My younger son’s third birthday was normal, but definitely memorable
We need to acknowledge the good times amid the bleak moments of Alagille
As we advocate for our son Finley, my wife, Dani, and I aim to share our family’s daily life for other parents learning about their child’s Alagille syndrome diagnosis. We attempt to be that light in the dark when the weight of such news about a child is at its peak.
To do that, we acknowledge that while it’s not all sunshine and roses, there are moments of regularity and happiness. Our goal is to celebrate that normalcy in the face of the daunting medical information we found while researching Alagille syndrome for the first time.
Finley explores the whale bones at the children’s museum. (Photo by Jay Sandstrom)
I remember how hard it was, immediately after Finley’s diagnosis, to ask our doctors questions like:
- “What does his future look like?”
- “Will he be able to do activities like other kids?”
- “Will he be able to lead a ‘normal’ life?”
Each of those questions, and the multiple others we asked, are nearly impossible to answer, especially early in the child’s life. As parents, we couldn’t help but go there. So while I cannot answer all the questions, I can provide a day in the life of Finley.
His special yet normal day
Here, for instance, is the tale of Finley’s third birthday, from earlier this year.
My wife and I started a tradition with our oldest son, Jackson; we kept him home from day care on his birthday so he’d get to have a special day centered fully around him. We kept this tradition going for both boys after Finley arrived, making sure each son got his special day with just their parents and no brother.
But there are only so many years you can follow this tradition before school starts, when it’s harder to get away on a weekday, so we place high importance on these special days.
Finley gets to “drive the bus,” which he finds exciting. (Photo by Jay Sandstrom)
This year was the first time that Finley understood his special day. It started like any other, with medications right after waking up, followed by his toddler formula and next some food. That was normal.
We then took him to a local children’s museum, one that we’d not yet visited. Finley was absolutely in heaven; he was able to explore everything he wanted to without needing to worry about his older brother.
He loved checking out the “shipping station,” which transported boxes up and down the conveyor belts. He marveled at the whale bones and learned about ocean animals. He slid down giant slides and played on the rooftop playground. He would’ve stayed there all day if we’d let him.
Next was meeting back up with his brother and going to Finley’s choice for dinner. Not many 3-year-olds are going to request Chinese food for their birthday dinner, but that was his pick. He absolutely loves “chicken rice,” also known as General Tso’s chicken with white rice. By contrast, his older brother is quite the picky eater.
While Jackson stuck to white rice and plain chow mein noodles, Finley was inhaling giant pieces of chicken. He was as content as he could be and loved telling the server how much he loves his chicken rice.
Next, we headed home, lit a birthday candle on a cake, and sang happy birthday. He loved singing along and couldn’t wait until the end of the song to blow out his candle. Then, as our normal nights always end, we gave him his evening medication, then his toddler formula, and then washed up for sleep.
It was an incredibly fun day. Seeing Finley take in the kids’ museum, where he had the ability to do so much, was such a joy for me. His curiosity and inquisitive nature were on full display. I treasure those days we get to have with each of our boys.
Finley gets ready to blow out his candle. (Photo by Jay Sandstrom)
I wish I’d had a crystal ball to foresee a day like this birthday when we learned of Finley’s Alagille syndrome. While the diagnosis was an answer to what was going on, it was nonetheless a giant black cloud of worry that entered our life. In that moment, I would’ve done anything to sense something positive regarding Finley’s future.
While everyone’s Alagille journey is vastly different, there will be days to celebrate, with happy memories to be made. Look forward to those days. Embrace them while you’re there. Don’t forget the difficult days, but let the normal days have importance. It’s so easy to dwell on the challenging visits to the doctors, the labs and blood draws, and the seemingly endless medication.
Celebrating the mundane and normal has been a vital part of my method of navigating my son’s rare disease journey. Everyone has an individual process, but this one has been helpful for me. I hope this story of a special, but still relatively normal, day in the life of my son can help someone find the hope they need when everything feels bleak.
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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