I’d like to think I’m a typical mom. Most days I drink far too much coffee, repack my Tupperware cupboard 100 times a day because my daughter’s favourite pastime is taking everything. Single. Thing. Out! I generally feel exhausted, have a serious weakness for chocolate and I love my children more than I could ever describe.
When did you become a mom for the first time?
I have a 3 year old son, Jesse, who gives the best cuddles and makes me laugh every day, and a beautiful 17 month old l little girl, Ava Grace, who is an absolute Mommy’s Girl (which is tiring but secretly, I love it). She has a cheeky laugh and knows what she wants. I am incredibly blessed to be married to a wonderful man, Justin. We have been married for almost 5 years, and what a journey it has been. We have had our highest highs together, and stumbled through our most difficult and heart-breaking chapter together. There is no one I would rather have by my side. Justin and I are both from KZN but we have been living in Malawi for the last 2 years.
When did you find out your child’s diagnosis?
We found out about Jesse’s diagnosis when I was 25 weeks pregnant. Along with finding out that Jesse had Down Syndrome, we were also told that he had a blockage in his intestine and numerous other concerns. We were completely heart broken and terrified, and I felt like my world had fallen apart. I think all of these emotions are totally normal, but flip, I wish I knew what I know now. Yes, there are challenges but Jesse and Ava are the best things that have ever happened to us. I know we are biased, but man they are amazing kids!!
What is the hardest part about being a mom of a child born with Down Syndrome?
Most days, when I look at Jesse I honestly ‘forget’ that he has Down Syndrome, he is just our Jesse Bear. But, having a child with special needs certainly has its challenges. I have days where I feel quite overwhelmed knowing I need to continue teach him Makaton (a sign language), do O.T, Speech Therapy and physio with him-especially because of where we live. The pressure and, often guilt, knowing that a huge part of Jesse’s progress rests on my shoulders can be stressful. All of us Moms know that feeling of “I am not doing enough” so well, Mom’s guilt is a real thing!! There are also days that I worry about what lies ahead. Justin and I have also spent many hours talking about the future, and what it holds for Jesse and our family. During those chats we can start to feel pretty anxious, but I have learnt to take a deep breath, and trust God. He has provided for us every step of the way with our journey with Jesse. I truly believe that He has a plan for Jesse and that He will continue to guide us and our future is in His hands.
What do you do just for you?
Hmmm, Me-Time…is there really such a thing when you have 2 small kids? I have recently started running, which has been good for the soul. Also, this school term, Jesse has started going to school twice a week which means I have Tuesday mornings to myself. What a treat!! I usually meet a friend for coffee, it is SO wonderful having adult conversation…although a lot of the coffee date is spent discussing our children haha
What does Down Syndrome Awareness Month mean to you?
I believe that education and awareness is so important. That’s why Down Syndrome Awareness Month is very special to our family, because it is an opportunity to tell people about Down Syndrome and our journey with Jesse. I am very open to people asking me questions. The more we learn about something, the more we understand. I never, ever want anyone to feel sorry for Jesse. He is a flipping amazing little boy, who loves life and people, and he is achieving everything in his own time. He is deeply loved and cherished.
I’d like to end with this quote “A disability is only one characteristic of a person. Children with disabilities are like all children in that they want friends, respect and to be included”. We all have a role to play in creating a world where there is respect, kindness and acceptance.