Thursday, September 1, 2011

Little Red Dress

I got really cranky this afternoon. I couldn't quite put my finger on the reason why, I just felt snippy and I had no patience. I didn't really have time to process why, I just was. So after I cooked dinner, fed Alexis, did the dishes, changed a diaper, vacuumed and started another load of laundry; I remembered I needed to put sheets on Alexis' bed. We started her first feed with her formula in her feeding tube last night and it didn't work out so well. She had terrible diarrhea this morning and it got all over her bedding. I grabbed some clean sheets from the linen closet and unfolded the first sheet. A flash of red caught my eye. Strange, the sheets are blue. I looked around and there lying on the floor was a tiny red velvet Barbie dress. It was mine from so long ago. It was my favorite. I held the soft piece of cloth in my hands and a rush of memories filled my mind. Dressing up my Barbies, taking them on adventures in their motor home, playing in the townhouse with a moving elevator and of course trips down the hall to visit Ken in the Corvette. I loved to play with my Barbies, they had parties, got married, had babies and always looked stylish! But as I continued to ponder, the tears started rolling down my cheeks. That little girl who had so many hopes and dreams, was long gone and an exhausted middle aged woman stood in her place. How could I have ever known what would become of my life. I was going to fall in love, get married and have children, but I was going to do it all! I was going to have an amazing career, marry the man of my dreams, have beautiful, clean, well dressed children and life was going to be sooo good. Then reality struck me right between the eyes. Marriages don't always work, fulfilling careers with great pay and benefits are hard to come by and children get messy, get fussy and are a lot of work. And Rett, well it wasn't even in my vocabulary. I certainly never imagined living in the"special needs" world, with gtubes, diapers, IEPs, and heartbreak.

Now I know why I was cranky. I can forge ahead, full steam and fail to acknowledge that life is hard, it's complicated and certainly not fair, but the emotions I stuff are going to creep up on me when I least expect it. There is one thing that little girl predicted right, I have fallen in love. Maybe not with the man and career of my dreams and 2 perfect, squeaky clean children as I had imagined, but with this crazy, unpredictable, roller coaster ride I call my life. I just need to slow down and and enjoy the victories, mourn the losses and just BREATH.

Tuesday, May 10, 2011

Here I go...

After reading some of my friends blogs, I've really enjoyed them and I decided to take a stab at this myself. About the title, many of you who have a special needs child will probably understand, but those of you who don't, let me explain.

When we (and yes I mean we as a family, as it's all consuming) were first diagnosed with Rett Syndrome we were given this little story about going to Holland:


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.

Now, Emily is right, Holland isn't a terrible place. But I don't WANT to live there nor do I want my daughter to, hence the name of my blog and the reason I will fight for a cure for Rett Syndrome till the day I die.

I'm sure this will be a journey and thanks for coming along for the ride.