Thursday 3 March 2011


To  post, or not to post?  That is the question.  It's hard some days to decide what to write about.  How much of yourself do you share?  Are there topics that simply shouldn't be put out there?  I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics.  Not that I'd probably read it.  It would just end up sitting on the table collecting dust and coffee cup stains.  Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable.  Blogging as therapy.  I think it works, and it's way cheaper than the regular types.  So often we hide what we think is shameful, or too personal.  I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room.  Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating.  It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters.  And finally those mountains can be seen for the molehills they truly are.  So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears.  Over the last few years I've had new ones crop up.  Ones I never thought I'd have to confront.  I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest.  Stupid I know.  My practical science background laughs derisively at my foolish illogical side.  But the reality is that voiced or unvoiced they sometimes come true.   Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind.  Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses.  I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children. 

As a mother you have an instinctive drive to protect your children from harm.  Every tear, every disappointment, every hurt, rips out your heart.  Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve.  And that is the path I am now treading.  Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems.  Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly.  Every time he has felt nauseous.  Every time he has run to the loo.  Every time he looked pale.  Every time I have seen him limping along.  I have seen a little still from my own teenage movie.  And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager.  The same food intolerances, which are now confirmed by recent tests.  Similarly, I've know that his poor little joints are like my own.  I know the pain he is feeling only to well.  Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong.  That it was indeed "all in my head".  But it was not to be.   And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA.  And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down.  But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible.  I was totally unprepared.  Those words said out loud about my child, were like a clarion bell.  It was real.  More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault.  As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children.  But it doesn't stop the feelings of guilt, rational or not.  In my good moments I know the truth, but in those other times........ 

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues.  What it means physically, socially, and emotionally.  And I think in many ways it makes it better, and conversely, far far worse.  It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now.  To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea.  I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening.  I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control.  I  have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough.  Even the discovery of the empty coffee container feels like a deliberate personal attack.  It's my irrational side in all it's glory. 

I want to punch something.  To yell and scream.  Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the world to hilarity and beauty.  But I'm a mum, and mums don't have that luxury.  We have to hold our shit together.  Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet.  I'm going to put that one in a box, tie it up in chains, and bury it deep down.  I'm not ready to tread that path.  Though I know that if the time comes, I will.  But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden. 

I know that logically, at the least, I can now find him the help he needs.  I can give him the gift of believing him when he says he is in pain.  I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike.  I know the power of a diagnosis.  I am glad that it gives us a starting point from which to tackle these issues.  But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child.  I want to have the magic wand I had when he was little.  Where I could make the monsters disappear with my miraculous mummy super powers.  Where I could kiss his bumps and scratches better.  Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world. 

So I will take a breath.  I will dry my tears and patch my heart.  I will put on my practical hat.  I will book the appointments.  I will take the steps.  I will don my armor and fight for him.  I will help him find the path to acceptance of his physical limitations.  I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart.  I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this.  But at this stage I am still processing.



  1. I don't have children, so I can't even pretend to understand those fears... however, your children are so blessed beyond measure that they know NOW about their health and might be able to mitigate damage later on in life, and blessed to have such a caring mother who won't add to their problems by dismissing or ignoring symptoms and can teach them the coping methods you have already learned.

    I hope you're able to get a respite with the tequila under the covers... and that it will help strengthen you for the appointments and all of the other practical actions.

  2. I understand exactly how you feel. My issues have not been diagnosed as genetic, but I think there is something genetic involved. My daughter started complaining of back pain when she was 13 or so. Then after a car accident, she ended up more injured than anyone else in the car in her lower back area. The same area my issues started out in back when I was 13. My son, who is 14, has started complaining about low back pain as well. The idea that I have passed along to them some kind of genetic instability or weakness of the lower back which will eventually result in them living with severe pain for the rest of their lives just rips me apart.
    Thanks to the car accident, my daughter now has 2 failed surgeries and chronic pain and chronic sciatica. She is 22 years old and already disabled by these injuries. Every time she is stuck in bed, in crisis, or limping around the house just hurts me so deeply I can't even describe it.
    Like you I hold on to the fact that I did not choose to pass these things on to my children. I had no way of knowing and still don't. Some days that thought helps me, other days it doesn't.
    Be there for your son and let him know that you do understand and are there for him. It helps me sometimes when my understanding makes her feel better emotionally, it eases some of the guilt.

  3. I'm so sorry Michelle. The pain of finding out our children have a chronic illness is so painful. My daughter was diagnosed with type 1 diabetes way before my POTS diagnosis. The doctors all asked if there was any history of autoimmune disease in my family and I said "no". They were baffled. Now I know I was the one to pass down the crappy autoimmune gene, I feel guilty too. When she was first diagnosed I would have taken the diabetes for her in a heartbeat, but she has become such an amazing woman because of her struggles and we have become so close working through dr. appointments, hospital visits and just plain old frustration. We are each others biggest cheerleaders. I know how difficult this is, but he is so fortunate to have a mom who gets it, and will be his champion when he needs one.

  4. I am so sorry Michelle. I just cannot imagine what that is like. Hard enough dealing with your own health issues let alone having to comprehend your boys having the same.

    Wishing you much strength as you face this.

  5. dont be mad with yourself. you didnt know what you had, so you couldnt possibly realise what was to happen. at least your son wont have to go through life thinking hes a crazy. you will get him the best help. you know what to do. please take care. xxxx

  6. *hugs*

    But you know what's awesome? Medical advances. And they happen all the time. It won't necessarily be the same for them, doll. And they have you to help them through it.

  7. I'm sorry man, that's horrible. He's so young that maybe there'll be some medical breakthrough coming soon that will be able to halt or help it in him. And maybe the experience you've had will be highly beneficial to your son and help him suffer less than you have? There's really nothing I can say as I know I don't understand all this like you do and I'm sounding like an idiot. But stay strong. And here's hoping he and your eldest do too.

  8. You have stepped into my brain and written far more eloquently than I could my own thoughts. I keep telling my kids that all the docs say that if you have it when you're young chances are good that you'll grow out of it (which they do.) But the reality that I don't speak is that we all know that we know more about this stuff than the docs. My daughter is going out for track this year - her first sport in her 15 years. She has decided to push through the pain - I am so proud of her but so terrified . . . of ridicule, disappointment with herself, of the anger and sorrow that could result from the inability to keep up with her classmates. You paragraph about mummy superpowers brought me to tears (which is bad since I'm at work) - you are so on the money. So I will encourage her to do her best and be there for her if she should get discouraged that her athletic best isn't up to that of her friends because of her joint pain. I wish that I had the magic words to bring joy and everlasting peace to all of us. The best that I can offer is an email to vent to if the pain or sorrow becomes unbearable because, in this regard, I am *exactly* where you are. I will tell you all the things that you already know in your heart to be true - it isn't your fault, you are a more phenomenal mom than 90% of the moms out there, etc. I do not know why things happen the way that they do but I know that in the next life there will be no pain or sickness so maybe it is all to help us appreciate that all the more. Thanks so much for an incredible and therapeutic blog :)

  9. I know completely this that you write. Our genetic pool means that one son has inherited the form of epilepsy that his father has. I remember a few years ago now how guilty I felt when I realised that the myoclonic jerks *the beginning of me noticing that things were to progress. Meant that all the lack of concentration in class and teacher's noting short term memory issues were in fact thousands of tiny petit mals that me his mother had not noticed. This son of mine bears no resentment at all. We fought hard for appropriate medication and proper diagnosis. The syndrome which would otherwise have been treated with innapropriate medication.

    My daughter inherited Ehlers Danlos from me. I feel as you do. Sometimes she is angry with me. I can't bear her pain, for her because I know how bad it is. Her stolen dreams. Its hard for me to write about this because my emotions are so mixed up. Sometimes I have wondered about asking for counselling to help me deal with the anger? But don't ask worried that it will undo a lot that has been done in the recognition of 'our' condition thinking that once again I will return to a place where doctors think oh she is depressed etc. rather than treat the condition.

    Neither my OH or I knew when we conceived these children that they would inherit our conditions.

    I don't think I have ever been as angry when funding was refused for daughter to go an adolescent pain management course. I know it was expensive but the arrogance in the refusal. I wonder had she had a well known condition RA for example would the outcome have been different.

    I guess I don't post a lot because I am afraid that should I start with what really goes on in my mind and life sometimes.... well, my guess is you know my fear.

    I worry that if I put too much about my experience of EDS some younger person will come along and read only negative unhelpful crap. I guess I just worry.

    What I worry about most is my children but I do know that the one thing each of us can do my husband with my son with regards to epilepsy and me with my daughter with EDS. Is understand. Understanding is a gift we can give as unconditionally as our love. Along with this we teach them implicity that never ever giving up and that no matter how hard stuff is there is always some small joy to find.

    I understand how crap this genetic stuff is and Michelle thank you for talking about it.

    I am not sure how much of my comment made any sense but I do know that if your child has the same condition. It is not your fault. You are best placed to be there for him when he needs you and also to know when he needs you in the background allowing him the freedom to find out for himself (s) the right path to follow.

    Michelle, I understand.

  10. I am grateful that you shared this...I am wrestling with the same fear.

  11. Michelle,

    I am sorry you are going through so many emotions as you are concerned about your son's health situation.

    Your best friend made a good point that it's not like you decided to pass anything onto your children.

    Please be gentle with yourself during the "processing" phase.


  12. I cannot even imagine what you are going through. I only know that you could not harm anyone on purpose because it is not in your nature to do so. You did not know, the medical professionals you saw did not know and even know they do not know all that can be passed down. You are a loving mother. Forgive yourself as much as you forgive others.



All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.