Being a parent is hard. You are completely responsible for another human life. You’re not only responsible for keeping them alive, but also for providing for all of their needs and giving them the best life possible. That’s a stressful task for a normal healthy child. When you are the parent of a medically complex child, that stress is multiplied infinitely. November is National Caregiver Month, and we LOVE our amazing caregivers. This is a small love letter of appreciation for all of the extremely hard work you do.
Right now, there about 3 million children in the U.S. considered medically complex. These special kids require constant care, and though a lot of families qualify for home nursing, not everyone wants a stranger in their home, and not everyone can trust someone they don’t know with their child’s care. It’s not always a good fit, but you do what needs to be done.
You put the care and needs of your child leaps and bounds before your own. Many times, the journey you had to travel to arrive at home with your child left your mental health in shambles, but you won’t let yourself be a priority. Your life is only about extending your child’s life and improving their quality as much as possible.
You have survived a trauma. Trauma is a wound that injures us emotionally, psychologically and physiologically. Trauma occurs when a person experiences a threat, which includes physical and psychological threats to oneself or others. We each have innate capabilities to respond to such situations and return to a state of equilibrium. However if the intensity or duration of the situation overwhelms our resilience, we may feel helpless, shame, or terror. Those emotions and feelings then reduce our ability to re-establish a sense of relative safety, our built-in survival mechanisms remain on high alert continually responding to perceived threats; thus, we become traumatized. In spite of this, you power on like the warriors you are. Parents of medically complex children are FOUR times more likely to develop PTSD than the general population.
You travel back and fourth to appointments, procedures, and tests. Sometimes you sit in dread waiting for the results. You panic anytime another child comes close to yours with their snotty nose and dirty hands. Such a simple thing, children interacting, that is now seen through a totally different lens when your child is medically complex. That snotty nose could mean a hospital admission and time away from home and the rest of your family.
You have to fight for your child daily, you know them better than anyone. You are their best advocate, and I have seen how beautifully ferocious you can get if needed for the best interest of your child. You may not think so, but that takes a lot of courage. They see you. They feel that love and protection.
You may go days without a warm cup of coffee because by the time you are able to sit and drink it, it’s cold, if you even remember where you put it. You may go days without a long hot shower, or a shower at all because you are too scared to take your eyes off of your child, even for a moment. You are to exhausted to take care of yourself, but your child is provided for, and to you that is ALL that matters. You don’t see how much of a warrior you are, and you don’t believe it when you’re told.
Your strength and toughness become instilled in these special kids. I’ve seen them come through painful procedures and treatments smiling and as happy as they can be, because they know they are safe and loved. YOU did that for them. YOU are raising warriors who are defying odds daily.
For caregiver month, I ask that you remember your village. Ask your village for a small amount of help even if it’s just to take a tiny amount of time to yourself. I also know asking you to do this is like trying to baptize a cat.
If you aren’t a medical parent and you want to help someone who is, make them a self care basket. Make them freezer meals for the week so it’s one less thing they have to worry about. Just go and sit on the couch with them and just be there, even if it’s in silence.
To each and every one of you, YOU are amazing, strong, and loved, and so are your kids. We are so thankful to be a small part of your village and can’t wait to see what wonderful things you will do next.