Over the course of the past year and a half I get a lot of compliments on what a good job I am doing. A lot of people wonder how I can do everything I do without breaking down. The truth is that I don't. I break down often, almost daily, and it's not really getting much better. Usually I am able to snap out of it without too much trouble, just by venting to John or my mom or one of my friends, but other times I go days just feeling sad and terrible. I'm kinda in one of those funks right now. When I am around other people, I just smile and carry one, so many people who know me might not have a clue how I am feeling. I don't talk about my true feelings often, to many people, because I know it is hard for people to understand and it makes them uncomfortable.
What's been hitting me hard lately is the permanancy of Eden's disability. I feel like I can bear anything for a period of time. I can lie upside down in a hospital bed on magnesium sulfate for days if it means my babies will have a better chance. I can spend seemingly endless days traveling back and forth to the NICU visiting my babies, part of the time not even knowing if they will survive. I can endure watching my children go through surgery after surgery. I can sit at a breastpump for tortuous hours every day to give my babies the best nutrition I can give. I can spend hours everyday trying to get them to eat so they will grow. I can drive to an infinite number of doctor and therapy appointments. I can give meds. I can do PT visits twice a week, and countless hours spent stretching and exercising at home. I can even handle the sleepless nights, the temper tantrums at nap time, and the food slinging that happens every time I want them to eat. I can do, and have done, all of these things with the hope and knowledge that it won't last forever. If I can just get through today, tomorrow won't be as bad. It will be worth it.
The problem is that it's not going to end. It's forever. She's not going to get better. There's not going to be a morning that I will wake up and Eden will not have Cerebral Palsy. And I can't stand it. Mostly I can't stand it for her sake, because it is so insanely difficult to see her struggle, but I also cannot stand it for selfish reasons. I often feel like I have lost myself. I will never be the person I used to be, or the person that I wish I could be. I'm afraid that I will never be truly happy and carefree again.
Eden's CP is becoming more and more apparant to everyone, even people who don't know her. The logistics are difficult. We have to plan ahead for everything to figure out how she will be able to participate. When we go to restaurants we bring her infant carrier in the back of the car for her to sit in, while Holland sits in a high chair. I often overhear people talking, trying to figure out if they are twins. They always decide they are not...because Eden must be younger. Unless they are in their stroller, no one really asks if they are twins anymore. Holland attracts a lot of attention, and people always stop and talk to her. Most times they do not talk to Eden. Even people who know us will generally talk to and play with Holland much more than Eden. I'm sure it is because people are not sure how to hold Eden, or how to interact with her, but it is still hard for us to see. We try to give her a lot more attention at home to make up for it. We also try to set a good example for others so they can learn from us how to interact with Eden.
I always thought having twins would be hard, and I was right. Having a preemie is also very, very hard. Having a child with a disability must be one of the hardest things life can throw at you. I suppose one of the only things that would be harder is NOT having her. Yes, that would be harder.