We call him our little “Joy Boy” because he is exactly that. Dylan’s smile can truly light up a room and his funny little “quarks” can turn any frown upside down. His affectionate hugs can warm up the coldest of hearts. His deep giggles can soften anyone up and make everyone laugh.
Our “Darling Dilly” has the very best of superpowers…He brings out LOVE everywhere he goes.
There’s no doubt that any diagnosis involving disabilities can be extremely painful for a person to process. As Dylan’s mother, I believe we are entitled to that grief, as having a child like my son involves many losses in which we will never get to experience. However, compared to going down the typical path of life with my daughter, I have found the atypical journey with my son to be LOADED with more blessings than I could ever include here. These are a few that I’ve written down over time. Although there’s a vast range of ability levels in those with MED13L syndrome, if your child happens to be nonverbal and severely intellectually impacted like my son, you may find that this kind of life can still be wonderful too…
My Family is Blessed Because
- Our child is able to bring out the best in people
- He motivates me to become a better mother, Jordan to be an involved father, and Brooklyn to be the best sister she can be!
- We have learned the TRUE meaning of empathy, compassion, kindness, and love.
- We’ve found excitement in the simple things in life just by watching Dylan interact with the world, such as…delightfully popping bubbles and squeezing Orbeez balls with amazement. Bouncing on his trampoline while watching his favorite shows for hours. Watching his “fan friend” whirl around and smiling at it with wonder. Playing “peek-a-boo” with me until his tummy hurts from giggling so much. Rolling a ball back and forth and playing a fun game of “catch and fetch.” Gazing at the gorgeous landscapes on the TV’s screensaver with fascination. Smiling and cooing at trees as he watches their sun-glistened leaves blow gently in the wind. Endlessly laughing and squealing in delight while watching the clothes wash and dry in the machine. Hugging his mommy, daddy, and sister like a little koala bear until he’s too weak to keep holding on!
Jordan and I will never have to face the sadness of the “empty nest syndrome.” We will always have our sweet son by our side.
I’ll always be his “first lady” and I won’t have to share him with anyone other than his sister! 🙂
He will likely never “tell us off” or say that we screwed up as his parents
He will *probably* never lie or manipulate…and if he does, it would undoubtedly be over something innocent.
We won’t have to worry about him teasing or bullying others – big fat NOPE!!
Brooklyn’s kids will have the coolest “Uncle Dilly” ever, who will likely be the guy who will get on the floor and happily play all day long with his nieces and nephews.
We will never have to worry about him sneaking out of the house, breaking the law, drinking and driving, or even just driving!
He’ll never become a drug addict – phew!
We get to enjoy the “VIP” treatment and opportunity to park in front-row handicapped spaces when he’s with us, not to mention free fast passes and national park tickets, good movie theater seats, better access to subway seats, and even roomy bathroom stalls – haha.
He won’t care what we wear or what we look like.
Better yet, he lets me dress him however I want!
He will just love us for who we are and won’t wish we were any different.
We will always have our “baby boy” who gives us endless cuddles, smiles, laughs, and the most beautiful unconditional love.
- We experience a super-charged level of thrill when Dylan reaches new milestones or learns new things!
- We get to connect with so many amazing people and have adopted them into our growing family, such as: the MED13L crew, Dylan’s caregivers and nurses, his teachers and other school staff, the surrounding special needs community, doctors, therapists, case workers, special needs advocates, caring followers, and even the clinic receptionists/billing coordinators!
- Dylan gets to take part in meaningful research that will surely impact current and future generations to come.
- Unlimited opportunities to learn about the infinite intricacies of the human body and the chance to converse with some of the most brilliant minds in the world of medicine.
- I get to go back to work, continue my career, and live out my destiny as a special education teacher…but I’ll be responsible for only one student – and he’s my favorite exceptional learner ever!
- Our family is learning sign language!
- We’ll never will have to worry about him joining the military or fighting in wars
- We won’t have to worry about him falling into the dark hole of social media
- Minimal to no fighting with siblings!
And the list goes on…
WE GOT THIS!!!
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