The Arrival of Spring
It is a beautiful spring day; warm sun, blue sky, and birds chirping. This is the day when I say to myself, “finally we have made it through another winter!” As the mother of a toddler who is medically fragile and profoundly disabled, today has greater implications than simply no more snow and freezing temperatures.
It means Levi can go outside again and his life expands beyond our living room. The room he quite literally does not leave from November to April as he is tended to 24/7 by a rotating team of 12 caregivers, 10 therapists, plus mom and dad. Levi's health is this fragile as he requires ICU-level care at home and his respiratory challenges can't tolerate cold weather.
Spring means we can ease up the restrictions upon friends and family visits because the greatest risk of colds, flu, and respiratory illnesses is behind us. It means more joy in Levi's spirit as the natural world comes to life again around him with time in the garden and visits to the park. It means Levi can re-join our extended family for birthday and holiday gatherings. It means we can breathe deeper and relax a bit more ourselves as parents because we know that there are fewer chances of Levi getting sick in a way that will bring about the end of his life.
This spring day is all of this for us and none of it, for today we received news that Levi's friend, a fellow toddler who is medically fragile, passed unexpectedly in her sleep. This little girl had some recent ups and downs in her health, but was on the upswing. And then on Tuesday, she was no more this side of heaven. News like this shakes me to the bone. It brings dark rain clouds that drench my heart. My own body feels heavier as I navigate caring for Levi today. Everytime a caregiver or therapist comes and goes from our home I think of our little friend's family and how quiet their home must be today. I am aware that Levi's life is also this fragile as his health changes dramatically in a moment with little notice.
Each night when I retire to bed, entrusting his care to an overnight nurse, I am aware. Three nights a week when we are without a night nurse and I awake at 2:00am to relieve my husband from his watch over Levi, I am aware. Each time I “pass the baton” of care to a PCA during the day or leave the house to run errands with little brother, I am aware. Each time I schedule a clinic visit with one of his 20 specialists, I am aware. Each time he has a therapist visit our home because Levi is too fragile to go to them as often as he needs therapy, I am aware. When it is 9 pm, our children are asleep, and it is the first moment all day when there isn't another caregiver in our home and my husband and I have to choose between a quiet moment together or one of us getting a moment of sleep, I am aware. When 90% of my postal mail is reports from doctors, clinics, and the county, I am aware. When on a perfectly beautiful spring day I am making plans to attend the funeral of a child who was much like my Levi, I am aware.
I am aware that my Levi's life is very fragile. There are no promises on how long he will be with us this side of heaven. Everyday beyond the first day has been a gift of grace and amazingly, thanks to incredible support from our palliative care team, Levi is four years old. Along the way, we have celebrated each milestone in Levi's life, including every new arrival of spring. Although I can breathe a little deeper today because we made it through another winter outside, I pray a season of winter will not return inside our home until the snow falls again.
