MY JOB IS MUM

 I will never get used to the following dialogue and I seem to have it with someone on a regular basis:

You have a day off, do you?
No, I haven't worked for almost two years.
Oh...

That "oh" speaks volumes to me. It makes me feel like I am lazy, that I should be at work, that I should be giving back and that I am a dependent leech. So usually because I don't want people to think badly of me, I end up giving people who have no right to information the reason while I am off work. And then when they are gone, I feel really angry with myself.

Why do I keep doing that? Why do I feel that I have to justify my situation? I do work - my job is Mum.

I suppose its because despite all the health dramas, all the counselling, all the everything, I know that people only judge what they see in front of them. And that's what I felt happened today.

The power at home was off today  for local maintenance, so this morning I got up early to do some essential chores and then headed into town to kill a bit of time, have a coffee and a spot of lunch. I knew that the power would not be on for a while, so I decided to do something I rarely do - I went to see a movie. And that's where the conversation above took place. What was I doing in the middle of the school day at the cinema?

This person is someone I used to socialise with when my eldest daughter was born 21 years ago.We have not kept in touch so I assumed  she did not know my current situation. At least I thought so. When I gave her the reason I wasn't at work she said, " oh yes, I heard about that. Is she better?"  I muttered something vague and took off in a little bit of a huff!

I spent my first few minutes staring at the adverts on before the movie,  feeling a little cross and put out. Then I got over it and stopped making mountains out of molehills. I need to stop assuming that people understand or will ever get, that Cowden's syndrome has no end. It is not a condition my daughter and I will get over. There is no cure. There is only learning to live with it and making the most out of life with it...and teaching people about it.

And at the moment for me that means not working in a job where you have set hours and you get paid. God I miss the getting paid bit. It means dealing with my health issues while supporting my daughter. Believe me, between bill paying, scheduling appointments, attending appointments and often having to research and plan for my own treatment, there is no time for anything else.

For the record, the movie ( Pitch Perfect 2) was OK. Just OK not great. Quite corny really and downright condescending and degrading to women in places. I'm not sure why in 2015 this is actually acceptable. I thought society had become better than that.

Next week my Mum job really  goes up a notch, because its surgery week.

Next week everything will once again stop and specialists will once again attempt to remove the second fistula in Ashton's head. It will be her 16th procedure in almost two years. Her father, sister and I together with an extended prayer army world wide, will sit and wait and pray and hope for good news. Its a reality check of the worst type. This is my job - I'm a Mum.

Then following surgery I will be there for support as long as she needs me. Her father will return home, 425km away. One of us has to earn money so his support will be from afar. I thank God our relationship is strong because constant separation is hard on a marriage.

Last weekend on one of my regular visits, my daughter gave me a big hug and said thank you for everything I had done for her and her sister over that weekend.  She told me how grateful she is that I am always there to support them. I hugged her back and told her that it was my pleasure and that one day when she had her own kids , she would pay it forward and look after my grandchildren.She will never know the depth of a mother's love until she is a mother herself.

I do have a job.
The hours are tough - 24 hours a day.
The job gives me a wide range of emotions - happiness, anger, love, impatience to name a few.
Its a hard job but I wouldn't change it for the world...(well if I could I suppose I'd remove Cowden's)
My job is MUM.

Till next time...xxx

Me with my Mum and Dad 1966 - UK

HAPPY 21st TO MY F.E.D

Twenty one years ago I gave birth to a beautiful baby girl. She gave me quite a shock because she arrived five weeks and one day too early on a very humid night. When I woke her father at 11 pm to tell him my waters had broken, he didn't believe me at first. But he had no choice really and soon we were flying out the door to the hospital. We were so young and so naive and so inexperienced that we forgot to take a bag of anything with us. You know what I mean - clothes, toiletries, baby stuff! We had nothing with us. Looking back now it was hilarious!

That night a new midwife was doing her first shift in a new country hospital. She was told to expect a quiet night for her first night and within two hours she got an emergency. I remember her ringing the doctor who was not too pleased to be woken up. Apparently she made the huge mistake of ringing the doctor before examining me herself. The poor woman got yelled at but there was no doubt my baby was on its way, so she managed to squirrel out of any more doctor tongue lashings.

Like her sister two and a bit years later, she was too early to be delivered in a country town hospital and the Royal Flying Doctor plane had to come up from Perth to get me. Ashton was born the following day at 2.59 pm in between calls to my closest girlfriends.I have never seen such a look of delight on my husband's face as I saw that day.

The feeling of holding your first baby in your arms is quite inexplicable. The sudden rush of love
Iand wonder when you look down and finally meet your child can be compared to nothing else. You love all your children equally but the wonder of the first birth is just so special. It was so interesting to read another blogger #Lysa Wilds from #Welcome to My Circus describe exactly the same feelings in her recent post about her son, who coincidentally has a birthday this week too.

My daughter woke up in hospital on her 21 st birthday. She had surgery the day before which did not achieve what it set out to do, so it could have been a downer. But with the help of the nurses, doctors and friends and family we still made the best of the day. Eventually Ashton got discharged and home we went for flowers, cake and visits from family.

The health sagas are not over. We had hoped for the best of 21st presents. We had hoped to be de-fistulised. However, it wasn't to be this time.Once again I thank God for a doctor who knew when to stop rather than take risks.

So now its time to concentrate on a 21st party and on life. She will be reviewed by the doctors in a few months and a new plan of action will be made.We hold our collective breaths but till then life goes on.

Happy birthday to my favourite eldest daughter. 

Till next time...xxx

NOT A POET AND I KNOW IT

I want to scream

I want to shout

I want to let frustration out.

I want to cry
I want to yell
I WANT MY DAUGHTER TO BE WELL

I want some things to go our way

I want to have a peaceful day

I want to find a lucky clover 

I want this nightmare to be OVER! 

Ok. No need to tell me I'm not a poet. I know! But it's the first thing that came out when I put finger to ipad. I am frustrated beyond belief because I had such hopes for Ashton returning to theatre this Friday. I had high hopes for a little bit of finality, a little bit of closure. But if was not to be. There are not enough beds available and no room on the lists for the procedure to happen this Friday.

So, there will be more waiting and more hoping and more praying that her current good health stays with us. We will distract ourselves with thoughts of her 21st party which is scheduled for the end of this month. And I will distract myself with menus, balloons, gifts, cake and an increasing guest list. This is going to be a great party, not just for the birthday girl but for all of us. Everyone on both sides of the family needs a good party.

Waiting is not something I'm accustomed to when it comes to health issues. Luckily I have always had private health cover and been able to choose my own specialist and be seen quickly. But Ashton's treatments have been in the public system because for her condition that's the best place to be. And so we are constrained by lists and budgets and beds and availability of staff etc. It's not fair is it? It's bad enough having any medical condition, without having all that put on you as well. I wonder if people who allocate budgets have ever had to wait for medical treatment before. Bad enough if it was for me...hell that it's for my child. And double hell if that's the only system you can afford to be seen under.

The husband has returned to Geraldton to replenish the bank account. It's hard being separated like this but Ashton can't drive herself at the moment and so I stay. Ciara starts university next week! Sound the trumpets and blow the horns. It's going to be another big year for my budding actress as she undertakes a certificate 4 in musical theatre at WAAPA - the west australian academy of performing arts based at Edith Cowan university.

Till next time...xxx

ST

ASHTON ACT 2

So, yesterday was a very,very long day. We waited eight hours before Ashton was taken to theatre. The delay was a giant aneurysm in another patient, so we had no option but to wait and exercise gratitude that we COULD wait.

Finally, at 3 o'clock she went in for what Dr HS called Ashton Act 2 ( funny bloke), and Mark and I left the hospital and went home for a nap. Well we tried to nap. I just stared at my ipad screen and counted down the hours. Eventually seven hours later the doctor rang. I will never understand how doctors can perform for such long periods of time.

He managed to remove most of the fistula and it's now downgraded to low. She will be returning to theatre soon for him to finish it off. To quote him " I'm not taking any chances on it regrowing". This is music to my ears because I want the bloody thing gone. She has a 21st birthday and a new uni year to deal with!

So we walked in to the high dependency unit this morning expecting to see someone looking somewhat washed out. Of course that didn't happen. She looked amazing and alert, tired but happy. That's how you recover folks! Her blood pressure is a little low, other than that she looks very well. My child is just amazing.

And now I want to say thankyou to everyone for yesterday's support. Please keep the prayers coming as there will be more procedures and she will need lifetime monitoring. I asked for a circle of prayer around her and we got that AND we could feel it. As Ashton was wheeled into theatre she said she felt calm and peaceful.

Apologies to those on my facebook page who have already seen these photos. They're all I've got at the moment and I just wanted everyone else to see her happy, well face.

Love and hugs.

Till next time...xxx

4 DAYS TO GO

OK...FOUR DAYS TO GO!!!

This Friday Ashton is back in surgery for work on the fistula in her neck. It's been a long three weeks waiting for this procedure and we are almost there. As she says its nerve wracking but we are so close now, we're keeping it all together.

Well, I'm drumming up support worldwide. Prayers have started everywhere and I'm hoping for the same feeling I've had before, of a world wide circle of prayer around her. After that as I said on Facebook and many times before, it's in God's hands.

Oh by the way... I tweeted the Pope. Yes he has a Twitter name @ pontifex, so I tweeted him and asked him to pray for my daughter. Will be over the moon if I get a reply.

The husband gets here in three days and then we are ready for the warrior support Ashton needs. I can't wait till he gets here. I really need him by my side. Ciara is working during the surgery. It's her way of keeping busy because waiting does do your head in.

Meanwhile, the book is going well and after this Friday I will finish it. It's rather surreal to revisit some of the last few months but also uplifting when I see the progress that has been made. Regardless  of whether I publish it or not, it's kept me busy and focused.

I may post quite a bit in the next couple of weeks. Hope you don't mind! I need to keep my anxiety levels down and writing is my way.

If you want to leave words of encouragement for my brave 20 year old, feel free and I will make sure she sees them. 25 days till her 21 st birthday and God willing all will be so much better by then .

Till next time...xxx

RHYTHM OF MY HEART

I have just returned from the big city YET AGAIN. I have done that trip so many times in recent years, the car knows its own way there and back. For those of you not familiar with Australia, its a four and a half hour trip to Perth from my town... each way. Its long and mainly boring. Sometimes you see good stuff eg I recently saw a family of emus trying to cross the busy road. But otherwise its mind numbingly boring. Just me driving over four hundred kilometres... singing to Rod Stewart at the top of my voice!!! Bet you wish you could hear that!!

Anyway, the reason for this trip was that it was the FED's (favourite eldest daughter's) checkup. She was scheduled for an MRI later on that night at 8pm plus a checkup the following afternoon. We all felt rather anxious wondering what news this MRI would reveal. Best case scenario the fistula would have shrivelled even more. Worst case scenario, regrowth.

 So its 8 pm and I'm sitting in a dark carpark at the hospital in pouring rain. I am starting to feel the effects of the long trip so the girls have gone in together leaving me to rest. I think its probably better because grumpiness is mingling in with the tiredness. Don't blame me! I am missing X Factor which I love. Who schedules these things for 8pm? Ridiculous. Unfortunately this means I missed seeing her dressed like a yellow Wiggle but oops...maybe someone got a photo!


The following morning anxiety was at a high. She looks so well but unless its reflected in the MRI we're not having a party yet.

Dr HS is running around chasing his tail. His hair is out of place..." not a good start", I whisper to my daughter. He then tells us we are early before realising he has lost an hour. This sort of behaviour normally annoys me from professionals but this doctor saved my daughter's life. He can dribble as much nonsense as he pleases and keep me waiting as long as he pleases.

And finally the verdict. There is no more improvement BUT there has been no worsening of the situation. That is excellent news. The situation has gone from critical to low grade, but he doesn't want to give the fistula any chance to regrow so it will be back to surgery early September, to hopefully chop out whatever is left.


We expected this.
We knew there would be more.
Look for the positives.
We are in a better place than 12 months ago.
Damn you fistula...why can't you just shrivel up and die???

So with four weeks to surgery I decide to head back home and leave both girls to fend for themselves.  They are getting better at managing for themselves and are both busy with their studies and their friends. I try to dismiss feelings of not being needed. I know its not true but I can't help it. One minute they rely on you so totally, the next they are driving, cooking for themselves and manoeuvering through life's pitfalls.Wouldn't have it any other way but give me a moment to feel sorry for myself...please.

Till next time...xxx

#*%%#**%##% OF A WEEK

My friend Dave is a colourful Australian character, with matching colourful language guaranteed to make the hairs stand up on your head. He has a unique way of looking at things and calls a spade a spade, albeit in words which no censor would pass.

If I had to get Dave to describe this week it would go something like this #*}%+€#*##!*!!! And that's about it in a nutshell. It's been one of those weeks.

I returned home for a few days rest and left the FED ( favourite eldest daughter) in the big city to rest too. She seemed fine. She honestly did. Surgery was planned for the beginning of August and all she needed was to rest and recuperate from her last ordeal.

I kept tabs on her all week (social media is good for that), but could see as the week progressed she was sounding more and more unwell. So like all good mothers everywhere I flew back.

In the meantime her sister took her to see a GP who gave her a course of vitamins to strengthen her. The girl has had nine neurological procedures in twelve months and the best the woman could come up with was vitamins. Honestly!

I took one look at my daughter, threw her in the car and took her back to hospital where the doctors have a whole brain each, not half a brain like Dr Vitamins.

Test after test after test.

Doctors who know her well.

Even the MRI people know her on sight.

We're back.

I will never cease to be amused by the characters in emergency.

Doctor - can you tell me what happened?
Patient - well he threw the first punch but I got him back a beauty

OR

Doctor - Why isn't your husband taking his pills?
Italian wife - cos he no like them
Doctor - he won't get better if he doesn't take his pills.

Italian wife - s'no good. You find him something else
Doctor - there is nothing else.  
Italian wife - those no good him. You change.

OR

Nursie, nursie, nursie ( in increasing loudness to screaming volume).        

" Your opinion please Dave..."
" f**** lowlife&$?@&$ dumbarse ...*#*#*"

And so we are on the ward and I'm sitting watching my girl sleep. She is tired, very tired. I watch her closely feeling so, so helpless.
Hurry up doctors. Read those tests and DO SOMETHING.

And finally a phone call arrives to the nursing desk instructing them to prepare her for theatre tomorrow. My heart sinks. It is all too much.

#*^%#?%^*!%#.

Till next time...xxx

INTRODUCING ASHTON- GUEST BLOGGER

I stare into the bright light above me.

I seem to find this light intriguing for some reason. Is it a camera protecting me? Is it a metaphorical sign that God is looking down and more importantly looking after me?

Outside there is the shuffling of feet moving from one end of the room to the other, attending to call bells that pierce the air when they sound. Someone would think that a large medical emergency has occurred.  The lady across from me is barking madly and I pray to the light that her germs aren’t energized enough to reach me.

I resort back to my mate the “light” and converse with it. In my post anaesthetic state I utter a simple, “hi how you doing?”

A response might have been nice Mr Light.

***

Dear Reader,

You probably think I’ve gone crazy. Please allow me to explain myself

My name is Ashton (you know me as the FED) and I have a brain that doesn’t work.   

I have what is known as a dural fistula, an abnormal direct connection between an artery and a vein. And there are many of these abnormal connections in my brain. I am clogged up there like a big clump of spaghetti. This has led to one of the sinuses in my head being blocked off because the blood has not been able to drain back and through my head properly.

In the last eight months, I’ve been through seven embolisations to separate the fistula, have been seen by 10 different doctors (one of whom doesn’t know that we are secretly married), spent over two months in hospitals, 49 hours of surgery and God knows how many blood tests.

I’m known as an abnormal case (no surprises there.) Something such as a dural fistula is not common in healthy 20 years olds but more common in those in their 60’s and 70’s.

“Twenty years olds should be out living their lives!” one doctor exclaimed to me.

It has been overwhelming. There’s no question about it.  It takes a toll on not just your confidence and well being, but also the people around you.

People have always told me that there will be events in life that will make you grow as a person. To go through adversity such as what I’ve gone through makes you look at life in a different way. It makes you appreciate your life. It teaches you to fulfill every moment.

I’ve never been so grateful for the love and kindness I’ve received from people such as the nurses who will offer you a Milo to help you feel as comfortable as possible. Or the doctors who have been so  gifted with the ability to help improve the health and wellbeing of other people and yet still have time for a chat.

I’ve had well wishes from England to America and Malta to Saudi Arabia. People everywhere have been letting me know that they are thinking of me and praying for me. How lucky we are to exercise our ability to pray.

So please forgive me for talking nonsense to bright lights, and thinking that they will talk back to me.  I do have more surgery planned for Friday next week. It’s hoped that this will end all the long procedures that I’ve had and hopefully let me return to living my life… with a new found gratefulness and a mantra of "living life to the full."

PS. The jury is still out as to whether there is a connection between my condition and Mum's condition of Cowden's Syndrome. At the moment, we will just deal with one thing at a time.