There are life events or things that happen in life that seem like a once-in-a-million occurrence. You have heard of it happening to someone else but never thought it was possible in your own life. 

That’s what June 2022 felt like for me when I went into premature labor. But for us, those things kept happening. Those once-in-a-million life events turned into the rule, not the exception. 

Within the span of 30 months, my family experienced multiple life-altering events that dropped us into seasons of deep grief. And sprinkled within those two years, more grief piled on and on, one hit after the other. Aging grandparents, freak accidents, lost moments, diagnoses, miscarriages, terminal cancer, friends and family lost too soon, and on and on and on. I’m no expert, but I can say that grief changes you. My journey of grief is filled with many things, but the greatest has been hope. 

This is my story.

At 6 months pregnant, I went to the hospital. I felt a little off and wanted to be safe rather than sorry. It was a Tuesday and I texted my coworkers that I would be in later. I expected that once at triage, they would tell me that I was having Braxton Hicks, and they would send me on my way feeling silly but assured.

There was a cafeteria menu posted in the elevator. Tuesday’s meal this week was listed as “Fish and Chippie.” We laughed out loud at the ridiculous thought of eating fish and chips in a random hospital on a random Tuesday in June. Honestly, we still laugh about it sometimes. We hold onto those little moments of lightness and levity we found along the way. I never expected that just 24 hours later, my son would be born.

13 weeks early and fighting like hell, W rushed into the world. It was something out of a dream. You hear about stuff like this happening, but never to anyone in your close circle, and certainly never to you. It felt like I was standing in the corner, watching these things happen to me. It didn’t feel real. W’s first week was great. He was doing all the right things. They kept commenting on how strong he was and what a fighter he appeared to be. He was feisty and spunky; his little legs were always kicking. He was pulling monitors off with his toes and lifting his head up to get a peek at Dad. He was incredible.

At 1 week we got the devastating news that sometime during labor and birth, W suffered a brain bleed. Though not always, this often brings with it damage to the areas around the bleed that can lead to a variety of disabilities. We were already trying to wrap our heads around the reality of W’s preterm birth. And just as we began to wrap our minds around the possibility of having a disabled child, July 6 came. 

I will pause here to say that I am going to mention some medical things and reference child loss. If you are not in a place to read these things, please skip ahead or stop reading. 

We got a phone call in the early hours of July 6. Our son was critically ill, and we needed to come to the hospital immediately. That car ride is a moment that I will never forget. I sat in the car while my husband drove the 20 minutes to the hospital, and I wept. I cried out to God in a way I have never done before. 

This is not our story. It will not end like this. Our child will not die tonight. 

Over and over and over. 

I will pause again to say that my husband and I decided early on that we would not share many details of W’s health journey. His diagnoses and his medical story are his to share if and when he is ready. 

When we arrived, we were told that he was too critical to move to an OR. As we signed papers and gave consent to operate, an entire mobile operating room was arriving at our son’s bedside. No less than 20 doctors, nurses, and techs were surrounding us. We looked at our son and told him that he was a fighter. We squeezed his hand and said that we would see him soon. And then we left him there and sat in the waiting room.

The aftermath of that surgery and the complications it brought about are details I won’t share here. What matters is that our son lived. We had really low lows during our hospital stay. We also had days of waiting, days of watching paint dry, days filled with dreams of the future. After spending 168 days in the NICU, after multiple surgeries, treatments, countless blood transfusions, and so much more, W came home just 18 days before Christmas. We breathed a sigh of relief and experienced Advent in an entirely new light. 

He was home, but life didn’t get easier. We entered a new season of grief in 2023. Grief for the life we expected and planned for that would no longer be. Grief over what we experienced and the forever ramifications it held. Grief for the life we were missing out on – the typical parenthood experience. We were forever missing out. We never left the house unless for work or doctors appointments. We guarded our son’s health with our lives, and we did a damn good job at keeping him well and away from sickness.

Around his first birthday, we finally started to emerge. He was still fragile, and we were still protective. The next year brought comfort and baby steps. Life was starting to feel more manageable. We could finally breathe a bit better. ( ) June of 2024, I looked at my husband and said, I think we are finally coming up for air. We are in a good place. W is doing amazing. We are doing an amazing job caring for him. I think this is a turning point. 

Then, July 4, 2024 came.