The first time I saw Tucker, many hours after he was born, I reached into the port holes and pressed my finger to the thin palm of his hand. He slowly wrapped his rice-sized fingers around. His fingers couldn’t fully wrap to come close to touching. The only thing pulsing through my mind and bleeding from my heart was this, “Lord. Please let him live. Whatever the cost.”
Over the months to come, Darrin and I repeated that same prayer together and separately literally hundreds of times. I didn’t know what the costs might be. Maybe I should have cared more, but I didn’t. I cared only about him. Focusing every bit of mind and heart capacity toward the prayers, the rules, the routines and the precautions that would help him live.
We’re approaching his third year. We’re coming close to the point at which his extreme prematurity will fall out of the number one spot on his medical chart. So, lately I’ve been reflective of our experience. Contemplative of that prayer and what it means three years later.
Of course immediately there were the most tangible costs-fiscally speaking. Say what you will about insurance companies, and believe me, I’ve griped with the best of ’em. But we would be financially depleted for the rest of our lives had it not been for our insurance. The inches-thick stack of claims in the extra large medical binder we have, tells me that the NICU expenses alone hovered a hair above one million. With a capital M.
The emotional costs were hard. Year 1 brought valleys of despair and fear that I didn’t realize my mind and heart were capable of withstanding. There were times I thought literally and truly I would crumble into the floor. Hovering between faith and panic. Thankfully the intensity and instability of the emotions from the first year leveled out considerably. I am, however, a different person than I was before they wheeled me into that operating room 3 years ago. Darrin will tell you he’s a different person too. It’s a cost we anticipated as we sat next to his isolette each day, I knew we would never be the same. It’s also the cost for which I’m most thankful. The Heather that emerged is more purposeful, more tolerant, and less agitated when she burns the cake, or when the sheets don’t match (less, not totally without bother).
The cost that caught me most by surprise were relationships. Almost every single close relationship we had, changed. Transitioned. Evolved. Strained. Flourished. Split. The equation was just too great for there not to be some serious shifts in our close unions. 5 months in the NICU followed by 2 years (plus) of isolation that included stringent rules of engagement for our family and friends is just plain stressful. For everybody. Not to mention the fact that we both changed throughout the journey, something our friends and family weren’t expecting.
As his parents, trying to make the very best decisions for this kid who we feel we’ve been given a second chance to raise, wasn’t easy on our relationships. And let’s be real. Friends and family who wanted to see us had some serious sanitized hoops they had to jump through. We fully recognize it and are so very grateful they worked with us in this regard.
Relationship strains seem to be the cost that has taken the longest to emerge.We’re coming up on 3 years and there are still some that are broken. Some are stronger than ever. Thankfully ones that were strained have begun to heal (God and grace are good that way). There are even some that have just recently hit their breaking point.
And then there’s the cost of normalcy. Truthfully, I hate the word. Normal is subjective. Normal is your personal story. We don’t know what it’s like to go into a restaurant and not Clorox wipe the menus. Our kid didn’t meet Santa until his third Christmas. His first birthday party had zero kids. We’ve missed family reunions, 1st birthdays, weddings, church services and just about every social event possible between the months of October and April for 2 years. We constantly worry about germs. We seem to defend our choices regarding Tucker more than people without medically fragile kids. We disappoint friends and families left and right with our restrictions or our absence. And this, even with a micro preemie who has had an excellent outcome. There are many stories of families who could list far greater costs. By many standards, we have not lived a normal life since my mouth and mind spoke that prayer 3 years ago. “Lord. Please save his life. No matter the cost.”
Here’s the thing. He’s worth it.
Hands down, no question, no hesitation. No matter how good, bad or hard his outcome is, had been, or still could be. His circumstance and all that comes with it has never been a burden to bear. Every single cost we will pay gladly. And would pay ten thousand fold for the rest of our days. In fact, I can’t even call them costs. God doesn’t really work that way-costs are something that must be paid in order to receive. He saved Tucker’s life without requiring anything in return. He doled out grace in heaps when I needed it most. He gave us the gift of Tucker without quoting a price. It’s our human-ness that assigns cost to the journey. Either way, the blue eyed kid I kissed awake this morning, was worth it.