The Council of Mothers (and a few devoted dads)

Posted on June 27, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Life's Lessons | Tags: , , , , , , , , , , |

The Council of Mothers (and a few devoted dads) convenes as necessary in the wee hours of the morning, the midday afternoon on holidays, the Tuesdays after checkups and at all other times deemed necessary by its members. Together we share one another’s questions, worries, and our greatest common fear – the loss of our children. 

Some of its wisest members are the mothers and fathers who’ve already crossed that chasm once and who, instead of turning their backs and continuing their lives in the opposite direction, fix their eyes on those of us still walking this treacherous road and on our children; pouring their hearts, their souls, their experience and all the love they had for their own children into ours.  

Such wisdom only comes from life’s hardest lessons learned, and theirs – regrettably – are lessons they can now apply only to the children of others.  It is their hindsight, their regrets, their “If I had it to do overs” that serve as the only road map available for this journey of ours.

Many in our group serve as surrogates, knowing they’ll have no children of their own because they’ve chosen not to risk passing on the disease that brings us all together. With all their strength and determination, they walk along with us, loving our children as their own – loving us as though we are family. 

There are also several others who, like me, do not carry this disease but who loved someone who did; someone whose grave we stood beside and to whom we said “goodbye” far too soon.  And now, like living in a land where we do not speak the language, we are raising our children as best we can, hoping to choose wisely, and wishing that we bore the pain in the place of our sons and daughters.  

The collective wisdom and experience this Council brings to bear serves as our reference when any of us, as I did recently, face a new experience with our children and have nowhere else to turn.  As is the case with virtually all rare diseases, there are precious few in the field of medicine who, though they may have the best intentions and sincerity of effort, can offer any actual valid guidance. 

At even the most prestigious well-respected hospitals and institutions, very few doctors or surgeons will have seen a child or adult with a body like theirs.  While some may have a vague memory from medical school about Ehlers-Danlos Syndrome, almost none will have diagnosed it themselves — not through any lack in their qualifications as a doctor, but simply as a result of the rarity of the disease.

Sounding the Alarm 

On a Tuesday night a few short weeks ago around 10:00 p.m. I was the one sounding the alarm, posting on our internet support group a message about my son.  For our children, and for the adults living with Vascular EDS, virtually all sports and activities are off-limits.  Because of the high-risk of injury, aneurysm, organ and arterial rupture that follows them their entire lives, very few athletic options are available.   But, in hopes of finding a way around that difficult reality, I’d signed him up for a community swim team that a few of his life-long buddies are on.  He’s always loved swimming and being able to do something he loved in a team environment was definitely a chance worth taking. 

After the first night’s practice he was understandably tired, but he was also excited and quick to tell me how much fun he’d had.  The coaches had already moved him up to the intermediate group where most of his friends were placed and I could hardly wait to share the good news with my friends online. 

But before I’d had a chance to share my excitement, the moment was gone. After the second night of practice, reality crept back in and like the stupor following a night of drunkenness, I felt sickened by the dizzying truth of what his body can actually handle. My son was in pain; his jaw was hurting and difficult to open.  His shoulder, which has become increasingly loose-jointed over the last year, was in more pain than he’d had so far.  He came to me quietly when no one was around and this normally very active boy, who just one night before was bursting with joy and anticipation at the possibility of a team sport he could enjoy with his friends, told me with tear-filled eyes he didn’t want to go back – he couldn’t go back – because the pain was too much. 

By the time he finished telling me about it, I learned it was more than just his jaw and shoulder; it was his knees, his ankles – all of which are dependent on the one ingredient his body cannot give him — collagen.  Aside from his vascular system, his joints will pay the highest price for this deficiency; possibly bringing on arthritis as early as adolescence – as early as now. 

Once the kids were in bed, I grabbed my laptop and retreated to my bedroom – ignoring all other responsibilities for the night.  I sat alone on my bed and went looking for what has now become my lifeline; a close-knit group of people formed over time with others just like me – desperate for guidance and understanding. 

I typed at a furious pace; ignoring the tears of anger running down my cheeks. “How dare this damn disease take something else from him!” was running across the screen of my mind like one of those annoying crawls on T.V.  How was I supposed to handle this?  Should I take him to the doctor?  Did he need to go to the dentist?  Or, was this just “normal” muscle pain from a new activity?  Would taking him to a doctor or dentist even do any good?  What were the odds they would even be able to give me good advice?  What experience could they possibly draw from to help me sort this out?  The stream of words became a flood of anger, confusion, and pure, raw emotion – and without worrying how any of it may have “sounded”, my rational mind was no match for my mother’s heart that was breaking – again – for the losses my son has endured, and will endure, throughout his life.   

Having thoroughly emptied myself into this cry for help, I sat back on my pillows and took a long, deep breath.  Still utterly confused, and now emotionally drained, I could relax just a little knowing I’d sent up my flare; knowing someone would see it, and knowing help would soon come.  

Within the hour I received my first response from a mother in Canada who’d lost her son seven years ago at the age of 13.  He had experienced chronic jaw pain off and on in the weeks before he died from a thoracic aortic aneurysm.  As has been the case in many such messages, regret was the tone of her voice; telling me now what she had intended to do but never got the chance.  She had been concerned about his jaw; she’d planned to take him to the doctor, but then one night it was over.  At home in his bedroom with her son in her arms, she held him as he closed his eyes and slipped away from her.  Her pain was as evident now as it surely must have been that night when the unthinkable settled in on her and her family in the most merciless way. 

She was quick to remind me it didn’t mean that’s what my son was dealing with, and didn’t want to frighten me; but she also felt compelled to let me know the possibility was out there and until I’d gotten her email, I’d never known that jaw pain might be a symptom of something serious.

By the next afternoon and throughout the week, I had more replies than I could keep up with.  Mothers and fathers, husbands and wives, and people who are living with VEDS offered their words of encouragement, caution, and something to lean on while I struggled to find my way through this.

In spite of the distances that separate us, it was as though this Council had convened on a moment’s notice someone’s living room or around a dining room table to figure out this problem as a team.  As the week wore on, my anxieties began to ease with each new message I received.  I read each word gratefully– keenly aware of the price at which their experience had come. Bought with the pain in their own lives and the lives of those they love, paid for with grief and regret, theirs are the words I cannot ignore.  Theirs are the words I must not ignore.

With all the frustrations and disappointments that go along with raising a child with a rare disease, having this group has meant the difference in my level of sanity more times than I can remember.  Whether or not I ever lay eyes on them or find out what their voices sound like, I know without question they are with me.  In the doctor’s office, the emergency room, or in my own home facing another night racked with insomnia–at any hour of the day or night–I can ask for help and someone will be there.   I know I am no longer alone – and next to a cure . . . that’s the most imporant thing.

Click to VOTE for EDS TODAY

Click and VOTE for EDS Today to win $250k for research!

Great Opportunity!!

EDS Today is competing in the Chase Community Giving Challenge on FB to win up to $250,000 for research. 

We WERE in first place for the first five days, but have been bumped down to 5th – and could use your help moving back up. 

The first place charity at the end of the voting gets $250k; the groups in 2nd, 3rd, 4th, and 5th will each get $100k. Goups ranked below 5th place will get $25k. 

You can help us out and cast your vote by clicking on the picture.  You’ll get 20 votes to use in the competition, so look for others you’d like to help out.  After you’ve used the first five votes, you’ll get a “gift vote” and can use it to vote a 2nd time for EDS Today. 

Please share the link and information with as many people as you can.  The competition lasts until July 12th – winners will be announced on July 13th.  We need as much help as we can get generating some buzz and getting those votes coming in! 

Many thanks!

Debbie Vaughan

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7 Responses to “The Council of Mothers (and a few devoted dads)”

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Deb, you always touch my heart deeply with your powerful words…always causing me to shed some tears. Your such a gifted writer, who absolutely says it in the most beautiful, profound way! Love you!!!

Dear Debbie,

I read your post with a lot of empathy and a lot of pain. I feel for both you and little boy. I hope you both find some strength and comfort from these miniscule words of mine.
I was diagnosed with Joint-Hypermobility Syndrome (Beighton Score 7/9) just recently, and the doctors haven’t completed disregarded that it could be EDS. This diagnosis has suddenly put into perspective all the years of muscle aches and joint pain which were beginning to feel like I was imagining it. I remember trying to swim myself and coming home realising I couldn’t lift my arm because it was in horrible pain and was completely numb–it felt like…dead lead.
Know that you’re not alone.
Many gentle hugs for your little one, and a big bear hug for you and your family.
Feel free to email me, as long as my details (such as email and name) are not made public.

I read your post and it felt like I had wrote it my self. Recently I found out that both of my daughters (age 7 and 11) have EDS type III and they believe that I am the carrier. The girls are going for genetic testing to find out the extent of the disease thru the childrens hospital here in Columbus and I am going to my own rheumatoligist to start the process on my end. I have been really sick for a few years with unexplained pain and I have dislocations of most of my joints but the doctors just ignore that. So far my diagnosis has been chronic migraines and fibromyalgia. When the dostors told me that the girls had EDS and they believed I did as well I went thru so many emotions. I was releived that the doctors finally found out what was wrong with me and that everything really fit with in EDS, but then when I thought about the kids it broke my heart that they would have to suffer thru everything that I had since I was a little kid, with no cure. One of the reasons we were seeking out the Doctors is that my youngest daughter can not walk but a little ways and then she is tired or play. She can not walk thru walmart without having to be in the cart half way thru the store and that is just on a short trip. Everything exahsts her and she is always complaining of pain and headaches. I thought she might be imitating me but why would a 7 year old child do that when she could play or explore things. My 11 year old has her knees go out every time she runs or does any kind of sports or she twists her ankles. (That reminds me alot of myself as a child as well.) She is so angry that she is going to have to give up sports because of the illness and because of her joints.. She just wants to be normal. I am just so scared for my children… I just started trying to find others with EDS and there really are not that many that I can find or maybe I am not looking in the right places. But when I found your website and read what you had wrote it is nice to here that there are at least a few people that were in the same boat.

I am so sorry to hear of your daughters’ diagnoses. What you’re feeling right now as a parent is by far the worst part of it. I don’t know of any of my EDS friends who wouldn’t trade places with their children in an instant if they could. I’ll be happy to recommend some online groups so you can find the support you’re looking for; just email me privately and I’ll send you some info.

I’m concerned that your doctors are using the old system of classification in the diagnosis. In 1997, the categories were re-organized to simply the classification and hopefully lead to more accurate diagnoses and treatment of patients with all forms of EDS. The type your daughters have been diagnosed with (Type III) is now called Hypermobile Type or HEDS. Try using those names for search terms and you will probably have more luck. There is also a wealth of more current information available that you’ll want to make sure you get into your doctors’ hands.

Most importantly, despite how it feels right now, I assure you you’re not alone. There are literally hundreds of families online now who are connecting to support one another and to fight for the futures of their children. There may even be some who are nearer to you geographically than you would have imagined. HEDS is the most common type of Ehlers-Danlos Syndrome, so the chances of meeting other families are good if you’re interested.

Please keep in touch,

Debbie

I have stumbled upon your blog while trying to find information on my daughter’s new dx Classic EDS. Thank you for your honesty. I am quite angry that my daughter is fighting yet another “invisible, incurable” disease that I cannot take from her. She is also a Type 1 Diabetic. They also think she may have dysautonamia (spelling?)
Any idea of where I should look next? We have told our family about this dx but it doesn’t appear they know how to support her or us on this new path. It looks as if we are left alone trying to piece it all together again. I am so tired and confused. I don’t know what is a good website or organization etc. Thank you for letting me vent.

I most definitely have some ideas of where you should look next! (Thanks for writing, by the way). There are a few groups that will turn up if you do a search on line which I’m sure you’ve already done. The only one I can recommend with a clear conscience is E.D.S. Network C.A.R.E.S.; they are a relatively young group but have done more in the last 2 1/2 years for relevant research and public awareness than any group before them. What makes them different is the fact that they are virtually ALL volunteers; and they (we) are either living with the disease themselves or have a family member who is. The majority of them are parents of children with different forms of EDS, or parents who’ve lost children and as you know from your own experience, there is NO more devoted advocate than a mother or father of a sick child. And – as I mentioned in the article you commented on – several of them have lost their children, and had the opportunity to walk away and be done with this whole ordeal, but have instead taken their grief and turned it into an unstoppable commitment to fight even harder.

You can find their website at:

Make sure as you are doing your “homework” online that you check the dates and sources of information you read. Anything older than a couple of years – literally – may be too old and not reflective of newer research. Many people with Classical EDS have vascular cross-over symptoms (other types do as well) and the research is truly changing month by month right now.

There are also MANY families/patients dealing with multiple disorders such as dysautonomia, so you’ll feel a lot less lonely before long. I’m sad to say that your family will probably never “get it”. I hope I’m wrong, but it’s a common occurrence in a disease that leaves no outwardly visible mark, and even in families where lives have been lost, the denial and lack of desire to understand is surprisingly strong. The good news is . . . . you can make room for a new family who does understand and who has done this all before. Pls email me at ddvaughan@gmail.com and I’ll send you some more info on some online groups.

Meanwhile, hang in there – you won’t be alone much longer!

Stay in touch,

Debbie Vaughan

Thank you so much. No matter what path my family has been put on, I know there are wonderful parents who “have been there, done that” and are wonderful at sharing information. Thank you so much.

I sent you an email and I am taking a better look at the EDS Network CARES now.


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