Guest Contributor Isabelle Smith
As far back as I can remember, I always knew I wanted to be a mom. I always felt it was a calling on my life and I couldn’t wait to see who I’d marry and have kids with, what they’d look like, and what their personalities would be like.
Jump ahead to 37 years old, I’m married and pregnant with our first daughter.
Jaslyn Jolie was born on December 26 2011, just barely missing sharing a birthday with baby Jesus. Although she’s only 3.5 years old now, I could easily write a book about her and the way she has changed me. She has made my heart expand to dimensions I didn’t know possible in order to contain the love I have for her. I love to talk about her and I love to take pictures of her.
If you’d see my Instagram account, you’d know this is true!
Fast forward a little bit more and I’m now 40 years old, definitely with baby fever, and my husband, Lorenzo, agrees we should “go for one more.” So we found ourselves pregnant again and I was so excited, just as much as with my first pregnancies (I say “pregnancies” plural because I also had a miscarriage, but that story is for another time).
If you know me you know I LOVE being pregnant! Love, LOVE, love it! Everything about it! Because of my old age (insert wink here…I know I’m not that old), it was suggested I undergo all the recommended tests to make sure the pregnancy was going well. I took The Verifi Prenatal Test at 10 weeks which can determine the baby’s gender as well as test for chromosomal abnormalities with a simple blood draw. We were excited to find out the baby’s gender. We didn’t worry too much about genetic issues.
After all, that only happens to other people.
When the doctor called with the results, instead of telling us if it was a boy or a girl, he said these words, “There was an abnormality… The test revealed 3 copies of chromosome 21… That’s Down Syndrome.” Our world came crashing down with those words. I was crushed, I was sad, I was terrified.
I started browsing social media by searching the hashtags #downsyndrome and #theluckyfew. More than just educating myself on that congenital disorder, I wanted to peek into real people’s lives and find out how it was working out for them. It was part of my process in understanding Down Syndrome.
I was nervous and feared I would find that people’s experiences were negative and filled with grief. I also searched for blogs from moms of Down Syndrome kids fearing the same thing, assuming I’d see a thick grey cloud of confusion over their lives. What I found was positive and encouraging as love and acceptance marked the lives of those families. As I browsed social media and the internet, my spirit was lifted, my fears minimized, and my hope increased.
It wasn’t until the next day that we found out our baby was a little girl and we named her Amellia Belle. As days and weeks went by, I learned to embrace my new reality.
In fact, my new reality started to change me.
No, my baby was not going to be exactly the way I expected her to be, but that was ok with me. God doesn’t make mistakes. She certainly wasn’t one.
With my newly found acceptance I started asking questions such as, “What is normal? And why can’t different be normal, too?”
Kelle Hampton, Author of the book “Bloom – Finding Beauty in the Unexpected” and mother to a child with Down Syndrome said, “What is it about different that makes us think it’s not perfect? The concept of perfection is not flawless. It’s happiness.” I couldn’t agree more. The negative feelings that had once filled my heart were removed.
I loved Amellia exactly the way she was, even before I knew her, even before she was born. I was aware of the limitations she would face, but I wasn’t fearful of them anymore. She was created the way she was by design, she was perfect in my eyes, and I didn’t wish for that extra chromosome to be removed.
Since the day she was born, I’ve loved posting pictures of Jaslyn Jolie and my daily life with her on social media. Now that Amellia has joined our family, I’m also posting pictures of her, along with lots of pictures of them together because they’re the sweetest little things ever! When I share Amelia on Instagram, I usually hashtag #downsyndrome and #theluckyfew.
A little while ago, someone asked, “Why do you always use hashtags when you post pictures of Amellia? She’s already going to have labels for life, do you need to constantly draw attention to it?”
Here’s my answer: For the same reasons why I searched those hashtags back then, I’m posting with those hashtags now. I’m hoping that our family can be an encouragement to people who are receiving the unexpected news of a Down Syndrome diagnosis, whether prenatal or at birth. I pray that people, as they watch our journey through pictures, can find comfort and encouragement. This also is why I am thankful to share this blog on Soul Collective. Maybe that window into our lives will help reduce stigmas, raise awareness and increase acceptance of people with Down Syndrome. Pretty lofty goals, I know, but as long as I live, I will try.
If I could say anything to someone that just found out that they are expecting a baby with Down Syndrome or someone who just found out at birth, it would be this:
Allow yourself to feel all kinds of emotions, even when they seem negative, and don’t feel shame for them. You’re not bad or unloving, it’s simply part of the process.
The news won’t remain shocking forever, it will become your new normal. It’s a lot to wrestle with, it’s overwhelming at first, it seems huge, like an insurmountable mountain. But soon confusion will be replaced by trust, sadness by joy, defeat by courage, and fear by hope.
Be patient with yourself and your emotions; you will be at peace with it all before long.
Take it one day at a time. You will find strength with each new challenge you face, and you will realize you are stronger and more resilient than you imagined. That little baby will bring you so much joy and is so worthy of your love. God is the Creator of life, the Giver of all good gifts and this baby is one of them.
You will learn everyday a little more about what Down Syndrome is and what it means for your baby and you. But more importantly, you will get to know this baby. It won’t be so much about a diagnosis anymore, but more so about this relationship with this human being who was entrusted to you.
Don’t hesitate to search the internet, contact your local Down Syndrome association, reach out to parents who have have gone through what you are going through and seek the help and support you may need. And brace yourself for an amazing journey!
Amellia Belle has Down Syndrome but it does not define her. She is so much more than a diagnosis. She was made in God’s image, just like the rest of us, and in her short 10 months of life, she has already taught me so much. She was created with purpose and I pray her life will be full and as independent as possible. I pray she will use her gifts, be bold and confident in the way God made her and spread joy everywhere she goes. It’s my hope and desire to see her being included in all aspects of society not only now, but throughout her whole life.
I love my girls! I love Amellia Belle!
Love doesn’t count chromosomes.