February 28th, 2019 is Rare Disease Day in Canada. My youngest son has an extremely rare disease called STXBP1, in fact, he is one of only about 300 diagnosed cases around the world. He is non-verbal, he has fine motor and gross motor control issues and is considered globally developmentally delayed. He is what everyone considers “Special Needs”, and he is; however, not in the way that most people would consider this label.
You see, needs are pretty basic. You need food, water, shelter and then what I would consider the “Special Needs” of love, friendship, laughter, touch. Those needs that lift us, energize us, provide us with empathy. These needs are the best of humanity. That is what makes my son “Special”.
While the rest of us pursue happiness through, what I would call, “perceived needs” of money, status, and power (really just “wants” that are primarily ego driven, and competition based), my son is happy with the “Special Needs”. Not only is he happy with these needs, he can project them onto you. He can walk up to almost anyone, and with a single look he can make you feel “Special” too. It is a look that, without any expectation, says “I love you, and you are my friend.”
He does not judge based on race, gender, age, sexual identity, religion, socio-economic status; Language barriers do not get in his way. He takes the best of all of us and wraps it up into one “eye brow raising” glance that for a time can pull you into his world where everything and everyone is contained within the special needs of love, friendship, laughter and touch.
I have spoken to many parents of “Special Needs” children and they all say the same thing; that their children have a “Special” way of reminding us of the needs that are “Special”. They love unconditionally, and not just their family.
Since Rare Disease Day is only a couple days away, I feel inclined to remind you that, unfortunately, many of these children will not be with us for as long as they should be. For some of them they have a very small amount of time, but in that time they will give everything that they have. They are the best of humanity, and should not be looked down upon or pitied, they should be adored, for they will not be pulled into unnecessary negative competition, gossip, bullying, or prejudice.
My youngest son will never “need” more money, a bigger house, the newest car, a better job, designer clothes, the newest iphone, etc. In fact, outside of the basic needs of food, water, and shelter his “Special Needs” of love, friendship, laughter, and touch are “Special” because that’s all he needs.
To my sons, thank you for all you have given me. Love you.
The Walking Dad.