Being the parent of a child who requires complex medical care is… complicated. The emotions are intense, tangled, and, at times, confusing. My 6 year old daughter, McLaine, has no definitive diagnosis despite years of testing, but requires far more care than her typical peers. She has an army of medical professionals who work with her, therefore we are frequent fliers at the children’s hospital. On a recent visit, it occurred to me that there is a unique duality in my feelings about our time there.
On one hand, it feels incredibly welcoming. You are there so often that the sights, sounds and smells are commonplace to you by now. You walk down the corridor glancing briefly at the eccentric painting of a dog driving a station wagon, and for the 1000th time, have a little chuckle to yourself over how strange it is. The staff knows you and your child. It’s like your own personal episode of “Cheers” because “Sometimes you wanna go where everybody knows your name.” They know your child and they know how to make her smile by singing songs or making silly faces. It’s not unheard of for a visit to end in a hug. The routine of it all is somehow reassuring.
Being a parent of a special needs child has a way of making you feel different and set-apart. You long for what seems like the ease with which other mothers connect and converse on the playground. People are often afraid to approach you for fear of not knowing what to say, and you, feeling like you have no idea what to talk about either, keep to yourself. However, being at the hospital means you are with your people. You stroll into the waiting room as another family wheels out. Your children eye each other and you and the other mother exchange a knowing smile. You sit down next to another parent and admire her son’s awesome orthotics. You strike up a conversation that covers feeding tubes, IEP’s, and therapies. The ease and normalcy you feel in this conversation would never happen spontaneously elsewhere. There is a comfort in that.
But there’s also a dark side. You shuttled back and forth from here all those seemingly never-ending days when your tiny little one had to stay behind in the NICU. Each parting was agony knowing that you had to go home and leave your whole heart lying there in an incubator. You’ve burst through those emergency room doors with a semi-conscious toddler, adrenaline rushing as you sent a prayer up to God that she would be ok. You’ve spent more nights than you care to count here wide awake, hovering over your child while a warming blanket kept her temperature stable and an IV pump beep-beeped in the background. So often you’ve held her down on this same table, her face beet red from screaming and her cheeks tear-stained as the nurse hunted for a usable vein.
Not only is this traumatizing for your child, but also for you. It sticks with you. You cannot shake it. Walking the corridors that you know so well can transport you instantly back to those scarring moments. Feeling the cold, stiff vinyl of the hospital chair against the back of your leg immediately takes your mind through each and every time you’ve had to endure the wait while entrusting your greatest blessing to doctors and nurses as they took her off for a surgery or procedure. PTSD and the haunting flashbacks that come with it are a part of your reality.
It is both a familiar and distressing place. The dichotomy of the children’s hospital has forever shaped my life.