A Poem I Once Read.

Many many years ago I received this poem and after reading it I could relate so well to what the author had to say. We all want to have the perfect life with the nice house and the white picket fence, but what happens if the house is a fixer upper and the white picket fence sometimes falls over. Well thats when you realise that the perfect life is always within reach, you just have to take the time to see 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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. 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, 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.”

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

Written by Emily Perl Kingsley

And so with that said don’t let life pass you by because you didn’t get the life you expected, go out there and make your life the best it can be. Get your supper glue or you hot glue gun out and bedazzle “HOLLAND” so much that when you look at it, it sparkles more then Italy ever could!

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On New Years Day I Cried!

This is every parents nightmare, but all is ok so don’t panic!

On New Years day around 4pm I gave Ciré a bowl of his precious cheesballs! I had gotten this large container of cheeseballs from Arnold’s and had put it under the christmas tree with a big bow on it on Christmas eve. Needless to say that was the first thing Ciré saw on Christmas day, grabbing the container and ripping off the top!

Anyway on New Years day I gave Ciré a bowl of his beloved cheeseballs and he set them down on the front room table with his container of drink and proceeded to watch his movie. Knowing he was content I walked into my room and set in bed with my book. Not 2 minutes later Ciré walked in the bedroom with his mouth filled with the cheeseballs, his cheeks were so full that they were extended like Fat Albert. I shook my head and said “Ciré you can’t stuff your mouth like that” and he turned and headed out the room.

The entire incident felt so strange to me that I got up and followed him out of the room, next thing I know he is choking and the cheesballs are stuck in his throat. He is wailing around and trying to get breath and I start banging on his back to see if I could dislodge the food. Then I got around to his back and start doing the hymlic like no bodies business! Thank goodness I took a class in this about 10 yrs ago, remembered everything like it was yesterday! Now I am on Ciré’s back and have my arms around his ribs pushing up with all my might. Ciré drops to the ground and is getting weaker and all I am thinking is “My baby, I gotta get him breathing!” I continue to push up on his front area and then 5 seconds later, which felt like FOREVER! he started couching and cheesballs are falling out of his mouth. He is so weak that all of his 190Lb is leaning on me so I sit him on the toilet in the bathroom. He is looking at me, but not really seeing me and then… he smiles… AND then I bawled my head off, crying until I couldn’t cry anymore.

All of the thoughts that went through my head during that 5 minute experience. “Call mom upstairs.. no I don’t have that type of time” …. “Ciré breatheeeeeee”… “My baby, My baby” … “You will not have Cheeseballs EVER Again” …. “What would I do without my baby!”

5 minutes later, as I am still crying uncontrollably, Ciré is back to his old self and giggling at a movie on his iPad. To be so unaware! So able to get back on the horse and ride on out of there like no tomorrow! Only my Ciré! Gotta Love Him.

And me, well I got up, dried off my tears and moved on. (Tomorrow I start THERAPY! Ha, Ha)

So with that said…It’s going to be an exciting NEW YEAR! Literally!

HAPPY NEW YEAR!

Get A Room!

Ciré had a very exciting December, lots of pre-christmas outings and activities that he was very excited about. However, as usual there always has to be a little bit of drama, just to keep the blood flowing.

So on December 1st Ciré was acting kind of strange, kept tightening up his upper body as if he was going to have a seizure. Since he hasn’t had a seizure in 3 and a half years I was very worried!!! So we ended up going to the emergency room where Ciré, Paul and me camped out for hours. We arrived about 10:30 am and were advised around 1:30pm (yes, 2 1/2 hours later!) that they wanted to do an EEG on Ciré just to see what was going on in his brain, needless to say the EEG was scheduled for the next day and only by accident did they inform us about 2:00 pm that we would be there for the night so that they could observe Ciré overnight. So around 4pm (yup, 2 hours later) they took us up to the room that we would be staying in for the next 24 hours!

As the day went by Ciré’s episodes eased up and he was almost back to his normal self. He observed every person that walked in, past and by our room, as if he was expecting someone special to come. The nurses came by to introduce themselves and to ask which parent would be staying with Ciré during the night, as always we informed her that we both would be staying, which I guess is not the norm and we needed special permission to do. No worries, we ignored them and started getting ourselves ready to camp out with our child for the night (United we Stand, Divided we Fall).

As night fell, the nurses brought out a bed/chair which i nicely grabbed as my bed for the night. Paul got himself ready to sleep next to Ciré on the single bed and around 10 pm it was lights out and sleep time.

As i couldn’t sleep that well during the night, about every hour I would open my eyes to see what was happening over in the single bed, well that’s when the giggles started! At 11pm Ciré had his leg over his dad like he was spooning a girl! At 12 midnight he had his face so close to his dads that they could be kissing cousins. At about 3am Ciré was laying on top of Paul and you could imagine what that looked like!!!! By 5am Ciré was back to spooning with his dad and i could only grin to myself.

As we all started to wake up in the morning i asked Paul how did he sleep, and then I busted out laughing! He couldn’t remember all of the positions him and Ciré experienced throughout the night, but he did remember quite a few and we both started to laugh until we cried.

The things we parents do for our children, and to Paul and Ciré… next time GET A ROOM!