During our first 9 week routine ultrasound, Devin and I were brimming with anticipation. We were hoping to hear our first baby’s heartbeat for the first time. We were not expecting two little heartbeats! To be honest the news was a little overwhelming at first, we had never done this before. How would we manage two babies?! We hadn’t even shared our pregnancy news yet.
Once we were able to fully process the exciting revelation, we found strength in each other and our amazing support systems. We had enough love to go around and we couldn’t wait to welcome our two bundles of joy, due on November 1st, 2021. I had a healthy pregnancy up until late July. At the time I started having premature contractions, after a visit to the hospital we were reassured everything was okay. However, Jack and Ellie had their own plans and they arrived on August 1st, 2021 at 26 weeks and 6 days.
Their NICU journey lasted 11 weeks, and we welcomed them home (they were finally discharged) at what would have been 38 weeks gestation. Ellie required oxygen at home and overcame a number of challenges early on. Today she’s a strong, thriving four year old.
Jack’s path has been more complex. At just two weeks old, we were told he had a brain bleed. The doctors gently explained we’d “have to wait and see” how it might affect him long term. On the day of his discharge, we were given a more definitive diagnosis: Periventricular Leukomalacia (PVL), a type of white matter brain damage often linked to prematurity. From that moment, we understood that a diagnosis of Cerebral Palsy (CP) was likely—and it was confirmed when Jack turned one.
The past three years have been a turbulent emotional experience. Devin and I were not prepared for what we faced: pivotal decisions, sleepless nights, and unimaginable fears. Through this experience, our family has had more laughter, pride, and resilience than we thought possible.
Cerebral Palsy is not a progressive condition—it doesn’t get worse over time unless compounded by other medical issues—but it does come with a wide range of challenges and co-existing conditions. We’ve come to focus on what Jack can do and celebrate each milestone, no matter how small.
At four years old, Jack can crawl, stand, and walk using a walker. He hasn’t yet walked independently, but he works hard every single day. He’s non-verbal, but is incredibly expressive and is learning to use an Augmentative and Alternative Communication (AAC) device. Even without words, he lets us know exactly what he needs most of the time.
Jack currently attends occupational therapy twice a week and speech therapy once a week. We also participate in intensive therapy programs throughout the year, which have made a big difference in his progress—I’ll be sharing more about those in an upcoming post!
This journey has taught me to find gratitude in the smallest of wins. It has also connected me with other parents walking similar paths, and my intention by sharing our story, others will feel a little more seen and a little less alone.
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*The information in this post is based on personal experiences and should not be taken as medical advice. See full disclaimer/privacy policy page here [Disclaimer/Privacy Policy – Navigating Life with Special Needs: A Family Blog].