Monday, May 30, 2011

5 Years Ago Tonight...

5 years ago tonight was the eve of the birth of our 2nd daughter.

5 years ago tonight I had a BLT at exactly 11:55pm. I remember the time because I had a C-Section scheduled for the next morning and was not allowed to eat after midnight. So my husband made me a BLT so I wouldn't wake up hungry.

5 years ago tonight I couldn't sleep. Neither could my husband. I had a very bad feeling that something was going to go wrong with the birth of our daughter. I didn't know what was about to happen, but I just had that awful nagging feeling that things weren't going to go well. So we laid awake all night, just watching the hours go by.

5 years ago tonight I had no idea how much our lives were about to change. We didn't know the nightmare we were about to be thrust into. We didn't know that for the first time in our marriage we would have to face such heart wrenching decisions involving our child. We also didn't know how strong it would make our marriage.

5 years ago tonight was my last night as a mom of just a typical child and my journey as a Mom of a child with special needs began. I just didn't know it yet.

5 years ago tonight- so much has happened since May 30th, 2006. I have learned more medical terminology than I ever wanted to. I have seen my child on life support. I have taken her to have an MRI and to get stitches in her head. I've sat and listened to a doctor tell me my daughter has brain damage and would never walk on her own or be able to do "normal" activities. I have worked with therapists to make sure that doctor was proven wrong. And he was. I have seen her fall more times than I can possibly count- and seen her get up and keep on going. I have watched her dance in her first ballet recital. I have taken her to her first day of school. I have watched her perform in a play with speaking lines- and get them all right!
We've been to Holland and then Italy ( if you've read the poem and have a child with special needs, you will understand what that means).

5 years ago tonight I started learning who my true friends are- the ones who stuck by us through it all- the good and the bad. The ones who didn't walk away when I couldn't handle being social- they understood my need to lead a quiet life for a while and supported me through that time. The ones who celebrated Sammie's triumphs with us, and still do. The ones who let me cry on their shoulders when I needed to, when I was feeling overwhelmed by all the uncertainty. The ones who never ever judged us, or how we raised our children, or why we had another baby. The ones who love Sam just as she is, and love us just the way we are.

5 years ago tonight I had no idea how much that one little girl about to be born would change me as a Mom and as a person. I had no idea how she would change my relationship with my husband. We had to learn how to work together even more than we already did. We became closer through her struggle to live, and through our struggle to make sure she has as normal and happy a life as possible.

Tomorrow morning when Sam gets up there will be birthday presents waiting for her, and we will have a special birthday breakfast. To her, it's a day to be special, to get some new toys, and bask in all the attention. To me, it's another year she's here with us. Another birthday that at one time I was so afraid I wouldn't get to celebrate with her.

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.

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.
c1987 by Emily Perl Kingsley. All rights reserved

Happy 5th Birthday to my Sammie. And thank you for making Holland such a beautiful place to be.

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