That is what I reckon this post will be, all muddled up without a coherent train of thought running through it to pull it all together. But that is life. Life is messy and muddled and I just make it up as I go along and hope like hell I am doing the right thing.
I started to write this in response to my daughter Veronica’s post, about her grief and her sense of aloneness in all she is facing at the moment.
I had a long talk with Veronica yesterday, as we do nearly everyday. She prepared me for the content of post that she had written knowing that her sadness would make me cry. My parting words to her in her aloneness was the only truth that I could give, that at the end of the day she is “The Mother” and she just has to suck it up and get on with her life as best she can.
The only comment I could leave her after I had read her words was, to just keep on putting one foot in front of the other.
Because that is all we can do, just keep on plodding along.
The Ehlers Danlos Syndrome makes everything doubly hard for my little girl and then you throw a sprinkle of Aspergers into the mix and I don’t see any easy days in my daughter’s future at all.
So there is grief on top of grief.
Grief for all that we have lost with the early death of my Mother. Mum was an energetic whirlwind of a woman. A 5 foot tall bundle of contagious, hands on practical energy. Her catch cry was, “Lets Go!” and go we all did, swept along in the wake of Mum’s enthusiasm for life.
Grief for the loss of easy children, with simple answers for Veronica. We all want our children to be happy and sometimes the despair I hear in Veronica’s voice is enough to bring me undone. Again.
There is also Anger, frustration and a good serving of stress to top it all off.
I am slow to get angry but when I do my anger is like a flash fire, hot and fierce and all consuming. I am an Aquarian born in the year of the horse and my Chinese element is fire and apparently for those that know these things I am true to my signs.
I can feel my anger building. Anger with those that make my daughter’s life hard. Anger with members of “The Spouses” family who wont believe that EDS is real. And a general delayed anger that my Mother is dead because everything would be a hell of a lot easier with her here to help.
I believe in truth and for those medical professionals and assorted bystanders that don’t want to hear my truth, your denial isnt going to stop me saying the words and fighting for the best outcomes for my family.
Ehlers Danlos Syndrome isnt an easy illness to deal with. Ehlers Danlos Syndrome is pretty much invisible and those with EDS are used to being in pain, or feeling sick all of the time so they don’t make a fuss. But as the mother of two EDSy children and an EDSy spouse it is very hard for me to watch and feel helpless in the face of their illness. So I do the only thing that I know how to do and that is support my immediate family and try to educate other people about EDS.
I simply do not have any emotional energy to spare for those people who are unwilling to make an effort to understand what my family are going through on a daily basis.
The Spouse can not stand for longer than five minutes at a time without feeling like his hips are going to fall out and his back is on fire. He put up with this pain for a long time and was starting to spend longer and longer in bed because it was the only place he could be pain free. Until I dragged him, unwillingly I might add to our family GP and organised for him to have better pain relief in the form of slow release morphine patches. The Spouse has your typical Aussie blokes attitude to doctors and wont go to the doctor unless I push it. The Spouse’s remedy for his pain is to just drink more beer and hope it goes away enough so that he can sleep.
For a man with a very strong work ethic it is very frustrating for him to be limited in what he can do and that frustration often presents as aggression.I don’t take any notice of the grumpy old bugger when he is having a whinge and his anger whilst loud, is mostly directed at himself.
The parts of your brain that deal with pain are right next to the parts of your brain that deal with anxiety. So pain and anxiety go hand in hand. The Spouse hasn’t been to any of my exhibitions as he doesn’t like crowds. He wont go into the city and the only time he willingly leaves the house is to go fishing.
Both my children have varying levels of anxiety as well, this is all part and parcel of the Ehlers Danlos Syndrome.I am hoping that the psychologists at the pain clinic at the hospital can help Veronica without having medication that turns her into a zombie.
As I wrote earlier when you throw Aspergers syndrome as well as Coeliacs into the mix it makes for a very challenging headpace. I am missing my mother dreadfully and I worry about my grand children a lot. So I throw myself into my work and join another committee, set up ceramic blogs and facebook pages so that I don’t have to think too deeply about the future.
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That wasn’t muddled at all!
Sometimes you wonder one family gets hits so hard by so much adversity. We all know someone with the run of bad luck, the hardest of circumstances. Sometimes it’s illness, sometimes it’s a physical disability, sometimes its mental health issues, sometimes it’s ethical choices made and stuck to that limit options. Ultimately, no-one should judge, but I guess at some level, we all do.
Only now, at 40, am I beginning to realise how blessed I have been. Living with a very ethical man and working with cancer patients is very grounding. And I bury myself in other things to cope too. Diversion is an effective ostrich-like manoeuvre. It’s either that or eat chocolate and sit on the couch.
*hugs my dear friend who obviously is in need of more chocolate*
Thanks Anne,it felt a bit muddled in my head until I had written it out of my system and now I am better.
hehe Thanks Mrs OH, but I am avoiding chocolate at the moment, I am trying to lose weight for the Aussie bloggers conference in March so no chocolate for me. Also the high salt content is bad for my blood pressure. So you will have to eat all the chocolate for me 🙂 I am okay really I just needed to have a whinge and get it out of my system.
Um, so waiting in lines is very, very hard for your family. Then when you ask for any sort of special consideration you are the bad guy wanting the easy life. Anyway… if I were your hubby that would be a big deal to me, and fishing has no lines. 🙂
Waiting on lines is so impossible that often we’ll stay home rather than go places that have ’em. We just have a different reason.
How very odd that Veronica and I are bloggy friends, that we can compare notes. I never would have imagined the autism spectrum being in your family when we first “met.”
Life is pretty shitty at times Kim and all we can do is keep putting one foot in front of the other and wade through the morass until it’s bedtime again. Trite and not much help at the time maybe but true nonetheless. Also ignore the ignorance of those who will not accept the truth of what is in front of their eyes. You have better things to do with your life.
You are right about Veronica’s life ahead being not only bloody hard but also not at all what she would have envisaged not so many years ago. Their has to be a lot a grief for what has been lost there as well as for the death of that so important woman, your Mum, her Nan. But we have to make the best of what we have. Veronica is a strong woman, as are you, and she will bring her children up to be their own people, full of fight and strong principles because that is in her genes. Rather like you have done with her and are still doing with David. You can support her, offer what help is practicable for both of you, but in the end it’s her life, her family and she must, and will, live it on her own terms to the very best of her abilities. And I think, EDS be damned, her abilities are awesome.
So, do not waste your energy and time on what cannot be undone but rather spend them wisely on the future, however it may unfold. Oh, and whinge as much as you like, it is good for the soul, and we will always listen with love.
Gee, that was a long comment! Such a shame we don’t all live closer so that the hand-holding could be real instead of virtual 😉
xox
*big hugs*
You guys are creating awareness of conditions such as EDS. My ex had EDS and I accused him of being a lazy good-for-nothing who moaned about everything, even having to mow the lawns.
So I have acquired a new appreciation for people with the condition and I bet a lot of other people have too.
So you are doing something positive here, don’t forget that.
Arggghhhh! Please excuse the incorrect ‘Their’ that should have been a ‘There’. Why do they not leap out at me before I press send, I really, really hate that!
;-(
Hon, we all need whinge time at some point or another. Sometimes life just creeps up and kicks us in the teeth.
I stopped by V’s blog and left a comment. Don’t know if it’ll help, but it’s what I can do for you and yours.
Sending well wishes your way. If you ever need to vent, I have good ears.
“…all muddled up and without a coherent train of thought..”
You do realise that you’ve just described me!
You, on the other hand do not sound at all muddled.
I wish the medical profession in general knew more about the problems with EDS, it’s such a complicated thing, not at all simple, like diagnosing a case of measles, for instance.
Would hypnotism have any effect on Veronica’s anxiety?
I get so worried about you all too, knowing how hard the aspergers/autism spectrum side of things is. I just wish I could be close by to help look after the kids sometimes for V to have a break. It seriously SUCKS living on the other side of the world.
I still dream of winning the lotto and being able to give enough money to be able to get private EVERYTHING medically for you all. One day… maybe… right?
*hugs* xx
Hugs. I wish we all lived closer. BG Xx
echo BG’s sentiment.
I feel eternal guilt for my daughter’s pain, I know its not my fault, my gene’s passed on to her to fill her life as mine is with pain. I feel even more sorry for her because I wasn’t diagnosed with EDS when I became pregnant another burden she bears when the time comes for her to have children. A choice I know at 20 she does think about.
So what she and I do is mainly live for the moment. She particularly, laughs loud and often. This helps me to see that what happens when people are afflicted with shit stuff frankly is that they get stronger little by little. Learning that each day does bring challenges but it also brings life. On good days she will say ‘do you know what, fuck it, bring it on’. I learn from this.
I like you meander off on tangents (I wish as creatively as you) by way of distraction. It helps me to be strong when she is weak and vice versa. I can’t take her pain away and I do worry incessantly for her future.
You have a legacy to carry from your mum which is strong and true. You don’t seem to see what I see. I see someone who does hold your family together well. Veronica’s grief is entirely natural, missing a grandmother is like nothing else on earth. Missing a mother is profoundly lonely. I hear the pressure you feel under here and understand it well. As ever I urger you to carry on as you are. Don’t ever stop being you, because you are just great.
I think Veronica and family could do with some fun. Perhaps a really out there Halloween Party where imagination and Amy’s artistic talents could run amock is the order of the day.
So sending a great virtual box of laughter for you all. It should be there v. soon.
xoxoxoxoxo
Hugs.
One things friends of mine have to keep reminding me. Having a child with special needs and having a chronic disease is not a sprint race, it is a marathon and I need to pace myself.
I shouldn’t be trying to do everything at once and find all the answers right. now. which is what I want to do. I need to have solutions, to fix problems and make it all better right. now.
But sometimes just being there in the moment, taking one little baby step at a time and being patient is what I need to do. And you know what, that sucks. It really sucks.
You and Veronica both do a great job at raising awareness of EDS, you are more supportive of each other than many other families I have seen in similar situations.
and from commenting here I went over to visit another blog that had this great post – http://graycenter.wordpress.com/2010/10/11/patience-for-the-journey/
Ah, I’m late getting to your post. Caught up in my own shit journey right now. I hate that your family is going through all of this. And I so wished we all lived closer. I know I keep saying that over and over. I don’t know why some are dealt such a raw hand and I don’t like it when others say “you are never given more than you can handle” because I don’t believe in such simple equations. But I do know that you and Veronica are both strong and beautiful souls and you face these challenges with grace and dignity. Thinking of you. xx
And by the way, I don’t care what you look like when you get to Sydney, I just want to meet you in person and give you a big hug.
I wish we could have a cup of tea together.
You do realize that Amy’s food reactions are probably just part of the AS? That’s extremely common with AS children. It may improve significantly as she gets older.
It’s hard to see your hopes & dreams for your children get squashed, esp when, as in your case, they are normal hopes such as: living without pain & enjoying their own children’s early childhood.
Hate it when extended family denies problems. It’s a bugger, isn’t it?
Much love to you all.