There is a popular developmental theory in Psychology based on a hierarchy of human needs. We need the basics; food, shelter and water. We need to feel safe. Coming in a close third, is the need to belong. This need must be fulfilled before one can achieve it's full actualized potential.
I believe this is true.
We need to belong.
We need to fit in, find our nit-ch and feel validated.
It's almost as important as breathing.
This is where I fit.
Within this circle, there is no judgement or second glances when your kid throws a tantrum, in effect tossing his toys and ipad across the room.
(Our Ring 18 Family that made it to the conference this year)
Much has been written and voiced over time about the special needs' parents' feelings of isolation.
It is so isolating.
Physically, and emotionally.
Regardless of the number of willing friends and family members, we just cannot shift the burden that we as special needs' parents carry. I can't give away the hours I've lost, flooded with worry, about the life Deakon may need to lead as an adult. I cannot retrieve the lost dreams of retirement and vacations spent alone with my husband. I cannot gently pass along to another, the underlying and constant fear that although I worry most often about Deak's future aloud, I desperately pray that he will live to grow old alongside me.
We had a rough beginning to our long-awaited conference in Texas last week.
In typical form, Deak began getting sick about 5 days before we were scheduled to leave. The pediatrician and I ran every blood and urine test in the book in an attempt to decipher Deak's fever, to no avail. So, it was assumed the fever would break after the undetermined virus has ran its' course.
Well, it didn't.
I longingly looked at the other families boarding the plane with their able-bodied children, and my heart swelled with envy. I cried into Blair's shoulder and shouted in anger, when one of Deak's tantrums ended in his ipad being thrown onto my toe. I was angry and I was ashamed (of myself); quite a combustible combination.
Deak ended up in the ER a few hours after our flight landed, with a high fever that just would not break. Turned out he had some random mouth virus, that the doctor deemed "excruciatingly painful." He was prescribed loratab, and we were on our way. I'd like to say I had it all under control, and on the surface, it probably looked as if I did.
But, I was on the verge of losing my mind.
One hug from a knowing friend was all it took to open my floodgates.
Things didn't get better quickly, my poor boy was in a lot of pain for the next 3 days, and he felt strongly that everyone around him should know about it. Blair and I did our best to tag-team the sessions, but Blair, sensing my teetering on the verge of sanity, really held up most of the load. I went to dinner with a group of friends the second night of our conference, and in the midst of conversing, just blurted out, "I really think I am going to lose my mind."
She smiled, looked into my eyes and said, "I know."
Not, "I know" because she could tell, "I know" because she understood, and she had been there.
Belonging; it's what I needed to take myself to the next level and deal with Deak's illness with rationality, rather than emotion.
Deak began doing a little better Tuesday afternoon, and then really began feeling better by Wednesday evening during our Farewell Dinner and Dance. Together, he and I danced with our friends and his peers to the aptly suited song, "We are Family." Deak smiled and laughed, shook his head like Stevie Wonder and clapped his hands. I silently asked for his forgiveness for being so angry, and nestled him into the nook between my shoulder and neck, where he still so perfectly fits.
He and I, we belong together.
Deak, loving on his Shelley, and Becky an awesome spirit runner (along with her sister) for
Deak's Run for Hope. She ran the full 5k with her Special Olympic Team!
Remy and I riding the bus together.
Some of our young adult friends. The beautiful woman in the purple is living with Ring 18, like our Deak (pretty amazing, right?) The beautiful gal in the pink, is the reason we have a Chromosome 18 Research Society. If you want to be inspired, read her and her mama's story
here.
My Ab. The 10 year who handles life better than most 30 year olds I know (including me).
The Utah Mom's
Ab and her conference bff's. They are all awesome kids.
Morgan's Wonderland with our group.
Deak actually loves flying. I think the vibrations are soothing to him. Simple joys.
Deak and his hair twin; an inspiring young adult who has recently graduated from high-school.
Our fave little Ring 18 guy and his beautiful mama. They are from Canada.
My little family. I kinda like them.
Forever grateful to this place where we belong.
