Isaiah’s Way: How One Family’s Story of Down Syndrome is Considered a Blessing, Not a Disability

By Donna Simard

A mother and author of Donna’s Dozen brings you real life stories of raising a child with Down Syndrome. You will meet their son Isaiah who will hopefully inspire you and encourage you to see the child and not the disability.

• Language: English
• Publisher: Word Alive Press
• Release date: Jun 21, 2017
• ISBN: 9781486615261

Book preview

Enter Isaiah…

I HELD OUR SON IN COMPLETE AWE. Reaching out I gently squeezed his tiny hand. The miracle of life had amazed me once again.

After three days in the hospital Jean-Marie and I placed our beautiful baby boy into his car seat and headed home. We lived on an acreage in a modest home not far from the town of St. Lazare, Manitoba. I felt like pinching myself to make sure that this was not a dream. Looking across at my husband of twenty nine years, I began to study the gentle lines etched on his face, thinking of how much I love him. A gentle cry startled me back to the moment. My eyes searched the back of our van to find our little bundle of joy.

What’s the matter honey, I cooed. He looked towards me. Isaiah, our twelfth child, had already found a special place in my heart.

I let myself think back to Jean-Marie’s conversation with the doctor, questioning him on the possibility of Isaiah having Down Syndrome. He had been concerned because of my age — which was forty six — and that there was Down Syndrome in his family history. The doctor replied that he wasn’t sure and would like to do the blood test. We agreed.

The only physical signs of Down Syndrome that we noticed were the slight slant to Isaiah’s eyes and a straight line across the palm of one of his hands. I pushed all of these thoughts to the back of my mind and decided to not worry about it. Everyone oohed over Isaiah.

We still had seven children living at home so the house was never boring, and I enjoyed watching the older children interact with Isaiah. When feeding time came I would place myself in my rocking chair and nurse baby Isaiah, hugging him close and reminding myself that this was our last child. I refused to feel old — in fact I felt rather privileged. These weeks passed by quickly sending us straight into the busy Christmas season.

I will never forget the moment when the telephone rang to tell us that Isaiah had Down Syndrome, Trisomy 21. I cried and Jean-Marie went into denial. It’s never easy to hear that your child has a condition or a disability. Jean-Marie contemplated having the test redone, and I went into motherly mode knowing that it would be important to give Isaiah the tools that he would need to go forth in life.

I studied books and went online. I found out that Down Syndrome is an extra genetic material that is associated with the 21st chromosome. The extra genetic material can cause effects that vary from individual to individual. I looked down at the baby in my arms knowing that our special son would be protected, loved, and cared for.

We decided from that very moment that Isaiah was a blessing and he would show us the way and that would be ISAIAH’S WAY!!!!

Isaiah fit into the family just fine. His first Christmas was filled with an abundance of love and acceptance. Isaiah listened to us and responded. We refused to label him and treated him just like our other children were treated. He was growing and had no health issues that we were aware of, and for this we were truly grateful.

My heart strings tugged when Natalie (number 11) announced that Isaiah was her birthday present. I knew that sharing their birthday was the start of a precious bond. Natalie turned seven years old on the day that Isaiah was born. She spent as much time as she could, playing and talking to her little baby brother.

One day after school she came bouncing in through the door, stopping quickly to say hi to her brother who was lying on a blanket, then headed straight to the bathroom. Isaiah was already two months old and well aware of his surroundings. He started to cry, but when I tried to console him, he continued to cry. Natalie came back from the bathroom to see what was wrong and he immediately stopped crying. He smiled up at his sister.

I thought that this was a coincidence so I instructed Natalie to disappear into the hallway so Isaiah couldn’t see her. Isaiah instantly started to cry. Natalie returned to console her little brother and he stopped crying and smiled up at his sister. I was thrilled to see how he responded to Natalie. Love comes so naturally and from that moment on I knew that with love and stimulation Isaiah would be fine. Natalie and Isaiah loved each other unconditionally.

Time seemed to fly by and soon Isaiah was six months old. I knew there were programs that would help us to know what we could do to help Isaiah with certain things. I phoned and booked an appointment with a team which included a Physiotherapist, Speech Therapist and Occupational Therapist. This was one of the best things that we could have done.

Since Isaiah was a baby, the team of workers would come directly to our house and work with him. I found it fascinating. They showed us tools that would benefit Isaiah. They taught him sounds and games to help develop his speech and yes, this was before he could actually say words, and they used muscle toning fun exercises, and worked on the fine motor skill exercises that helped immensely with holding objects. Children with this condition have a weaker muscle system.

We all worked to benefit Isaiah and it was working. He soon started to hold toys and reach out to interact with us. As a mother I soon realized that stimulation was crucial for Isaiah to keep moving forward.

There was a little play group which was held at our local school. It was held once a week. I joined in with women that were much younger than me. It was to incorporate the French language to the children before they reached school age. I don’t know how to speak French but I loved the fact that one day Isaiah might learn this second language like his siblings.

Not only was it introducing the language to Isaiah but it was stimulation with other children and introducing very early the school setting. Isaiah thrived but I still wondered if he would ever be able to fully communicate with others. We even started to teach him a small amount of sign language.

We saw that his muscle strength was weaker when we tried to get Isaiah to sit independently. He would literally flop to the side. We placed pillows around him and continued to watch him topple over. Isaiah did not give up and neither did we. I remember when he was eleven months old he played peek-a-boo with his blankets. Isaiah would hide his face with the blanket and when we would say peek-a-boo he would pull the blanket to reveal his face. Our hearts melted as he interacted with everyone. It was not long after that he turned one year old that he sat up all by himself without falling over. Our whole household rejoiced.

Isaiah started escalating from one achievement to another. At sixteen months he crawled. I still laugh at the thought of his way of crawling. He did the bear crawl, with his bottom pushed up high and his arms and legs nice and straight. He looked like a little bear. It really did not matter for he was finding a way to get where he needed to go. Another cute thing Isaiah did was to pretend that he was sick. We had a cold that ran through our household in January 2007. There was a lot of coughing. Isaiah mimicked the children and began to fake cough. It was adorable and with a household of children it was overplayed. They would ask Isaiah, are you sick? — and he would instantly do his fake cough.

From a mothers’ perspective, I was relieved to know that Isaiah was capable of understanding. Another indicator of this was when one of the therapists that made a home visit invited Isaiah to play a new game with her. It