A year!

It's April, which means I've been a 'blogger' for a year, how exciting!

What has happened over the last year? 

- Lyla had her PEG surgery

- I finished my uni courses 

- We moved back into our own house

- We celebrated a 2nd birthday

- We went to Melbourne, twice

- Lyla's disability care moved to the new NDIS

- We have worked on new skills, like standing

- Countless hospital appointments

- Met new people 

- Lots and lots of fun times & memories!

What hasn't happened over the last year?

- We still haven't found a diagnosis

It's a little bit disheartening, but it is not something that I let affect me.  Of course I would love to have an answer for Lyla's condition and of course I would like to know what the chances are of the same thing happening again is, but I am sure an answer will come.  

One day.

In the meantime, as it is April it's almost time to celebrate...

Undiagnosed Children's Awareness Day! 

Friday April 25 is the day it falls on this year, well worldwide it is, in Australia it is Saturday April 26, but as it is not as widely known or celebrated in Australia, I am celebrating on the Friday with the rest of the world.

Here in Australia there doesn't seem to be much knowledge / support / research / information / funding / organisations / etc. focusing on undiagnosed conditions.  How sad is that? 

 Lyla and I decided to do as many positive things as we can in April to celebrate and bring some awareness to UCAD, here in Australia.  We started with trying to find someone or something that focuses on the undiagnosed - we wanted to raise some money that would go towards helping people find a diagnosis for children, but we couldn't find anything like that here!  The next best option was to fundraise for the Women's and Children's Hospital Foundation so that is what we are doing.  It is a place we spend A LOT of time and a place, that unfortunately, is very important to us.

Secondly, we made a video clip.  It was a last minute idea I decided we had to do Tuesday night and I knew I needed my playgroup mums & kids to participate.  So Wednesday morning at playgroup we filmed it and that night I edited it together.  If you haven't already seen it I urge you to watch it, it's great and I am not just saying that because I made it, it truly is special!

Thirdly, I am spreading the word.  I am using the video, the fundraising and Lyla's story to get the message out there.  Undiagnosed Children's Awareness Day is just as important as any other celebrated awareness day, it just doesn't receive the recognition it deserves.

Lyla and I are going to change that!

** Lyla has her own Facebook group now, which is easier for me to update everyday life through, so for more Lyla news, head over to...

www.facebook.com/LylaPoppysJourney

Team Lyla

Back in September some of our friends decided to run in Adelaide's City To Bay Fun Run, but they decided to do it for a reason - Lyla.  They went on to create a Facebook Page dedicated to the event and Lyla, they registered a team, had t-shirts printed, held a fitness preparation group and spread the word in hopes to raise some awareness, as well as raise funds for Lyla's care.

September 12th came and we had a team of about 40 committed to tackle the 6km and 12km walk or run from Adelaide to Glenelg.  It was a great day, the weather, which looked very miserable in the morning, came through.  We set up a Team Lyla hub at the finish point where some of my family were waiting with a sausage sizzle, fruit and drinks.  We were even visited by South Australian's Premier - Jay Weatherill!

The whole event was a huge success.  On the day we had set up a little money tin for anyone who wants to donate loose change, but we ended up with around $400 in there.  The guys who organised set up a donations link, which raised $2,900 and just before Christmas Lyla received a letter from the Premier which included a $500 cheque for her.

THANK YOU  

to everyone who was involved in anyway, you made a huge difference in Lyla's life, and it is amazing to know she has so much love and support out there.

Jess

'Welcome to Holland'

I first came across this poem, by Emily Perl Kingsley, early last year and just like the our world from above post, it is an amazing comparison of our life with a disabled child.  More recently I have had numerous people mention and forward on the poem, so I thought it was about time I post it...

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.

A day in the life

On a daily basis we are judged or judge people on their physical appearance, everyone does it.  Quite often my mum & I will go to our local shopping centre and 'people watch' whilst having a coffee, but never would I stop someone and question them about their fashion choices for the day; you wouldn't would you?

I know people can't help but look or treat someone differently based on any physical abnormalities they may have, but is it okay to go up to that person and ask them for an explanation as to why they are different?  This is what I want to know, because on a daily basis, numerous times a day if Lyla and myself are out, we are stopped so someone can ask a question, or we see someone performing some kind of Exorcist neck twisting manoeuvre because they just caught a glimpse of Lyla from the corner of their eye.

Monday for example, I was sitting in the new Rundle Mall Plaza, feeding Lyla with a couple of friends, a guy walks pasts, stops, walks back, looks at Lyla points to his nose and asks "What's that for?" to which I replied "For feeding", he walks a few steps and then said "Oh I know what happens otherwise" and stands there (in a packed food court, mind you) puts his hands around his throat and pretends to choke.  Are you serious?  This is the kind of stuff I get whenever we our out in public, okay, well maybe not this dramatic, but still, I don't think its fair to be making fun of my daughter.

These are some of the questions I get or comments I overhear...

"Was she premature?"

"Is she okay?"

"What's that thing in her nose?"

"Is that for oxygen?"

"Look at that poor, sick little girl"

or my personal favourite "What's wrong with her?"

I have no problem talking about Lyla if someone ask a question, but it all depends on how someone asks me the question; when I get "What's wrong with her?" which I get quite frequently, I reply with "Nothing, she is fine" (I want to say 'what's wrong with you', but I don't have the guts).  And "Poor sick little girl", well actually she's not poor, she has a great life and she is not 'sick', in fact she has never been sick! *touch wood* At the end of the day, or by the time they walk away, they've forgotten about Lyla and they don't really care 'what's wrong with her', so why should I be expected to tell them anything?  

So the next time you see someone who looks different or acts different - like that child throwing a tantrum in the supermarket, maybe take a second to think about how your looks are perceived to that child or carer, or those questions you ask; are you asking them because you really care and want to know, or because you are nosey and want to know why they look different, or that child throwing a tantrum, did you think maybe this child has a disability like autism? 

Just a thought.

Jess

Undiagnosed Children's Awareness Day

Tomorrow, Saturday, April 13 is 

'Undiagnosed Children's Awareness Day' 

 Between 30-40% of children with special needs do not have a diagnosis.

Show your support to Lyla and all the other undiagnosed children out there, by wearing blue tomorrow. 

Jess

The first two weeks...

Almost 2 years ago, to the day, Daniel & I found out we were expecting our first baby.  We were close to half way through our big UK / European holiday (in Dublin actually) when we found out I was 7 weeks pregnant.  I had a completely 'normal' pregnancy, nothing out of the ordinary, not that I had anything to compare it to, but as far as we were aware we were having a healthy baby, a girl in-fact, due December 8th, 2011.

November 23rd, 2011 came by, I woke up at 5am as my waters were breaking (in bed) and contractions started soon after.  My birth plan was to have a natural labour and delivery, and a healthy baby and mum at the end of it.  19 hours of natural labour went by when I ended up having an emergency c-section, emergency in the sense that it was not planned, not that anything was wrong; I was stuck at 9 cm for close to 5 hours with no further progress.  1:07am, Thursday, November 24th, 2011 Lyla Poppy entered the world... But not as healthy as we were expecting.  This period of time was a blur for me, actually the first couple of weeks of Lyla's life is a blur to me.  Lyla was born, and as far as I knew she was 100% ok and required special care because that was what c-section babies usually required.  I was in recovery when I began to be bombarded with random questions from nurses like 'was your pregnancy normal?' or, 'did you take any drugs or medication during your pregnancy?'.  It was pretty apparent to the nurses and doctors that something was not quite right with Lyla.

Several hours later Lyla was brought to my room for a feed, which was unsuccessful.  A few hours later I was visited by a doctor who broke my heart when he said Lyla was not well, exact words I no longer remember but he was with me for some time, slowly killing me.  A few minutes later my husband and mum arrived and I somehow had to tell them what I was just told.  I was finally able to get out of bed, have a shower and go around to the special care nursery and see my daughter, she had a naso-gastric tube inserted, but she was perfect and beautiful and no matter what anyone said to us, or the amount of bad news we received it did not change how we felt for her, 'healthy' or not.

That night Lyla and myself were transferred from Lyell McEwin hospital to Women's and Children's Hospital, where she spent the next week in ICU and SCBU.  Lyla underwent a number of MRI's, EEG's, lumbar punctures, blood tests, x-rays, eye tests, muscle tests and anything else that they could possibly do to her during that first week; and we were met with a range of doctors and specialists, who all had some kind of bad news to share with us.  We were told Lyla's brain had not fully developed which will leave her severely disabled and her life expectancy would be anywhere between a few months to 1 year.  We fought to get her home as soon as possible, but firstly she required another stay at Lyell McEwin Hospital.  Another week on we were able to bring Lyla home and we quickly settled into everyday life.

...

Lyla is now 16 months old, beautiful, cheeky, feisty, for the most part healthy, but most importantly, alive!  She has not hit any of the major milestones, but that means nothing to us, it just makes you appreciate the smaller things she can do... Like the first time she opened her hand (slightly), or tracked us as we walked past her, which was only 7 or so months ago.  These are the things people take for granted, but for us, these are the biggest achievements. 

No one can ever prepare themselves to be blessed with a disabled child, yes blessed!  And even though we had no prior warning, Lyla was welcomed into our family just like any child. 

I hope by starting this I can shed some light on disability and let people know it is not a disgusting thing, and these special children are no different from any other child, though they may look a little different, or walk a little differently, or eat a little differently.   I also hope by spreading some of the little knowledge I have, will help families who may be in similar situations and let them know they're not alone and there is amazing support out there.

Jess