The Regression Rollercoaster

I. Love. Rollercoasters. Though my body doesn’t bounce back the way it used to after each ride, I love them. The jolts, the exhilaration, the unpredictability, the sheer rush of adrenaline… I can’t get enough of them. More and more I realize how accurate the connection between life and roller coasters is.

What I didn’t expect of this life roller coaster is that there are, for lack of a better word, “sub” roller coasters. I didn’t know that the dives and the rises have their own shares of dives and rises. The euphoria of getting pregnant followed by the plummet of a 10 week NICU stay. The plunge of a diagnosis after the bliss of celebrating a first birthday.

Now that I’m thinking about it… there is one type/part of a roller coaster I am NOT a fan of: darkness. Whether it be a portion of the track going through a dark tunnel or a coaster that is spent mostly in darkness, I don’t feel the same thrill… I just feel scared.

That is how most of E’s diagnosis has been for me. It was like we were blazing through, already having gone through many dives and rises, all the while with the sun on our face… and we were thrust into blackness. The turns are unexpected, the joy is nearly gone, I’m gripping the handles as tight as I can, and begging for the ride to be over. But it isn’t. And I am just scared. The rollercoaster of life has transferred to the rollercoaster of special needs… with a whole other set of sub rollercoasters, dives and rises.

Do you want to know the sub rollercoaster that scares me the most? The one that holds the darkest black for me? The roller coaster that I would choose to just stay in the station and never even board is the Regression Rollercoaster. E’s syndromes are known for unexplained, and at times severe regression. On this ride Ben will hear E say, “Papa” for 2 days and never hear it again. Dive. She will eat well, drink her bottles safely, and love to eat everything we put in front of her… and then she will suddenly fail swallow tests, have to be referred to feeding therapy, get put in line for a G-tube and throw tantrums after every bite of food.  A favorite tradition will be kisses in the mirror before bedtime… and then she will begin turn her cheek when I ask for kisses and deny my request. I will have a week of bliss listening to “Mamamamamamama”… and the next week she will not be able to even close her lips to make the sound.

In only 2 years we have felt such delight on the highest of inclines, and surged downward soon after. Any day could be the next dive: will she lose her affinity for others? Will her muscles weaken without cause? Will the easy going, quick to smile, sweet girl vanish into thin air? Will we lose all that we know E to be, and all that she has grown to be? img_0105

What will we do? How will we cope? 

Here again is where I am at a loss for words. I cannot put a smiley face sticker on this post and move on. This is real, legitimate fear. I can however search out the reason WHY I can enjoy roller coasters: the safety of the seat. The train isn’t allowed to leave the station until we are buckled in, the restraints as tight as they can go. There are handles to cling to, head rests to secure my neck, and the attendant waiting at the controls. Though the track is shrouded in darkness and is unknown to me, it is known by the creator. The knowledge of this may not alleviate the fear, but it does allow me a second to close my eyes, test the restraints for the millionth time and trust as we plunge into the dark ride.

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