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

FESTIVAL OF ASHTON

So it's Sunday afternoon and I am having a lazy time. Last night a group of us went to see Ciara in her production called "A little rain must fall". It was lots of fun but with a message to take away about risks and consequences . I loved the colour, the activity, the loudness and the general storyline. The production is part of the "Perth Fringe Festival"and because there are so many acts going on, Ashton and I are going back tonight to see another production. We're actually going to see a comedian because I think before this week starts we  need a good belly laugh.


So let me catch you up on this family's sagas. This week as I've mentioned already is Ashton's  21st birthday. Her birthday is on Thursday and her party is next Saturday. We have approximately 90 to 100 people coming and it is going to be a fantastic night.

Only one thing stands between today and the rest of the week. No, it's not the fact that the uni year starts tomorrow. No, it's not the fact that some people still have no idea what to wear to the party. It's all about the fact that on Wednesday her surgery has been brought forward. What the hell!

You might remember that she still needs another operation. There is still some fistula in her jugular vein and the doctor (please bow) wanted to get her back into theatre as soon as possible to finish the procedure. The original date scheduled was March 20 and though it was a bit of a distance, we sort of got used to the idea.

Which is why we're all a little in shock that the procedure has been moved to Wednesday 25th February. She was given the option of saying yes I'll have it on the new date or no keep March 20. Rather hard call to make isn't it? Whichever decision you make it is full of negatives and positives. We all eventually decided health must come first, so she has opted to have the surgery on Wednesday 25th and will therefore be waking up in hospital on her 21st birthday. Never in my wildest dreams did I see my child waking up in a high dependency unit on her 21st birthday after her 15th major procedure. She has told the doctors that she expects flowers and cake. The bets are on as to whether they will follow through.

Just to see a smile on her face, Mark and I have already given her our birthday present. If you are not on my Facebook list you will not have seen these photos so I will include them because they have made made a lot of people smile and a couple cry. It's just so nice to see her happy.

We are so hopeful that this procedure will be the last BUT all we can do is hope that this will be true. This June it will have been two years since her diagnosis. That's a huge chunk out of her life and out of ours.

See you in the hospital.

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

WAITING, WAITING AND MORE WAITING

So, we're here at the hospital and so far we have been here six hours and still have not gone to theatre. My poor girl has not eaten or drunk since 8 pm last night and is now fast asleep out of pure exasperation.

                                

The doctors came in to see her hours ago and explained the procedure over and over again. I wish I could put my hands over Ashton's ears when they start talking about the risk of stroke, paralysis and death, but I understand it's something they need to do. I understand it really but I don't want to hear it.

We have one new doctor. Bertie beetle aka Dr Albert has moved on and that makes us all sad because he is a lovely doctor with great compassion. His replacement ( or the new model as Dr HS calls her) is a polished female doctor with a beautiful English accent. She will of course require a nickname and this will come with time. The main doctor remains the same, though slightly dishevelled which is unusual for him. That's what happens when you have three kids!!

Life in a hospital continues to fascinate me. You just get all sorts. I sat at lunch willing myself to say nothing when a woman was trying to feed a very young baby solids. Her friend was shoving spoonfuls of something into another child's mouth. The noise from both children was unbelievable and my shattered nerves couldn't take it. Mark and I just left.

Two orderlies nearby are having a very exciting conversation about whether a certain orange chair belongs in one place or another. Oh my goodness, it's the end of the world because it should be in the female change room not the males. Scintillating conversation! The excitement is killing me.

The nurse has just put Ashton on Iv fluids as it's been ages since she had anything to drink. The hold up is an emergency, as usual. I know it needs to take priority. I would want it to take priority if it was my family BUT please God make them hurry up. It's been too long a wait.

Got to go. An exciting conversation about the cups in the kitchen is breaking.

BRB

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

FRUSTRATION, PATIENCE AND BROWNIES

I have been staring at a computer screen for days trying to overcome the writers block which has overtaken me. You see I can't think straight anymore and I find I also can't talk without effort. I certainly can't be creative and to a certain extent creativity is required in a blog. At one stage I even considered deleting it all so that I wouldn't have to write any more.

This story you see is starting to take its toll on me. Waking up every day and facing what is in store is draining the heart out of me.

Last week we found out  that the fistula in Ashton's neck has grown considerably . You may remember that the doctor was on a mission to destroy this fistula back in November, when a problem in her thyroid stopped proceedings. Investigations followed and  plans were made to reassess in another year. Problem solved....or so I thought.

You would have thought it was then a simple case of getting back to the original plan. Hell no! First it took over two weeks for a report to reach Ashton's doctor. By that stage he was off on leave to welcome baby number 3. (!!!) Then it was Christmas. Then it was New Year and THEN he went on holidays.

Now we certainly don't begrudge him his down time. This doctor and his team work bloody hard. But when we finally got to a review early January and found out the fistula had grown significantly, we didn't expect to have to wait another 3 weeks to get to theatre.

Yes, I know about triage. I get triage, but I don't like it when my daughter's condition has become worse. But its pointless isn't it? Its pointless to moan because there is nothing I can say or do to influence the tight schedules and tight budgets  these doctors work under. All we can do is carry on and pray.

                                                      
And eat chocolate. A friend just brought me a plate of homemade brownies and they are to die for.

My support crew has gone into overdrive. My news feed and messenger is filled with  positivity and prayers and virtual cuddles. They can tell that I am close to breaking point. But...that is not an option.It never has been.

Last night I messaged another mother whose teenage son is going through a shockingly similar situation. I needed someone who gets it. She told me not to let the Devil get a foothold in my mind. Now I'm Catholic and we don't seem to talk much about the Devil, but for some reason this comment made sense. Don't let your mind be full of negative thoughts. Don't let these thoughts take over your thinking. Just remember God is on the case. 

 I get it.I've always got it. I just forget and lose hope every so often.

Today was no better. Ashton developed a headache overnight and though I suspect the assignment due today was a contributing factor, she has no option but to head to the ED and submit for more tests. Stress? Tension? Fistula ? Who knows? There is no extra blockage, so this time it might be a normal people's headache. Shame she can't manage it like a normal person would. Imagine if we all had to go to the ED everytime we had a headache. Saturday mornings would be crowded!

So that's the 19th almost done with and that means 18 days till surgery. Let's hope this fistula doesn't increase anymore in the meantime. Enough is enough.

Till next time...xxx