Jeremy and I took the older kids to Disneyland on Sunday. We had a great time. Although the whole time I couldn't stop thinking that Joey should have been with us running around in a Disney costume. That I missed out on having a third kid. Missed out on baseball games and toy trucks. Missed out on play groups and yelling at Joey to get down from the tree or watching him put on boxing gloves that are to big for him and fighting with his brother. Or that I missed out on him wanting to wear his Halloween costume for months after Halloween is over. And missed out on him wanting to run in the sand and put his toes in the ocean or jumping into the pool over and over again because he likes daddy catching him. I don't hear the "I Love You Mommy" because he loves me or because he just wants to say it. He doesn't call my name when he's scared. He doesn't smile at me because he sees me making a funny face or reach for me for a hug. I have even missed out on the not so fun stuff like potty training or food thrown on the walls or crayon on the walls and markers on the couch. Or the excitement of Santa Clause and the Tooth fairy, or Easter egg hunts. Unwrapping of Birthday, Xmas and Hanukkah presents. Instead of saving money for family vacations, we spend every dime on the next therapy or medical supplies or equipment to help him walk or stand or sit. I don't do PTA or help in the kids class rooms because I'm at therapy. I miss football games and trips out with friends or to Las Vegas with husband because I'm at therapy. I have to count his calories and make sure he is getting plenty of water. No funny flavors of ice cream because that's what he wants, no blowing bubbles with his straw in his milk. No juice boxes or chocolate because it is something he wants.
What makes this even sadder is that it will always be like this. Jeremy and I will always miss out on what a typical child or teenager or adult would do when it comes to Joey. I will always be taking him to therapy, buying him therapy toys, not toys he is asking for.
Yeah Yeah I know people say be happy he is alive or be happy for what you do have or be happy he can do this or that. BUT it is hard to always be happy over these things. People say God will provide or God has sent you on this path for you, for us to learn and love. Well I want OFF of this path. I WANT a typical child. I don't want to change diapers anymore or feed my child with a spoon in a special chair because he can't sit.
I see how people get fat. I so don't want to diet. I am about 20lbs to heavy and all I want to do is eat and eat. I don't have enough time or energy in my day to always think about myself. Like everyone else I have the normal household stuff, work and on top of it a disable child. Not many people can understand where I'm coming from. Only those that live my life and you know who you are. You are my other family, my support team, my shoulders to cry on and my new best friends. Unfortunately but thank god I have you on my journey with Joey. I love you guys.
I want to say life is good, BUT it is not always good. Right now not so good for me.
As for Joey he is kicking butt. I love you son.
Ok off to THERAPY.
4 comments:
((hugs)) I couldn't have said it better myself if I tried so I'll just ditto you. Wish I could come down and hang out but I gotta pack my stuff up to move across the country. :p
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 of 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 flight attendant comes 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 guidebooks and 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 catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips and 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’ve had there, and for the rest of your life you will say, “Yes, that’s where I was supposed go. That’s what I planned.
And the pain for 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.
I have read this Poem "Welcome to Holland" a million times before. And yes even though 90% of the time I love everything I learned and all the friends I made in Holland, I still need a vacation from Holland. See I lived in Italy for a year and a half with Joey. And Holland is now made up of 75% immigrants from Italy, so it is really hard to live in Holland when Italy is trying to take over.
For those of you who don't understand this comment, read the comment about Welcome to Holland.
I agree about the immegration thing. That would be harder.
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