Letting Go . . . a little bit . .

Posted on May 10, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Life's Lessons, Uncategorized | Tags: , , , , , , , , , , , , |

Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I waited with my son as the crowd behind us pressed in.  Sixth grade students  from all over our county had descended on a parking lot to embark on the week they’d been looking forward to all year:  The Washington Trip.

Like all the other parents, I was excited, nervous and a bit scattered from the days of preparation and packing – reminding my son over and over what to do in a dozen different situations.  He’s 12 now; and definitely has the eye-rolling, shoulder shrugging thing down pat.  He finds his own ways to show his love – but clearly . . . open affection at the parking lot that night was not one of them.

I did sneak half a hug before he climbed the stairs to board his bus, and handed off his suitcase to the men loading the compartments below the seats.  Then clutching my Little Red Binder, I turned to the chaperone who was checking students off as they boarded. She smiled as she recognized me from our meeting earlier in the week when we’d gone over his medical condition.

First I handed her the Ziploc bag with his daily medication in it – explained when it would be time for the next dose, and then – referring to the binder – told her “everything else is in here”.  The Little Red Binder I still hadn’t let go of contained 13 years worth of documentation on my son’s rare genetic condition – Vascular Ehlers-Danlos Syndrome.

Inside that binder was every letter I’ve ever received from a doctor or lab – including the one with his original diagnosis.  There are copies of emails from doctors at Johns Hopkins and the NIH; and CD’s which hold images of his entire vascular system as well as the intricate soft tissue of his recently repaired right knee.

Watching from the crowd of parents as he darted back and forth on that bus – trying to save seats for his friends– it was very easy to forget that the Little Red Binder was even necessary.  Day to day he goes through life at warp-speed; only slowing down long enough to grab a snack, get involved in one of his gadgets, or torture his sister a little.

To see him with his friends, you’d never in a million years guess what lurks within the tiniest fibers of his tissues – or, rather, what doesn’t lurk.  Collagen.  It’s the “glue” that tissue relies on to stay in tact.  The disease he inherited from his father robs his body of this critical element needed to hold itself together.  But no matter how “normal” he looks, the same activities that may be just part of “normal boyhood” can lead to  tragedy for him.

I try not to dwell on it, and most days the reality of it is so far in the back of my mind I have to remind myself  some things are too risky for him.  But – risks aside – I wanted him to go on this trip – I wanted him to have this experience.  And for months we’ve been focused on is how much fun it would be.

However, that Monday night, standing in the warm, muggy air, reality was impossible to ignore as I looked at the chaperone waiting to take the binder from me.  I was surprised by how much I didn’t want to let go of it.  And when I finally did the old, familiar Cold ran through me; taking up residence somewhere between my heart and my stomach.

Denial is a funny thing  I suppose.  Looking back on it now, as long as I was the one holding the binder, I was still in control.  But letting go of it . . . putting that control in someone else’s hands . . . meant it was real.  No matter what he looks like on the outside – this is all real.   The whole experience drove home another reality for me:  I don’t have much time left as “the one” who makes the decisions.

He saw me lingering in the parking lot and gave me one of those “Geez mom, you’re embarrassing me” looks and as I turned to leave, it was clear to me that he really is going to grow up and I really won’t be able to monitor and watch over him like I do now.

A very dear friend of mine who passed away earlier this year from the same disease offered me his advice several years ago on what he felt was the best way to approach raising my son with this unpredictable disease.  Being an active guy himself who’d just come through some major health crises, he told me the hardest thing I’ve ever had to hear on this subject:

“Debbie, you’re going to have to learn that this is HIS disease – not yours. It’s his body and he will have to learn his own limits.  All you can do is offer him guidelines, but in the end – it’s up to him to limit himself.”

I still bristle at the advice – not as much as I used to though.  But, like everything else Glenn ever told me on this subject, it’s turning out to be completely right.

I’m trying, Glenn – I really am trying.


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14 Responses to “Letting Go . . . a little bit . .”

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Another wonderful read. Your words always make me slow down and enjoy life around me. Your son is always in my prayers-

Thanks Cate – that means a lot to me. 🙂

As I’m crying my eyes out reading this, I can only imagine what my parents think and feel every time I come home with a new disease, syndrome or condition that EDS does to my body. I know they worry for me and now I’m pushing 40, my body is failing fast, all I want to do is let them know all the time that I’m not in pain and I’m doing OK. I can’t hide it anymore no matter how hard I try, they can see my body failing and they are very worried.

Just want to let you all know, I Love You All & never stop being Mom’s & Dad’s that worry

Sweetheart, i do understand what your feeling.Enjoying what you have now and letting go is not an easy thing to do. I love you.

Sweetheart, enjoying what we have an letting go at the same time is hard. I love you.

Jeez Debbie,
The more of your story I read, the more I realize we have A LOT in common. Thank you so much for being able to put a long drawn out story into such good perspective, otherwise we may as well be talking to a doctor, right?
I am so glad you had the ability to put some trust in someone else in such A VERY HARD situation. Ugggghhhh

Your stories allow insight to how fragile life can be. That’s truly a gift and one that needs to be shared.

Your friend,

You are so brave! Bravo! Mrs. Strohm would be proud of you too, but for other reasons….

Wow, thanks for sharing this. It is amazing to know that someone could relate to my own experience so well, all the way from my son’s eye rolling, half-hugs, and sister torturing, to my own anxiety about trusting others with his health. My son is also in sixth grade. He lives with an aneurysm due to a connective tissue disorder. And I also maintain a binder containing notes from every doctor visit, printouts of e-mail messages from doctors at Johns Hopkins and NIH, and CDs with imaging of his vascular system. It’s all in there.

Those words from Glenn bring tears to my eyes. It is hard to imagine handing over that binder to my son one day and letting him be responsible for managing his own health. It almost feels like I have embraced this condition and made it my own, but I have to remind myself that it is not about me. There will only be a few more family medical vacations in Baltimore before he becomes the one making his own decisions about doctor visits. The impossible part will be handing over all the information that is stored not in the binder, but in my mind. I suppose he has his own learning to do, and eventually he’ll be the one teaching me what he has learned about his medical care.

You are a very talented writer, and I look forward to learning more from your life and your stories.


KT – I think we all go through the same things; how amazing that your son is the same age is mine! I’m fortunate that as of right now his scans are clear and we are aneurysm free, but I am discussing the possibility of starting him on beta-blockers this summer per Dr. McDonnell at the NIH. We haven’t been to Baltimore yet – I’m anxious to go and have him seen personally by the “experts”. It’s so scary knowing the local doctors (local meaning within a few hundred miles) really don’t have the knowledge necessary to effectively handle a crisis. But – you know that already, don’t you??

About the binder – I’m definitely keeping it (I actually have two – one at home and the little one I just made) – but I also just got him a CARE Memory band bracelet with a USB drive built in. It’s made like a sportsband and is waterproof. It has a software program to include all his medical history, insurance information, specialists, etc. It’s a little soon to tell, but so far I am pleased – and most importantly – he seems to like it.

As far as Glenn’s words – they bring tears to my eyes, too. Especially because he’s not here anymore to say them out loud to me! He was my “go-to-guy” on matters such as these. He put up with my panicked, paranoid, hyper-protective delusions and always managed to bring me back down to earth but keep me laughing at the same time. He was 39 when he died this past January and one thing I always admired about him was the way he went ahead with his life, his plans, and pursued his future in spite of the diagnosis.

Thanks for writing and hopefully we’ll get to chat more in the future.

Debbie –
Thank you so much for your wonderful blogs. This one in particular reminded me of the first time we sent our son to boy scout camp without either of his parents. We too had the bag with the daily meds and lots of instructions ~ I love your idea of the red binder – I must do that. Its wonderful to feel that we’re not so alone with this scary rare diagnosis of EDS Vascular type. Do you know other people with this and how are you connecting with them?


I’m glad you’re able to relate to my stories – it’s hard enough living with something like this in your family – but feeling all alone is pure torture. I’m impressed you were able to send your son to Boy Scout camp – those seem so challenging – I’m slowly trying to branch out in that direction, though. Mostly b/c I know he’s getting to the age where he will start doing things whether I approve or not.

I do know LOTS of other people with Vascular EDS – those living with it and those raising children with it – and in many cases both. I connect with them on FB, a Yahoo group, and through the EDSNC website.

The link for the VEDS group on Yahoo is:

You do have to request to join but the moderator is a great lady who keeps up with it very regularly. That particular group of folks has been my lifeline and my sanity over the last 12 months. There isn’t enough room on the web to say how I feel about them and what they’ve done for me – and all the members. If you’re not already a part of it – I HIGHLY recommend joining.

The link for the EDSNC (Ehlers-Danlos Network C.A.R.E.S.) is http://www.ehlersdanlosnetwork.org

My FB link is:

Please get in touch any time – hopefully those links will work!

Best Wishes!

I remember my own Washington trip fondly. It really is a transition…for me, the first time being away from my parents for any significant period of time.

I don’t yet understand what it’s like to see that trip from a parent’s point of view…especially with VEDS thrown into the equation. All I know is my own quiet terror at wondering what will happen to me next; a fear that didn’t exist until a couple years ago. And I have my own fat binder full of medical records that I take with me everywhere.

I hope the very best for you and your son.

WOW! Great way to articulate how it is for you to know that you want to control and protect and knowing the reality that you can’t always. As I have both vascular and hypermobilty types of EDS I can relate on a different level, I am a control freak of everything in my life because I don’t have control over my own body…I can’t plan for my next anyeurism or my next dislocation, so instead I have a white knuckle grasp on everything else, the health of my husband, dogs, my mom, the bills, etc…I am OCD I think. As far as being the kid that is sick, it’s your job as a Mom to worry, love and protect and we know it and TRUST ME, we will get past our teen years and crave it! Every surgery I have ever had, I only ever looked for my Mom in recovery! Love my Husband to death but I want my Mom’s face, and her rubbing my forehead, and I am 36 years old! My Mom really was rocked by the last brain surgery I had to repair 2 AVM’s (areterial veinous malformations) and left her entire family behind in NY (her 2 other daughters, grandkids, all other family etc) and bought the house across the street from me. She wanted to be close…and she is. I say it with a big smile on my face because while I say that it is so that I can take care of her…we all know the truth, its so she can take care of me cuz no one does it better then a Mom!

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