Alagille made us constantly worry about child milestones
When our son was diagnosed, it was hard to remain positive
Watching your child achieve milestones is one of the most rewarding aspects of being a parent. The joy they exude when learning or accomplishing something new is truly special. Our 4-year-old son, Finley, recently came home from day care bursting with excitement to share that he had learned to write his name — or rather, he had learned to write the letter “F.” As we celebrated this achievement, I was transported back to the early stages of Finley’s life, when he was diagnosed with Alagille syndrome. During that time, we worried about whether we would ever see him reach any milestones.
When our oldest son, Jackson, was born, the pregnancy and birth were as “normal” as one could hope for. While we certainly wanted to see him hit his milestones, any worries we had about him being on track were mainly due to being first-time parents. So when my wife and I decided to expand our family, I felt prepared to handle the challenges that parenthood would bring, thinking our new child would find his own path in life. Little did I know that life was about to throw us a curveball.
Noticing every little thing
Finley was born a month premature, and we spent two weeks in the neonatal intensive care unit afterward. Honestly, I thought that would be the most challenging part. Once we got home, I believed we could focus on adjusting to our newly expanded family. Unfortunately, that was wishful thinking. After only a few weeks at home, we found ourselves admitted to our local children’s hospital to investigate what was happening with him. That’s when my worries about milestones really began.
Finley is all smiles for pre-K picture day. (Courtesy of Jay Sandstrom)
I distinctly remember asking one of the doctors about what Finley would be able to do as he grew older. It was a challenging time to remain positive, marked by uncertainty and fear, and those feelings lingered for quite some time.
During Finley’s early years, my wife and I worried about every little thing. We meticulously tracked how much formula he consumed, stressed over his fluctuations in weight, and fixated on the milestones he was or wasn’t reaching, constantly questioning whether he would be on time. However, we struggled to recognize that having a rare genetic disorder didn’t mean Finley wouldn’t hit his milestones. Many children follow their own timelines, and Finley was no exception. Yet, every time he achieved a new milestone — like laughing or crawling — I made sure not to take it for granted.
Fast forward to today, and we are just a few months away from Finley’s fifth birthday. He loves being in pre-K and is incredibly excited about starting kindergarten next fall. I see all the signs of him growing up and preparing for this next big step in life.
As we navigate these significant life changes, I remind myself of how it felt not to know if we would ever reach this point. I once wondered if he would even make it to school. We cherish every fun moment along the way and ensure that we celebrate each milestone as a significant accomplishment.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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