We've had a nice time with family in town this week, although I think it's kind of throwing Jonah for a loop. He's been a lot fussier than usual, especially the last couple evenings. I think he's just overly tired and a little out of routine. He has been eating solids a little better, and yesterday, he ate an entire four ounce jar of baby food from start to finish. I think it was the Earth's Best Organic Summer Veggie Blend. I tasted it. It was disgusting. But I'm glad he liked it. He is also sleeping through the night every third night or so. I'd love for him to start doing it consistently but we'll take what we can get. Now if I would just go to bed before midnight.
Yesterday during dressing change he was being super wiggly and rubbed his leg on Matt's mom's arm. He never blistered, but all of a sudden, his whole top layer of skin had come off. He now has a super raw spot about the size of a lemon on his upper leg, right above his knee. Today, he was playing on his pallet on the floor and all of a sudden rolled to his tummy and then kept rolling over, a complete 360, onto his back and again onto his stomach. As he's never done this before, we weren't expecting it, and he ended up running his forehead into Matt's pants. Again, no blister, but the top layer of skin immediately sloughed off. That spot is right on his forehead, about the size of a quarter. His face is in really bad shape again. These photos were taken before that happened.
I hate EB with everything in me. I was already having a really hard time before Leah died, and now the things that I had learned to accept and deal with are making me so angry again. I just burst out into tears today when he rolled over and tore the skin off his forehead. He can't even do something "normal" that should be exciting without hurting himself and crying in pain. These poor kids. I just don't get it. Most days I'm like, "Okay this is our life. This is what we do. No big deal. We'll just do it." But I'm now in a phase where I literally think about what EB is, what it really means, and I'm mouth agape in disbelief. When you really think about it, isn't it just one of the craziest things you've ever heard? Some days, I just can't believe this is real.
And even though I never got to meet her in person, I miss Leah a lot.
And I'm so sad.
I even feel weird posting pictures. It just seems like life should stop for a little while. I remember when Gabe died really wondering how people could go to work, mow their yards, pump gas... didn't they know that time had stopped? Didn't they know my baby had just died? How could they be going on with their normal lives?
But you pick up the pieces and somehow learn to move forward. And one day you realize that the physical pain sort of sadness, the take your breath away sadness has eased a little. And eventually you smile through your tears and focus more on the reality of where they are and less on the missing them. But it takes a long time. And the journey hurts.
Leah, as I watch Jonah grow, I'll think of you and all the things you'd be doing too if you were here with us. But you've got the better end of the deal. And I can't wait to see you and Gabe and W and Baby L, all with your perfect skin, completely pain free, dancing in the streets of Heaven. We'll pick up the pieces and move forward, but don't think we've forgotten. We'll always carry you with us.
Here are some photos from earlier in the week. More to come another night.