Mothers of Children with Chronic Pain—When is Enough Good Enough?

Mothers of Children with Chronic Pain—When is Enough Good Enough?

(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.

Johanna Young

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.

Read Johanna’s first installment.

Read Johanna’s second installment.

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Authored by: Johanna Young

Johanna Young, a Wisconsin disability advocate, is the mother of three kids, two of which battle with Ehlers Danlos syndrome and multiple associated conditions.

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Jennifer

Johanna – You inspire me (and so does your amazing family) as I navigate the my own chronic pain journey. You have taught your beautiful children how to be brave, empathetic and compassionate while enduring chronic pain that most will never experience or fully know.

Child #1 openly shares her experiences with a new med when I’m worried about making the same med change and reassures me, the adult, that I too will get past the side effects. I laugh as I listen to Child #2 gently school my father in what it’s like to be a spoonie – patiently explaining to him how frustrating it is to have your energy sapped and your body fail you.

I am in awe of how your children move through life with kindness, grace and humor, advocating for and inspiring others with chronic pain. Great job, mama. You’ve done better than you know.

Kristen

Johanna,Thank you for taking the time to share your story.I read them all and you are a wonderful,loving,caring and very devoted Mother to your Children.Please don’t ever doubt that.I am also so sorry that in one part of your Story that a commenter by the name JAMES said some Aweful things.pay no mind to people like himself who are pure hurtful and evil.No one deserves that and he should be ashamed of himself and whoever moderates should not have posted his ignorant comment. You are doing a wonderful job caring for your Children.Sending Blessings your way!

HBO release 2006 movie called (Thank you for smoking) about lobbyist for tobacco during the health craze agaisnt tobacco company. Very interesting very similer about opiates. Chronic pain people should watch and learn.

Maureen M.

Johanna, Bingo! I made comments to your other stories (had I known!) and now I am so happy to read this last post of yours only to find out that you have found peace in being ‘not enough’. I am so very proud of you and your having evolved to that emotional place. You are the best mom that you can possibly be! Let go and let God! I will be praying or you and your children. Maureen M.