Christmas Magic

It’s hard to believe Wyatt’s first visit with Santa was while he was in the NICU, spending a good amount of time fighting hard against the odds. I remember wishing for some normalcy in our days, but also being so very excited that he would get to meet Santa. Now I can’t help but chuckle because we got to see Santa without fighting a million germs. The “perks” of being inpatient in the hospital, I suppose. We didn’t have to fight any lines of people, only all of his lines for feeds, oxygen, heart rate, pulse ox, and IVs. 

This was his first visit with Santa, almost three years to the day. 

So tiny. He was so small he fit in a stocking that year. I wonder if he’ll let me try stuffing him in a stocking this year...

He got to see Santa again this year. This year poor Santa had his beard tugged and his glasses pulled off. But it was just as magical. 

We remain forever grateful for the progress he’s made these last three years and the memories along the way. Wishing each of you a magical Christmas. 

Birthday Eve...

Sitting here, with tears in my eyes, as I think about how I felt three years ago today, on Wyatt’s birthday eve. I felt anxious, excited, but also terrified. I was terrified of what would come next. What would happen when my son, who was expected to be born with a significant heart defect, took his first breath? Would I know what to do, to care for him, to provide for him, to be his everything? 

I’d love to say those same feelings don’t plague our family regularly. But that isn’t the case. 

The first year of his life, we lived in fear of the scale. Of needing a feeding tube. We lived in fear of a looming diagnosis. We lived in fear of blue spells, choking events, and ambulance rides. The unknown (and sometimes the known) scared us. On the eve of his first birthday, we gathered around his crib in the hospital hoping he would be one step closer to coming home from his g tube placement surgery. 

The second year of his life had fears of a different kind. We had a diagnosis, but we knew it didn’t really describe him. We had more questions than answers. But, somewhere along the way, we realized we had overcome the feeding tube obstacle and he was thriving. Then we got a new diagnosis of obstructive sleep apnea, and we became terrified of that unknown. Some more months (and hospital visits) passed, we lived in fear of his constant infections. Pneumonia. More infections. Bronchitis. We became terrified of germs and viruses. We got his wheelchair, stander, bath seat, BiPAP, first hearing aid, and he continued to grow and thrive. We became terrified of how to manage all of his appointments, his therapies, his needs. We had some more diagnoses that year. Epilepsy was the biggest one. On the eve of his second birthday, however, we gathered around his crib counting our blessings because we were home. We took a moment to reflect and realized we faced our fears head on, and we kept our son alive for two years.

 

The third year of his life has been a wild ride. We are mostly excited, with some anxiety, and much less terror on our minds. We had some scares with seizures, another diagnosis (maybe two.. it’s hard to think when you are sobbing), and added his “boots”. But mostly we lived while laughing, watching, learning. We laughed with Wyatt, we watched him as he learned about the world around us, and learned as he taught us so much. He taught us to live with less fear. To fight for him. To never doubt him. He learned to sit on his own. He got his new hearing aids this year, some shots, some emergency medications. 

On the eve of his third birthday, I feel a lot of feelings. I’m excited... 

.... to see who he continues to grow into. 

.... to watch him continue to learn and explore his world in a new way. 

I’m anxious...

.... to raise a threenager. 

.... about the unknown. 

I’m sad...

.... I tucked in my two year old, and tomorrow he will become a three year old. 

I’m staring, with tears in my eyes, as he laughs at me when he should be sleeping. 

But I’m no longer terrified.