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I have this photo of Mum and Amy as my screensaver.
I look at this photo every day but I cant bring myself to really have a proper look. If I look properly at this photo and look into my Mother’s eyes I feel myself begin to get all teary. So I quickly look away or I focus on my grand daughter’s face instead.
The enormity of the hole that Mum has left in our lives is only just now starting to become apparent.
Thankfully I have stopped crying every time I think of Mum,though I am crying a little bit as I write this because trying to articulate the depth of my loss makes me examine it in more detail than I want to.
Veronica now has two horses and she reminds me so much of Mum, in that she never does things by halves. Mum was an accomplished and knowledgeable horsewoman and watching my daughter with her two horses I am confident that it wont be long before Veronica is the same.
I don’t know where I am going with this post at all. I only know that today the sky is blue and it promises to be a lovely day and for that I am thankful.
David has been formally diagnosed by the geneticist as having Classical EDS with a score of 7 on the Beighton scale. ( a non bendy person might score a 1 if they could touch the floor with the flat of their hands) I am not very flexible at all so my score would be a zero.
The cardiologist has decided that a non-interventionist approach is best for David. Yay. I am all for non intervention. We go back to see the cardiologist in late January 2010. The irregularities with Dave’s heart mean that he will have to take extra care of himself and always be aware of the “heart healthy options” which is a big call for a fifteen year old boy who, like his peers thinks that he is ten foot tall and bullet proof.
My mouth is all healed up as is my self esteem. I can wear my teeth all day now without any major discomfort. I have plonked my teeth into the same category that shoes and bras belong, annoyances that must be worn outside the home for the sake of vanity. The first thing I do when I walk in the door when I get home is kick off my shoes, take off my bra and rip out my falsies. aaah.
I have been in touch with the trustees of a local nature reserve and they were quite excited about my idea of a sculpture trail. I was so nervous before I rang them,that I had to wander around the house psyching myself up to make the call. All the angst was for nothing and I was incredibly relieved and excited by the end of the phone call. I am meeting up with the trustees early next February on site. All I need to do is submit a written proposal to the committee and once that is approved I can begin working towards a major interactive exhibition in a lovely bush setting in February 2011. YAY.
I am also excited about our upcoming exhibition Perspectives of Fire and as soon as the invitations have been printed I will publish one here and then invite you all to the show.
I am working on some different bowls at the moment and Chris Jordan’s photos of the dead albatross chicks have really touched me. I am going to make a dead albatross bowl later on today and I will publish photos of it as a work in progress early next week.
Here are some bowls I made last week. These bowls are the sort of thing that I am thinking of making for the outdoor exhibition. If you mouse over the photos you can read the descriptions of what I have done.
I am off outside now to enjoy the sunshine.
Gluten is evil. Well in regards to my granddaughter Amy, gluten is certainly the enemy.
I will start at the beginning for those of you out there amongst the interwebs not able to read my mind.
Veronica was reading a blog post where the writer was describing her daughter’s behavioural changes when she ate anything with wheat in it.Tantrums, mood swings, manic behaviour and meltdowns.Yet again the blogosphere provided a light-bulb moment for Veronica as the writer could have been describing Amy.
Veronica rang me and told me that she was thinking of eliminating all wheat from Amy’s diet. During the course of our phone conversation, I pulled out half the contents of my pantry and we examined the ingredients. Massel stock cubes are gluten free yay, but homebrand french onion soup is chockers full of the stuff. Spring Gully worcestershire sauce is good, Holbrooks is bad and so it went on.
I found gluten in some very unexpected places. There is wheat in marshmallows. The sneaky fuckers! I was going to make rocky road for Amy’s birthday. Gah!
Fast forward a few gluten free days.
Yesterday Amy stayed with me for a few hours and the change in my granddaughter is very obvious. Amy was much, much calmer. We still did all the things that we normally do but we did them much, much, much slower.
Normally Amy has me tearing about the place at breakneck speed. Feed the fish.Look in the cupboards. Check the chooks.Collect the eggs. Cook the eggs. Throw the ball for Harry.Play in the dirt. Look for tadpoles. Eat the beans in the garden. See Poppy. Run in circles. Come on Nanny chase Amy! etcetera, etcetera, ad infinitum.
Generally after spending a few hours with Amy I am exhausted, happy that we had fun together but totally exhausted. Yesterday after I waved goodbye to my granddaughter I compared notes with The Spouse and we both agreed that WOW, there was a marked difference in Amy’s behaviour. And double Wow I also,wasn’t completely knackered and in desperate need of a nanna nap. *cue applause.*
The most exciting behavioural improvement from my perspective, was that Amy allowed me to correct her speech. Previously when I would correct her speech,Amy would sometimes listen and sometimes not. Yesterday she not only listened to me but she practiced her pronunciation with me, until she had the tricky word down pat. I am thrilled to bits.
Gluten is now the enemy.It also seems that there is a link between Ehlers Danlos and food allergies or intolerences. *sigh*
Also whilst we are on food related issues, my friend Barbara has just discovered her 22 month old son is allergic to peanuts.
Our issues with gluten aren’t life threatening and the changes needed are fairly easy to implement. Gluten wont send my Grand Daughter into anaphalactic shock it just sends her into meltdown mode, but it does mean a re-think on the foods we eat and it looks like I am going to have to add a whole lot of new sites to my reader.
So my lovelies that was my weekend, How was yours?
If I am honest with myself, I will admit that Ehlers Danlos Syndrome frightens the shit out of me. I try not to think too deeply about the long term prospects this disorder has for my children and my grandchildren. I am generally an optimist who doesn’t belive in worrying about things beyond my control.
But.
Some days an icy hand of fear just grips my heart and squeezes tight.
Some days the fear sits heavy inside my head pushing out all thoughts, except for the ones that tell me that I am afraid. I am afraid for my children, afraid of their choices. Afraid of the possible consequences of their choices, afraid of fear itself.
My fears which are the normal fears of a parent are magnified by the loss of my Mother and by the challenges assosciated with living with Ehlers Danlos. This post written by Achelois, gives me a glimpse into a possible future for my daughterVeronica and whilst it scares me witless, I know that Veronica is a strong young woman who will cope in her own indomitable way.
My son David had a dentist appointment yesterday. Pre-EDS, Dave would have just walked to the dentist from school, had his fillings and then gone back to class.
Post-EDS it is a whole different ball game.
David had to be assessed by a senior dentist in Hobart to see if it was safe for him to be treated at the small local dental clinic. The senior dentist needed a copy of Davids echocardiogram report and so it took nearly four months of to-ing and fro-ing before it was decided that yes, Dave could be treated at the small clinic which is attached to his school. But, he needed to have a preventative dose of antibiotics an hour before his treatment.
I don’t know exactly why David needs the antibiotics before his dental work, it is something to do with either his heart or his lungs. The Spouse took the phonecall from the dentist and didn’t ask why, he just wrote down Dave’s appointment times.Gah.
David’s Echocardiogram shows that he has mild pulmonary hypertension and the right hand side of his heart is enlarged. He is fifteen.We have an appointment with a cardioligist in September and I am trying not to think too deeply about the implications for my son until then.
But again that icy hand of fear is giving my own heart a bloody good squeeze.
As I was sitting in the waiting room of the dentists, trying to ignore the crap on the tv, I was quietly worrying about my son. I was hoping that the dentist wouldn’t accidentally dislocate David’s jaw.Possible scenarios and implications of a dislocated jaw played through my mind, all I needed was a brunette mournfully wailing for Heathcliffe and the melodramatic scene in my head would have been complete.*Sigh* I have a very vivid imagination.
David’s jaw didn’t dislocate but it became very clicky during his treatment and they want a senior dentist to have a look at it, at Dave’s next appointment.
I know that Veronica has her own fears, regarding the health of her children but at least she is spared the soul destroying doubt and disbelief, shown to me by the medical profession as I struggled to convince someone that my daughter really was ill and not faking.
Since Veronica’s formal diagnosis of Ehlers Danlos Syndrome earlier this year everything has become much easier,well much easier within the medical system at least. That little piece of paper from the geneticist means that Veronica doesn’t have to fight to be taken seriously.Her children are being closely watched by the paediatric team at the hospital and there are protocols being put into place for them. YAY.
Isaac’s E.C.G showed a lovely, perfectly healthy heart. Perfect perfect perfect. That is one less thing to worry about and I can prise back one of those icy fingers.
I have stopped sobbing now.Previously I only had to think of my Mother and I would start to sob. The tears would flow for five minutes or so and then I would be right.Ten minutes later I would start again.
I have a zillion half written posts in my drafts folder. Posts that start off like this.
All I want to do at the moment is crawl into my bed, pull the covers over my head and pretend the real world doesn’t exist. Yesterday by three o’clock in the afternoon I was knackered and the idea of just going to bed was so tempting, that I very nearly did just that. Sometimes I think that Eliza Bennett’s mother in Pride and Prejudice had the right idea when she just declared it,” All too much!” and took to her bed.
I want to ring my Grandmother to see how she is going but every time I even think about my Nan I start to cry.
Then there were posts like this one.
I am sitting here in the dark trying desperately not to think about the lump in my daughter’s breast. Ha! Epic fail.There are two distinct voices in my head, one is telling me that everything is going to be okay. Von is breastfeeding. She found the lump early. We have a history of fatty lumps. Don’t panic.
The other is the voice of pure terror and it is whispering the words, my daughter might have breast cancer, over and over at me. I truly don’t know if I have the strength to deal with a cancerous lump right at this moment in time.
I was supposed to return to Tafe that week but I went to the ultrasound with Veronica and Nathan instead. I cannot even begin to describe the relief that I felt when Vonnie was given the all clear. It was just a fatty lump. YAY.
We then went to visit my Grandmother, herself a breast cancer survivor. I hadn’t seen my Nan since the funeral and I couldn’t stop my tears. Nan held me close and I sobbed like a child bereft.
We three women who had been there at the end, sat and talked and cried. We shared our pain and our memories. Nan talked about Mum’s first day at school and we consoled each other with our recollections. With each memory shared and each tear shed we affirmed our love, not just for Mum but for each other. Our visit started with tears and ended with laughter.
It has been 25 days since my Mother died and the sharp edge of my grief is changing into a softer ache.
My Mother loved to cook and I have her cookbooks here with me. I am using Mum’s saucepans and her oven mitts hang in my kitchen. Small things of Mum’s that give me a great deal of comfort and pleasure.
I was using Mum’s pots the other night and I had emptied a pan of spaghetti sauce that I had made into a bowl. Harry the dog was looking at the pot longingly, hoping to lick the bowl.I distinctly heard my Mother telling me, “Don’t even think about it Kimmy!” I smiled to myself as I did as I was told and put the pan on the sink to be washed.
Isaac had a seizure on Thursday and we are waiting to see if he has epilepsy, or if it is related to Ehlers Danlos Syndrome as well. When Veronica rang me and said she was in the hospital with Isaac, my first thought was, right I will just let Mum know. Then I remembered and I sighed with sadness but I didn’t start to cry.
Life is slowly returning to a familiar rythym. David is back at school. I have returned to my studies. The house is full of clay and Jeffrey is growling about the mess I make. Things are as normal as they can be and I am starting to think about picking up my camera again. I have pots in my head screaming to be made and Barbara’s bum is morphing into a ladybird instead of a stag beetle. I am still not dreaming but I know my dreams will return and when they do I will follow them.
When your child is ill and there isn’t anything obviously wrong you get used to people giving you, that look.
A look that is full of pity for having been deceived by your manipulative child.
A look that is condescending because you are obviously too stupid to realise that your child is perfectly fine.
A look that shows they aren’t listening because they are sick to death of hearing you rabbit on about how worried you are.
A look that makes you just want to scream with frustration and rage.
My brother gave Veronica that look on Monday.
We were in the restaurant and I was writing down dot points for Mum’s Eulogy. I offered the pen to Vonnie and asked her if she would like to to have a turn writing. Von’s answer nearly broke my heart. “I cant write Mum, my wrist is too bad.”
The look he gave her was filled with contempt for her laziness. And that look really sums up Mike’s relationship with his family down here in quaint little old Tassie.
I don’t know if my brother reads my blog or not but if you do Mike, know that I do love you. Veronica has Ehlers Danlos Syndrome and I am desperately worried that she will be in a wheelchair by the time she is thirty.
Today I am going to the doctor with my daughter as I have done a million times in the past seven years. This time we are going to to see about a lump in her breast. I hope it is just a cyst. Please let it just be a cyst.
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Updated:- We have just returned from the Doctors and she thinks that Vonnies lump is probably just a cyst. She has given Von a referral for an ultrasound and I am much less stressed now. *phew*
