I pushed her wheelchair down the hallway, trying to push on the handles with my elbows and hold her hands in mine at the same time. I struggled to keep up with the wispy blue gown ahead of me – blue hair, blue shoe covers, yet thankfully a warm attitude.
As an operating room nurse she’d likely heard and seen everything before but even as she lead us down the hallway, I was certain she’d never seen this before. I’m sure that when she turned around to check on my progress it was a view that would be hard to match. I was wearing the same wispy blue gown, the same blue hair, identical blue shoe covers – the difference was the patient. Bright yellow deflated ball on her head, a denim vest, a ripped "pokey ball" gripped in the left hand and a knitted dishtowel firmly attached to her index finger, trailing on the floor behind and decidedly underneath the bright purple roller-chair.
As we headed to surgery, the utterances of “Tawm” could be heard coming from her nervous chatter. “Tawm”, is Bethany’s single word-call for “Dr. Tom”, a marvelous retinal specialist that is essentially the only earthly reason that she has any vision at all. When Bethany’s body and mind began working against her eyesight, it was “Tawm” who fixed the damage. When the eye was damaged a second time, it was “Tawm” who strategized how to immobilize her so her eye would have time to heal. When it happened the third time and the insurance company said “no” to paying for a third surgery, it was “Tawm” who interceded on her behalf, writing a letter that brought tears of both logic, justice and joy to my eyes. Tom’s skill has saved her vision, his passion has given us courage and his compassion has lit a flame in the heart of our 15-year-old girl.
Bethany may be “special needs” as far as labels go, but when it comes to love we’re all a little “special needs”. She knows that “Tawm” cares for her eyes and I think she’s eternally grateful for it. Before we can get to "Tawm" though, we need to get down the long hallway full of wispy blue gowns that shiffle and muffle the movements and tones of the surgical teams wearing them.
I get a special hall-pass on these occasions as I get to be part of the team assembled so the examination can proceed. You see, Bethany will in no way allow you to examine anything, anytime, anywhere on her person. A simple, temporal thermometer scan may net you a bloody nose, a trip to the scale will no doubt upset the entire pre-op area as the scale erupts into a violent, screaming tantrum. Measure her height and the rest of the day will be pure hell. Blood draws require 7 (large and heartless) adults, IV drips have never been successful and an EEG is like throwing squid on the ice at a hockey game.
We’ve learned that granting me the hall pass saves both time and money as I in my blue gown become part of the “gas-and-go” team. I’m the honorary “heavy” on the anesthesiology team. I direct who holds which foot, when they’ve grabbed a leg in a vulnerable manner, if they have enough help in the midriff or are too light on the port side. I explain to the anesthesiologist the “rules of engagement”, no chat, and no explanation for B as “she neither knows nor cares”, don’t wait for me – when you’re ready, “gas and go”…
I usually sit in the same chair; move her from her wheeled seat to my lap on this chair from which she can get no toehold. Her nervousness turns to the obedient compliance that hits you just ahead of the blind panic that you’ve not yet unleashed. Her nervous whimper breaks my heart but I know it has to be done and so I keep my tone of voice constant, assuring and upbeat – it’s a lie that I’ve mastered over the years. Holding your helpless child as someone administers a noxious gas against her will, squeezing her arms in a basket-hold while countless others hold struggling limbs, speaking calm assurances making sure you don’t inhale as the struggle intensifies. Hearing her whimper-turned-masked-scream, fade as does her consciousness. Then for a few moments, silence. The entire team waits, she’s fooled them before – springing up like “Carrie” at the end of the horror movie in a vain attempt to bolt out the door. This time, she’s not going anywhere. The machines beep and we all sit in the calm and wait.
I help lift the majority of her limp body up onto the operating table, the deflated yellow ball still haphazardly perched on her jet-black head, the dishtowel with the index finger poked through still firmly attached, the half-torn, pokey ball still gripped in her left hand. I collect these artifacts and look at that beautiful yet seemingly dead little girl and my heart is torn between thankfulness and anger. I thank the “real professionals” for their work and for allowing me to help and they are usually far more grateful to me for my assistance. I put all the trappings that B loves into the empty roller chair and move it back up the hallway hearing little more than the swishing of the gown, the muffled footfalls of my bootied feet and the muted sounds of my heavy heart pounding deep within.