>Last night was a rough night. It started out well enough, but, as it often happens, things kind of snuck up on me and came raining down.
I’ve already been in a funk because I fell off the Weight Watchers wagon. At first, I had wonderful momentum and lost 5 lbs. in two weeks. But I just didn’t feel like I had the support I needed, and I hit the wall. Pretty quickly and miserably, too (how pathetic, right?). So combine that with PMS, and I guess anything could happen.
We were watching “The Biggest Loser” on NBC last night, and my favorite, Jay, went home. I really hated this because of the connection I felt with him. His daughter has Beckwith-Wiedemann Syndrome, too. Read their story here. Did you notice that several of the players and the trainers had red and white awareness bracelets on? Those bracelets were Jay’s idea.
Jay’s wife, Kathy, was the person who coordinated getting our airline tickets to St. Louis for Abbie’s tongue reduction surgery donated by the airline. So, though we’ve never met in person, this family holds a very, very special place in my heart. They have been where we are now. They have walked on this path, and they know the bumps and hurdles that we will and could face in the future.
At the end of the show, it showed him going home and being with his family. His daughter is beautiful! She’s so cute. And his little boy is such a cutie, too! So, by this point, I’m crying for so many reasons, most of all, because I just hate that he had to go home. He had worked so hard and I had hoped he would make it to the finals. He had been away from his family for so long, and I just wanted him to win it.
So then they start talking about BWS and how they are planning a BWS 10K Run and I’m thinking, “Wow. Look at them, just putting thier lives out there in such a very public way to raise awareness about Beckwith-Wiedemann Syndrome!” I mean, that is what transparent living is all about.
Not long after the show went off, a friend emailed me to see if I’d be interested in some of her daughter’s shoes that she wore last spring/summer. At this point, I really lost it. I rolled back from the computer desk and just sobbed.
Unless God intervenes, Abbie will never wear regular shoes. She will need orthopedic shoes and she’ll need a different size for each foot. I have close to around a hundred pairs of shoes saved over 3 1/2 years in the hopes that a little sister could wear them. At Abbie’s last check-up, we talked about walking, ortho needs and the shoes came up. At one point, I just asked point-blank, “So, basically, I’ve saved all of Hannah’s shoes for nothing, right?”
It was hard to accept then and it was last night. I hate disease. I hate anything and everything that has taken away from my baby the normalcy in life.
This is the hard stuff. Not the surgeries. Not the hospitals. Not the constant check-ups or the blood work every 6 weeks (although, some of those get old sometimes). It’s the small ways in which her life will be different. Shoes. Clothing. Even socks are an issue. At these moments, I pause and wonder what her life will be like, how she will handle these things as she grows (probably better than me, I’m sure), and my heart just breaks. How I wish it was me and not her. How I wish that she didn’t have to go through so much.
It hurts and it makes me mad and sad and a lot of other stuff, all at once.