Friday, June 10, 2016

Two Years Ago...

...Jeremiah was staying the night at the hospital with Isaac.  My aunt and uncle had driven me home.  I was in a stupor.  I hadn't slept, I couldn't eat.  I felt sick, raw, empty, numb, shocked.  I had spent the entire night keeping vigil over our little baby boy, who had almost died the day before in Jeremiah's arms.  What was wrong with him? Why was he so weak and underweight and sick? I had spent the entire morning talking to specialist after specialist, answering the same questions over and over again.  By the time Jeremiah arrived in the late morning, I really felt like it had been days since we had brought Isaac to the ER.  Looking back, it still feels impossible that only a few hours had passed between the moment that I started to think Isaac might spend his long life in a wheelchair to realizing that he had a terminal diagnosis. We had been told that afternoon, two years ago, that Isaac had "a very significant diagnosis."  That Isaac had, more than likely, only a few months to live, maybe a year. He was very weak.  One of the weakest they had seen with this type of SMA.  I sat, barely breathing, on that PICU room couch. Jeremiah was immediately at Isaac's bedside, crying "My boy, my boy!"  My aunt was on the phone to my mother, telling her to come.

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!

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  1. I'm so amazed and inspired by your grace and courage in the face of all your family has gone through. I will continue to pray for all of you!

  2. Hi Jenna, we connected a couple years ago through my blog and email and I was just thinking of you. It put a big smile on my face to find your blog and this post. Prayers for your family continuing.


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