The Tale of the Hangry Teenager

This morning I awoke with thoughts of the last several days rolling through my mind. Jayde-Rhiannon 's final day in the hospital, my best friend asked me while visiting, “What do you do all day?” I responded, “Take care of Jayde, talk to doctors, fight with nurses who don’t listen, take care of Jayde, talk to doctors and take care of Jayde.” Sounds kinds of boring, right? Jayde and I spent seven days together, sleeping a few feet away from each other. We did not watch movies or TV as we had planned. I turned on my laptop twice, for a total of one hour. I took several magazines and two books, they remained in the suitcase. I began the Facebook updates because it was easier to make one post than answer twenty or so texts and phone calls. The posts also freed up more time to concentrate on Jayde. When she finally regained her voice, we talked a lot. The silver lining of the entire experience…because I always need to find one…was the quality time with Jayde. If we were sitting on a beach instead of in a hospital, it would have been the recipe for a perfect girl’s trip. Alas, the “girl’s trip” is over. 

As difficult as it is to recover when you are in the hospital, recovery transforms into something completely different once you leave the pediatric ward's halls. A few nights ago, our fierce, red-headed teenager, full of attitude, stomped down the hallway, proclaiming, "I am NEVER eating yogurt, ice cream, or smoothies EVER again!" Maybe it was my exhaustion...okay, it was definitely my exhaustion...which prevented me from blurting out what immediately came to my mind. "This too shall pass." Thankfully my common sense has not been affected by my exhaustive state of being. I was quick to remember the sage advice given to me by my Aunt when Brady was young, "Pick and choose your battles." Numerous individuals have empathized over our situation with the comment, “I do not know how you all do it.” My standard reply has been this simple truth, “You roll with it, or it will roll over you.” 

Over the past week, Jayde has helped Chris and me understand and appreciate a new emotion…hangry…a pleasant combination of hunger and anger, which simmers to a rolling boil, then served when least expected. Today we moved into phase two of Jayde’s recovery…the soft diet or mush. I feel like I have become the food Nazi every time she requests a specific food, and I must answer, “No,” yet again. Some of the recent battles are ones we have no choice in fighting. The battle of the hangry red-head did not need to be fought…only understood. Since our arrival home, life has been a rollercoaster of emotions and adjustments. Though we could have come home a day or two laterJayde said it was time. Upon arriving home, one of her first declarations was, "I don't want to be here...we should have stayed." Her comment was understandable. Still, it was difficult to hearknowing the apprehension behind her statement. 

Chris and I have straddled a fine line in this journey. Jayde is a child…still, at almost 17, she is no longer a baby. Throughout this experience, the decision process has not been one of mom and dad...instead, mom, dad, and Jayde. Had just one doctor listened or paid closer attention while she was younger...this scenario would be very different. There would be no frank discussions about what this diagnosis means or what this or that procedure will do to help her. However, you cannot undo the past, which I reminded Jayde of when she stated she would rather be back at the hospital. Ultimately this is her journey. It is her body…in a few short years, we will have little say. Knowing this, we spent a great deal of time guiding her throughout this medical adventure, overriding her only when necessary.

Our job as parents is to prepare our children to become productive, successful adults. For most parents, this entails teaching their children how to cook, manage finances, do their own laundry, household chores, maintenance, etc. You do not picture yourself teaching your child to navigate doctors, nurses, and the healthcare system. Then again, most parents do not have children who will deal with intense health issues for the rest of their lives. Everyone’s picture looks different. While the past few years' battles are ones I never pictured for our family or our beautiful daughter…it is always good to remember that if you are too caught up in what you think life should look like, you will miss the beauty in front of you. Sometimes, beauty is in the form of a hangry teenager, and you just have to roll with it.

#jrsjourney #POTS #dysautonomia #SMAS #SMASYNDROME #silverlinings


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