From day one friends, family and the community rallied around us. Close friends started a bi-weekly meal train and grocery shopping for us. Every week meals came and the love came with it into our home. There were weeks that would go by where we could not get out of the house for fear of Eli’s immune system being exposed to germs.
A text, a call, a hug, a cup of coffee, a warm scarf, a manicure gift card, flowers to cheer up the house, food, Legos (which became his new obsession being cooped up in the house), financial support and just incredible love is what is getting me through this. With everything big and small that people did for us, the incredible kindness and thoughtfulness overwhelmed me. People who didn’t know us appeared in so many ways, and still do.
There’s no time for drama when you are trying to save your child’s life. The intensity of our lives has been heightened. Relationships have been tested. My husband and I have been feeling the pressure, but there’s no time for drama when you are trying to save your child’s life.
At the beginning of this journey, a friend in the community introduced me to a woman whose daughter had something similar to Eli, and who was also at Yale. She was there for me in every way possible. Her mantra, which I have since adopted, is “forward march”. There is no other way. There are no shortcuts, no quick fixes.
No one ever imagines having to go through something like this with your child. We go back to Yale twice monthly now. It’s become our new normal. Eli lets the doctors check him out, mostly now with a smile since he knows there are games there to play, books to choose from and amazing people to talk to and play with.
Eli is the bravest boy I know, and I watch him with wonder every day that he is doing what he is doing. I am trying to take his lead and be as strong as he is. Some days it works and others it doesn’t. I love to see him smile and laugh and even scream and stomp his feet. He may not remember all of this, and that’s more than ok, I will bear the burden of remembering it, and one day that will be ok too.