Bedtime. It seems like a pretty simple concept. One that takes place every single day. Yet, when you parent a medically complex child, every bedtime can feel a bit uncertain. Can you relate?
As the parent of a medically fragile child, there are statistics constantly lingering in the back of my mind. I desperately cling to hope for my child, but I cannot undo the knowledge I have gained. I cannot erase the moments in which I watched my baby fight for her life, though I often wish I could.
SO, what's your statistic? For my child who has a rare and "catastrophic" form of epilepsy called Dravet Syndrome, the number that linger is 1 in 5. You see, 1 in 5 kids with this specific diagnosis lose their life before entering into adulthood.
This statistic never leaves me, and because of that I am having to learn the constant practice of choosing surrender. Day by day, moment by moment, and for some reason, especially as bedtime approaches and the darkness combined with my anxious heart threaten to overtake me.
Let me share with you my typical bedtime routine as the momma to a special needs baby:
I crawl into bed beside her, slowly easing myself directly against her little body.
She’s only been out of my arms a few minutes- Still, I can’t help but wonder if she’s ok.
I wrap my arm around her, placing my hand upon her chest.
Thud,thud,thud. Her little heart is beating.
It may seem irrational, but I go ahead and slide my arm down just enough to check her breathing pattern. She sighs and takes a deep breath.
1 mississippi.
2 mississippi.
3 mississippi.
And there it is.
3 seconds feels like an eternity, waiting to make sure that next breathe is one taken.
The rise and fall of her typical breathing continues, and my mind begins to ease.
I wrap one arm around her little legs, just to make sure there is no convulsing that goes un-noticed.
She feels a bit warm. Is she warm? I go ahead and move the palm of my hand to her forehead, and then to mine, comparing to make sure her temperature is not out of the ordinary.
I’ll just slide her blanket a bit further off her chest, to make sure she isn’t too hot.
Finally, with my body fully entangled amidst hers, I relax.
I wonder if this is normal.
Do other parents check to make sure their child is alive every night before bed?
Do other parents wake startled in the night, just to make sure there is a heartbeat?
Do other parents breathe a sigh of relief to see their child simply wake each morning?
My mind goes down a hundred different roads.
And then, I remind myself to breathe, and to be still…
And just like the night before, I whisper,
“Lord please watch over my girl.
Please protect her mind while she rests.
Please keep her heart beating.
Please let her lungs continue to breathe in and out.
Please, God, protect the life of my child.”
Then, I kiss her cheek; I pull her in closer.
And, I surrender again.
Just like I did the night before.
I surrender my anxious thoughts.
I surrender my lack of trust.
I surrender my plans for this life.
And, I surrender the well being of my child to the one who holds her life in the palm of His hands.
And at last, I take a deep breath, and I close my eyes, while my heart waits for her to wake once more.
Can you relate to this bedtime routine? Our hope is that through our journey, you will know you are not alone! How can you practice surrender today?
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