Dreaming of Desserts : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.

Dreaming of Desserts

by RNE submissions on 09/19/18

by Jenna Anne

Time is something that a parent of a medically complex child learns very quickly not to take for granted. The time spent waiting, praying, and preparing. The time that seems to tick endlessly slow or faster than you can blink.  Being a mother and raising these tiny humans there are great milestones to mark how they grow and change. They smile for the first time, sit, crawl and walk. They go off to school, make a new friend, score a goal or Dance on stage, they make their own breakfast and sometimes even yours! The barely thawed waffle and half a stick of butter turn into scrambled eggs and toast with jam. And at a point you look back and wonder what happened to bubble beards and a tub of toys? The big milestones are celebrated and marked in books but the small ones are the ones that etch your heart.

I've come to see managing this controlled chaos like a fine dining experience. The fancy wine cornette to pour the wine into your glass from, drinks infused with exotic fruits or the seemingly excessive required utensils that each serve a purpose to help you better experience the 6, 8,10 ...courses that remain. A lot of the time we are focused so much on the future that we all rush through to get to dessert!   Will it be sweet and savory, bold and flavorful or will we be too full and sip coffee instead. Therapy, after specialist, after doctor and it's easy to get lost in the "what's next". The rehab the therapies the monitoring and all everyone sees is that delicacy at the end of the meal. But what about your hors d'oeuvres? Your entrée ? These are things to savor as well.

Even when time is at its worst. In the thick of the deepest despair we need to remember to SAVOR it. Each morsel of life we have we need to cherish. We are still here. A baguette sword and china plate to shield we are ready at a moments notice eternally en garde. We carefully chew around the brittle bones of poor news and uncertainty and relish in each spoonful. If you're always waiting for the next course you will never truly appreciate and enjoy what is on your plate. Sure it may be exciting and wonderfully delicious or the maybe waitstaff will drop the tray and spoil your food. We can't predict what comes next. I have made it a point to really appreciate what is in front of me and teach my children to do the same. There's so much energy placed on "later" we hyper focus on these "goals" that we lose ourselves in the process of getting there. Life isn't about the destination it's about the journey. Don't focus so much on dessert that you don't savor what is on your plate. Live life with a banquet of options, add the hot sauce and try something new  à la carte,

Dessert is a tray away but for now I am savoring the most delicious spoon full my taste buds could ever imagine.

Bon Appétit

Life Unbalanced and Unabridged,
Jenna Anne

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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