instead make a direct offer “hey, I made a big pot of chili tonight, can I bring some by for you guys?”. If we decline, please don’t stop offering. It is hard to accept help.
We have been very fortunate to have amazing family, friends and community that support us and Casey in so many ways. We really hope that by sharing incites like this that 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. We are all struggling and hurting everyday, but with help and understanding from our community the days are a lot easier.