(When we met Johanna Young—a Wisconsin woman who has two children with Hypermobile Ehlers Danlos Syndrome (hEDS), an incurable genetic condition, she spoke of the challenges she faces every day. Here story was so powerful we asked her to tell it. In her final installment, Johanna shares a constant in her life—taking care of her kids)
So that’s the day I realized I will never be enough. Because when your kid(s) is sick, affected, diagnosed with whatever, you lose the control you once believed you have. But because you’re a mom, you don’t relinquish the control. You hang on, grip hard on to whatever it is you can. It may be researching the condition, searching for doctors, changing the medicine, finding therapists, going to a conference. But you never stop. Ever. You don’t stop because to stop would be to quit. And you can’t quit your kids. You can quit your job, you can quit your hobby, you can quit your social life, you can, in my case, get mad and quit church. But you can’t quit your kids.
And the days go on. The appointments keep getting made. We try our best to have our Thursday night dates and I add a Friday night date for her brother. Littlest brother also needs lots of attention still so I keep trying to balance everyone without going batty. It’s been over two years now since that painful day when I first told myself I will never be enough. That cruel and energy sucking message has played through my head so many times I feel like it’s created its own path in my mind.
I’ve cycled through the grief of accepting my futility in fighting my kids’ medical conditions:
Denial – The first couple years where all I did was focus on what comes next, who do we add to the team, go go go, don’t quit, don’t stop.
Anger – The anger that kicked in when my second child was diagnosed about a year and a half after the first. Anger that this damn disorder is interrupting their lives, hurting them, stealing their success, and morphing in so many ways, I can’t get ahead of it and stop it.
Bargaining – This is the “what if” or “if only” phase. What if I could have found them help sooner? What if I insisted that another doctor listen in the first place? What if I find another specialist who helps? What if, what if, what if.
Depression – that’s self-explanatory and I don’t know if it will ever be over but it’s only a small part of the picture. It’s under control, most days. That’s the best I can do for now.
Acceptance – I’m not really there yet but something interesting has happened. A discovery of sorts.
When I first realized I wasn’t ever going to be enough, I felt like a failure. I felt like I had lost and that the battle was not and would not be fair. That’s true. It’s not. But somehow, I’ve realized that it’s ok for me to admit that I’m not ever going to be enough. How can anyone? So, I accept it. I don’t like it, I resent it, it sucks. But I accept it. I, one human mom, will never be enough because nothing, short of a cure, can be.
So even with the epiphany of knowing I will never be enough I have never quit. And through this process of nearly 3 years of not being enough, I’ve slowly begun to redefine what “enough” is. Or maybe what it is not. Enough doesn’t mean making endless doctor appointments. Enough doesn’t mean reading every article that any person potentially related to my children’s disorders wrote. Enough doesn’t mean having lots of great vitamins or supplements or medication. Enough doesn’t mean I’ve managed to have a specific number of minutes one on one with each of my children this week. I’m redefining “enough.”
Instead of always trying to be enough, now I strive to be “good enough”. It means I’m working on accepting that there will always be a perception (from me) that I can be or should be doing more. Learning my new philosophy of “good enough” means knowing that I’m trying is what really counts, and if something isn’t working, that’s ok because I will have other options (probably too many options).
Good enough means knowing that I can’t actually make my child happy, that’s not my job – but I can try to help them find happiness. Good enough means that I have to know that sometimes things are going to be really ugly. My kids will go through flares of pain and sickness that I can’t control. Other times my kids may be suffering emotionally. Doctors we love will retire or move. Kids at school are going to be asses. Teachers may not always understand. My kids go to more medical appointments than birthday parties. Their list of diagnosis is longer than anyone else I know. The catalog of the unfair things could be endless. And I can’t fix it. I can only try to help. And that’s good. I’m learning to forgive myself. I remind myself and all the other moms I know that sometimes you have to realize that you are enough because you are good enough.