Monday, April 21, 2008
Prematurity sucks. That's the bottom line. I wonder sometimes if I will ever get over it. I want to. I really do. But the fact of the matter is that I am faced with constant reminders of their traumatic birth.
orthotics...eye patches...reflux medication...breathing treatments...vomit...poor feeding...poor weight gain...IEPs...physical therapy...occupational therapy...cochlear implant equipment and batteries...low muscle tone...high muscle tone...walker...wheelchairs...appointments and opinions.
It's hard to relax and enjoy life with your family when there is so much to worry about. Sometimes I feel like it is getting better. Then I have days like I had this weekend that remind me how far from "normal" my life truly is.
I went to a family party. It was my beautiful niece's 2nd birthday, and my sister had us over with a group of her neighborhood friends. It's not that it wasn't a great party, and it wasn't that I didn't have a good time. I did. It's just that, for whatever reason, it hit me how much our lives are different from everyone else's.
The other parents sat around in the front yard and had a few beers. The kids ran off in different directions, to play on their bikes and scooters and cars, to climb on the jungle gym. You know, the usual. Some moms helped their kids get a plate of food, then helped themselves while their kids sat and ate.
That's what I want. I want to be one of those moms. I want to sit on the bench at the park chatting with the neighborhood moms while my kids run and climb and slide. I want to hand them a hot dog or an ice cream cone to eat while I finish my plate. I want to help the women preparing food and cleaning up in the kitchen while the kids play in the other room. I miss those simple things.
Instead I hold Holland's hand as she climbs the stairs to the deck over and over. John and I take turns pushing them on the swings, helping them climb on the jungle gym. I sit on the floor of the play room handing Eden the toys she cannot reach, and making sure none of the other kids trip over her as she lays on the floor. I strap her chair onto the car so she can have a turn taking a ride. I make their plates, and John and I sit, each with one, to feed them every single bite long after everyone else is done eating. He cleans up Eden's vomit and changes her clothes. I drive home listening to Holland coughing, just wishing we were there already so she could have a treatment. We take turns giving breathing treatments every few hours through the night, wondering if we need to make yet another trip to the ER. The same thing happens the following night, then Eden's nose starts running too. It never ends.
It's very isolating, this life. I am surrounded by the most incredible, supportive and loving family and friends, but still I feel lonely and often disconnected. I am sure some of it is my doing...maybe most of it. But I'm am also sure, to a certain extent, that it just comes with the territory.
Posted by John at 10:05 PM