Mourning What Isn’t Lost
Some days I have to sit and imagine her room empty. I have to imagine the sound of the oxygen concentrator silenced, hospital bed gone, the counter space currently filled with her medications left desolate, and a garage without a wheelchair ramp. I have to think about what her funeral will look like. This may sound morbid and dark, and maybe it is, but for me it’s how I get out of the dark place.
When you’re the parent of a medically fragile child, a child with a terminal illness, you live to make each day meaningful and yet also routine. It’s a battle of opposites — an ordinary life encompassed with extraordinary circumstances. Colorful days dotted with dark moments in time.
Life as Brinley’s mom is more often than not happy and peaceful. The dark days where I worry about losing her are rare. However, they are always there waiting to sneak up on me when I least expect. When I hear of another child in our tiny H-ABC family being taken too early by this disease I’ll feel the grief creep closer. When her apnea episodes last a little too long, and the nurse has to wake her up so that she will breathe, a tiny cloud of fear starts to form. A beeping sound in the store, or a certain way Brinley cries may send my brain back to a traumatic event, and suddenly the anxiety is choking me. Thankfully, the moments and accompanying panic will leave as quickly as the came.
From the first few months of Brinley’s life I was warned that I will have to bury her one day. Likely, her respiratory system will no longer be able to recover from the scarring left by each pneumonia her lungs endure. We have never known her life expectancy just that each year is pretty miraculous.
When you’re a regular in the ICU and have seen children die and heard parents heart wrenching cries, you have to face the reality that one day that will be you. I know my turn will come to plan a funeral. I’ll mourn losing her while also celebrating her freedom from a broken body.
Her bedroom will be empty.
I will have to say goodbye. There will come a morning that I’ll wake up, and she won’t be there.
If I don’t recognize that reality occasionally, it engulfs me. So a couple times a year when I feel as if the fear may overtake me I go through my therapy ritual. I picture the final goodbye, the empty room, and the oh-so quiet house. I cry a few tears and let the anxiety, grief, and unfairness of it all work its way through me. Then, I take a deep breath, wipe my eyes, put that fear into a box, and step into the present.
The fear will never be completely gone, but that’s okay because I know how to handle it. I try my hardest each day to enjoy the present and even find peace in the normalness of another groundhog day.
One day it will be my turn — but not today.
