Grace

When Palmer went into the NICU, I couldn't imagine anything worse than watching your child struggle for life. His breathing rate was between 140-160 breaths per minute for most of the first week of his life. With every rapid breath, his chest strained, revealing his tiny rib cage and the sharp angle of his collar bones.

The first evening I saw him, he laid gasping in an incubator, so small, with so many tubes and wires. None of the nurses told me I could hold him. I would have been too afraid to, anyway. Instead, I reached in and held his tiny fingers, the fingers that had grasped mine as they rushed him away from me three days earlier, and reassured him between spells of uncontrolled tears that mommy was with him, willing him to continue to fight.

I don't know if it was that night or the next that I stood on my mother's front porch desperately asking my brother what would happen if he became too tired to keep fighting. He reassured me with talk of nurses and machines and other medical jargon.

But I already knew all that. What I was trying to express was the fear that he would become too tired not just to keep breathing, but too tired to breathe ever again. I couldn't say the words, though. So I put the fear away in a dark place, unmentioned to others, and after Palmer came home, where I never hoped to meet it again.

During those 10 restrospectively short, but nonetheless agonizing days, I never imagined that something could feel worse.

Until April 7. When a child with the soul of an angel lost the fight to breathe. And the world as it had always been for me ceased to exist. When two parents, who I only knew by the degrees only possible in this internet world of ours, experienced the reality of the fear I never could find the words to express.

I didn't meet Heather until the day of Maddie's memorial. I do not know her or Mike in the sense that most of us consider "knowing" someone. I never experienced the joy that was Maddie.

But as a NICU mom, as a mom who worries with every cough if her NICU baby will be okay this time, their loss opened up the place in me where that fear had found a home. And I can't, I won't, make it go back there again.

I emailed Heather in the weeks afterward with an idea of something I wanted to do, but I didn't want to infringe on their plans. I didn't expect to hear back--after all, who was I but a complete stranger with no right to take a claim to what they are experiencing.

I did hear back from Heather, though. And what I learned from that reply has carried through the weeks since--there is a grace in Maddie's family that we should all be so fortunate to witness.

It is that grace that has brought about the Friends of Maddie, an organization committed to helping NICU parents and babies through donations of support packs.

We all have organizations that touch us, and because they touch us, we choose to support them. All I am hoping for by writing this here is that one support pack will be donated, that one NICU family will receive reassurance that someone, somewhere, understands the fear they feel.

I wasn't so fortunate as to be Maddie's friend before April 7. But there will never be a day in the future that I am not.