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

#1000 SPEAK - 1000 VOICES FOR COMPASSION

On February 20, 2015, 1000 Voices For Compassion will share their thoughts and stories about compassion in all its forms (love, kindness, understanding, empathy, mercy, etc.). I am so excited to be part of this, because in the last few years I have been on the receiving end of so many acts of compassion, a couple of which I would like to share today.

One of the stories which comes to mind occurred when Ashton was in grade 1. She was 6 years old and was suffering from terrible asthma and recurring pneumonia. At one stage I felt so desperate because the GP just did not seem to understand how sick Ashton really was and was limited help. So, I placed a call to the paedatrician in Perth and told him about my worries. I actually sobbed my heart out because he was so kind and attentive. He told us to come straight to Perth ( 4 1/2 hrs away) and Mark, my husband left with Ashton within the hour.That's a big job, to drive for that length of time with a very sick child.

Why didn't I go? Well at the time I was a Home Economics teacher and my students and I were in the middle of preparing to cater for a big function. This was a big assessment piece which needed me there and I just could not leave until it was over. So, the plan was that Mark would go down with Ashton to the paediatrician and I would fly down with Ciara (age 3)  when the function was over.

I was exhausted beyond belief. For the two weeks leading up to this I had very little sleep - kids always want Mum at night! On the days the GP had actually hospitalised her I had been sleeping at the hospital and leaving for work from there. I would then return to the hospital after work. My house was a disaster zone. Neither one of us had the time nor the energy to cope with anything other than the kids and some work.

With the function successfully over and with Ashton admitted to the children's hospital in Perth, I started to pack to join them. I felt terrible not being with my child but was making the best of the situation. At 8 pm, while I was bathing Ciara my doorbell rang. Being past exhaustion I hoped it wasn't a social visitor who would require a cup of tea and time I didn't have.

It was a visitor, my colleague Kate whom I had seen at work that very day. But, she wasn't there to be entertained. She was there to help.

In the next two hours she cleaned my house from top to bottom, helped me pack clothes for myself and my daughter and made me coffee and food. She joked about my fridge, telling me she never knew I had an interest in cultivating bacteria. I should have been so embarrassed but I wasn't. Her compassion overwhelmed me and I left for Perth in the morning with a spotlessly clean house and a place in my heart that will always be hers. It was the nicest thing anyone had ever done for me.

Ashton spent 8 days in Princess Margaret Hospital.My mother's intuition was right, she was very ill. We booked into a nearby hotel we couldn't really afford, so that we could  be close to our girl. It was the worst hotel I had ever stayed in but we had no choice as it was the closest to the hospital. Over the eight 
days Mark and I worked in shifts. One night he would sleep upright in a chair near Ashton's hospital bed and I would spend the night in the hotel with Ciara. The next night we would swap. Ciara screamed non stopped for whichever parent wasn't there. She was terrified and so was I by the drunken shouts from adjacent rooms.

When Ashton was finally discharged, we went to pay the bill at the hotel only to find that some compassionate human being had paid the bill for us. Now, I'm pretty sure I know who did it but she never admitted it. The fact that we didn't have to pay for that accommodation saved us, because as I had been off work I wasn't getting paid and we really had very little money.

Over the years as our health issues amplified there were many other examples of compassion. To me compassion is being empathetic. It means showing people in some way that you get their situation and you're on their side. It means going out of your way to make life better for someone else.

During my teaching, I often did a " pay it forward" project. If you haven't seen that movie you should. I found that the kids I taught, often from low socioeconomic backgrounds absolutely thrived from showing compassion; by doing good deeds for others and forgetting about their own situations for a while. One year for Mothers Day we made hampers of goodies for older women in the community who deserved a treat. The compassion and the love that went into these works of art was amazing! The tears on the kids' faces when they realised they had caused this happiness was priceless.

A little compassion in a world hell bent on negativity and bad news goes a long way. Try incorporating it into your life on a regular basis and always remember to pay it forward. Sometimes all it takes is a simple smile at someone to show you care and wish them well.


C  O  M  P  A  S  S  I  O  N

Till next time...xxx

(If you enjoyed this post please consider sharing it) .

ST

RARE DISEASES DAY COMING SOON

February 28 is International Rare Diseases day.Some of you may remember the story of Meghan Ortega I posted a few months ago. Well, recently she and her Mum, Lori Ortega ( blog - Beating Cowden's) hosted a hugely successful fundraiser to raise money for a couple of organisations in the states who support rare diseases like Cowdens syndrome. At that fundraiser Meghan showed the following video she created. I hope you get some understanding about Cowden's syndrome, the syndrome I have, from this precious, intelligent, young woman and her experiences.

http://videos.videopress.com/IDX0X…//rdd-video-2015_fmt1.ogv

Till next time...xxx

ITS OK TO HAVE CERTAIN EXPECTATIONS

I'm home! After two weeks in Perth I am home and it feels so good to be in my own house and to sleep in my own bed.

Just an update on how Ashton is going- in a word FANTASTICALLY. She looks great and sounds great and is busily studying for a university exam next Tuesday. My daughter is amazing. She has just had a seven hour embolisation procedure and she has bounced back into study and an exam.Still one procedure to go but still waiting for a time to be given to us.

My other daughter Ciara is pretty fantastic too! She works her butt off and this week on top of her part time jobs will be back on stage in a production called # A Little Rain must fall. I am so excited to see her back on stage and Mark and I will be going back to Perth to see her next Saturday. So that gives me five whole days at home!

Love, love, love my children.

Which leads me to the whole topic of Valentines Day and expectations. I try every year not to have expectations but just once I would love to open the door to a dozen red roses being delivered to me. I'm 48  and we've been married almost 24 years, so how long do I have to wait? Probably for ever!

Being on a budget this year I made my hubby a batch of Nutella brownies and bought a cute card for him. My husband is the best at choosing cards so I have learned to lift my game in this area. I waited for him to arrive from Geraldton and he walked in and said " Happy Valentines day" (good) , gave me a big hug and kiss (better) and immediately said " I got you nothing" (bad...very, very bad). Not even a card!

Now maybe its the gruff method of delivery but I got so, so upset. I have no idea why I got so upset but as my face dropped, he noticed pretty quickly. See, I believe that no matter how busy you are, you always find time to do certain things - ring people for birthdays, smile at people, attend special gatherings AND buy at least a card for Valentines day. OR, pinch a flower from someones garden for them OR walk in and say " I haven't had time to buy you anything but you know how much I love you".

It's all about the delivery! Never walk in and in under a minute say " I got you nothing". Its terrible!

Anyway, the reason I love my husband is because he hates to see me upset and does everything in his power to remedy his foot in mouth disease. Later while I had a nap he went off to the supermarket and returned with roses and a card. The card made me laugh out loud. The front said something about us clicking, but his comment is what got me laughing - "one click and I got you flowers!" See that's all it takes, a corny card or a verbal card. The supermarket roses - too late buttercup! Thanks for trying to remedy the situation but too late.

We agreed to go out for dinner, but of course everywhere was booked.As a last resort, I suggested we get takeaway and eat at home and he agreed. By the time the food was ready to pick up he was fast asleep. No problem! He had driven a long way, so I went to get the curry. I came back and he was still asleep, but I woke him up for our Valentines day dinner in the courtyard.


I set the table with my supermarket roses and we ate our curry and rice together under the stars. It was lovely and our daughter even went out and bought some red wine for us!

So, the moral of the story is - you don't have to spend lots of money on someone for Valentine's Day. Its nice if you can, but its not important. What is important is showing people how much they mean to you. Words chosen well and simple actions mean so much more - well to me anyway!

And by the way the Nutella brownies were yummy for dessert!

Till next time...xxx

PS If you enjoy my blog, the biggest compliment you can give me is to share it.


BY POPULAR DEMAND:

2-ingredient Nutella brownies by diethood.com.
Ingredients
1 cup of nutella
4 large eggs
1. Preheat oven to 175.
2. Line an 20cmx20cm brownie pan with baking paper; set aside.
3. Place the eggs in your mixer’s bowl and beat for 5 to 7 minutes, or until the eggs have tripled in size. This may take up to 10 minutes with a handheld mixer on high.
4. Heat the Nutella in the microwave for 60 seconds (in a microwave proof bowl).
5. Remove and stir.
6. Slowly pour a stream of the warm Nutella over the eggs, beating until mixture is thoroughly combined.
7. Pour batter into prepared pan and bake for 30 to 35 minutes, or until a toothpick inserted in the middle comes out with very few crumbs.
8. Remove and let completely cool before cutting.
9. Dust with icing sugar. (Optional)
10. Cut into bars and serve.

Read more at http://www.mamamia.com.au/lifestyle/2-ingredient-nutella-brownies/#TBk1oh9W2lJyjkDh.99

HOW TO DRIVE CUSTOMERS AWAY

I needed to get some prescriptions refilled as having been in Perth so long I had run out. So, I made an appointment for the surgery where the girls go. Now I've written about this doctors surgery before and it wasn't good , but I decided to give them another go.
( You may wish to revisit an old post-
http://lumpyone.blogspot.com.au/2014/08/desperately-seeking-heather.html )

Appointment was for 9.20am because I stupidly assumed he would run to time that early in the morning. Mistake number one. They opened at 7.30am. Receptionist staff were friendly and accomodating. They gave me a survey to fill out as they are doing their accreditation. Not a problem. I like  that sort of stuff.

The waiting room was stuffy and airless and the dark brown, dated face brick did it no favours whatsoever. The chairs were uncomfortable but as I didn't plan on being here long, who cares! The clientele waiting included three well dressed old ladies, one bikie and his girlfriend, one woman and her Down's syndrome child and me. It was peaceful.

Enter the family from hell. - Mum, her sister and three kids. The eldest about eight was clutching a pillow and sucking his thumb. He was in school uniform so not sure where the pillow was going after the appointment, but he didn't look like he'd let go of it in a hurry. The two youngest, boy and girl

about 3 and 4 definitely ate their weetbix for breakfast because they had boundless energy and started running round in circles in the tiny waiting room.

Master 3 was sucking on a dummy as if his life depended on it. It looked really odd however because only one side of his mouth sucked on it. I suppose that's so he could yell and scream with the other side. Mum went to reception to get them a colouring in to do. All three sat quietly for a full five seconds and then Miss 4 stole Master 3's green crayon and all hell broke loose.

She then got out of her seat and decided she would finish her drawing on the lap of one of the old ladies. This woman was wearing white pants and didn't look too pleased but she kept up a line of chatter with the kid.

What are you drawing?
It's Dora.
Oh, Dora the explorer.
Yes silly. And I've written my name.

(Old lady desparately trying to decipher four year old scribble.)
Your name is Olivia
No ( loud voice)
It's Lina
NO ( even louder voice). (I swear I saw bikie man clench his fist at this point).
It's Lily silly.

Mum meanwhile had been chasing Master 3 around. She plonked herself down in her chair just as Lily called the old lady silly. I expected an explosion but all that came out of her mouth was " I have three more at home".

By this time my appointment was 40 minutes late.

Master 3 seeing that his sister was getting some attention from the lovely old lady tried to befriend the bikie. Bad move. The kid got the glare from hell which resulted in some super duper dummy action and him taking off to his Mummy's bosom.

At this stage Dr Pleasure pants called my name and in I went. No pleasantries, no sorry to keep you waiting, no sorry you've been scarred by feral kids. Nothing.

What can I do for you?
I need some prescriptions refilled.
Tap, tap, tap on computer and done and goodbye in about three minutes.

Now maybe I've been spoiled by Dr Heather. In fact I know I have. But, the least I expected is a few questions about why I'm on the meds. Nothing. Patient in. Patient out. It couldn't have been more impersonal if he tried.

I completed the survey given to me when I arrived . I could have gone to town but I was quite restrained, till the last question.

How can we improve our service to you?
My answer - it would be nice if the doctor smiled and was friendly.

That's not too much to ask is it? Never again - driven away.

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