Julie Fisher
When I look at my beautiful 16 year old boy today, I wonder why I was so full of worry before he was born.
I had surrounded myself with an amazing group of Mums that supported me and showed me the way so well. They guided me and shared their journeys with me and told me where to start once our boy was born.
I was able to see their children varying in age from 1 to 7 years and hear about schooling, supports and therapies that I would have to consider for my boy. Their children were delightful, and I loved watching them interact with each other. I remember thinking to myself that really, they were just like my older 2 boys in the way they played and the things they wanted from their mums.
I was so confident on the outside, but so full of fear and worry on the inside and I needn’t have been. The things that went through my mind were crazy, but the mind is a funny thing isn’t it. The things that come up sometimes, you do truly wonder where they come from.
Eventually, when my mind was at ease, I began going through guilty feelings. Guilty that I had some of those thoughts and worries.
We received diagnosis at 15 weeks during my pregnancy and even though I was anticipating this because of a few things that had happened, it was still a shock, and we went through the emotional rollercoaster.
The doctors at the time didn’t help with that; continually telling us about termination, what would happen, and it would probably be the best decision. They told us this over and over even though termination never entered our minds.
We wanted to know whether our child was going to be born with Down syndrome so we could tell our older boys as well as friends and family. I had heard stories of tears after birth and receiving the diagnosis then and we didn’t want tears when our baby arrived, we wanted happiness and joy when our baby joined our family.
Telling everyone before the birth allowed us all to research, ask questions and be introduced to all the beautiful families I had met at the support group. We were also able to book our baby into a paediatrician ahead of time as well as early intervention because my friends had told me it was best because there was always a long waiting list.
Through all the worry and strange thoughts going through my head, when my little boy Darcy was born, it all disappeared.
He was the most perfect tiny little bundle you have ever seen. I felt exactly the same way looking at him as I did with my older boys. Our little man was here to complete our family.
He was 5 weeks early and needed to go into special care nursery so then different worry started, hoping that he was going to be ok and be able to come home soon. I remember feeling as though I was on a rollercoaster, always just wanting to know my little boy would be ok.
We spent 3 weeks in the special care nursery and the staff were amazing. So positive and full of support for us all. Very different to the doctors when I was pregnant. It was a welcome change, and we were able to enjoy him as we should.
Bringing Darcy home was amazing, and he was such a good baby. He was sleeping and feeding well and was extremely content in our busy family.
His brothers were very active playing basketball and football as well as having school and many other social events. Darcy had to come everywhere with us and took everything in his stride. He loved all the attention from everyone. He was a very popular young man.
Bliss turned to worry again when Darcy was a few months old when we discovered he was aspirating liquids. This was all he was having as a baby and after many hospital visits, tests, oxygen and monitoring, Darcy had a PEG inserted so we could safely feed him.
We put him on solids straight away as recommended by the specialist so he would be able to keep the ability to chew and swallow. Solids were fine and it was only liquid, even thickened liquid he couldn’t tolerate.
It was such a scary time, but we had amazing people around us constantly reassuring us and guiding us with the care we needed to give our boy. They were truly some of the best specialists we have every dealt with, always making sure we had all our questions answered so we knew what course we needed to take.
Once everything settled, Darcy really began to thrive and although milestones were achieved at a later age, they were still achieved and celebrated by everyone. His brothers were always encouraging him and coming up with ways to try and help him reach his goals.
Darcy is now 16 years old and enjoys a busy life himself now with school, sports, social activities and much more. He loves to play basketball, ten pin bowling and participates in dance and drama.
He is part of a wonderful group that do lots of community access with many of his friends. They enjoy everything from going to the basketball, movies, dinners to theatre and concerts.
He’s a very social boy and is learning lots of independent living skills here at home and at school. Things still take some time to learn, but slowly he is kicking goals and achieving many things.
I think back to the days before he was born and I know why I was worried and unsure, but I would tell myself not to be now. I would tell myself that he is going to be my son, just like his brothers and that he will have the same wants and needs as anybody else and as his Mum, I will do everything to make sure he lives his best life.
I would tell myself not to worry and that everything will be alright. He is a person just like his brothers and deserves to experience everything he has a desire to.
He has brought so much to our family including teaching me how to be a great advocate and to think outside the box which is needed sometimes to make him feel included and to achieve his goals.
I wouldn’t change him for the world, but I will change the world for him. I will always make sure he gets the same opportunities as his brothers if he so desires.
And I will always share my quote ‘Give People A Chance And Watch Them Shine’ because watching someone achieve something after a long time of learning, is the best feeling in the world.
He’s my son…
He is Darcy.