02/08/2021
So true 💗
What parents of medically complex children wish you knew:
We are not superhuman.
We aren't some different, stronger breed of human. Being in the role of caregiver is just as hard for us as you imagine it might be for you. We didn't automatically gain knowledge and strength that others don't have upon being handed this role.
You could do it, too.
So often, we are told, "I don't know how you do it!" But, the truth is, you could do it, too, for your child if you needed to. When my son was born, all I knew was that I was going to love him and take care of him no matter what. Nearly sixteen years later, that is still exactly what I'm doing. I think that is what most parents are doing.
We are tired.
We are so, so tired. Not sleepy. Not just fatigued. We are tired way down deep. Completely spent. And sleep can't fix it, not that we get a good nights sleep often. Our minds, our hearts, our bodies are tired. It won't stop us, though.
We are lonely.
We don't get out much. We don't have visitors often. Friendships and relationships outside of the home can be hard to foster when so much of our lives revolve around caregiving. We are completely and totally responsible for another person's wellbeing, and that can be time and energy consuming. That doesn't mean we don't long for those connections, though. We are thankful for the friends and family who join us in our world from time to time and also for the ones who invite us even if we have to decline most of the time.
Many of us struggle with mental illness.
Trauma, high stress levels, and isolation are just a few contributors to the higher instances of mental illness among caregivers, such as depression, anxiety, and PTSD. It can be exhausting to hear how strong we are when we are struggling to keep it together sometimes.
We are terrified of your cough.
Is it allergies? Is it a cold? Is it the flu? We don't know, but we're scared it could make our children very sick or worse. We wish family and friends would tell us when they or someone in their house is sick.
There is always something we need to do.
Maybe we need to make a phone call (there is almost always a call to be made), fill out some forms, change a diaper, feed a meal, order supplies, give a bath, or any of the other day to day stuff that often gets pushed aside as we focus on our child. If we are still, chances are there is something that just isn't getting done in that moment and we know it.
We worry a lot.
We worry about our child's health. We worry about them dying. Us dying. Who would take care of them? Finances. Neglecting our own health. Services. Insurance. Medications. Paperwork. Appointments. Waivers. Did I mention we are tired?
We would do it all over again.
If given the choice, we would choose this life all over again if it meant knowing and loving our child.
