My hero reminds me of the tulips in Holland
On many nights like tonight, I wonder what it would be like, if my son didn't have underlying medical issues... The kind that every so often leave me feeling like I've been kicked in my gut.
My beautiful, wonderful, fierce child, is the same child who leaves my heart sad on nights like this one. My nineteen-month old son has an extensive medical history ( a story that's an unfinished book in itself), is home on life supportive medical equipment.
Tonight my son required his trach tube to be emergently changed. I knelt over my son, began bagging him with Oxygen, and watched his vital signs, and clinical changes, praying he would fight through his respiratory distress. Shortly after my son stabilized, I began my usual pacing and restocking necessary medical supplies that are kept in his bedroom. You see, if I don't keep moving, I end up exactly where I am at this moment. When the scare (and chaos quite frankly) settle, I start to melt. Right into this chair I'm sitting in, next to my sons crib. He's safe. Sound asleep. I sit here and replay the event. How could I have responded quicker? The fear that was seeping through my pores while I cleaned up after the event is gone. I'm left with the emotions that follow the fear. I tell myself it's merely Mother's guilt, and human nature to wonder how things could have gone differently.
There's this sting that happens to me after events like tonight. It's a sting I believe comes from a place of goodness, and gratitude. The sting is cold, in all of its rawness. It washes over me, reminding me just how lucky I am to have my son. He is brave, resilient, and the fire that burns in him, well I'll take partial credit for that. If I had to place tonight on a scale, a real scale that shows Abel's life, his truths, his battles...tonight was pretty light and brisk. The weight this child has carried ( and I too, have shared the load in my own way), is far more than this evening could even compete with.
You see, as a Mother to a child with complex medical needs, there is no rest. When the mess was cleaned that I felt had taken over our evening, my heart still reminded me I felt sad. Sad that my child isn't "normal". Maybe sometimes the selfish part of me wants so badly for my child to have better health, so that he could sit at the dinner table with me, do that whole "co sleeping" thing, or even go for a walk or a car ride without packing up more medical equipment than I can carry. Sad that I can't predict when he will be in respiratory distress. Don't Moms naturally have the super power instinct?
Let me clarify:
The miracles always drown out my fears. My son always shows me how important it is to embrace the moments with him. I thank God for the ability he has given me to be able to see past the sadness and devastation in the moments I feel weak. The mountains aren't behind Abel or our family. But I'm aware of just how precious his life and smiles are. The cloud that gives shadow to the goodness we are fortunate to have, is brief.
Nights like tonight, can make me feel like Holland is a place that bears too much weight on my shoulders. If that holds no significance to you, I recommend you check out Emily Kingsley's poem "Welcome to Holland", especially if you're the caregiver to a medically complex kid, too. Just as I metaphorically explore Holland, asking myself just how I got here, my son opens his eyes and grab my attention, to go over to his crib for playtime. "Tulips" are quite lovely, to finish off the night.
"But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." (Emily Kingsley, Welcome to Holland)
-Dee
(Founder and proud owner of My Hero Calls me Mama LLC)