Yesterday marks two weeks since we got Ella’s diagnosis. It’s been two weeks of sharing, making calls, connecting with other families, and reading literature. Two weeks of wondering what the future has in store for our family and trying to formulate a plan moving forward.

After my last post, I heard from so many medical mamas who shared their stories of how they felt when they received their child’s diagnosis. All of them remember the day, and most can even remember exactly what was happening moments before they found out. For each one of us, time stopped and we needed time to catch our breath. I loved hearing from each and every one of them. It does not matter the diagnosis, these special needs mamas are my people. They get me in a special way.

The support and encouragement from friends and family has been tremendous. So many of you are asking how I am handling this news of Ella’s diagnosis. The truth is, great. Rett isn’t a death sentence. Trials are continuously taking place and the FDA just approved a drug that could potentially help improve some of the symptoms that are associated with the syndrome. Instead of being frightened and scared of what’s to come, I choose to remain hopeful. This new drug may not be the answer but it’s the beginning of wonderful things to come. There is just so much in the works.

I have been in contact with the nurse who is in charge of scheduling at the Rett Clinic at Boston Children’s. Due to the limited days, they see patients, the first available appointment isn’t until the beginning of August. At first, I was annoyed, but after speaking with Grace I realized that nothing major is going to change in the next couple of months. At this point visiting the clinic is more so they can see Ella and we can learn all we possibly can about Rett and what new resources are available.

There has been so much time for reflection and while most times I don’t immediately see the plan the universe had laid out for us, I have had time to draw some conclusions. When Ella was just about two years old her neurologist at Columbia mentioned Rett to us. At the time she told me to stay off google and not go down that rabbit hole. Clearly, she knew I would but felt she needed to say it anyway. I went down the rabbit hole and was terrified. Pictures and stories of regression were all I could think about. Had Ella been diagnosed then every twitch would have had me questioning what was happening. I would have been a mess.

I needed the last eight and a half years to become the fierce and unstoppable force that I am. I have learned so much about special education and advocating. I have made countless friends and allies. We have found a medical team we trust and have been through hell and back. Not knowing for me meant taking things as they come and not second-guessing everything.

It feels weird to be in uncharted waters and some days I dive in deeper than I am ready for. I have to take a few deep breaths, come up for air, and walk away. I have learned so much but also know each case of Rett is not necessarily treated the same. With Ella being atypical things look a little different for us.

A new path means a new direction. I was ready to sprint but realized until we pass some directional signs it’s going to be more of a stroll. A stroll is definitely the way for me to start this journey. A nice warm-up, with small steps, before I take off at record speed.

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