Friday, May 31, 2013

'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...


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.

The Colour Run

As I mentioned on a previous post, Daniel, myself and our team the 'Rainbow Stars' (made up of staff, playgroup friends and family involved in Novita) were participating in the Adelaide Colour Run, well we did it 2 weeks ago and it was AWESOME!!  Our team has raised close to $3,400, well over our first goal of $1,000, for Novita, as well as the money from tickets sales, which will go towards Make-A-Wish. 

Here are a couple of pictures from the day...

Thank you to everyone who has donated, all this money will help Novita in every way from helping to provide equipment, to supplying our coffee for playgroup, which is an important part of Lyla & my lives. 


An Update

Sorry I have been MIA for quite a while, I have just finished my 2nd and 3rd uni courses, so the last month, or so, was pretty hectic with final assignments and an exam... plus all the normal everyday stuff which was squeezed in.

So what has been happening over the last month...

Lyla has started a new medication called baclofen.  The plan is for it to help relax her so she will not be as 'stiff'.  I have noticed a small difference, not exactly the difference I was expecting, like more mobility in arms & legs, she just seems to be a little more floppy in the trunk.  I was very hesitant putting her on this medication, and after close to a year of discussion with numerous doctors, I decided to just give it a go... When Lyla was born she was put on diazepan (without our knowledge, or consent) which sedated her for weeks until we had fully weaned her off of it; this is why I was hesitant.  Even though it is a different medication I didn't want it to knock her out, or change her.  

She also started a new formula, up until a month ago she was having your normal supermarket bought stuff, which is not best for a child whose only source of nutrition is a formula designed for 1 year old children who eat solids too.  I was sick of spending $40+ a week on formula.  So after a nutritionist appointment (which I was also not 100% keen on, that is another story) Lyla is now on Nutrison, a pre-made formula, which looks and smells like chocolate milk (you can now imagine the looks I get when I pull out a bottle of 'chocolate' milk) and it is normally for children over the age of 10, but nutritionally, this is best for her.  The bonus of this is, it's FREE!  The downside is the end result, no one is prepared for that!

We have now started weekly occupational therapy sessions, and the occasional speech (if she is around), in the hope to 'de-sensitise' Lyla, as she is very sensitive to unfamiliar textures etc, which, for example, makes things really hard when she has her little 'blue episodes' just because someone other than immediate family touches or holds her.  We are starting at her feet and working our way up. 

We had a follow up eye check 3 weeks ago, her eyes are FINE!!  However, we will be returning in 6 months for an actual test. 

The last couple of weeks Lyla was also very unwell, never has she been so sick before and it was horrible.  She ended up with a chest infection, which as you may know, or may not, for a child like Lyla can be VERY serious, especially with a high risk of aspirating; and sadly this is how many children like her pass away.  She was on 2 forms of antibiotics + a probiotic (which was powdered and got stuck in her NG tube, and ended with a tube change) she also had to have a chest x-ray to rule out pneumonia and avoid a hospital hospital stay, but luckily she's a strong little thing and after MANY sleepless nights, she's good as new!  Following this, we had a midnight visit to ER with a meningococcal scare, luckily that was also clear.

And finally, probably the most exciting news actually, 
 We have been waiting for this surgery for a long bloody time!  There was alot of stuffing around with the date while Lyla was sick and last week her surgery was cancelled and rescheduled 3 times!  Now it is a definite for Wednesday June 5th, 5 sleeps!
The surgery involves placing a permanent feeding tube, either a PEG or Mic-Key Button, directly into her stomach, from the outside.  This means no more nasogastric tube and we will finally be able to see her face with no tube or tape!  Along with this, 3 biopsies will be done - tissue, muscle and liver.  The date cannot come quick enough, but as much as she needs this done and we want it done, I am VERY scared; I don't want her to go under anaesthetic, I don't want her to stay in hospital (staying in PICU), I don't want her to be cut open, and I do not want another repeat of our last hospital stay (I might write about this another day), but positive thinking!

Well, I think that is all that has happened over the last month in the life of Lyla, I will post a few pics too.

That is all for now