I may earn money or products from the companies mentioned in this post.
The reality of life as a complex medical mom.
Originally posted on The Unbroken Smile on May 23, 2016.
When people ask me about being a mom in the world of complex chronic medical issues the one thing they don’t seem to expect is the guilt.
In the beginning of my son’s journey, I had trust in doctors. I believed that when my kids were sick I could take them to the doctor and a competent medical professional would care about my child and want to help them. I knew that there were “bad” doctors but didn’t think to question assumptions made by the medical community. I am the daughter of a nurse so I know that medical professionals are all human, but I really did believe in them. I believed that the medical community and my insurance were there to help and had my child’s best interests at heart. I went along with their diagnoses, didn’t question much, and did what I was told . . .
I quickly learned that my positive suppositions regarding my medical providers was often misplaced. I learned that if something wasn’t easy or common, they started to look for other causes.
“What’s he trying to get out of?”
“Does he often try to manipulate people?”
“Did your mom tell you to say that?”
“Why are you making this up?”
As tests came back “normal” and his pain continued we heard more and more of these questions looking to assign blame for his physical inability to stand any pressure on his foot to more psychological symptoms, manipulation, or even me. Feeling doctors turn on me was one of the most alarming experiences.
Then, hallelujah, someone who knew what was wrong with my son! Someone who gave it a name and had a treatment plan all lined up. Someone was really going to help us!
I naively went back to listening to the doctors. Trying the things they had in mind . . . and quickly found that while this doctor knew the cause of the pain, if the plan she had in mind wasn’t effective for him, then we were back to the blame game again. I learned to question as my son had one bad reaction after another to the medications prescribed. As his symptoms took new and alarming turns that were blown off because they didn’t fit into the plan or the “typical” I stopped being that parent who takes everything a doctor says at face value and started being one who asked questions. I have rejected courses of action that didn’t make any sense, insisted on second opinions, and fired a handful of doctors as they were not listening to what we were saying. I stopped being compliant and started looking outside the box.
Looking back, I experience guilt over being so docile during those first few months. For half believing that it might be in his head or he might be trying to get out of something . . . for not questioning and pushing harder, faster, to get him help that might have saved us from years of pain.
But, there is guilt everywhere in this world of being the mom of a medically complex kiddo. No matter what I do, what the choice, what the treatments, there will always be a wonder if it was the best thing, or should I have tried something else?
No matter what I do, what the choice, what the treatments, there will always be a wonder if it was the best thing, or should I have tried something else?
I also experience guilt when I think of things we have tried that didn’t help, or didn’t last. I look at the nerve block, the weeks in the hospital in and out of state, the acupuncturist, the medications, the supplements, the doctors, the ER visits, the x-rays/MRIs/ultrasounds/scopes, the physical therapy, the aqua therapy, the chiropractors, the naturopaths, the HBOT, the tens machine, the massage therapists, the consultations . . .
I don’t know which of these treatments was worth it in the long run, but when I count the months, he has had more good ones than bad during the last three and a half years . . . and sometimes the tools that we have used worked for awhile, gave a period of lower more functional pain, and that is a great thing!
I look at the ones that we have opted not to do yet – Ketamine infusions, spinal cord stimulators, Calmare, etc. – and wonder if I should have tried one of those or in what order I should have tried them for best results . . .
I look at the money spent on things that didn’t work, things that worked for awhile, things that made it worse, things that are helpful . . .
I look at the activities I let him do on good days – skiing, baseball, jumping on the trampoline, running and playing with friends, going to school . . .
But, here’s the thing. I’m not perfect and I was not built for this challenge. Having a healthy, well adjusted kiddo is hard enough without instructions – having one who all of a sudden seems to fall apart at the seams left me totally unprepared. I think I have stepped up with the best of intentions and with the my son’s best interests at heart.
Having a healthy, well adjusted kiddo is hard enough without instructions – having one who all of a sudden seems to fall apart at the seams left me totally unprepared.
The guilt of not being perfect, I think all parents deal with it, and what we have to remember, each and every time that mean girl in our heads tells us that we have royally messed this up . . . is that we are doing the absolute best we can. We are going above and beyond what we expected and are trying to know the unknowable – to know what will help the one we love out of all the different ideas and modalities and theories about this disease – and know that while we might not find the right thing the first time (or second, or third), we will keep on standing and fighting through the ups and the downs. Through it all, no matter what a disaster I feel like – my son knows that I love him and will fight for him and will teach him to fight for himself with love, compassion, and understanding that, at this point, we likely know WAY more about this disease than the majority of doctors we might come across along the way and the only thing we can do is listen and then make decisions as to the right course based on what we know and feel – and that is enough.
Love Always, Meg
