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Botox DayToday is Botox Day. Not for me but for Mark.
If you ask me “How’s Mark doing?”
My answer will be “he’s happy”.
It’s the easy answer for me and for the majority of you, although I know you all genuinely care, I don’t think you’d want to hear the it any other way.
In a couple of days it’ll be 2 years to the last stroke that Mark went to hospital for. The one that stole away more of him. More than any of you will probably ever know. Just when he was seeing his hard work paying off. He had started to gain strength, slept less and was starting to kick some independence goals -SLAP! I liken this all to a cat (stroke) playing with its prey (Mark). They let them just get far enough away that they think they are ok and have beaten it - then they pounce again.
Mark has since then continued to have “episodes” - possibly strokes, maybe seizures - something that steals him away.
Each time they steal a piece of my hope too but Like Mark, I refuse to lay down. Team Laverick will continue to fight!
Mark is happy. He is genuinely happy and his smile and joy he finds in life is what keeps me going. It keeps me wanting to fight and to raise awareness.
Stroke is a cruel cruel thing. It can rip away your core. It’s stolen so much of Mark. His speech, his independence, his physical strength, but never his smile, his gorgeous nature, wicked sense of humour or his love.
He is happy. Thank god. If he wasn’t I don’t think I could cope at all.
Well it’s actually my birth date but for the purpose of this post it’s about Mark’s care needs.
In 2011 I learnt that there are 168 hours in a week.
When Mark first came home his care needs were really high. 24/7
During the first 12 months I was given 10 hrs care a week. 7 of which I was the second support person. That allowed 3 hours to do anything that was needed. Thankfully my parents did my groceries when they did there’s and were often on school pick up duties.
As he improved there were times he could be left on his own for short periods - duck to the shop and grab milk, drop Sam to work or collect her - that type of thing.
As support hours changed and additional care was given I was able to return to some work.
Things have changed again and we are back to 24/7.
Seriously if I turn my back on him he’s up to some type oaf mischief!
From wheeling onto the road to remove a weed, trying to get into the backyard via the stairs unassisted, to standing without putting his wheelchair brakes on. Mark is keeping me on my toes!
Some of these things are great signs of independence which is something we all so desperately wish for, but sequencing isn’t working well and if you pull yourself up out of your wheelchair without the brakes on it can be a recipe for disaster. Mark has had a broken hip from a fall and these types of set backs are not something we are wanting.
24/7 means no ducking out. If I need to I put him in the car and we go together.
24/7 means if I’m not with Mark someone else is.
I have more support care now and live off lists making sure I do anything that’s needed with my care hours so that I’m not bundling Mark into the car when he’s not keen.
Lucky we love each other’s company!
Help me raise awareness of Stroke.
Stroke sux! Share the word!
Stroke Stole our Spontaneity
Oh spontaneity, my long-lost friend, how I miss you.
Spontaneity is something of the past.
I miss it.
I miss being able to decide to head out to diner to go wherever we feel. Yes, with COVID I think you all have had touch of that. It has been a shitty time to have that freedom that we have been so used to taken away. That is how our life has been now for the last nearly 10 years.
Our Checklist for eating out or holiday accommodation:
Dinner or lunch checklist.
1 What is the weather? Wet? Is it a location we can do an undercover drop off? No I’m not officially the wicked witch of the west and rain wont make me melt, but if Mark’s wheelchair seat get wet then, that is what he gets to sit in all day – not on my watch.
Disabled bathroom access? Does it require an outside dash, is it full of highchairs & other storage items, is it unisex or do I need to share the men’s room? Is it accessible? I have encountered a few places that are less than ordinary here. I try & explain nicely to the staff that quick access is best of all of us. I have actually been to a place that told me to access the toilets I needed to ask the people at a table to stand up lift there plates, move table, open door to let us through. Really! YEP really! I went back the next day to have a quite chat. I told them if they moved the tables slightly one way that this could be avoided. Apparently, it wasn’t the “look” they were after. I got them to repeat that. I left, I really was so shocked I couldn’t ask if the “look” was having the tables evening spaced or if having disabled people in the restaurant was the “look” they didn’t want. Sigh.
Is it fully accessible to get in? That one is getting easier most places are ticking this box.
Alcohol – Mark hasn’t had any real alcohol since 2018 – he thinks he does but he doesn’t. So, I need a restaurant that is on board with pretending to give him alcohol, ideally stocking zero alcohol beer, or just coke etc for bourbon. Surprisingly, shockingly some places are not interested in helping there. They are not on the “go to” list for dining out.
1. Repeat restaurant check list and multiply it by about 50. Some places still consider themselves accessible because they have a ramp to enter the building. After that … well that really is it.
2. Some places are so amazing it is incredible.
3. I find it difficult to really get my head around. Do they think that disabled people don’t travel? Don’t have families & still want to do the things other families do?
4. Is the accommodation that works available? They are hard to get and book out quickly because they work.
5. So, I must plan, if we are going away together.
Any way I digress … I really was talking about my long-lost friend, spontaneity.
My life is so structured now that is ridiculous. If I want to go away, I need the dates as well in advance as possible. To have Mark at home I have a team. An amazing team of support workers and therapists. Due to the nature of the industry most of these people are casual, you know the no work no pay type. Well to keep my amazing team I like to give them notice that their regular shift won’t be rostered to allow them to plan their own break or to pick up an additional shift.
If I am going away on my own, then I need to roster 24/7 care for Mark. My amazing team do any that they can, but it always means that extra support workers are needed. I need to know that the team with Mark is a team that will be ok if I can’t be reached. They do & that adds to the recharge I get. I can relax when I am away. I really need it by then though as the planning is so important.
I would love nothing more than to jump in the car & take a road trip with Mark & know that we are heading off to wherever for as long as we want. I’d love to be able to just head out with friends without having to plan. I miss these things. I suppose they say if you miss it, you must have had it. This is what I need to be grateful for.
I still get to do stuff, lots of stuff, it just means lots of planning, lots of list and lots of great support. Stroke steals a lot of things. Spontaneity is one of them. It’s an easy fix though, if only Aphasia, Cognitive deficits & mobility issues could be worked around so easily.
Planning and lists are my new friend.
Help me Fight Stroke.
Our Love Story
My Stroke Hero
I first laid eyes on Mark in July 1997. We were at mutual
friends. I was what I thought then happily married. We were at a 5th birthday
party. I recall driving home from the valley to Newcastle thinking “if I was
going to play up that’s the guy!” Really weird thought as I’d never had that
thought before and I hadn’t even spoken to him. What attracted me to him though
was watching him so full of life, how he
interacted with his son & spent all his time making sure their day was full
September 1997 my marriage is over - no not by my
instigation - I was dumped.
Fast forward to February 1998 when Mark and my
paths cross again. The same as last time we don’t speak but I’m well aware of him and
certainly spent time checking him out!
He has such a cute butt!
Mark asked our mutual friends for my number.
6 March 1998 we head out on our first date.
We were definitely meant to be together. Married 12
months to the day after our first date – 21 years now.
In our old life, pre Mark’s 2011 stroke my heart would
skip a beat as I turned into our street and I could see his car. Since Mark’s
stroke when he sees me his face will light up.
By the way my heart still skips a beat when I see him.
Seriously, we have been so fortunate to have love. Real
love. Mark taught me how to be a a great wife and a mother, this is something
I’ll always be grateful for.
He also taught me about real love.
1. When love is right it’s actually not that hard. Not
easy - but not that hard.
2. Agree to disagree - you’ll both grow and maybe start to see that there are more opinions in the world than just yours.
3. Love passionately and often
4. Life can throw you curve balls make sure you’re with someone who you both would pick first to be on their team.
5. Be with a man that never counts your shoes!
6. Learn to enjoy each other’s interests. You don’t have to love football to appreciate that they do. God knows I have no love of the game but I love that Mark get so much pleasure from it.
7. Embrace each other’s friends and family. You’ll probably find that when you do, you’ll actually love them too!
8. When you feel pissed off “It’s just a thought and it’s your thought - only you can change it” - Mark told me this if I was annoyed. I would tell him where he could mount that thought well and truly, but he was right. Once I changed my mind set things looked differently.
9. Live for the now (realistically)
10. Don’t always wait for tomorrow.
Whilst things have changed in our life, & our relationship
is definitely different, we had a great base to start with.
Stroke is a cruel, it doesn’t discriminate, it doesn’t care if you have love or not.
Yes I miss my old life but I still have my gorgeous husband.
Help me fight stroke.
“You’re Never Home” “I’d like half the social life you have” “You’re always doing something”
Whilst stroke has striped so much from Mark, and he is the worst affected here, there is a flow on that impacts both Sam & I.
Well the fact is I have a good life. I am blessed. I have truly with great friends, an amazing family and a sensational support network.
Mark has amazing support workers; they are all fabulous people. Each of them has become part of our family. We are certainly incredibly lucky. They all give Mark the best care and bring out the best in him. Help him with his home therapies, accompany him to appointments when I can’t, attend to all his care needs, joke with him, pass him tissues when he watches a soppy movie and sneak him a chocolate to satisfy his sweet tooth.
What comes with this is having “visitors” allll the time. And when I say all I mean ALL!
Some of my closest friends say – “You’re never home”.
Well the truth is ‘home’ is the one material thing I miss the most.
You know “home” – come home get in your pjs, relax, do what you want when you want.
Well I lost my home the day Mark came home from hospital back on 25/5/11. Please don’t get me wrong I’m not complaining about this in any way shape or form. I love having Mark home. I love the support workers that come. I couldn’t care for Mark on my own. I know that & the reality is without the support workers Mark would not be living at home. I need to work for both the financial and mental side of things. But the fact remains that from 8am - 6pm most days I have an extra someone in my house.
I am not sure how many of you reading this are parents but reflect upon your morning of getting ready and trying to get the kids to school. Now do that while you have an extra someone in the house. Don’t lose it, remember there’s an extra set of eyes on you all, no they aren’t there to judge, you know they don’t, they really are part of the family, but they aren’t, but they are, but they are there. I’ve done all of this as an adult, adult processing, adult don’t give a toss what people think, adult choices. Try doing that as a 10yr old. Then do it as a tween, a teenager, go on now go through puberty and do it, do your hsc, have a boyfriend, have a breakup, learn to drive, smash your car, have a tantrum. Live that life almost longer than you haven’t. How are you doing? I can’t be prouder of the young woman our daughter is. She certainly has faced more than the average kid & whilst not perfect, hey I’m far from it, but she’s a keeper that is for sure.
We do ok.
Materially: I miss my bath - I really miss my bath.
Emotionally: I really like to just lay on the lounge and not “do” some days. When I am travelling around the world or country there is always a piece of me missing, Mark. I'm lucky to have great travel companions who include me in lots of wonderful adventures but at the end of the day they aren't Mark and I'd love nothing more than it be possible to do all that I do with him too.
Parenting: I often wonder if I’ve made the right decisions. I missed not having Mark to tag at times. I was good cop, bad cop, shit cop, stuff up cop and awesome cop all rolled into one.
Reality: The decision to bring Mark home and not put him into an aged care facility is still is the right one I believe. Is it hard? Shit yeah! Is it an emotional roller coaster? Absolutely! Did it mean we were together as a family unit? Yes!
So when you see me "out and about" remember this is my recharge time. But in reality I would probably like to be a home sipping a coffee on my deck. But I know I need support workers & times out so I can be there and be strong for the two most important people in my life - Sam and Mark.
Stroke has changed our family’s world and that’s why I am asking for your help in donating to this cause.
Remember if you can't financially donate you can help by spreading the word. Sharing our story on your socials and hitting up the boss at work is a way that you can help spread the word & help the Stroke Foundation help people like Mark, Sam & me.
Thanks for reading.
A recap - last years Blog
Well I think the simple answer most of you know. I do it for Mark, my fabulous husband. He's put up with me for nearly 21 years.
Why does Mark have these strokes? The doctors aren't 100% sure but they think the most logical reason is from radiation treatment Mark had in 1979 - some 40 years ago.
From age 13 Mark's fought health issues. Seizures that couldn't be explained. At 17 (when CT technology came into existence) a brain tumour was discovered. Mark has his first brain surgery thenand told that he may not walk or talk again - not my guy! 19 - back to it again. His health has always plagued him but it's never stopped him. Fatigue was an issue and slurred speech when extremely tired.
I met Mark when he was 36 - I never knew he had these issues until he sat down and told me one day - it was more to explain the slurred speech as it was sometimes confused with people thinking he was intoxicated.
Mark never let his health stop him from doing anything. He was fit, active and by all accounts healthy.
2002, at the age of 40 Mark had his first stroke. It took a while - 3 - 4 days before he went to the Dr - his symptoms were so mild and I knew nothing of the signs of stroke. Lucky our GP did and it was off to hospital. After a few days and lots of tests we were told that Mark had a stroke. Main outcome for Mark was fatigue. He struggled for a good while to do anything more than 3days work. Our daughter was 2 and his son 12. This didn’t stop him from giving them both his all. After his weekends with his son he would often be exhausted but wouldn’t let that stop him from kicking a ball, riding a bike or having a hit or cricket or tennis. Mark never wanted illness to define him.
Life ticked along very nicely until ...
1/1/11 - well Mark had a doozy of a stroke then. A huge bleed. 5 months in hospital. What a game changer that was. Life as we knew it came to a screeching holt. A handbrake turn. I learnt what the terms ABI, TBI, Ischemic, haemorrhage, spasticity and aphasia all meant. I learnt how to use wheelchairs, lifters, hoists and all sorts of other equipment. By osmosis I became a speech therapist, physiotherapist, occupational therapist, carer, support work and avid stroke supporter.
Two businesses stopped. There was time for nothing other than trying to function. Thank goodness for fabulous family who stepped in and did so much to help with all of this and see that Sam, our 10yo, got to school, was fed, got to after school activities and provided to her emotional support that we had been zapped of.
Over the next few years Mark worked like a warrior determined to always be the “best me I can be” - his new catch phrase. I became a project manager and Mark was the project. Co-ordinating his support, appointments, therapy work, homework, everything we could do to get Mark to achieve this goal. This was now the 3rd time Mark had been told he wouldn’t walk or talk again. Not my Mark! It took years but he was able to get to the ANZAC Memorial Walk in Newcastle and 4-6 times a week he’d walk that walk. He’d add stairs. He was kicking goals. He was certainly more cognitive as his “brain fog” cleared and we did some great stuff. Trips away, laughs and lots of great memories. He really was a bit of a medical marvel making such gains that they didn’t expect. Don’t get me wrong he had many medical deficits still but my old Mark was shining through. We could discuss a lot more together, things most married couples do everyday, more things where Mark could and would give his valued opinion. His aphasia was still moderate and most discussions were 3-5 words but he could always get his opinion across. A lot more of the old normal was creeping into our life.
Don’t get too used to that.
2/12/18 - slap! Changes occur in Mark. I’ve been living stroke for 16 years by now you’d think I’d know the signs. No. I think he has a UTI so we head to the GP. Thankfully they do and it’s back in hospital for 2 months, rehab, more equipment for home and we are back at the starting line. Again Mark is so determined and fully participates in his therapy, his homework and Team Laverick learn how to live this new normal. In May this year something else has changed and there’s been a further decline. Strokes aren’t showing up but Mark’s poor brain has been put through the wringer, it’s possible they are in areas that aren’t easily visible. Whatever is going on is doing it’s best to keep taking a piece of him. What it’ll never take though is his determination, his bravery, his beautiful positive outlook on life and his smile.
I’m one lucky lady to have been blessed with sharing life with this amazing man.
Stroke has bought with it many wonderful new friends, paths crossed that wouldn’t have been, experiences had that wouldn’t have been, character building and many life lessons.
Stroke hits the whole family it’s not just the person that suffers the stroke, it’s the family and friends too. Nobody gets it harder than the suffer but all are impacted.
So I #stride4stroke for Mark, for Sam, for me and for all the stroke families I know and don’t but are affected by stroke.
Thank you to my Sponsors
Prue And Mark
Margaret A. Wheeler
Sarah & Craig
Peggy And Evan
Karen & John Metcalfe