We cannot change the paths we were given...Tyler (Williams Syndrome)

"Tyler’s journey all started with a simple 6 month wellness check. Of course, it felt like any other day, we were excited to see how much weight he gained, how much taller he was and ready to hear how great he looked. ⁣

His pediatrician came in, did all the doctor things, and then listened to his heart. He listened a lot longer than I was used to seeing, and kept going back and forth, from his chest to his back.  A MURMUR. ⁣

A heart murmur is the sound of blood flowing through the heart, due to anything from healthy heart exertion during exercise to a diseased heart valve or other abnormality. He assured me that it was probably nothing, but just in case he wanted to send us to a pediatric cardiologist.⁣

Thankfully, things moved pretty quickly and we got right into the Cardiologist. I do not know how much longer I could have waited not knowing. Little did I know, this was nothing compared to what was coming. ⁣

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I want to start by saying, his first cardiologist will forever hold such a special place in my heart. She has no idea the amount of love our family feels for her and her knowledge, empathy, sympathy and just overall excellent care she provided to us. ⁣

During our first appointment they wanted to do an echocardiogram, (ultrasound of the heart). Tyler did amazing; and it took a solid hour to complete!⁣

We were then brought into a different room, and I remember I was holding Tyler while standing up. She asked me to sit down. I immediately looked at my husband and saw the same fear I was feeling in his eyes.⁣

I knew what she was about to tell me would forever change our lives. ⁣

Honestly, the rest of the appointment was such a blur, but she told us that our 6 month old baby had narrowing of his large blood vessel that carries blood from his heart to the rest of his body. It was called more specifically: Supravalvular aortic stenosis, (or SVAS for short). ⁣

Not only were we in shock from hearing this news, but then we learned that SVAS is often linked to a genetic condition known as Williams Syndrome. ⁣⁣

As that domino fell, it lead us to Genetics for further testing. ⁣

Our first appointment with genetics was hard. I remember the doctor coming in, immediately looked at Tyler before even introducing herself to us, then looked at me and said: “Yes. I believe he has Williams syndrome.”⁣

I got so defensive, I was not educated, and I felt so much anger, wondering why she felt like she could diagnose him just based off of the way he looked!⁣

We then did the genetic test and 4 weeks later I got a call from the counselor. She asked me if I was driving, I told her no, and then she told me that Tyler DID have Williams Syndrome and from that moment on our journey with Tyler and WS began.⁣

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I allowed myself time to grieve, to be sad and angry and then I just woke up one day and decided that was it!⁣

I realized this wasn't going to change; this wasn't going to go away.⁣

I realized that I needed to do every single thing in my power to make Tyler's life easier, to give him the tools he needed to succeed. And my husband and I vowed to use and utilize every resource we could find for him.⁣

We cannot change the paths we were given, but HOW we go down those paths, are up to us. ⁣

⁣I will say one last thing. If I could go back to that day of the echo, to the day of the genetic results and tell myself things were going to be just fine, I would.⁣ Tyler has exceeded our expectations. He has thrived in all areas of his life so far, and he has brought so much joy and pure happiness to every single person he has met.⁣

I never believed the saying: “things happen for a reason” - until Tyler was brought into our lives. I suffered two miscarriages before him. They were devastating, completely devastating, but in order for us to be given Tyler in all of his form, I believe it was supposed to happen exactly as it did.” - Jaclyn Scarborough @jaclynash on Instagram or Two Paths, One Journey on Facebook