Enough

Enough

What do you do when no matter what you do will not cure your child? This is the question that haunts my mind in the late hours of the night, when the kids are asleep, the doctor appointments of the day are complete, and I can finally stop and think—in silence. The guilt and anger thunder in the silence because despite my efforts, you (I) feel failure because your kids are still suffering.

Johanna Young

Two of my three children have Hypermobile Ehlers Danlos Syndrome (hEDS), an incurable genetic condition, along with several comorbidities, that results in daily chronic wide-spread body pain, crushing fatigue, joint dislocations, migraines, digestive dysfunction, heart rate regulation issues, and a myriad of other symptoms.  This means between the two of them we have a team of over a dozen specialists and easily over 100 medical appointments per year.

Raising a chronically ill child feels impossible, it changes your life, it challenges your faith, and it reminds you of how very human and mortal you really are.  For me, having kids that wake up in pain, fight through the day in pain and go to sleep in pain is daily torture.  When they were born, all perfect and squishy, all I imagined was a bright future.  Sure, I knew they would stress me out, misbehave, get ear infections, hide homework… They would be kids and do what kids do.  And I would be a mom, and do what moms do – take them to school and play dates, count to 3 when they misbehaved, dry tears when they didn’t get a part in the school play, and cheer when they spelled the words right in the spelling bee.  But life changed.  The kids I expected and the mom I thought I was destined to be were and are drastically different.

Now life is about scheduling and rescheduling doctor appointments, working with school staff to create and enforce Individual Educational Plans, saving a space in the garage for wheelchairs and crutches, buying gluten free food, cancelling plans and calling kids in sick when their bodies hurt too much or they can’t find the energy to get out of bed, and yet, still trying to raise teenage kids with teenage needs.  It’s too much for one mom, but what choice do I have?  I must keep going. For them.  No matter what.  Even when it feels impossible.  Even when it seems like my efforts will never be enough. I’ve had to learn so much and teach myself so much. Now my hope is that I can share my story to help another mom realize that it is ok to be mortal, albeit a super mortal. It’s ok to doubt and make mistakes, and it’s okay to forgive yourself for not being able to fix your kid.

In her next column, Johanna will talk about a very challenging day in her and one of her children’s lives.

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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

Honest. Authentic. Thank you for sharing your story, Johanna.

Kristen

I agree with Maureen! Shame on you JAMES McCAY.If you don’t have anything good to say try refraining.Johanna was very brave to tell her story and she doesn’t need rude people like you kicking her down.She is a wonderful and devoted mother who loves and cares deeply for her precious Children.Johanna Thank you so much for sharing your story!

Maureen M.

@Alan Edwards, Thank you for the recommendation to watch The Chilling Effect.
I just watched it and am blown away that this Documentary was made in 2004 yet…the same dialogue and medications issues are exactly the same 15 yrs later!! Nothing has changed.
And the ‘addict crisis’ is even worse!
Until 5 yrs ago I was completely ignorant of any ‘war on pain patients’ until I moved to a new state (Florida) and my new pain management became incredibly bizarre! for me here!!
I have suffered more from increased pain issues ever since from being under medicated now.
My heart broke for both of those men and their families. I’m wondering if Richard is still in prison? I did google why Siobhan has passed away. Such tragic and very poignant stories!

Maureen M.

James McCay, shame on you for horribly responding as you did. There is no place here for comments like that. I pray for you to have pity on the suffering rather than try to induce further anguish.

Alan Edwards

Ehlers- Danlos is discussed often on NPR. I encourage readers to search You Tube for the excellent but super tragic “The Chilling Effect” by the late Siobhan Reynolds who had a husband with ED and now an orphan teen with the disease. It appears to have been shortened but absolutely watch this circa 2004 documentary about Intractable pain. It is not a waste of time and shows the deep corruption of the CDC, DEA, and FDA. Listen to the wisdom and stories of unbelievable integrity. Google or Bing all the people in The Chilling Effect.

DeeBee

Dearheart, I hope that you are able to quickly and easily disregard the trolling of jerks like James. I’m looking forward to reading your next section.

James, the world thanks you for not procreating and sharing your *lovely* attitude with other humans.

dooney

I cant even imagine how hard your daily life must be. The physical and mental stress must be overwhelming. I am my own caregiver basically and when my husband back acts up I take care of him even if I don’t feel well and having a high pain day. Thank god that doesnt happen daily. I cant imagine being in your position. I’m saying a prayer for you.

Steven

With a grown ofspring I am helpless to ease their pain. This is just absolute torture . How do we like the new world order?

Maureen M.

Dear Johanna, I am a mom and I cannot imagine all that you have to deal with. I hope that you have some support. My mommy heart swells for you. Know that you are already a strong woman but that you must have your limits for your own health…if even those quiet moments at night to breathe and try to heal your own mind and body from your hectic day.
I was single mom (supermom!) and learned in therapy years ago…’Even the strongest of women MUST set boundaries with self and others’.
Learning that helped me see my stressful life much differently. I finally gave myself permission to ‘stop and smell the roses now and then’ in order to reset and refresh so that I could keep moving forward. You will be in my prayers. I send you courage and strength. Maureen M.

Jess Agee

I just want to say I’m so so sorry your kids have to go through that pain. It breaks my heart! You sound like a super hero to me! I’m a mom of 3 as well ages 17, 19 ,21 My oldest is Autistic & he was born in 98’ as you can imagine it was really hard to get diagnosed. At around age 11 he was Dx with PDD/NOS , Finally about a yr later he was Dx w/ Autism. Boy have times been challenging with the lack of resources & times I felt I was a failure & still do.
I live in Cp from a cervical spinal fusion that lead to nerve damage, cervical arthritis, ddd, fibromyalgia/ CFS, plus herniated disc above my plate in my neck & osteoarthritis in hips, knees plus more. I have IBS which has got to the point I can’t eat & I recently had my gallbladder removed.I slept for a mth only getting up for a few hrs here & there, It put me in a full blown flare that I’m still fighting. My husband has Crohn’s & last year he had a heart attack ( he’s 42 ) & still isn’t fixed but he’s alive thankfully, he also has bipolar disorder. So any stress brings on all his symptoms which isn’t good for his heart. He’s basically been my caregiver for over 10yrs , and my sons too. I met him 2mths after having my oldest son. So when I had my surgery in 07’ he took on the caregiver roll. It doesn’t help I don’t drive. My other two children have issue with pain , all 3 suffer digestive issues & possibly bipolar depression, or depressed & anxiety. I actually can’t sleep right now bc my son goes to a digestive specialist today. My daughter may have fibromyalgia as well, she is 11 weeks pregnant & had a miscarriage earlier this year & she is spotting, thankfully the baby is ok, I worry for her emotionally if something were to go wrong.My point of writing you this is I couldn’t imagine doing this alone, that I understand the nights spent awake & the many appointments. I just can’t imagine Tho what your family goes through. Ty for sharing this with us.

Angie Heavner

Hi coming from a mother of 3 very rare children welcome to the club. Each one of mine are rare and none are the same. My oldest is the only one like him in the world, doctors have seen the problems just not in one child. My second one is, as of now one of 10 in the world, as far as we know. My youngest is rare due to his symptoms he has H-EDS but does not register pain correctly and sees double (completely side by side which is unusual) he is also dyslexic, and we believe he had CRPS/RSD but went into remission (not sure because he doesn’t register pain but the other signs were there) they also didn’t say what it was.
Life is fun with kids with challenges but push them always to do more than the doctors say. Believe me they can do and be whatever they set their mind to. We were told my oldest would not live past a yr old and would never walk. We were told my daughter would never be able to go further than a secretary position and our youngest would be dependent on us. My oldest is 31, he got married a yr ago and walked down the aisle to his dad who married them, he also danced at his wedding. My daughter works and has her AA degree now and going for her bachelor’s degree in forensic anthropology (she is my stubborn child, might be because she was born on Halloween day, lol). My youngest is a mechanic and works on small engines (which he has a real knack for)and vehicles daily. He is engaged to be married. Push them and they will do anything they want.
Also if no one has said anything to you yet check into putting them on a vitamin c regimen now. CRPS/RSD goes hand in hand with EDS and its not a disorder you want them to do deal with any time soon. Vitamin c can help reduce them from getting it.
Good luck and don’t let anyone tell you differently but you are doing a great job it’s not easy but life is not easy.

James McCay

I’m going to say what many think, but would never dare say.

Simple solution; DO NOT HAVE CHILDREN!
I did NOT (I’m 52 now & have been asexual by choice since 2001- it’s easier than you think & I’ve had more great sex that most in my life!) because I saw this country (USA) declining continuously since 1983- impending Nuclear War, HIV/AIDS, ongoing wars all over the world, unstable US dollar, rich getting richer, poor getting poorer. I remained a virgin until I was 19 years old, ALSO BY CHOICE & FEAR! Every decade since the 1980’s, this country has not improved; it just changed with different BAD things screaming at us to NOT HAVE KIDS!

No one in their right mind would have brought a child into this world. Yet I have two childhood friends- the most ignorant of our group (out of 30) who had about (20) CHILDREN EACH! One a male (who had 20 children with two women, one an illegal from Mexico!), the other a tomboy (female) who shot out the first 8 children in 8-years starting at age 16!!! Then had successive husbands & many children with each totalling around 20! THEY ARE NOTHING BUT A SUCK ON THE GOVERNMENT TAKING AWAY FROM DISABLED PAIN PATIENTS LIKE US!!!

I’ve always been a very empathetic towards others, especially sick children. At age 22, I started donating HUGE quantities of Sports Cards (including stars & RC’s), plus autographs to hospitalized children. I did that every year (up to 200,000 cards per year) for 26-consecutive years (until 2015 when I became way too sick to continue). I never sought publicity and never made enough to claim a tax write off (nor would I if I did make enough). We may be forced to live in society, but I’ll live in it BY MY RULES, not anyone else’s or THEIR EXPECTATIONS (which is why many of you had children!).

Take responsibility for YOUR decisions! Don’t push them on others. Nothing is more unfair!

God bless you!!

God bless you dear lady!!
Don’t ever doubt that you are a GREATmother, doing your very best under very trying circumstances!