“I worried throughout my entire pregnancy. Our testing and ultrasounds showed a perfectly healthy baby. At our last ultrasound, the tech said his head appears abnormally small, but couldn’t get a good measurement.

Labor and delivery was normal and uneventful. Our midwife during a check said “he has a normal sized head, and not a huge head some of these kids have. This should be a breeze!”

I remember holding him. Looking at him. Hospital hat on. Wrapped up. Thinking “he really is perfectly healthy.”

It wasn’t until the 2nd pediatrician came to see him (the first one gave all thumbs up) did she say something about his head size.

Immediately we felt blindsided. Maybe that last ultrasound measurement was right? Maybe what felt like a “normal sized head” to the midwife wasn’t actually normal? Our world was upside down. How did we not notice? Many appointments and a brain MRI later and we have his initial diagnosis as “Microcephaly with simplified gyral pattern” .
We had such a difficult time getting the appointments for the tests and then getting his results that our initial reaction was not sadness. We were a bit frustrated but more motivated. “What is the plan?” That has been our focus.

We are just beginning our journey. It has been a month since his diagnosis. I believe I am just starting to let it hit me. I haven’t been in denial, just chosen to put my energy into “the plan” but truly I am devastated for my boy. I grew up in a special needs household. It was wonderful, but incredibly difficult.

I watched my parents fight my whole life for my brother. I know what this road looks like. I didn’t want this life for my family or my child. I am mourning the life I thought we would have so that I can embrace the life we will.

And then I look at Jackson. He is amazing. Every day he reminds me that HE is happy. HE is progressing, learning, and growing. I am trying to focus on that. We don’t know what to expect with his diagnosis so it is very easy to live in fear and sadness.

My husband and I are choosing to take our direction from our son. We will take this as it comes and try to remain positive and grateful for our amazing boy!”

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