Inspiring Lives 11: Living and Loving With Down Syndrome
"Motherhood is so much better than I ever imagined it would be. There is something so special about being needed."
To celebrate World Down Syndrome Day and to help spread awareness, we spoke to Andrea from In Case You're Down. Her little one, Case, was diagnosed with Down Syndrome at a young age, and has been enriching her and her husband's life every day. We discuss family life with a disability, what awareness and acceptance means to them and how special motherhood is.
Finding out your little one has a disability can come as a surprise at first, what were you and your husband's initial thoughts when you found out Case had Down Syndrome?
It was such a surprise to find out that he had Down Syndrome at birth, but I knew right away when I looked at him, and actually was the one to ask the nurse if he had DS. We were shocked, and to be honest the first 24 hours were rough. It was an emotional rollercoaster and we were so uneducated on it that we were scared. After we processed what had just happened we realized how lucky we were to be chosen as his parents. Sure we had fears of what was to come and challenges he would face, but that is just like with any other kid. You don’t want them to have to struggle with anything.
Bringing up a baby isn’t the easiest of tasks, how did you find the first few months and what were the biggest challenges you faced?
When you’re pregnant you always wonder if you will have that “motherly instinct” that everyone talks about. It was such a relief to find that it came naturally to me. I wasn’t able to breastfeed due to some complications and the mum guilt was hard to overcome.
Down Syndrome is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21, how does it affect Case and the way he needs caring for?
Down Syndrome has a lot of things that can potentially come along with it. One thing that Case has struggled with, and will continue to have to overcome is low muscle tone. It caused him to have a hard time sucking at birth and had a feeding tube for his first couple weeks of life. Low muscle tone will also contribute to troubles walking and speaking. Occupational, physical, and speech therapies will help with this. Case also has a hole in his heart that could require surgery if it doesn’t close up on its own. He wears oxygen to help with some heart problems as well, but that hopefully won’t be a permanent thing. Often, individuals with Down Syndrome have intestinal problems, but Case has been blessed that way and hasn’t had problems so far.
On your blog 'In Case You’re Down', you mention your #givingbackforDS challenge. Why did you decide to do this and what does it entail?
I wanted to do something that got people involved and excited about Down Syndrome. There are few things that feel better than serving others and I love paying it forward. I think actions connect people more than facts do.
For those who don't understand what Down Syndrome is, how would you describe it to them?
Down Syndrome isn’t something to be scared about! It’s not something to feel sorry for, or wish away. It’s an extra chromosome, in our case, and it’s not caused by something the parents did. It’s something that will definitely bring some elements into your life that you hadn’t imagined, but it will also bring you so much joy and happiness.
Do you have any advice for other parents who have a little one with Down Syndrome?
Connect with other parents who have children with disabilities. They will be able to offer you so much advice and answer questions even better than doctors can in some cases because they have been through it first hand.
Spreading awareness is so important to making the world a better place. How do you help to spread awareness and what does it mean to you for others to be accepting?
Awareness is so important so that others know how to handle and act around those with DS. I feel that if we were better at educating our children while they are young we wouldn’t be so prone to staring and questioning as adults.
Being accepting is so important because diversity is such a beautiful thing. We have so much to learn from each other, whether we have DS or not. Accepting is embracing the differences and including DS in more activities that they are automatically ruled out of because they have DS.
Looking after someone with a disability has moments of difficulty and upset. You promote being positive and having a positive outlook. What pushes you to always look on the bright side?
When we had Case it was no question that things weren’t always going to be rainbows and butterflies, but from the very beginning I decided that I can choose to dwell on the challenges and trials that will come, or I can enjoy every beautiful moment along the journey and take the hard ones as they come instead of worrying myself sick. Case is no different in the way that everyone has trials and no one knows exactly what they are going to face, we just take each day at a time and enjoy the life we’ve been given.
Finally, what does motherhood mean to you and how has it changed your life?
Motherhood is so much better than I ever imagined it would be. There is something so special about being needed. I am incredibly thankful for the chance I’ve had to be a mum. I’ve learned so much about being selfless, and never taking a moment for granted. There’s so much pride that comes when your child learns something new. You have a feeling of accomplishment that’s way better than any A on a test.
What do you love about MORI and what's yours & Case's favourite item?
MORI’s products are unbelievably soft. The second I opened my package I was obsessed. I wish they made them in my size! Did I mention how cute they are? I love the Yoga Pants and Everyday T-Shirt. I’m so excited to try more things because I believe that babies should always be in things that feel like butter!