Saturday, 5 November 2011

Because I wasn't already feeling like a shit mother.


"Well at least you know who to blame", said the arsehole GP to my youngest after going through our (read my) genetic history. Because, apparently I passed on my shit genes on purpose. Because I knew that my faulty DNA was going to cause my children a life of pain. Because I'm a sadistic cow like that. Me and Joan Crawford, best buds in the Mummy Dearest club.

You know what's worse than watching your child in pain and being unable to make that pain go away? Knowing that you're the cause. It doesn't matter one iota that I never chose to pass my crap onto my kids. It doesn't matter that I had no clue about what was going on at the genetic level in my body when either of my kids were conceived. None of that matters.

I've known for a while now that I've passed my health issues onto my kids. I deal with it every day. I lay awake most nights beating myself up about it. Every time I see that little grimace of pain on one of their faces I grab out the mental whip for a good dose of self-flagellation. I sure as hell don't need some bastard with a stethoscope and the bedside manner of Charles Manson to rub salt in the wound.

Sitting, listening to a doctor or physio list off what is wrong with your child's body. Hearing words like "interesting", "special", "surgery", "I've never seen.....", is like being sucker punched again and again and again. Handfuls of referrals to specialists and for scans. A punch in the gut. Prescriptions for pain meds no little body should ever need. Another mental strip for my back.

All of this coming a day after him telling the school nurse not to ring me. Because he didn't want me to be stressed about trying to get to school as I'm unable to drive that far thanks to my own broken body.  Two sublaxed patellae at school and being wheeled to the bus in the school wheelchair, and he doesn't want to stress me. Needing to be carried by his brother up the stairs at home because he can't weight bare  and he's worried about me. Nothing can make that better. Nothing can assuage the guilt.

He shouldn't have to worry about anyone but himself. He should be able to know I'll always be there. I'll always come to get him. That I would slay the dragon and crawl over broken glass, to be with him. Not subjugate his own needs for mine.

And all I want to do is take away his pain. To give him back a childhood without pain and heartache.

But I can't.

So I put on the mask.

And I stuff down the guilt for later. When I can gorge upon it in the privacy of 3am.

I make hot chocolates in pirate mugs. And sit on the couch with him to watch re-runs of Myth Busters. I gather ice packs and crush up pain meds and mix them with honey to make them more bearable. I gather the pillows and make crap jokes. I hug him and tell him that I love him. That we'll get there. And, that it'll be okay.

And I hope that he believes me.

And maybe one day I'll believe it myself.

18 comments:

  1. oh, man! soooo many hugs. nobody needs that kind of guilt!

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  2. You are AMAZING and your kids not only love you to bits, but are so blessed to have you as a mom. Coming from one kid, me, who got crappy genes from her Daddy, I know he didn't know he was passing on a disease to me and I don't blame him on bit, I'm just thankful he is here with me and love him with all my heart. So you punch guilt in the throat. ...I'm cheering you on in your continual honesty that resonates with all of us. *hugs*
    Lauren-Lucille AKA- Lucy/The Celiac Diva

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  3. Michelle - this made me cry... because I'm just starting to discover what my boys have likely inherited from me. At some point I have to face the reality of seeing a geneticist and other specialists - I have to get to the bottom of what's going on with me, so that I know how to help them. And I'm scared... scared of more guilt than I'm already dealing with now. Thanks for at least letting me know I'm not the only one... At the moment, I'm really wishing Australia wasn't so far from Oregon... that darn Pacific Ocean - much too large...

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  4. Hey Michelle, God bless your soul. YOU are a good mother. I can tell from the purple feathers you affixed to our entries for your Dorothy shoes, from the fact that you let your great dane choose the winner, from the beautiful "second-hand" items that you find and restore with loving care, from the very making of the Dorothy shoes themselves. You don't write about all the things you do for your kids (aside from the pirate cups) or if you do I haven't caught it (sorry!) but I know that you use energy and spirit that you don't necessarily have to make them laugh, encourage them, make memories with them and make them feel more loved than, well, a lot of moms out there.

    Some moms (more than I ever imagined) have serious mental problems (recognized or not) that leave their kids feeling worthless, unloved and scarred for life, often to continue the circle of what really amounts to emotional abuse (and sometimes physical).

    I say this only because it is important to remember that you are there for them in the way that matter most - unconditional, undying love. And you throw in a heaping helping of fun and humor which is invaluable. And you are teaching them every day through the way you live that their illnesses or ailments are NOT who they are - that they can define themselves beyond any physical issues they may have. You are equipping them to be happy, successful, fulfilled adults with excellent coping skills. That should be the Nobel Prize of parenting.

    I've learned that every person on this planet is bearing their own cross, fighting their own battle. Many do not even know what it is that makes them so unhappy and therefore have no idea how to begin dealing with it. Your kids have the best teacher on how to fight what may be their toughest battle.

    I'm figuring that deep down you know all this but I just wanted to remind you. When a moron comes into your life and jabs a red-hot poker into a raw nerve it's easy to forget the incredible person that you are. I know you aren't looking for compliments but, dammit, here they are, so sue me ;) And if you think I don't know of whence I speak bc I've never met you, show this to your husband and see if he doesn't agree :)

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  5. I love you Michelle, one thing I do know is true is that all of the shit makes us stronger, better, deeper. It just sucks living through the long days and the fast years of it sometimes. Xoxo

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  6. That your kids are being that considerate of you--you've passed on a lot of wonderful genes, too! Depending on how much of character/temperament is genetic, anyway. Either that or "parenting: yer doin' it rite!"

    Under "mixed blessing" in the dictionary there ought to be a photo of my kid. We, his parents, passed our best and worst genes onto him. He got autism and asthma from his Aspie Dad. He got food allergies/reflux/IBS, low blood pressure, and anxiety/jumpiness from me. Yet he got the best of each intellect--his spelling and grammar skills exceeded his Dad's by age 5, his math skills exceeded mine at the same age. (Therefore he has decided that he's smarter than either one of us.)

    The Autism makes it difficult for him to develop empathy for others--he could learn a lot from your kids!!

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  7. Oh, Sweets. You have me in tears.

    I tell you what. We all pass on shit to our kids. Some things are just more measureable.

    Big hug. A. xxx

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  8. That Sucks with a capital S.

    Your kid sounds amazing. What a sweet, thoughtful little person he is. You passed that onto him too, don't forget.

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  9. I haven't read the other comments not because I am not interested but I just haven't the spoons. Apart from dear dear kim's above.

    Ok, I share this guilt with you. I have ehlers danlos hypermobility type (formerly k/a Type III) which my daughter inherited. When she was conceived I had no idea that any of my problems were genetic. I was not diagnosed.

    My son has epilepsy, a form inherited from his father. Who when he was conceived we had absolutely no idea that it was genetic.

    My daughter is 21 and your words once again are a mirror image of my private guilt on passing on this cruel cruel condition. I watch her pain, I 'feel' her pain. There are those out there that choose not to have children when they know they have a genetic condition that is their perogative and I respect each individuals personal decisions. I didn't know and neither did you.

    So I guess some may ask had you know would you have chosen not to have these beautiful human beings. To save them the pain? If you ask them and I have talked at length on this with my daughter she actually gets really annoyed. Saying that despite the 'shittiness' of EDS and associated conditions, she would never had had our love, never have known first hand how to come out fighting, learning from me. She would never have had the love of life, the opportunities, the whole deal life itself brings. And that I should bloody well stop feeling guilty. Now this is easier said than done frankly as you and I know. Because no it is not fair that they are in pain, not fair on any level and no mother wants any of their children to be in pain. Sometimes, yes when she is angry, she will yell at me, its your bloody fault if it wasn't for you I wouldn't be in bleep &*&^%$%^^& agony and that is true. She is always sorry and it always makes me cry my *&^%$$^^* eyes out. But she says because of this commonality, our condition, we can laugh together at the bizarre situations and odd coping tactics we share for it all. We have pj days, when basically we allow ourselves to moan away about it all, the crapness of it all. Not every day because that would be self indulgent. She says it has strengthed our relationship and without the EDS we would not be so close, she wouldn't be so empathetic towards those who may be unhappy, in pain etc. She says even when she shouts and blames me, she doesn't really blame me, she is just angry at the condition and takes it out on me. But she says what would make her angrier, which is weird as she says because she wouldn't be here to be angry, was if I had chosen not to have her to deny her her life, even if the EDS and all that comes with it is crap. Because as she says she has life. At only 21 I am not sure she fully understands yet the guilt I do feel, it is only natural, but it is not your fault or mine. Its a bit like blaming ones great great grandmother or something. Its all futile, mispent energy all that guilt. Saying all this I know doesn't make it go away but you are not alone. Don't ever ever forget though that you have given them the gift of life.

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  10. Ok broke the rules and have to post twice due to word count thingy but haven't finished what I was saying, sorry Michelle, its just this guilt thing is a big big subject and you know me I can't hold back.
    ..... so here is the rest of my ranty comment....

    Just accidentally scrolled up and saw the comment that said, we all pass on our shit to our kids, some of it is immeasurable! Just love that comment, love it.

    My son with epilepsy is different to my daughter, he is like his dad, just a factual type of guy. At nineteen when daughter is yelling as she is a drama queen so does quite a lot of yelling, he gets cross with her when she on occassion blames me for it all. Really really cross. She deserves it to because sometimes just sometimes she does use it as a stick to beat me with when actually she is trying to change the subject, from her overdraft, or spending on clothes, or staying out late just a small example, he says she just throws that shit in to muddy the waters.

    My husband doesn't get the guilt thing at all, well he is a bloke! He just says, well its not like one can help ones genes or anything. Son has never never thrown the epilepsy thing in his face ever to put him on a guilt trip, even if he was on one in the first place.

    So please please even though I know you will continue to do so, stop beating yourself up over it. Guilt just eats away at ones soul and that is not good for your health, emotional wellbeing and all the rest. I know you know that. If I wrote about it and the pain of watching ones child in pain I know you would say the same to me.

    A doctor years ago told my husband before I met him that all men with epilepsy should have the snip. What an ignorant little shite he was, apart from being incredibly rude the majority of epilepsy syndromes are not genetic!

    Its harsh when doctors say stupid uncaring things that haunt ones thoughts sometimes for years. Little realising the impact throwaway comments such as you describe actually have.

    I can't change the reality for you but I can hold your virtual hand through it. Your son is thoughtful, brave, kind and yes you are right its not fair that he endure such pain but it is not your fault, NOT your fault.

    And yes, I hear you too. You speak for many.
    Take care my friend across the world, you are a very very special person.
    xoxoxoxoxo

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  11. Thank you so much to everyone for your lovely comments. Reading them all I've been sobbing like a mad woman, but only in the good way. Most of all I wish no one else was dealing with this same issue. I think in the cold light of day I'll find my equilibrium again but as someone else pointed out, comments like these are the emotional equivalent of having a red hot poker stuck in an open wound. It takes a while to get over that kind of injury and to find your feet again.

    The support from everyone both here and on FB makes a huge difference and I can't say thank you enough. Love and hugs to you all. xxxx

    I should add we wont be seeing that GP again. Not only was he an arse, but the specialist referral he gave us was useless as the doc only sees patients 15 and above. Idiot.

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  12. Okay, I'll bite. HOW did you get them to test your kids?

    Mine exhibits so many, so so many of the same things I had going on at his age... migraines, strange unexplained aches and pains, all-encompassing nausea. I am so very tired of it getting passed off as growing pains when i am sitting here with a fenanyl patch glued to my ass cheek just so i can stand up long enough to take a shower without tears from the pain...

    I am so worried that i have passed my crap genes on to him.... and so even more concerned, that it's not going to be believed or caught until he has endured way too much pain. more than he should ever have to endure do to some fluke of genetics and time and space and whim of an unseen god...

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  13. a different breed, drs.

    your doing a good job, remember that. take care. xxxxxx

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  14. Mel - I just pushed for it. My youngest has multiple joint issues and with his current frequent sublaxes they had no choice. I knew what was needed and just wasn't going to leave till I had the referrals I wanted. Much of what he is currently experiencing is like seeing my childhood revisited.

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  15. Em - thanks Em. Just over it at the moment. Oh, and keep an eye out in your post for a long overdue gift from Oz. :)

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  16. I understand this so very well. I watch my daughter suffer with pain and I know what the years will be like for her. The disbelief, the accusations, the fear all on top of the pain all the time. But, there is one thing I am glad of, because I had the experiences she didn't have to suffer as long before treatment because I fought for her, same as you fought for yours. That is a good thing.

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  17. What a sh!thead!!! :o your gp! Im gobsmacked at that!! :o BTW I love lurking on your blog, it is lovely to know were not alone in the world with this crappy illness!!

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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