Roxy and I go way back – all the way back to 2002 when she was my hockey coach at school. We also attended the same university, although not at the same time, and she was a friend of my big brother. When I received a message from Rox when she was pregnant with her first child saying that they had received a positive result for Down Syndrome my heart quite literally plummeted. Our motherhood paths have been almost identical and knowing that she was going through the same feelings of loss, guilt and fear meant that my heart broke. I couldn’t wait for her to slowly comes to terms with her new reality so that I could shout from the rooftops how her and Just had just hit the jackpot. Roxy was born to be a mother and now with the addition of their precious Ava she has become that mother and so much more. I am infinitely proud to call you a friend Rox, and I am eternally grateful that this unexpected turn in our journey’s brought our paths together again.
Enjoy reading her and Justin’s beautiful journey and I challenge you not to fall head over heels in love with their little ray of sunshine, Jesse.
Jesse is dressed by The Little Closet
All images by Derryn Schmidt
I was so excited when Jess asked us to be a part of this Down Syndrome Awareness Collaboration. What an awesome opportunity to increase awareness about Down Syndrome (D.S)…and let’s be honest, us Moms love to talk about our kids and how amazing they are J Justin and I have been married for 3½ years and are blessed with two gorgeous children, Jesse (2) and Ava (4 months). We absolutely adore our pigeon pair and thank God daily for choosing us to be their parents.
It is an honour and privilege to tell you about our precious son, Jesse. Although no words or adjectives seem to do justice to express how much we love him or how incredibly special he is. Jesse means ‘gift from God’, a name we purposely chose for him because that is what he is. It’s impossible to be grumpy around Jesse (well most of the time….this tired mom of two certainly has her moments…) He wakes up with a smile on his face, and his easy, belly laugh is contagious. He has a twinkle in his eye and loves to be the centre of attention. Jesse is currently learning sign language, and I cannot wait for his vocab to expand…I’m longing to know what’s going on in that mischievous mind of his. He is amazing with his baby sister. He bum shuffles over to her whenever he hears her crying and giggles when he touches her or kisses her chubby face. Ava is blessed with a loving, protective big brother. But don’t be fooled, he finds stealing her blanket hysterical…in other words, he’s a typical big brother. You see when I think about Jesse, those are just a few of the things that pop into my mind. To be honest, most of the time I actually forget that Jesse has D.S. To us, he is just our amazing boy! Does having D.S affect him? Most certainly. Does it define who he is? Absolutely not.
I will never forget the journey we went through when we found out about Jesse. It was an extremely emotional and heart wrenching time. When I was 24 weeks pregnant, a specialist picked up that Jesse had a duodenal atresia (a blockage in his intestines), which, in order for our baby boy to survive, would require an operation at birth. As if that wasn’t enough of a shock, the specialist followed with ‘One in three children with this condition has Down Syndrome.’ We had to wait a week for the result. I cannot describe to you the turmoil we went through during that time. I can still see the look on Justin’s face when we finally got the call, confirming Jesse’s diagnosis. It was a look of pure heart ache. And just like that my exciting, happy, hopeful pregnancy journey came to a screeching holt. But not only were we trying to deal with this life changing news, we were also facing huge pressure from the various specialists involved to terminate. We were given a devastating prognosis and made to feel like we were being unfair on our son by keeping him.
There were times when my heartache was so all consuming, I literally thought my heart was shattering into 1000 pieces and, if I’m honest, I thought I would never be truly happy again. I share this in case there is someone out there walking this road. I want you to know that I understand your heartache, your feelings of hopelessness and desperation. Be gentle with yourself and give yourself time to process your various emotions. But I wish that I could go back and have a cup of coffee with my old, scared self. I would tell myself that this precious boy would bring us indescribable joy. That he would make us laugh every day and that we would love him with a love so fierce. I would tell myself that it’s normal to feel what I was feeling but also to know that there is still so much joy and hope in our future. We were told to expect the worst with Jesse. That’s why it’s so important to me for people to know the truth; that when people see Jesse, they see the miracle that he is. I want to shout from the rooftops that this boy is an incredible blessing.
That being said, I still have my moments of weakness. Sometimes, when I look at other kids and I see areas where he is delayed, I feel a little heart sore. Like all Moms, I want my son to achieve and succeed. But then, he does something to show me how kind and gentle he is or gives me one of his beautiful, often cheeky, smiles and my heart bursts with love. When he achieves a milestone that he has persevered at or talks to us in sign language, we are just the proudest parents. I know we have challenges ahead of us, but life is full of challenges for all of us and I know that God has a plan for our Jesse Bear. So we just take this journey one chapter at a time and enjoy each precious moment with our kids.
In closing, before Jesse, I sometimes felt a little uncomfortable around someone with special needs…not quite sure what to say or do… Now I know better. People just want to be loved and accepted. To parents, I ask that you educate your children that differences are not to be feared. We need to teach them to be kind and to accept those who may be different to us. The world needs more love and kindness in it and it needs to start with each of us.