In honor of CHD month, we are happy to share Miss Molly's story. We thank her mama for being so candid and sharing how she handled being told that her tiny newborn had not only one, but two obstacles to overcome. Thankfully, Molly has proven time and time again that she is unstoppable. As her mama says, "She is who she was meant to be. She is a light. She is a warrior. She is funny. She is kind. She is so sweet. She is my best friend. I don't know her any other way, and I wouldn't want to. She is Molly."
Diagnosis & Year Diagnosed:
Trisomy 21 (Down Syndrome) & Congenital Heart Defect (CHD)
How did you learn of your child’s condition?
"My pregnancy with Molly was a healthy, normal pregnancy. Nothing unusual, no morning sickness (thankfully). Just a healthy baby girl-or so we thought. Molly's 20 week anatomy ultrasound checked out great. All 4 chambers of the heart, 2 hemispheres of the brain, 10 fingers, 10 toes, everything growing as it should be. But she was a wiggly gummy bear and she looked “okay” from what the ultrasound tech told us. Yet, something didn't feel right with me about that “okay.” Through many tears, I asked my OB for another anatomy ultrasound. However, everything checked out great again.
I continued on with my pregnancy, my mind a little more at ease. Molly was a repeat c-section on March 2, 2016. There was no cry when she came out. Lots of nurses and doctors were at her warmer bed, but I could not see her. Again, I was being reassured she was okay. After many minutes (what seemed like hours) a doctor from the NICU came to the head of my bed (as I was still laying in OR unable to move), and told me Molly had features of Down syndrome and that she was having a hard time transitioning outside the womb.
She went to the NICU where they discovered a very large heart defect that would require future surgery. My world stopped. It literally halted. We would later find out her chromosomes also confirmed their suspicion of Trisomy 21, or Down Syndrome. I was sad, scared, angry, worried. Was I going to love her? Could I love her? This is a new being to me. This wasn't who I carried for 9 months. I cried. I cried... a lot. I grieved the healthy “Molly” I thought I was carrying.
Fast forward 9 months... My baby girl underwent open heart surgery to fix her heart. Thankfully, it was a successful surgery and we were in and out of the hospital in six days."
If you could teach the world one thing about your child’s condition, what would It be?
"I slowly came out of the fog and realized that Molly is just like everyone else. Every one of us is different. Molly is no different. She will do ALL the things a typical person will do. She just needs a little help to get there and it may take her a little bit more time. Yet, she will accomplish all things she puts her mind to and we'll be right behind her, cheering her on!"
On hard days, what is something that helps you through?
"What is hard- Molly having to endure hour long physical therapy sessions, feeding therapy where we have to make her eat what she doesn't want to eat, and periods of frustration when she doesn't know how to communicate with us. She has it harder than I do. Yet, let's be honest. I am human and some days are hard on me too. It's hard watching her work so hard for something that seems so easy for a typical 2 year old. I've learned to lean on friends and talk it out. My friends and family are where I get my encouragement from- where I can cry, dust myself off, and get right back into it.
Also, those milestones that come so easy for other kids? When Molly reaches them... Oh, it is so amazing. It gets me through those hard days. She just learned to walk independently before Christmas. I still look at her in amazement seeing her walk today. This joy is not taken for granted. She worked for 2 years on that milestone and I love that I still feel that joy every time I watch her.
After Molly was born and I could finally talk about our journey, I started my own blog. I wasn't anticipating anyone reading it. It was for me- to sort my feelings and thoughts. Yet, I was encouraged to share my journey, so I made it public. It helped SO much. I would type and cry at the same time and it was incredibly therapeutic. I actually haven't been back to my blog in some time. I think about it a lot though. I would love to get back to it, but having two toddlers really doesn't allow for that haha! Feel free to read about my experience as I started my journey at https://missmollysmiracles.wordpress.com
With all that being said, hard days are more revolved around the fact that I have two toddlers and we are a typical family with busy lives- not because we have a child with special needs."
What is one thing you have gained during this journey?
"-Patience. Yet, I am still working on this. Every day is a new trial. Every day I learn a little more.
-Love. Love is unconditional. It really is. Why was I so afraid that I couldn't love Molly? Because now, I couldn't love her more. She is who she was meant to be. She is a light. She is a warrior. She is funny. She is kind. She is so sweet. She is my best friend. I don't know her any other way, and I wouldn't want to. She is Molly.
-Empathy. I'm a NICU nurse. I love that having Molly has allowed me to really connect with families and their NICU journeys. Sharing Molly with my patients is my own choice, but I love it. In the beginning, I always asked myself “why?” Why was I given Molly? Why did He choose me to nurture and raise Molly? I feel like this is why. If I can bring peace and comfort to just one family... whether they have a Down syndrome diagnosis, a terminal diagnosis, are going through a surgery, or just having a rough day, then THIS is why I was given Molly."
Is there anything you would like to say to another family facing this diagnosis?
"Take it one minute at a time if you have to. Thinking about the days ahead for me, was not good. Thinking about tomorrow was overwhelming. I made it through those first days literally by putting one foot in front of the other.
Reach out. If you're not on social media, join Facebook- even if it's only to seek out those going through the same thing as you. The Down Syndrome groups on Facebook, both locally and nationally, are a tremendous help. The people in them have experienced the exact same things you worry about. I could not imagine my life without this community. A lot of them I haven't even met, and the ones that I have, I now consider my best friends. Just remember, YOU ARE NOT ALONE!
Are there any resources or organizations available to help families like yours?
-Down Syndrome Association of Central Ohio. This is the Down syndrome website for the region of Ohio I live in. A lot of states have their own organization that have amazing resources and are a tremendous help navigating through the unknown. http://dsaco.net/
-Down Syndrome Diagnosis Network. Another great resource that can connect you with similar families in just a few clicks. Their website is great.https://www.dsdiagnosisnetwork.org/
-The National Down Syndrome Society. An inspiring website full of information.https://www.ndss.org/
Interviewee- Abby (Mom)