The journey: the early signs

Detail of L'écolière - Oil on Canvas Her last year in school

Detail of L’écolière – Oil on Canvas
Her last year in school


There is no way I will let her see the light by having surgery. That’s because I have to make sure she is fine, that everything is under control. This time around, it will not be days before they let me hold my child. I will do all that I can. I refuse to focus on the possible outcome of second trimester bleeding, pre eclampsia, and pre term labor. I am going to get through it all. I get ready. I read all that I can to be fully informed so that when the time comes I have the knowledge to either order and or decide of each and every intervention. I stay in bed 24 hours a day and lie on my left side so that I can keep the blood pressure under control, drink tons of water to help my condition, count her movements every hour as required, listen to and follow each and every recommendation issued, and spend the last 20 weeks patiently waiting – without any form of complaint – for it to be over so that I can hold her in my arms in the moments that follow her first breath.

And it works. She comes on her due date and I hold her soon after her scream tears through the air around us.

But there are signs.  She looks at me and stops crying immediately. We bond but she is older and smarter and only the two of us know at that very moment that things are different. Brilliant conception. I notice. One cheek is smaller and her feet are oh so long – not quite right. As they take her from me, she screams like there is no tomorrow. Hypersensitive. I know it. Someone notices and comments but it stays at that. Nothing.

They keep her for hours – the test results are off they say. And then when they bring her back she can’t stop crying. I plead. Please let me sleep. But then they say she wants my arms for the night. So I sit up, hold her, and I close my eyes. She is happy and that’s how we spend our first night.

Two weeks later she is beautiful. Everyone loves to look at her thick curly black hair, pale skin, and large blue eyes. Strangers stop to observe her. They call her Snow White. But something is different about Snow White, she can’t tolerate light, won’t sleep in my arms, her pupils are fully dilated – even when there is little light, and she can’t seem to stand anything. Hypersensitive.

Her teeth emerge and they cut like knives. I find her standing in her crib, blood splattered all over in a pattern similar to that of a crime scene often depicted on TV. Her little hands holding the rail, blood dripping from her mouth, she smiles. I clean her gently and love her. My child.

She is quiet and happy but not expressive like other babies. At eight months she is solitary, crawls a bit, aligns toys on a lower shelf where they belong. Does this make sense? She is observant – always. She speaks at a very young age. By nine months, she says “will fall down”. I’m amazed, how can that be possible?

She’s sitting on a slay with her sister and two other little friends. The neighbors. I pull them in soft snow. They are all happy. The slay tips, the children gently roll onto their sides, face forward in the soft snow. I pick her up and again, her chin is covered in blood. The other kids are all fine, smiling and laughing – my neighbor tells me something is wrong with my baby.

And it happens again and again. I speak to the doctor. I am worried. How can she cut herself inside her mouth with her own teeth – something is wrong. Lets let the teeth grow he says and then we’ll see.

Things don’t get better. Shes  is not yet two and is referred to a dentist at the Children’s hospital. He examines her, she screams and screams. He says her upper jaw is much smaller on one slide and that her lower jaw is hyper mobile. He says it’s a terrible genetic disorder and that I should have consulted beforehand. How could I have left her like so for so long he asks. I try to explain but he doesn’t listen. He is furious. She is referred to facial surgery and genetics. I cry and meet with the pediatrician. I am worried sick. I don’t understand. He says it could be Ehlers-Danlos.

The leading geneticist calls it “crying baby face syndrome” or asymmetric crying face syndrome. Another seems to think she has hypermobility issues, the leader, without even touching her says it’s all good. They are muted – all four of them. She’s to be reassessed in a year but that never happens. She is forgotten.

At age three, she’s enrolled at the university daycare where I’m a student. She refuses to participate during gym class. They sit her in a corner and make her wait as a form of punishment. They call her brilliant but don’t understand why she refuses any form of exercise.

I pull her out of the amazingly organized and stimulating facility to put her in a family owned daycare. Again, she refuses to play at the park. Sits under a tree in the shade “all alone” and waits to go back to the house. The caregiver tells me something is wrong with my daughter. She says “she is not a normal child”. I am devastated. I have her evaluated and they tell me my daughter’s cognitive abilities are way up there – there is nothing to worry about they say.

Then the witch from the daycare pulls the last straw – she brags about how she forced my daughter to walk 500 meters although she was huffing and puffing. I know my daughter can’t walk like that – I don’t grasp that it’s unusual. It breaks my heart. I can still to this day see her in her red coat and red boots dragging her feet. That was the last of it. No more daycare and she attends class with me. University professors are amazed as she sits there listening and drawing, waiting for the three-hour class to be over. She is part of the adult world at four years of age.

By age five, a few months into kindergarten, she complains of not being able to carry her school bag. She cries in the morning. She is so so tired. An X-ray of her spine reveals a normal spine. The back pain is related to the ligaments says the radiologist. By November she has full blown pneumonia. She is so sick she misses two months of school.

She struggles until she is nine and then by age 10, she can no longer attend school. Still they don’t listen – they say she’s spoiled and oppositional. Her treating psychiatrist says she needs violence.

By 12, she is so exhausted she tries to take her life.

The following years are hell. We send her to foster care because I am responsible for her lack of school attendance. She is then hospitalized for five months in a day hospital for teen suffering from anxiety and at risk of suicide. We force her to walk for hours in the hot blazing sun. I call it abuse, they say it’s a mistake.

Then I gain courage and leave the province where she was born and so ill-treated – anything to save her.

By 17 she finally gets her diagnosis of a connective tissue disorder causing severe orthostatic intolerance with associated intracranial hypotension. Now she can barely walk ten meters on a good day. She needs a wheel chair, and a support handle in the bath tub. She needs me to help her bathe. She is hoping for her life back but her journey will take perseverance; the neurologist says it will take years of rehabilitation since she has been left as such for way too long.

If only they had listened to the very early signs. Just once.

To read about other journeys go to :


25 thoughts on “The journey: the early signs

  1. Pingback: Journey | Code Name Incog

    • Sometimes I think there is a reason for everything. And this was a hard price to pay. Perhaps we’ll become a voice for other children suffering from the same illness. And if we do, a lot of peace will come with that. Thank you for your beautiful and kind words.

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  4. Oh, Sheep–what a heartbreaking yet wonderfully written story. If only they had listened. Chronic illness comes in whispers I believe. I am so unlike your daughter EDS-wise (if still EDS), but there were signs as a child and large signs as an adult a few years before the world turned upside-down. It’s not just a failure of the body; it’s a failure of the medical system. As you know, I so admire you for being the mother your are. I know your daughter would not be where she is if not for you. Don’t ever blame yourself for the past…

    I presume that is one of your oils? I understand the French–beautiful. Oils are my favorite.
    A ❤

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  6. Yes, that’s the second painting I did and it’s the piece I’m the most critical off because I had such a hard time with skin values. I was sitting in studio at the time and the teacher was a very good artist but I never learned how to prepare my colors and that made it really difficult. I’m still learning. I’m glad you like it and named in French because I thought the word in English was sort of ordinary and I didn’t know what else to call it. Sometimes, the title is there already anyway. Thank you.

    And yes, it is a sad story. One I really really needed to write about because when I think of it now it actually sounds like abuse. And I remember when I was desperate because of the suicide attempts and the system that wouldn’t listen how I thought it was so unfair that a child with another illness was being taken care of while my daughter was essentially abused. I remember her being all read and sweaty and not being able to stand the sun. How in the hell did they not see that??? She didn’t even have to say anything it was so obvious.

    And yes, those are the stories of the broken system. And I want it to stop so badly. I want to know what we can do when doctors are so arrogant. They shouldn’t have a license to practice if they can’t handle it.

    I’d be very interested in hearing about your beginning if you ever care to share. 🙂

    • Thanks for the reply. I wish there were a way to fix it all, as well. If I could, you know that I would leave the US for good–and not for Canada!

      My story is very different as aside from a crazy GI tract that was presumed to be from my father’s side as they have the worst GI issues ever (no EDS), I literally just got sick one day. My symptom was really just level 100 pain (and massive insomnia). I call that sick as I was incapacitated and still am. Really no story to tell. It’s as if everything flipped upside-down one day in ’01 and I didn’t get the skin issues, etc. until 3 or 4 yrs ago. When I finally got the Dx of fibromyalgia (now wrong), it made sense then.

      Wonderful post, again (and the painting–don’t be so hard on yourself!)
      A 🙂

      • Thank you A.! This vimeo video (love saying that!) is so amazing. Sent it to my doc, whom I saw with Gen this morning, and she said she hurried to save it so she could listen to it on vacation. She is so amazing. So part of the treatment in there was prescribed to her by the wonderful neurologist from Montreal. Yeah!!!! She is starting today with salt tablets and a vasopressor. For the rest, my doctor will get back to me when she comes back. Because of the video I went shopping for a bed for gen and took the first steps for the purchase of a wheelchair. It turns out that both are covered by my insurance. So this is thanks to you and that medical conference you recommended!!! I am so happy – and so is gen! 😉

      • Oh good! There are more videos from that conference that are worth watching–I think you scroll to the right. Lots of stuff I didn’t watch as you don’t really know what anything is unless you open it! That doc mentioned support hose helping those with OI, etc. and that everyone is turned off, but then glad they bought them. Not sure if you caught that. I think they make some today that are a tad more attractive. Brings the blood back up, nonetheless.

        Well, if I come across anything else, I’ll post in on here. New protocol sounds good (my blood shows low sodium/potassium from restricted diet/too much water I presume), but since I don’t have issues, we just leave it alone. Really glad you found your little medical team for now…
        A 🙂

      • Mmmmm not sure the low sodium potassium should actually be left alone. It was like that for Gen for the longest time… I just hope nothing else adds up for you. It’s hard because there is always a reason for that and it requires so much effort to determine what the best thing to do is.

        We started the vasoconstrictor and the salt pills yesterday and she is NOT dragging her feet and have found her up and STANDING a few times talking to her sister. She says she doesn’t want to discuss it because of the stress in her chest. We obviously need to give her clonidine and perhaps a beta blocker (as suggested and recommend in the video) but my doctor is scared of doing that.

        I’m feeling somewhat relieved – confused, because it’s like the wind is changing – but also scared or sad, like it’s all coming down now. I think I was being very tough because I was looking at it from a treatment and medical perspective – she was like an object – but now, I’m feeling for her and the whole situation.

        Thank you A for being there for us. I just hope I can do something as grand for you someday. ox

      • Pas de problème (yes, the accent code worked!).

        The docs here don’t know about EDS and the 1 time I saw a cardio (who cancelled on me AGAIN today–I have some minor valve issues), I asked about a way to increase salt (lower levels than potassium) due to my limited diet and he said it wasn’t necessary as my BP wasn’t that low or symptomatic. I really do use an elliptical machine and treadmill w/o issues aside from some pain! Anyway, the time I saw the cardio, I actually got 120/70 as I had to drive myself in broad daylight–massive anxiety!! Normally, I’m 80s/60s and let him know, but he still wasn’t concerned as I don’t pass out or get dizzy, unless I’m crouching and then stand up, which I never do due to my knees. Must say I’m not that concerned unless I get symptomatic.

        I’m so glad that Gen is slowly getting some improvement. I think perhaps you’re worried because you’ve lost complete faith in doctors (like I have) and so how can you trust one and his protocol? D mentioned something like that to me on my post on my mother–If I could never trust my family to take care of me, how can I trust doctors? I never thought about that. I believe it takes some reprocessing, especially if you’ve finally seen some improvement for once. When I thought I had fibro, I had a great specialist here (he left, of course) and I had total trust in him, even though he couldn’t fix me. I really looked more like a fibro patient, so I don’t even blame him for not picking up on the EDS then. NOW, I look like a Type II. The doctor from Montreal sounds great from what you described and as OI is within his scope of practice and he’s familiar w/CTD, then possibly you have to just trust that he really does know what he’s doing and that it will help Gen. This is why I wish I could see one of those docs back East as I WOULD trust them–this is all they do! I don’t know that they could get my pain under control, but I could finally take my damn Dr. hat off for once. Hope that made sense! Maybe you just have to take the Dr. hat off and presume le médecin knows what he’s doing.

        Oh, goodie. I get to practice my crappy French, as long as the accent codes keep working. I know you can easily add them with a Mac, but they never work 100% w/a PC.

        Hang in there and I’m always here! I think you’ll be OK. One day at a time. The improvement you see in Gen each day should ease your concerns, as well.
        A ❤

      • Morning A.
        I’m off to school and wanted to answer this email. Working tomorrow as well but will try to get on tonight if I have a minute. Hope you have a good day. It’s raining and foggy here…. better to be working but Gen seems to have a little side-effect and am a little worried… Catch you later!

      • About low blood pressure, I still think it’s not good and shouldn’t be left at that given your current issues. Sometimes it catches up later (Gen is the proof of that) and that’s not a good outcome.

        It’s been a week since she started taking the new medication and it helps a lot. I say a lot because she’s more able to sit up – and today, I noticed she didn’t have to lie down after her bath. She was actually standing! I’m not saying anything because her level of anxiety which seems to be getting a little better the last two days was way up there when we added the med. I think there was an excess of firing going on because of the new increase in blow flow (ANS issue). Maybe this doesn’t make sense, but then it does to me – and since the anxiety is physiological, well then I stick with my own opinion until i get a better one.

        Hope you’re doing OK. Will catch up later. I was thrown off by the whole thing – although things are going better. Odd eh?

      • OI can cause anxiety symptoms from what I’ve read. Food for thought. Glad the physical symptoms are already better! I just want my pain to go away–that’s what keeps me so disabled (aside from my vision now). I’d really like for someone to take my low BP more seriously (even if I don’t notice it), but they don’t even know what EDS is. That cardiologist I saw wasn’t any help and my echo got cancelled on me–think I mentioned. I got a call today that I have to be seen to go over the report (so they can make more money) but my Dr. isn’t at the location by me now, so I have to see someone else. Then, to add insult to injury, I just got a letter telling me they were sending me a bill for my no show last week for the echo! Omg. Really? They cancelled on me the morning of my appt. So, this is healthcare where I live! I’m so frustrated and tired of it. Why don’t the doctors in Maryland make EDS treatment protocols more accessible? It’s not like we can all just pick up and move there!
        Rant du jour…

      • On a first note, I really like how you use your French. It makes the word rant sound very distinguished. I think I’ll copy you on that!

        Now that there seems to be a little light coming in on our side, I find it totally shocking to read what you’re saying. It’s almost as though we didn’t go through that – except of course for being called to be charged for a missed appointment. The way it works here is that if you miss an appointment, they say they can refuse you the next time around. I’m not sure they can actually do that though. Once, Gen’s state was so bad that I asked if they could call me when the doc would be ready to see her and they refused, saying she could lie down in the waiting room on the seats – the waiting time was of two hours minimum. I didn’t feel she would want to do that given that she was 16 at the time and already so embarrassed by her own condition. Furthermore, her body is just sore all over, so it’s hard to see how she could have put up with the cracks between the seats. In the end, we missed the appointment because she really wasn’t well and they were giving no consideration whatsoever to her state. When I called for her next appointment, we were given a warning. I did however tell them I had advised she wasn’t well but it was almost as though it should have been done in writing.

        Now that Katie has put us in contact with the ILC foundation in Canada, there seems to be options for Gen. I would really hope for the same for you and there must be a way for doctors to communicate at a distance regarding your condition. This is all so frustrating and sad.

  7. I read this yesterday after you posted and I couldn’t comment. Sometimes I read a post that is so big I don’t know what to say. Everything I could write seemed so tiny, words so insignificant to what you have written here. But I should not let that concern quiet me. No. Instead I offer you the strangest sense of congratulations. A bittersweet congratulations? You knew, like a mother does, something was not right and you persevered. Despite being told over and over again all you have been told. Despite the dependence on deaf, dumb and blind professionals you perserved. Despite receiving not help but condemnation, you perserved. And now here you are, your daughter is diagnosed and she is more fragile than ever. You have a lot of ground to recover and rather than your work being over it is starting again. And to make this part of the journey, in your heart, as it sounds like you have done from the comments you have written, you must find peace regarding a most unfair process. It is important that both your daughter and you recover. I wish for a good prognosis. I know you can both do the work as you as everything that has lead you to this moment has primed for it. Keep writing. Keep speaking. Keep spreading the word. May your voice of advocacy, of education contribute to the eventual elimination of the ignorance that seems to surround connective tissue disorder.

    I anxiously await the next post…

    • Thank you Charlotte for your words. Wisdom grows with such experience. Something is changing in me and today I cried for the first time. Tears of sadness and hurt. Tears because this is a new journey – you are right, I am starting again and I am so scared. But this is also a new beginning. The words of “now” that come with the diagnosis sound so strange and twisted when I pronounce them. They feel wrong not because I’ve never said them but because now I know they are real – and it feels like I’m someone else talking. In this now I have to purchase a wheelchair and an adjustable bed for Gen. The man told me “Oh, no. That bed is for the elderly”. And I said “Yes, my daughter has the physical shape of a 75-year-old person.” It sounded so strange – because for the first time it was really true. I was free of “feeling crazy” because that is what I’ve been made to feel since she was born. It’s a new journey for us, but trust me, it will be a better one. One filled with respect and dignity. People are now saying “I’m so sorry…”. Isn’t that different?

  8. I call my French “Frenglish.” Lol! It’s like how I used Yiddish. I got as far as intermediate level or so (just studied it for the heck of it), but I had American teachers w/bad accents and even though it’s similar to Spanish, sometime it would throw me off as I’d mix the two languages! Then I ran out of classes, which is always the case in the US. I love school, but I really need to live somewhere to learn the language I think. I remember when I was in Quebec at age 20 and being able to read the signs due to my Spanish, but had no interest in French then. I really would love to learn more languages, but now I have the 1/2 blind problem and no money for classes. Boo hoo.

    I have NO clue what is wrong with this cardiology practice and SO wish I had gone to another one (there are a few by me) as I’ve been waiting since Nov. or so. Yeah, 3 cancellations and then charging me for a no show. I got up so early that day, too! Now I have an echo next week and an appt. to go over the report with a different doc 2 wks later. So, 2 more chances for them to cancel. Also, when I called to take care of all this today, I found out they didn’t bill my insurance! Ahhhhhh! Docs here are like insurance companies–they do whatever the want. My PM&R is so fed up with no shows he charges $300 if you miss an appt. or some crazy amount. I never have and just force myself to to to everything, but I have the massive pain from sitting and I know how hard it is. I have my eye doc again tomorrow and that’s a long wait (owww). Regardless, everyone should be given 1 free pass in my opinion. Maybe the cardio place can pay me for wasting my damn time?

    Speaking of, I saw my PM&R today (I see the nurse who I love–only nice thing in my life) and she is educating herself on EDS and will try to contact Johns Hopkins to see if they will work with physicians, at least. She knows more each time I see her, but is not a connective tissue disease specialist by any means (nor is the doc or anyone here). She knows I do all the research I can and I suggested changing one of my meds to another in the same family and that will be the 1st time in 6 yrs or so that I’ve changed my cocktail. It’s always been a disaster, but I’m about to lose it from the pain. I’m not holding out hope as I get massive side-effects from these drugs (TCAs) and am OK on the one I take on a teeny dose, but I can’t take the pain anymore. Will keep you posted. I’m going to start it Wed night and cut the pill up and pray it won’t give me the nasty side-effects (it will work–that I know). Norepinephrine reuptake inhibitors–they raise my pain threshold and are the only drugs that work on my pain. Fingers crossed as we’re out of options. Then I have the degenerating shoulder to deal with…

    So glad you and Katie connected! I knew she’d be a good resource for you and Gen. Yippee! 🙂

  9. Wow…I’m literally speechless. It makes me so mad that you and your daughter had to go through all of that instead of just having someone pay attention and realize something was off all those years ago. I’ve heard so many of the same heartbreaking stories, over and over again since living through my own, but this one is definitely one of the most haunting.
    I also tried to take my life after things became extremely difficult. I couldn’t take the pain anymore and the doctors were intent on treating me like I was making it all up or that I was just crazy. I couldn’t fathom going through another day of the same thing.
    On a lighter note, wonderful painting!! Wow!

    • Thank you Katie for sharing. My heart goes out to you and all those who had to put up with such cruelty. My heart also goes out to your mother because it is so difficult to see a child suffer in such a way there are no words big enough to describe what it does. In our case they didn’t think she would make it and I was silently praying that if she were to survive and be on dialysis for the rest of her life as they had predicted, that God take her and relieve her from her pain and suffering. I don’t know how we made it through that period but I know now that although it was crippling we got past that part of it. And that is a good thing because we need to put an end to the nonsense so that children and parents are treated as they should.

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