Today Steph answers a few questions about her journey as a mom to three year old Hazel. You can follow their journey on Steph’s blog at ChasingHazel.com, on Facebook, or on Instagram at @Chasing_Hazel.
How/when did you find out your loved one had Down syndrome? What were some of the emotions you had when you got the news?
I was in the car on my way to work. This particular afternoon was stormy and dark, like extremely dark. And rainy. It was coming down in a sheet covering my windshield making it difficult to see. My cell phone rang. I reached and fumbled, cursing, trying to locate it and answer before it was too late.
“Hello” I grunted. And then I listened.
Nothing could have prepared me to hear the words that echoed from the other end of the line. My OB’s voice – solemn, factual and confident. He explained, there was something abnormal with my 18 week and repeat 24 week scans. He suspected that the baby was showing signs of a “double bubble stomach,” which as it turned out, was a soft marker for Down syndrome. I was speechless, tears were rolling and I found myself begging him, through sobs, to tell me it wasn’t true.
A few weeks later we found ourselves going through a whirl wind of tests and appointments. We convinced ourselves that the “double bubble” was a isolated birth defect. There were no other signs. Until now. At 34 weeks pregnant, I had a fetal echo. This echo reveled a moderate sized VSD on the baby’s heart.
That was it. That was the moment we were dreading. As we were driving home from that appointment we entered a head space that I really don’t like to remember in too much detail. We drove for 2 hours and in that time we said very little. But what we did say was this,
“I don’t want this baby to have Down syndrome.”
The moment we walked through our door, we headed for bed and we didn’t get out for 3 straight days. We grieved. We grieved hard. We cried. We cried hard. In those days I have never felt so helpless, angry, confused and sad. I must have done something to cause this. Why was this happening to us? I remember walking past the nursery, brand spanking new and ready for our little bundle. I stood there looking in and thinking, “I didn’t buy any of this stuff for a baby with Down syndrome.”
Over the course of the week, we kept the news to ourselves and before reentering society we held on to what very little hope we had that this baby MAY not actually have DS. There was no test to guarantee that we were willing to take so we took showers, brushed our teeth and began living again. Waiting but not anxiously like most new parents, to meet our baby who we knew was going to have some pretty intense medial problems upon arrival.
During one of the darkest times in our lives, there were 2 thoughts that helped me to get to the end of my pregnancy. The first was something my husband said. He said, “Steph – if someone handed you a baby that had Down syndrome, a heart defect, and a double bubble stomach. Said that nobody wanted to love and care for this baby – YOU of all people would do everything in your power to love this baby the best way you knew how.”
And the second was from my mother. She said, “Well, all I know is there’s a baby coming in a few weeks and and once it gets here, it’s going to need us to love it.”
During the coming weeks we struggled with negative thoughts about Down syndrome and tried to hold on to any hope that our baby was not that 1 in 1000. We stayed away from searching the web and carried on with what little strength we had left. At 37 weeks I went into labour and our baby girl, Hazel, was born. She was born bearing all of the medical issues we had already anticipated and there without a shadow of a doubt were the signs of that 21st chromosome.
That was that. She was here. I was holding her in my arms staring at her sweet, tiny almond shaped eyes. And I knew. She had Down syndrome. I also knew that my husband and my mom had been right – I loved her. She was the most perfect little baby I had ever seen.
If I could go back to the days and weeks after first hearing the diagnosis of Down syndrome, I would tell myself…
To get ready…
Get ready to explode with pride every time your child accomplishes a goal or meets a milestone (because they will you know – do everything that ALL other children do)
Get ready to support someone so fiercely that you begin to advocate and educate anyone and everyone who will listen
Get ready to send a positive message about Down syndrome by simply just letting your child be who they are
Get ready for a life of hope for the future and all the barriers your child will break through (also a little fear but mostly hope because in essence HOPE is greater than fear)
Get ready to watch as your children grow together to form bonds that are deeply rooted in compassion, understanding, loyalty, support and the deepest respect for the unique individuals they are
Get ready to meet and connect with the VERY BEST community of families who will inspire you daily with the way in which they advocate for individuals with the 21st chromosome
Get ready to LOVE. A love you could never have dreamed. An all consuming, unconditional love that expands your heart and fills your life with pure joy. This love will teach you to love better. It will help you to see and understand beauty in a way that stands alone and is incomparable to anything else.
What have been good resources for you to learn more about Down syndrome?
Talking with other parents who have been where you are or who are walking along side you. Our Instagram family is always looking for new joiners. It has been a space that I have come to cherish as I watch children and families negotiate life with Down syndrome. Someone has always been where you are and others are willing to offer advice if you need it.
2. Our local children’s rehabilitation/therapy center
It has been a constant source of support and knowledge for us. They always look at Hazel as child first and foremost and her diagnosis as a part of that.
There are many out there who devote and dedicate time and energy to sharing their loved ones with DS with the world. Their knowledge is first hand, accurate and often helpful. Their journey’s are inspiring and educational. They create a community where you will feel you belong. Most importantly, they write and share from a place of love and understanding allowing the message to be received in a positive, productive way. It takes away all the confusing, cold medical jargon that can often be found while searching medical sites.
Click below to read all the stories from Down Syndrome Awareness Month!