Sometimes you meet someone and just realise there’s a connection. This was certainly the case when I met the lovely Ange online through a Down syndrome writers forum. While not really knowing each other from a bar of soap, I felt very honoured that she and her family went out of their way to meet us in person and share a meal while they were recently holidaying in Queensland. And today, I am honoured to share Ange’s beautiful letter to her son as our very first guest post this month. Thank you Ange x
In a few short months you will go through the school gates for the first time. You are five now. Soon we will buy your first school uniform, you will have orientation and meet your new teachers. We have chosen a great school for you and Mum and Dad know you are going to love the music class and heated pool and the playground is perfect for you to have fun with your friends.
Before you go through the school gates, son, I want to take you back to the early months after you were born to remind you how incredible you are and how far you have come and maybe, just maybe, Mum needs to reminisce a little bit before my heart breaks, again, as you start a new chapter in your life.
The day you were born seems like yesterday and it also feels like an eternity ago because a lot has happened in your life so far. You came into the world with a short silence and then a loud cry and your Dad got to cut your umbilical cord as I waited anxiously to meet you. Seeing you for the first time was the happiest moment in my life, you were perfect and so big! We knew you had Down syndrome when you were inside my tummy and although we were shocked and scared, it didn’t change the love we already felt for you. It just made your Mum and Dad love you even more.
Not long after you were born, the doctors said your heart was not working well and that you would need surgery right away to fix you up. The doctors gave you some medicine to keep your heart working before your surgery. You were four weeks old when an amazing man, called a surgeon, fixed your heart. In the days after your surgery, Mum and Dad were by your side as you worked hard to get well. The doctors said you ‘were in a dark hole’ and ‘not out of the woods’ and something became clear in Mum’s mind as they said those words. I pictured dressing you in the outfit I chose for you to wear when you got home. I pictured our family and friends meeting you. I pictured you starting preschool. I pictured your first birthday and 21st birthday. I pictured you starting school, wearing your school uniform and looking so grown up. I pictured all these things in your future because there was no other way. You would be coming home where you belonged.
Sure enough son, you became stronger each day and you came home when you were two months old.
Our journey together had begun and I learned about milestones, physiotherapy, occupational therapy, early intervention programs, hearing loss, grommets, hearing aids, hypothyroidism, low muscle tone, poor immune systems, standing frames, sensory processing disorder, hip dysplasia, hip braces, sign language, visual cards and walking frames. I watched you grow and work hard to achieve your milestones and you taught me about courage, persistance, patience and determination.
Back then I pictured you walking through the school gates, saying some words and being armed with the use of sign language and maybe going to a mainstream school.
Instead, dear boy, you will go through those school gates in a wheelchair, non verbal and to a special school.
Having hip dysplasia and needing another big surgery next year means you are not walking yet. You are great at using your walking frame. You are not saying any words but you understand everything you hear. You do understand some sign language but you are still working on using your hands to form the signs.
The vision I held for you in the early days is so different to now. I don’t say this with disappointment son, I say it with inner peace.
You see, from the moment I stood at your bed side after your heart surgery and begged God, the angels and anyone who could hear me to let you live, I made you a promise.
I promised to be the best Mum I could be, one who you would be proud of. I promised to work hard and help you be the best you can be. I promised that anything Down syndrome threw our way, we could handle.
In these five years we have spent together, before I wheel you through the school gates son, we have handled so much together. You are blazing your own trail. You taught me a long time ago to stop comparing you to other kids. You march to the beat of your own drum. You are a loving, kind, bright, gentle, humble little boy. You are everything we wish for in a son and as you unravel your beautiful personality each day, we see potential and joy that can’t be measured by milestone charts or developmental assessments.
The vision I hold now of you starting school is way more beautiful and fulfilling than I could have imagined back then.
You deserve recognition and admiration for your hard work and your Mum and Dad will be cheering you on as you scoot through those school gates.
As you start your first day at big school with your new teachers, I thank you for being my teacher from the moment you were born.
Love Mum xx
Ange Longbottom is stay-at-home mum with a handsome husband and two beautiful kids. Her daughter loves dinosaurs and superheroes, and her son is a real life superhero who has changed her family’s life in the best way with his extra chromosome. Follow her family’s journey through her blog About Ash or on Facebook, and Ange also shares stories about motherhood, wellness and mental health at The Iron Butterfly Project.
*This post also appeared over at About Ash.
Big boy school is SO exciting. There is so much to look forward to for Ash. Enjoy the ride, Ange!