Tuesday, October 2, 2012

real life awesome. joanne dibsdale

this is the third installment of the real life awesome feature. where i speak with people in my life who i believe are truly awesome.way more awesome than any hollywood stars. i hope you will too.

like carla and karly, i went to high school with jo. she was one of the cool kids - but thankfully not a regina george type! i wasn't one of the cool kids, i was quiet and awkward, but jo took me under her wing.

my favorite memory of jo is her and her best friend mel helping me get ready for my debutant ball, they were like bridesmaids, making my day absolutely perfect.

i've always admired jo. in high school it was a i wish i was as beautiful and popular as jo admiration, but as we've grown i've been lucky enough to witness what a beautiful strong woman jo is on the inside. now my admiration is for her beauty inside and out.

jo is absolutely one of the people that the be kind to everybody for every body is fighting a hard battle quote applies to. if you saw jo walking down the street you would envy her life, her blonde hair, flawless skin and perfect lips, dropping off her boys who are dripping in name brand clothing to their weekly sport of choice in the the family ford territory, going home to a loving husband.

but there's the years of heartbreak and misfortune, starting over and overwhelming challenges or just below the surface that a passer by on the street can't see.

2 years ago jo gave birth to the beautiful fraser, who was born with down syndrome and a whole new world of challenges, lessons, heart break, pride, happiness and love was thrown her way.

i don't necessarily think that just giving birth to a disabled child automatically puts you in the awesome category. that's not what makes jo awesome, it's her whole story, her strength, her confidence, the way she is bringing fraser up to be just like his "normal" brothers, and the way she faces every day. having fraser has just made jo more awesome.

i know that this was hard for jo to write and the tears made it take a lot longer than expected, and for that i am eternally grateful. it's one of the most beautiful stories i have ever read, i think you'll agree.

jo gave me permission to edit and shorten the "turning point" part. but i think it all needs to be  in there. so it's a long one, but absolutely worth the read. grab the tissues.

Can you tell us a little about yourself?

I’m 34.  Have been with Shane for just over 16 years and married for 12½ of those years – I know, child bride, right?!  2 more years and I’ve been with him for half my lifetime… scary!!  Haha!

We have 3 handsome boys – Archer who will be 11 in October (and going on 21 – typical first child)!  Mason is my quiet achiever (almost classic case middle child) and he’s 6½.  And the light of our lives, Fraser, will be 3 in October as well – and he’s the typical but oh-so-not typical 3rd boy!

We live in Kerang, a small-ish country town 3½ hours north-west of Melbourne and have been here for just over 8 years.  We made the tree-change and bought a pub – every man’s dream - but the business partnership we were in didn’t last, country life wasn’t for them, so we got out of the business after a few years.  However, for us we liked the lifestyle of raising 3 boys in the country, so we decided to stay.

What is the best piece of advice you’ve been given and what did you do with it?

There’s probably not been one particular bit of advice I’ve been given that I have made it my motto to live by (as I’m a pretty stubborn, “I can do it myself” sort of person) however, a close friend’s aunt, who I only have met once or twice and who has 2 sons with disabilities wrote me a beautiful little note in a card and included in it a piece of writing called “Welcome to Holland”…

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

c1987 by Emily Perl Kingsley

It was just such a fitting little piece, at a time when we couldn’t quite comprehend what was going on.  Our trip to Holland has been life changing! 

Was there an event that was your turning point?

OK, so we had a pretty life changing event that happened on the 21st October 2009, but we just didn’t know it immediately…

We had a scheduled c-section booked for the 21st October as we knew bubs # 3 was breech – little did we know that was the least of our worries…

The cesarean wasn’t without hiccups – I had a bit of a heart issue on the table and had to keep coughing to apparently get my heart pumping back into rhythm!  It was all a bit of a blur…  The anaesthetic didn’t really agree with me and I just didn’t feel “with it” whilst everything was going on, so when they first showed me our baby, his face didn’t really register to me and I put it down to the drugs, etc. 

Archer, our eldest, was a natural birth, all 9lb 10oz’s of him and the second he was out, he was the spitting image of Shane.  Mason, our second, was also a natural birth, and a whopping 10lb 9oz’s of him and when he came out I swear I had just given birth to my father-in-law… haha!  So when my little (and I say little because he was only 8lb 11oz – well that was little for me!) Master Fraser Wilson Dibsdale first came into my line of vision, I just couldn’t see the resemblance to the other boys, or any of us for that matter.  The other 2 had whopping great heads full of black and brown hair and this little man had a mousey brown colour, but nothing on top, just around the sides – as if he was a 60 year old man, who was balding on top.  He was already wrapped up so I couldn’t go through the routine of taking my time and counting his little fingers and toes, and just going over every inch of him as I had done with the others.  It would actually be another day or two until I really got to have my first proper cuddle with him too and that still breaks my heart thinking about that too.

I actually remember Shane saying that he thought that there was something wrong with Fraser’s eyes, but I just shot him down… Sorry honey, you were onto something…

The delivery room was a bit of a blur and it took a while for them to finish fixing me up.  Fraser and I were wheeled down to our room – me on a trolley and him in a humidicrib.  Apparently because he wasn’t delivered via the birth canal, he didn’t have the “natural” compression and therefore had some fluid on his lungs, so was having trouble maintaining his oxygen levels – again, never thought to ask any further questions in my Endone / Voltaren haze…

Mum, Dad, Archer, Mason & 3 of my best friends – Mel, Al & Annie, were all there to greet us as we wheeled by.  A lot went on in our room – cuddles with Fraser, nurses and doctors checking in on us both – a lot of conversations that I cannot remember.  They were hooking me up to ECG machines to check on my heart and then I remember the anaesthetist coming into my room and squatting down and holding my hand and telling me what went on, but I have NO idea of what he said.  Like I said, the drug haze was very surreal…

Mum, Dad, Mel and Al all left to go back to Melbourne and Annie went off to work.  I remember Mum being a bit hesitant in leaving (mother’s intuition) as she’s always been with me for a bit longer after the births of our boys but I reassured them all was OK and loved that they were here for the main part.  The rest of that day is a bit of a blur, a few visitors but again, I never really asked what was going on with Fraser.

The next day my doctor came in and wasn’t happy with how Fraser was going.  His oxygen stats were still very low and he wasn’t looking for feeds, etc – I was just happy to get sleep after having a baby!  She came in and said that she wanted to transfer us to another larger hospital so that he could get checked over by paediatricians and run some tests and they could do some more tests on me.  Alarm bells started ringing a little… “what was wrong”, “is my baby OK?”, “am I OK?”

She said something to the effect that they want to check his heart and breathing and that was it.  So I trusted in my doctor and that’s what we were doing.

Time isn’t really a factor here because I honestly lost all sense of it – I’m still not 100% sure that I’m retelling my story right…

They organised an ambulance transfer for Fraser and I to go to Bendigo and a nurse was going to travel with us as well.  My doctor wasn’t happy that I wanted to go in the ambulance as I’d just had the caesarean but there was no way known that he was going anywhere without me – that I was certain about! 

Shane and I had a brief discussion that Fraser and I would just go to Bendigo, he’d stay in town for the boys and then come down the next morning after he’d dropped them off at school – easy.  I’d be right, right?

So bundled into the ambulance with Fraser hooked up to oxygen, me doped up on the pain meds and off we go, lights going and travelling at 140+ k’s.  Little light bulb moment goes off for me so I ask the nurse who is monitoring Frase, what sort of tests will they run when we get there?  She doesn’t make eye contact with me and just says, they’ll check his heart, check his lungs… and they’ll run some genetic tests too… “What sort of genetic tests I ask?” and she says “Down syndrome”

Now when someone says something like that to you, instantly you want to study your child’s face, but I couldn’t get to see his face.  I was sitting in the jump seat at the end of the trolley and he was facing away from me and there was no way I was going to be able to stand up, in an ambulance travelling at 140+ kilometres and look at his face…  So for the next 40 mins in that ambulance those words just swam around my head.

We get to Bendigo and out jumps the paramedic and the nurse and they whisk Fraser off to SCBU whilst the driver helps me gingerly make my way out of the ambulance and into the hospital… eventually they offer me a wheelchair but only after a hospital staff member mentions that I should probably be in one…

By the time we get up to the Special Care Unit, Fraser is surrounded by all sorts of very professional types studying him and talking amongst themselves – they knew why we were there, and I was still yet to look at my baby’s face again.

Eventually a lovely female doctor comes over to me - I mean who am I, just this shell of a woman, sitting in the Special Care Unit, in a wheelchair with her suitcase beside her whilst a swarm of doctors talk about my baby  - and says to me,

“So you know what we’re looking at?”  I just stared blankly back at her and shook my head, and answered with “No.”  “Trisomy 21” she continues further.  I just shake my head again and shrug.  I had NO idea what they were “looking at”.  No one had told me anything.  All’s I wanted to do was look at my baby, hold my baby and take him home.  This was not where I pictured myself being 24 hours after my precious baby’s birth.

So after the doctor’s shock wore off, she went back to the swarm, said something, then they’ve all turned around at various stages and ogled me, almost with a look of “how did you not know?”

I remember the special care nurses wanting to get me onto the ward and into my room, so that they could get me something to eat so I could take some pain meds but I didn’t want to leave Fraser there with everyone poking, and prodding and staring…

I eventually went to my room, a private room (don’t think they thought I was up to sharing) and the midwifery nurses started fussing over me.  They made me eat a sandwich and gave me the good drugs.  I think this is when I decided to call Shane to let him know what was going on…

So I pick up the phone and start talking to Shane, letting him know how the ride was and where Fraser was and where I was.  Mentioned that they were going to run tests, heart, lungs, etc and for a little bit mentioned nothing about what diagnosis the doctors had said – in my mind, they had it wrong.  What would they know?  This was my child, he was going to be perfect.  The other 2 were, what would they know?

We chatted for a bit longer and I think it just was too much for me to handle on my own, and I then said something like, “They think he has Down syndrome” and then I just broke down in tears. 

Shane was amazing on the phone – considering he’s just heard this about his newborn son over the phone from his wife, who almost wasn’t going to say anything… He was my rock that night.

Anyone that knows me, knows that I am a bit of a control freak, so my instant reaction was for him not to tell anyone.  I didn’t want to tell my Mum, my girls, our sons… no one!  The professionals have it wrong and there’s no point in saying anything and worrying everyone.  Shane was going to be here the next day and we’d be together, and by then they would have worked out they’d made a mistake and it would all be OK.

After that call, I called Mum as I knew she’d still be worried until she heard from me.  I reassured her that everything was fine, they were just running tests, he’s in Special Care being looked at, I’ve just eaten, they’re coming to run another ECG on me, blah blah blah… I told her everything but THAT…

I think I was sitting on the bed, in my dazed haze when a doctor (whose name I will never remember and who I never saw again) came in and stood at the end of the bed.  I remember just staring at him whilst he started speaking, reeling off Fraser showing “signs of Trisomy 21 – Down syndrome”.  I cannot remember what I said to him or anything else he said after that.  I just wanted my family around me, and had never felt so alone in my entire life.

After he left I rang Shane back, beside myself, told him what the doctor had told me.  I don’t remember Shane crying on the phone, but he told me later that he couldn’t break down because he didn’t want to upset the boys.  I told Shane that I needed to tell Mum and Dad and that he should call his Mum and Dad, but that was it!  No one else is still to know – control freak was in full force!

I got off the phone to Shane and called Mum back.  She knew something was wrong, obviously by the tone in my voice.  One thing I will always remember was asking Mum if she was sitting down.  She was hysterical on the end of the phone and called for Dad to come be with her.  I then told her that they thought Fraser has Down syndrome and we just cried and cried.  I was mourning so bad for the child I was supposed to have…

I told Mum that she was to tell no one but I needed her here with me.  They were supposed to be going to a wedding, my brother was best man in this wedding, so Cam was not to know – I didn’t want to upset him and ruin his best mates day, but more so, I just didn’t want anyone to know.

I text my girls - Mel, Al, Annie and Alissa (my boss and friend) – I couldn’t bear to phone them in case I blurted out what was going on.  It was basically a do not call me request, I can’t explain yet what was going on, but I will let you know in time.  I couldn’t imagine getting this message from one of those girls, yet here I was sending it after they had all just been there for me not 24 hours earlier.  I was not comprehending what was going on with my life, how on earth was I supposed to explain it to anyone else?

Shane called his Mum in Cairns, I don’t know how the conversation went, but Noela was on a plane the next morning and was in Bendigo the following afternoon!

The rest of that night was another blur.  The nurses were adamant that I needed some rest so I think by about 9.30 they’d guilted me into bed.  I wanted them to make sure that they woke me when he needed a feed – they promised me they would…

I woke at about 4am, beside myself that I had slept for so long.  I called the Special Care unit and they reassured me that they had given him a bottle as they hadn’t wanted to wake me.  I think I got another couple of hours sleep and went to SCBU.  I had barely held my baby.  My baby hadn’t fed from me.  I was the worst mother in the world.  I was beating myself up that this little human would think that his mother is rejecting him, but it was just me.  The special care nurses were absolutely amazing.  They helped me attach him for the first time, being so supportive and caring but also realising that I needed some bonding time with my baby, so they pulled a curtain around us and just let us sit and get to meet each other, properly, one on one.

I think this is where I was when Shane got to the hospital the next morning.  Just sitting with our son, nursing him, being the mother I needed to be for him, that I hadn’t been for the past 2 days.

The nurses took Fraser from me and told Shane and I to go to my room to have some time together.  We did.  How do you start that conversation, and honestly I don’t really remember?  I remember that we cried together (this was only the third time I had ever seen him cry).  I remember blaming myself.  This must have been my fault, right?  We grieved together.

Mum and Dad turned up later that morning.  More tears.  More grieving.  This was the day they were supposed to be at a wedding – celebrating, instead they were here with us, crying with us.  I asked her what they told everyone and they just said that Fraser wasn’t well and that I needed them.  Everyone understood.  It wasn’t until later that Mum told me one of my aunts actually asked her if Fraser would be coming home?  I guess I hadn’t thought about how it looked from the outside.  There was no information going out, my brother didn’t even know yet.  People were wondering if we were actually going to be bringing a child home with us…

Noela was there that afternoon, after being picked up by my brother in law from the airport.  Again more tears.

I think (hazy memory) that Mum and Noela drove our car back to Kerang and that the nurses encouraged Shane to stay the night.  They moved us to a large birthing suite, because it had a large queen bed, and so that Fraser could room in with us and we could all get to know each other.  Things were starting to feel normal… sort of…

The nursing staff were great but anytime I guess anyone asked how we / I was doing, it was always the same – lots of tears.  How else do you cope with the unknown?

During this time, so many things went through my head – will he be severely disabled, will he go to kinder, will he go to school, will I be able to go back to work, how will we survive financially, will he always live with us, will he ever find love, will he die before me?  So many questions and no answers.  And it was then that I actually had to stop myself and tell myself that he is only days old, we just have to take it a day at a time and learn as we go. 

Do you have any tricks to keep you on track?

I had to stop feeling sorry for myself – Fraser was born with Down syndrome.  Black and white.  He doesn’t have a terminal disease, he doesn’t have any serious health issues.  He just has an extra little piece in his body that made him the way he is.  It is just Down syndrome.

I guess in having Fraser, I have also learnt acceptance.  Acceptance that he is going to take longer to reach his milestones, but when he does reach them, I just want to share them with the world!  Acceptance that I can raise a child with a disability.  Acceptance that life is not going to be perfect and that you just have to keep getting back up. 

Early days I cried – A LOT – “why me” was a constant in my life.  “What did I do wrong?”  “What have I done to deserve this?”  And as I typed that last sentence, it made me cry.  It’s a horrible thing to say about your own child, but it was just heartbreaking.  We basically went through a mourning period for the “normal” child that we lost.  If I’m being perfectly honest, all’s I wanted was my little girl to finish off my family.  I had my 2 boys, and I was desperate for that “perfect family” ideal.  How shallow does that sound, but that’s honestly all I wanted?  I guess the universe had other ideas! 

Who or what inspires you?

Fraser is my inspiration.  He brings light and smiles to everyone around him.  Even if it’s just the elderly lady in the local supermarket – he’s always got a wave and a smile (and often a kiss).  Imagine if we could all live life like that?

What little nugget of gold would you like to leave us with?

I guess if anything now I find myself becoming a bit of an advocate for people with disabilities.  I now cringe at the use of the “R-word” or the term “spastic”, where once upon a time, I’m sure I would have used it myself.  I know I will be devastated when I hear Fraser get called it for the first time – and it will happen, I’m not naive.  But it’s human nature… Often we use it as a self depreciating term of ourselves, and think nothing of it, but as a mother to a beautiful son with a disability, if I can make other people aware of trying not to use those harsh words, even if it’s just that one person – who knows, one day that person could be in my shoes too…

thank you so much joey. xxx

if you have any comments or questions for jo, leave them below and i'll be sure to pass them on.

1 comment:

  1. A truly inspiring, tear jerking story. Thanks for sharing this with us Joey and Jands. I still remember the day that I received the text from Joey saying that Frazie had Downs Syndrome. That very same day, my grandad passed away. I was grieving with my family and was shell shocked when I received the news from Jo. My response to her was that Frase had come into the world to replace my grandad. They say everything happens for a reason - sometimes we question these reasons. This super cute guy came into the Dibsdales family because they have so much love that they can give him!!


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