I have heard Isaac's story repeated over and over again on the SMA support groups. Newly diagnosed families being told that their child is so weak, they may not make it home from the hospital, they may not make it a year. But then, like Isaac, those incredible fighters and their incredible families get it together. They start to breath again, to take on their lives as they now are. Last spring, I asked God to give us just one more summer with Isaac. Last September, Jeremiah and I thought Isaac was ready to go, and we said our goodbyes. Yesterday, I took the kids to a concert in the park. Jeremiah and Isaac snuggled on the cough. Today, Isaac and Natalie and I played with a box of insect crafts. Jeremiah and I laughed as Isaac held onto a toy knife, wriggling his wrist along as the chef on a cooking show chopped some vegetables.
It is easy to look back on that diagnosis day, to feel bereft and broken all over again. A few moments of thought and that knot hardens in the pit of my stomach. The memories of those emotions become more vivid than my memories of this morning, and they become emotions again.
We have lived for two years now with a daily life full of Natalie's songs and laughter, Isaac's giggles and switch toys, and a home invaded by equipment, nurses, therapists, case workers. It requires planning, patience, and commitment to get out of the house with both of our kids. We have managed, with the help of family, friends, neighbors, and strangers to pay the bills, make some improvements on our home, and have food on the table. We have become a very close family, sacrificing more than I think we otherwise would have for the good of one another, for the sanity of one another, for the sake of one another. I may not say enough how grateful I am for Jeremiah's strength and patience and sacrifice. I may not say enough how much joy Natalie brings me despite how often I have to tell her to put on her shoes and brush her teeth. I may not spend every moment that I have with Isaac to the fullest. But I love my family so much that sometimes it hurts. Sometimes it doesn't seem possible that I get to spend my life with these beautiful people. So I want to thank them, as I often thank the rest of you. Jeremiah, Natalie, and Isaac, thank you for making me the wife and mother that I am, for bringing me so many moments of laughter and love every single day. Here's to the next two years.
|Hanging out on the couch while Natalie was at summer camp!|