I recently met my next guest writer through a very dear friend of mine. Everyone, meet Kaeti! She carries herself with such grace and strength. She and her husband, Nick, are an inspiration to so many and I am honored to have the opportunity to share their story with all of you. It is full of hope, perseverance and a true miracle.
I have to start by thanking Carly for sharing our story. It is an honor anytime you are asked to talk about your children, but especially when you get to spread hope to other families who may be going through a similar situation.
My husband Nick and I got pregnant with our first child less than a year into marriage. We were both eager to start a family and were elated when we were blessed with that opportunity. About 16 weeks in we were at a routine OB appointment when I mentioned I hadn’t heard back after our genetic testing. My OB implied “no news is good news” but would look into it as we were checking out. As we approached the front desk, we were suddenly wisped back into our exam room. That is when we found out that there was a 1 in 20 chance our baby had Trisomy 21. It was a shock, and a lot to process over 24 hours. However, an effort to fix her mistake, my doctor was able to get us into the fetal maternal specialist the next day! Most have to wait weeks after getting this first bit of news, so that part was a blessing! At that appointment, the specialist confirmed the diagnosis of Down Syndrome. But that wasn’t all. He also pointed out other health concerns and 3 large cystic hygromas. The hygroma on her neck would most likely lead to “fetal demise”. I’ll never forget those words. I even recall questioning the definition of “demise”. Did this doctor just tell me our baby was likely going to die? I left with fear, tears, a sticky note of medical terms and an envelope with the gender of our baby.
On May 2nd, 2018, we discovered we were having a GIRL! On May 5th she had a name and family and friends gathered for a gender reveal and on May 8th our prayer warriors held a prayer time in a beautiful garden. Of course, we almost broke Google with our countless questions, but all things considered, we felt a great amount of peace that only the Holy Spirit can provide. We were confident that Jesus had the power to heal our Wynnie, but we also knew he’d provide strength if we were to lose her.
On May 23rd we went to our next appointment with the specialist to find that all 3 cystic hygromas had completely disappeared. It was a miracle, and we gave God all the glory (and so did Wynnie – see ultrasound picture from that day). Of course, this news took a huge weight off our shoulders, but we still had some hurdles to jump. Neither Nick nor I knew much about Down syndrome, let alone raising a child who may experience extra challenges. I remember my biggest concerns being for her adult life. All of those fears were stripped away after I was introduced to Extra Special People (ESP), whose mission is to create transformative experiences for people with disabilities and their families, changing communities for the better. And they do it so well! Not every community has ESP (yet), but they all have some opportunity for support and community. I believe that becoming part of the ESP community has given our family boundless peace, hope and excitement for Wynnie’s future!
I wouldn’t be giving Wynnie’s story justice without praising our amazing support system. My husband, Nick, is an amazing father. He is Wynnie’s favorite person in the whole world. Wynnie’s brother, “Bubba” thinks the world of his sister and will always be her best friend. Nick and I both are also blessed to come from remarkable families and have the most uplifting friends.
And Wynnie…our pride and joy! She loves hard and is stubborn as hell, all while remaining everything we could have ever imagined, and more! We believe we were given the ultimate gift with Wynnie. Our relationships are deeper, and our perspective on life is forever changed. Only one in 700 families are given this opportunity and we are so thankful to be one of them!
Click here to watch a a llittle video interview we did!