Monday, 14 May 2012

Not the end of the World

His scratch is healing well
Ever have a time when you are surrounded by people who love you and care for you, but you feel a bit alone? I've been feeling like that at times lately. Since we moved to the country 6 years ago, we have had some of the best times of our life. The lifestyle here is fantastic; it's very easy going and a lot slower paced than the city. Nathan is only 5 minutes from work and we are close enough to walk pretty much everywhere. Since having Felix, however, there are times when I feel a bit isolated. 

I am so thankful for the support I receive from the online Down Syndrome Community and the frequent calls and follow up from the Down Syndrome Society. These have been invaluable to me and I feel so lucky to have that support and will never take it for granted. What I would love, however, is more face to face contact with other Mums with kids with Down Syndrome. When we were in the city earlier in the year, I took Felix to a session at the DS Society and met a group of women who I know I will be friends with for life! We caught up again a couple of months ago and it was just fantastic! Not only do they all have a child the same age as Felix with Down Syndrome, but they are all about the same age as me and most have other children. It's hard when I get invited to different get togethers and events for our kids, but am unable to attend because of distance.
Being a comedian as usual
Don't get me wrong. I am so thankful for all the beautiful Mums here, especially those I've met at Playgroup. They have included me and all treat Felix just like the other kids, which is wonderful. Inclusion is something I always want for Felix. I don't want him to just have friends with Down Syndrome, but I also acknowledge that the gap between him and other kids his age will get bigger as he grows and his friends with Down Syndrome will become more and more important as he gets older. Every now and then at Playgroup, it's hard not to feel like I'm a hundred  years old when all the other Mums are in their twenties and enjoying their first child (and I'm 41, with 8 kids and a Grandchild!)! Just like those who like netball, spend time playing netball with others who like it, or those who like going out dancing get together with others who like dancing; spending time with other Mums who have children with the same disability is something beneficial as we can all relate to each other. 

I'm sure I'll wake up tomorrow feeling positive, but hey, I wouldn't be human if I didn't have a 'down day' every now and again. 

Not the camera again Mum!
Something else that has been playing on my mind over the last week came about because of my blog. I was contacted by someone who is pregnant and her baby has just tested positive for Down Syndrome. She had come across my blog and wanted to know some more information as her and her husband were struggling with the decision of whether to terminate or not. I am not in a position to judge anyone for their decision, no matter what my personal convictions are, and I am thankful that she contacted me and I was able to tell her a bit about what to expect if she continues with her pregnancy and how beautiful our life is with Felix. But I have felt shattered, to be honest. I have cried many times and felt hopeless. I know that the termination rate when someone has a prenatal diagnosis of Down Syndrome is 93%, but this felt so real and I felt powerless to be able to do anything about it. 

I know my friends who have children with Down Syndrome will understand my frustration. I wish so much that everyone who doesn't have a child with Down Syndrome could walk, not a day, but a week or a month in my shoes. Yes, there are days when things aren't easy. I've had a few of them lately, but you know what? I had, and continue to have, days like that with our other kids. What I want people to see is all the sweetness that Felix brings; the laughs and the immeasurable amount of love. I would love people to see the positive changes a child with Down Syndrome brings to the lives of those around them. Finding out you are carrying a child with Down Syndrome is not the end of the world; it just means that the world you lived in is a little bit different than it used to be. 


Emily Perl Kingsley.
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.
So glad we landed in Holland
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.

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