Saturday, January 15, 2011

My New Life

I've been thinking a lot lately about how different my life is now, certainly different from what I expected it to be that goes without saying but different now than what it was a year ago and even more so 2 years ago. Last year we had just started on this journey with Joshua, early intervention and therapy, it was all new and the idea that he was delayed was pretty new too.

I view things differently now. I am on lots of sites geared towards moms with kids with disabilities and I keep finding new ones. Stories that wouldn't have touched me as much before really do now.

I had a friend who has a child with Autism, she wasn't ever a close friend but now she's not my friend at all. She works in her state to help parents with children with disabilities yet she completely abandoned me. She's supposed to help other parents yet she criticized me for complaining, I guess she doesn't remember how I'm feeling now, how she felt a few years ago. I know she wasn't ever really my friend in the first place but it hurts more because she has a child with special needs and she wasn't given much hope when she got his diagnosis, he's doing phenomenally now. I could never do to someone else what she did to me. I think I'm entitled to complain more. I am envious of parents who complain about their children misbehaving when Joshua can't misbehave the same way.

I am constantly looking for new apps to download for Joshua's future iPad. We have about 70 apps now, not all for him but most of them are. All are free either lite editions of apps or were on sale so I got them for free.

I sent Joshua with my husband to his family's for Christmas Eve and Christmas Day. Since it's not my holiday (I'm Jewish in case you didn't know) and I decided I really needed the break. I was warned about missing them but is it awful to say that I enjoyed my break? I will admit having the house to myself for that long was a little strange but it was nice. I am now planning a trip to visit my niece and her family in March/April, a weekend I think, my first I hope of many, I hope to make it a yearly thing.

I am going to my first special needs conference in a few weeks. It's local and through Family Connection of SC, I think it will be really good. I know I wasn't ready last year but I am more ready now. I am feeling more and more like this is where I belong, not by choice but by need. This is where I need to be. There is a really great video I saw recently that really sums it all up.

I don't know why I'm on this path or why Joshua was the child chosen for us, maybe one day it will be more clear to me but for now this is where I am. When I can I take breaks to do things I enjoy because too much focus on special needs is too overwhelming for me but in small segments broken up I can handle it. I think I am doing better at handling things a little bit, it was a bit shaky there for a while but I am feeling ok.


Amy said...

Elizabeth I love the video! Totally made me cry!

You have probably already seen this poem but my mom loved it. Sorta tracks with your blog about your new life!

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.

Elizabeth said...

Thanks, Amy. Yeah it's a great video and yes I know that poem and it's really great as well. It's printed on a Family Connection brochure I first got when Joshua started early intervention.

Elizabeth said...

Although I don't like the part about the pain never ever going away, maybe that's the case but I'm really trying to stay positive and keep away from anything negative right now besides that may not be the case for everyone, it's all still very fresh and new so the pain is there but I'm doing all I can not to focus on it.

Heather said...

Hey Elizabeth! It's Heather from 5MinutesforSpecialNeeds!

I'm going to give away the secrets of the special needs get to grieve. You get to have bad days. You get to be mad. Sad. Angry. Happy. Tired. Scared.

And I time goes on, your days start to get better. It takes a long time. I still have plenty of bad days. Days when I wish I could stay in bed and pretend none of this happens.

Just know you have a friend. And I'll be happy to talk any time!

Email: Heathersebi at gmail

Elizabeth said...

Thanks Heather! I honestly have more good days than bad, better if I don't have time to think! Joshua's a very happy toddler (unless he's teething).