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Don’t you wish sometimes there was a Special Needs Library? And I’m not talking about one that just is filled with books, but a library of those going through what you are in a specific moment of time. Both a resource and support section for exactly what you needed in the moment.
There are so many faucets to special needs parenting. There’s a grief section; while they are alive and when a child has passed. There’s a joy of “inchstones” and small achievements that would be trivial to the outside world. There’s a ‘I am flat out confused over durable medical equipment’ section. A legal section for I have to fight a slew of denials. A section on learning how to be alone and without a 4am friend to call when your child just had their fifth seizure of the night and you are scared.
A place where you aren’t just pulling books off a shelf but sitting together in genuine support and comradeship. Maybe even sitting just in silence because the words are too hard to utter, but with an unspeakable understanding of one another.
Where at the same time you don’t have to be quiet and whisper and are allowed to let your soul echo the loudest battle cry and heartbreak. When cursing and screaming wasn’t taboo and expressing your pain didn’t have to be suppressed. When no judgment was passed for any of the emotional expressions you displayed.
A library that served free endless coffee because you are so tired that all the words in any book are blurred from the lack of sleep. Perhaps even a snack in the name of the ever preached but elusive “self-care.”
Where you could bounce ideas off of each other completely without reservation of being attacked or wounded for your thoughts and feelings.
Where there’s no overdue book fees or fines for needing to cling to a resource for as long as you needed. Check out cards a thing of the past where we all operated on the when I get around to it honor system. Where no one would fault you if you were late, or had a prior commitment that was more pressing.
The librarians would be seasoned special needs parents now in their golden years full of understanding, compassion, kindness and endless empathy for young parents who just joined the journey. We could bathe in their knowledge, ask them which directions to go, and what to avoid.
Knowing that we’d put our heads together even if it took hours to find a solution. The place where it was just understood that mom’s and dad’s know their children best.
The library would be open 24 hours a day, so if you had a midnight crisis you could find the section you needed. A librarian would meet you at the door to assure you could easily find your way. You would be greeted with tenderness and the librarian would offer to fetch you whatever you needed.
What section of the library would you head to first? Where are you on the journey? What book do you most need to find?
Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.
Additional Needs
by Sharon F
on 22nd April, 2024
Additional Needs
by Helen Horn
on 19th April, 2024
Author of Noah's Miracle blog. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own.
View Stacy’s Profile
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