Chronic Illness and Parenting Fears

Living with chronic illness can create some unique parenting fears.  Here is a list I think is fairly common:

1. What if this is genetic, and my children develop it?  Our seventeen  year old daughter already lives with chronic pain, and the pediatrician recently suggested testing her for autoimmune diseases.  Of course any parent would rather suffer themselves than watch their child suffer, and this is one of our biggest fears in this community, right?  I can only hope that I have role modeled to her how to live a purposeful and joyful life no matter what life throws at her, but I still would hate to see her suffer.
2. What if, because of my disability, I can not keep my child safe? This was a concern when our son was born and when our daughter was a baby.  Thankfully, most autoimmune diseases go into remission during pregnancy and the few months after birth. 
   
   -I do remember though having to make some adaptations: keeping a pack-n-play on the main floor so I was not carrying him up and down stairs too many times, carrying him in a sling so I could safely have a handle on the stairs' railing if I did go up and down the stairs.  I do not think I ever lost my balance with him, but it was something I wanted to avoid at all cost. 
   -I also remember having to ask for help when our daughter was a baby, not every day, maybe a couple days a week until she was about 3 and my symptoms then abated somewhat.  It is a humbling thing for a young parent to have to ask for help, probably a hard thing for anyone, but there was a day I had to call a neighbor to help watch her until my husband got home, and there were many days we had to ask my parents or aunt to help with her or to drive us to her appointments.
   -I also remember having to be quite creative; putting towels on the kitchen floor and enough chairs to keep her safe from falling gave our daughter about 30 minutes of play in the sink while I could sit for a bit. We did some other outside-of-the-box things when our kids were little: indoor sandbox on top of a tarp, zip line and swings hanging from the basement ceiling, indoor climber slide, mini trampoline.  Believe it or not, we did this even in a small two bedroom house.  It enabled me to make sure they could get their energy out when I could not walk to a park with them.
3. What if my child resents me for having a disability?  Guess what? We are not alone in this. Every child resents their parents at some point in time, and it is okay for our kids to have and process their emotions about our disability.  It does not make it selfish of them.  I choose to not feel guilty, but at the same time I try my best to give empathy to them. It is a delicate balancing act.  Life is not fair, and it is okay for them to grieve that.
4. What if my child grows up too fast and tries to take care of me instead of being a carefree child? They will.  I do not have an easy answer to this one.  I do tell my kids, "Thank you for caring and being concerned.  You do not have to fix this though." (unless it's something simple like carrying groceries into the house).  We all get sad over this one, and we all hope that they develop empathy out of their circumstances.  It is also probably why we tend to not say no to every opportunity they have for socializing with their peers. 
5. What if my child thinks this is normal? Every child thinks that how they grew up was normal, until they hit their late teens/early twenties.  What do we do about  this?  All of us suffer somewhat to try to keep their lives as normal as possible.  How do we explain to them that when they are adults, it is good to sit down at the dinner table as a family and good to have more predictability than we are able to provide and good to plan vacations even if it is just camping and good to do things together?  I try my best to give the kids my attention each day.  The truth is I can't do many of these "normal" family things.  I am sure you face this too. It is important to expose our kids to the typical, healthy culture while still valuing the adaptations we make as a family with a disability.  I doubt I keep this balanced as well as I would like, but it is good to try. Also, asking grandparents to assist in exposing them to cultural norms is helpful.  I have found that my siblings have been a great help with this as well, as have friends.
   
   What are some of the parenting "what if's" you have found yourself having as you parent with a disability?  What have you found helpful?