Living with our “New” Normal
Eli was diagnosed with ALL on 2/8/13. He was 5½ then. There was also a huge blizzard that day, but that didn’t matter.
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Eli is just simply, amazing. He has taught me so much over the last year and a half that it is hard to know where to start when I reflect.
It was awful, shocking, terrifying and overwhelming. I cried, a lot. From where I sit now, I believe I rose to the task of what needed to be done for him and our family. Our new normal of bi-weekly trips to the hospital and inpatient stays was horrible for him. He tried so hard to understand what was going on, but to a 5 year old, it’s a hard concept to comprehend. It was painful for him.
Needles, shots, drugs, new people poking and asking so many questions. Chemo that made him feel so much worse than any of us can truly imagine. It was a turning point that makes you so deeply aware about childhood cancer and what these little bodies have to endure. Unless you have experienced it, it is something none of us can wrap our heads around. He slept in bed with me lot over the course of the year. He likes to think it’s so he can keep my feet warm and that is just fine with me. For me it was to hear him breathing comfortably next to me during the hard days when he was not feeling well and even when he was.
Just like the blizzard, we prepare. We bundle up, get our supplies and groceries ready. We pull out the snowsuits and carrots for snowmen. You brace yourselves for what life brings you. You hear it all the time, but there are no alternatives. I believe that I did. We were surrounded with good, smart and positive people with Yale’s incomparable team. Countless family and friends send good energy, prayers, love and support and are my angels. So many amazing people helped with so much. From organizations who helped with our struggling finances, endless groceries and a food train sent so I didn’t have to think about anything but Eli and his big sister Charlie. Legos, loving texts and calls, a manicure for me, flowers to brighten the home. It is incredible how big the human heart is. That is what still gets me through my days. For all that this journey has taken me through, I am blessed and grateful in ways words cannot express.
