The intersection between parent and caregiver crosses many times, much like a tangled ball of yarn. As mothers, we know instinctively that care-giving is a part of our responsibilities. From the moment that your baby is pulled from your womb and put to your breast to nurse, we realize our needs no longer come first. However, none of that was preparation for the job of being a full-time, chronic illness caregiver.
As if parenting a tween and teen is not enough of a challenge!
It has been a rough road over the last eight years since my daughter’s mononucleosis diagnosis became a chronic illness journey. As my baby girl prepares to turn eighteen years old, our roles are shifting again. I’m simultaneously looking back into the past at lessons learned, and into the hope of the future. As I do this, there are 7 things I want my daughter to know:
1. I Can’t Help but Blame Myself
A mother’s job is to protect her child. My goal was to keep you safe, healthy and happy. In many ways, I feel I was a failure in all three. The truth about what causes POTS is a mystery to even those that specialize in it. That, however, does not stop the barrage of thoughts that swirl around my head. Was it bad DNA? Maybe it was because you were not breastfed longer? Or was it the food I gave you? Was it that kind of sketchy, dirty movie theater we visited? Or maybe that one babysitter was sick? Could it be because we moved around too much in your childhood? Was it because I was not paying enough attention to while I pursued a Master’s Degree?
Along the way, I have asked myself these questions and a million others. as I tried to figure out what mistakes I could have made, in order to warn others. Nobody really wants to be a chronic illness caregiver. I see preventing others from enduring that fate as a worthy goal.
2. I Would Take The Illness From You If I Could
We hear a lot about parents begging their personal god to give them their child’s illness. From my perspective, this is not some act of sacrifice. It is purely a selfish desire to want to end your child’s suffering. There is nothing worse as a parent than to see your child hurting. I felt her pain in my bones and in my soul. Anyone that has been a parent knows that this is true. That being said, it has been my privilege to be your parent. If there is such a thing as divine purpose, mine was to help you survive this affliction. Being your chronic illness caregiver was the most important job that nobody every applied to do.
3. There Was Never One Second I Wished I Was Not Your Mom
When that old pediatrician counseled us the only option was to keep you comfortable until… (he trailed off before finishing the sentence), every fiber of my being screamed “no way, not my daughter.” He was wrong about the chronic fatigue syndrome diagnosis, for the record. When the same doctor called me to tell me that I should not let your illness interfere with my marriage, I cried. That was when it became clear he was not going to be the doctor to help you. I shudder to think of a lesser version of me being your mom. Another mom might have accepted his answer. Instead, your mom cut the average
4. I Never Believed You Would Not Get Better
Not every piece of advise we were given was great. Some medical providers hurt more than they helped, and we realize this now. But not trying was
The image of one-week-old you laying on a baby blanket on the floor next to her mother while she took a psychology final was fuel all these years. You were unreasonably calm and happy for a newborn. It was as if that infant, you, were an old soul that knew we were on the same team. Holding on to that vivid image has been a reminder that your purpose on this planet is greater than any difficulty you faced. The triumphs were worth it.
I still do not believe that there is no hope for you. Maybe in some ways, it would have been easier to accept this faulty idea. Easier for you, for me, and the whole family. But easy has never been the way our family worked. Overcoming obstacles was a way of life while growing up for your dad and I. In some ways it defined our family. How else would two poor kids put themselves through college while working and raising a family? Why would this be any different? It was this belief that had us try every kind of treatment or therapy available.
5. I Will Never Give Up
Whether it is essential oils, prayer, diet
So, late night research will continue to replace my worry. Listening to Podcasts about alternative wellness will be my go-to recreational activity. Me reading blogs like The
6. I Am Only Human
When I get tired or cranky or completely lose my $&*! it is not you I am angry with. Never was it you. It is the illness, the doctors, the medical system as a whole. Yes, it is with every intention that we live with a glass half full mentality. Positive vibes are the only choice we can conscientiously make as a chronic illness caregiver. But there are those days that my own health wears down, when talking to an insurance provider, or paying a doctor’s bill for something that did not really help get the better of me. It becomes necessary to charge my own batteries.
Keen awareness that your mom is all you have some days is not always enough to overpower the very human body and mind. So, hang in there while I put on my own oxygen mask. It is for your own protection that self-care has to come first sometimes.
7. Letting Go Is Harder Than Holding On
Now that my daughter is about to enter the age of legal adulthood, we are finding ourselves in unfamiliar territory. The realization that it is time for changes has set in firmly. In many ways we are ready; in others, not so much. The legal stuff, like the responsibility to provide health care coverage, is easy. The technical stuff like obtaining a driver’s license to get places she was normally chauffeured to is something actively being addressed. The physical stuff like coping with meeting the requirements of self-care during a flare (or when too fatigued to make it down the stairs) is not as clear cut. Taking steps to address the financial stuff like finding a job is a daily effort.
Out of all of it, the emotional stuff is the hardest. Saying “no” has always been difficult to do. Even before
There are some things that I know are certain. Katie’s resilience and strength have been proven time and time again. Her spirit is strong. She is wise beyond her years. She has strong goals. There is no doubt she will live her best life, one step at a time.
About the Author
Tami Madden has been a regular volunteer with The Unchargeables community while wearing many different hats. She is a Caregiver for a Chargie with Dysautonomia. You can find her on Instagram sharing her life as a reader, writer, teacher, baker, chicken soup maker, and fighter for all things healthier, stronger, kinder and better than yesterday at this link here.