A Mother of Two Children with Chronic Pain Remembers

A Mother of Two Children with Chronic Pain Remembers

(In her first column, Johanna Young shared how two of her children have Hypermobile Ehlers Danlos Syndrome (hEDS), an incurable genetic condition, along with several comorbidities. She described what she must go through physically and emotionally. We pick up her story here.)

I remember the day I realized something that broke me, broke my heart and shattered my confidence as a mom. That day sitting in the pain psychologist’s office listening to my eldest child talking about the physical and emotional challenges of being a 13-year-old with a body that was undependable, full of pain, dizziness, and fatigue. So much pain, so much loss. It’s always very hard to find a way to listen attentively and empathetically to your child pour their heart out to the psychologist while not losing it yourself. In fact, I’ve ruefully told people that it would be a very effective form of torture/interrigation; having your child face the wrath of cruel medical conditions without relief. There I sit quietly, watching as her well-constructed daily damn of fortitude breaks and her eyes pour tears out almost as fast as the words come out, finally released.  The frustration of being different, being scared all the time, constant doctors appointments, hurting so much, multiple medications, not keeping up with others, being told other kids think it’s fake.  I hate it because I know that I can’t fix it and I have witnessed and heard about these things over the last couple of years from her and her brother.  But then the psychologist looks at my daughter and asks her “what else?”

There’s something else.

What else is she afraid to say?

The psychologist can tell there’s something else that’s weighing on her and I’m not sure what it is.  Usually I know. My daughter looks at me and looks at the ground and says nothing.  What is she hiding?  Finally the psychologist says, “Do you ever feel like your brother (also with hEDS) is getting more attention?”  And my daughter frowns and nods at the floor, more tears. And then she breaks more, losing her last bit of emotional armor, and falls into me and sobs.  And inside I feel like I want to curl up in a ball and scream.

She’s been afraid to say it because she’s been protecting me.  She knows how much I do, how much I worry, and she feels guilty that she wants more.  And now I’m crying too.  Because despite quitting my job, researching treatments, making endless appointments, organizing medications, meeting with teachers, in addition to being a mom to my daughter, her brother with hEDS, and also the littlest brother who is a very energetic three year old, I’m still not doing enough for her.  She needs mom.

Johanna Young

Regardless of all what I’m doing for her, I’m not with her in the way she needs.  Yes, she needs the advocate, case worker, medical liaison, minivan driver to appointments, medication counting and dispensing mom, but she also just needs mom.  I do so much and am already so stressed and stretched out trying to juggle every day.  And now I cry just a little bit more as a thought crushes down on me in my head: “I will never be enough.”  I will never actually be enough for my kids because they need too much and I’m one person, their most important person and I will never be enough.  There will always be more demand than supply.

I will never be enough. But I don’t say this.  I tell her I understand, because I do understand.  We develop a plan.  We will have a date night every Thursday evening at 7:00pm.  It may only last ½ hour sometimes, but we put it on the calendar.  And we brainstorm about who else might be someone she trusts and would enjoy some “mom-like” attention from.  She chooses my sister, her Godmother, and we plan to reach out to her and ask her if she can set up a date night with my daughter once or twice a month and I know my sister will say yes.  So, my daughter feels a bit better now because she’s been able to admit what she needs, and we work through the guilt she expresses, and she feels relieved. I smile at her as we both wipe away tears.  The weight is off her shoulders but now it’s in my core: “You will never be enough, you will never be enough, you will never be enough.”  I hand my daughter another tissue and give her a squeeze as we sit on the couch across from the psychologist.

That day I drop her back off at school.  Her brothers are at school and daycare.  The house is quiet.  The dog wanders into the kitchen where I’m leaning against the counter, a bit frozen under an invisible avalanche of defeat.  “You will ever be enough, you will never be enough.” The dog comes and sits by me wagging his tail. So, I slide down the counter to the floor, thinking I will pet him, but instead I wrap my arms around him and suddenly wail.  He’s a good boy and lets me squeeze him hard as jagged, loud sounds of despair, frustration, anger, and defeat explode out of me.  And all I can think is how did it take me this long to figure out I will never be enough?  Who was I kidding?  So what if I quit my job to have more time to take care of them?  So what if I have found a group of doctors, I am confident in?  So what if I’ve managed to develop a routine schedule of care for them? So what if they have IEP plans at school now?  So what if their medicine is ordered?  I’m still never going to be enough.

These thoughts cover me, suffocating hope, shredding my confidence while I hold my dog and sob for many minutes.  I’m so angry and devastated.  Mad that no matter how hard I try, I can’t fix it.  Grief stricken that I can’t fix it.  Each time I think I’ve let out all the waves of grief, another one comes. It’s a frustration tsunami.  Poor dog.  But, as I said, he’s a good boy, and sits with me for at least 10 minutes as feelings I didn’t know were hiding in me come roaring out.  When the torrent finally eases to a slow leak of tears, I release the dog, rub him on his head and find a much-needed tissue.  I give the dog a couple of treats for the therapy payment.  I splash cold water on my face and try not to see the sad human looking at me from the mirror.  I call my mom and invite her to come over for dinner.  She comes and I relay to her my epiphany.  She doesn’t argue or try to convince me I’m wrong.  Just listens and gives me a hug.  The kids will be home so I pull it together enough that I can be functional.

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.  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.

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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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Lisa Bennett

Joanna, i am the grown disabled daughter of a Mother who loved me & was afraid she couldn’t be enough for me. My Mom is gone & I am now middle-aged. Do you know what I remember about my Mom? I remember that she was someone who loved me so much, so intensely, that she felt my pain. My Mother was imperfect. I didn’t need a perfect Mother. I simply needed one who LOVED me. I know my Mom loved me. Your daughter knows it, too. That is enough. It IS enough.

Desiree

You are a great mom never forget it. ❣️

Delta

Thank you for sharing this. Bless you and your family for being brave.

Stephanie Walker

Thank you! A million times over – thank you! I am on the other end — I am the one in excruciating non-ending pain and I feel like everyone thinks its fake so I completely understand your daughter. I also try to be everything to everyone even while I am in agony and just feel like I can’t go on.

I read your posting and started sobbing because I feel such empathy for you. No, you won’t feel like you’re enough but allowing your children to express to you their deepest feelings allows you, for that moment, to be enough.

We are all here for you – to lean on, cry with, scream with. We care!

Maureen M.

Dear Johanna, as heart wenching it is to read this…it is also EXCELLENT and RAW and REAL and VULNERABLE. And I get it 100%! I am so very very proud of you for the mom you are, for the caregiver that you are and for how much you love and fight for your kids.
God Bless you all!
I am also very proud of your daughter for expressing her feelings and needs.
Life is not easy…and truly none of us will ever be ‘enough’. Only God can be.
I hope that you can find a ‘positive’ place in knowing that you are not enough (yes, that is tough for us moms) and that it will release some pressure off your shoulders.
You are amazing! You are strong! And, you are human.
Like I wrote in the comments of your last post… ‘even the strongest of women have their boundaries’. It is not possible for us to do it all.
I send you hugs to warm your heart and give you strength and courage to carry on. You need care also… remember to always take a healthy reprieve when needed and reach out for help with the kids.
I have slid down my kitchen counter in a time of overload and exhaustion from life.
And I wailed while on the floor. And so I ‘felt’ it as you described yourself doing that.
How sweet the part about hugging your dog through it. Good pup!
With care, Maureen M.

Lean on the Lord he will never fail you!

Mary Cremer

Very well written. Know that you are doing your best.

EDS is our base condition and we have co conditions to. Then we also have auto immune in the family too.

Having an invisible illness is a blessing and a curse. While it’s nice to be in public and not look sick, it’s difficult for others to take you serious, even doctors.