No Maps
In keeping with the global awareness and solidarity of World Down Syndrome Day, March 21st, I am celebrating my son, Zayne Craig, who was diagnosed at birth with Down’s Syndrome. Let’s take off our rose-coloured glasses and face facts. We are all on a journey, facing more trials and tribulations than are typical- and boy this pandemic isn’t helping at all. An unknown journey, with no maps and so many unwanted detours; it is a journey that does not promise any rewards nor enjoyment, no assurance of bonding with other travelers, no enthusiasm to highlight experiences. This journey, though unexpected, still brings us excitement, laughter, and adventure.
My family and I are navigating these new adventures with our son Zayne. We have met many people along the way, maybe not with the same symptoms, but with very similar challenges.
We have been very blessed with Zayne. He doesn’t face chronic health issues. Not all parents out there can say the same. We are all traveling different paths, and many families that I have encountered over the years have endured their own challenges. Zayne is meeting many milestones, attends school, and has the opportunity to live an almost “typical” life. But how many families can vouch for the same? We are surely not the “expected” face of special needs.
Lots of Time & Effort…
In the months after his birth, I spent hours researching and re-researching the best techniques and home therapy that would benefit our son. To help him learn how to walk we used a towel and an empty shoe box – now he can ride his bike without training wheels. He has attended almost every swimming camp we could find and has even dabbled in music before Covid-19 forcibly halted those lessons. And yes…I do realize this is not representative of a child with special needs, especially in our country where opportunities and finances are limited. Life is not a bed of roses. We face challenges and trials daily, but we persevere and try to make the best of each situation.
I was so worried and anxious that Zayne wouldn’t be able to articulate words – now he is quite chatty and can be very stubborn. My friends get a kick out of putting things right back in perspective and reminding me of those times and the blessings that I have. (Still weighing the blessings of a very stubborn, feisty, and mouthy little boy who thinks he is Catboy!)
Lots of Rewards Too…
There are indeed so many unseen struggles to raising a child with special needs, and it does go beyond the imagination. I have lost count of the numerous clinics, sessions, workshops, and camps that we have attended in various parts of Belize to try and ensure that Zayne’s quality of life would be the best that we could give him. But for every struggle we faced there have certainly been rewards. How can we not celebrate his independence in taking a bath on his own, brushing his teeth, getting dressed, playing a tune on the piano, or helping to make tortillas? As he gets older the celebrations become far more significant – learning to write his name, to spell difficult words like January and Easter, and more recently reading all by himself Polar Bear, Polar Bear, What Do You Hear? I swear, I must have sent that video recording out to at least 100 people!
It isn’t easy! Being a parent of a child with special needs and being a teacher in these tough times is wearisome and exhausting. I am not always smiling proudly, and I am not always able to boast of his accomplishments, especially when they don’t measure up to a typical child. I cannot begin to count the many, many times I’ve cried. His self-awareness means that some days, Catboy Zayne finds his schoolwork difficult and overwhelming, and he isn’t afraid to say so. It isn’t every day that he wants to turn on the camera and participate in his live sessions. We thank God for all his teachers who are on this journey with us. I would especially like to thank his homeroom teachers, Teacher Kendra and Teacher Hadassah, who are very understanding, flexible, and compassionate.
Catboy Has Jokes!
At home, there are days he adamantly refuses to pick up his toys; he will certainly provoke his older sister to tears by destroying her prized possessions, and would surely test the patience of Job. But no matter how frustrating the day is, trust me, his witty sense of humor makes the world right again. He is a pro at Knock, Knock and fart jokes and says or repeats the darndest things that would have us all in uproar. One night he just kept on repeating this line from Wild Kratts “I’m with you honey” to his dad and they would both burst out laughing bonding over this corny joke. The next morning to break him out of his crankiness, his dad jokingly said, “I’m with you honey.” Very blasé Zayne responded, “Dad, that’s an old joke.” Well if the joke wasn’t now on daddy!
A Little Advice…
Laugh loudly over a silly joke. Cry if you must. Rest when you are tired; but never, NEVER lose hope or lose sight of your dreams. Do not be discouraged nor dispirited. Most importantly keep GOD first, and the rest will be added in the equation.
World Down Syndrome Day, March 2021
In honor of World Down Syndrome Day 2021 Theme: #Connect- let’s connect with each other by breaking down barriers and creating changes so that our children can have as normal a life as possible.
Let’s connect by reaching out to each other and giving words of encouragement.
Let’s connect to empower each other to advocate for equal rights for people with disabilities.
Let’s connect for a society that would be accepting of special needs.
Let’s connect for a deeper appreciation of life. Let’s connect to celebrate uniqueness and differences.
Let’s connect on March 21 by wearing brightly colored or mismatched crazy socks, taking pictures and storming social media by using the hashtag #WorldDownSyndromeDay.
Let’s connect by showing and spreading global support.
