Three days before our happy, but failing to thrive, 2-month-old baby was admitted to the hospital.
I had no grasp of what a long and pot-holey road we were stepping onto last year when my then-2-month-old son was diagnosed with Failure to Thrive and admitted to the hospital. It was a road with no visible end; a road that offered incredible promises just around the bend, but then twisted and turned and morphed into a completely new road with thugs who beat us up and took our money as soon as we reached that bend; a road that just didn’t know when to quit.
That first three-day hospital stay was hell, but it was only the beginning. I remember feeling like I was gaining a new understanding of my fellow mothers who have walked that hospital road – I didn’t know how exhausting a hospital can be even though you’re doing nothing but sitting, I didn’t know how terrified you could feel at unanswered questions, and I didn’t know how isolated you can feel even though you’re being interrupted every 30 minutes. I didn’t know how scared you could be to leave the room to take a shower or eat a meal for fear that your sweet baby would cry and nobody would be there to comfort him. I didn’t know how hungry you could be, and I didn’t know how dirty you could feel after days in that stuffiness. I didn’t know how hard it could be to process what Doctor #1 is telling you after hearing an opinion from Nurse #2 followed by suggestions from Specialist #3. I didn’t know my body could actually heave with excruciating sobs.
Always happy — even with a needle stuck in his vein
And that was only a three-day stay. I remember feeling bad for the friends I have neglected during medical trials, and I vowed to do better with the next friend experiencing something so horrific. I remember thinking that after that stay, if I ever had a friend with a child in the hospital, I would know just how to help.
The next six months were filled with doctor visits full of positive I-can-float-on-this-feeling-forever weight checks, followed by heart-wrenching I-never-knew-a-lack-of-ounces-could-weigh-so-heavy-in-my-soul weight checks. I remember thinking: If I ever have a friend with a baby who struggles to gain weight, I’ll know just what to say.
There were weeks when I was quite literally chained at home to the breast pump, meticulously recording how many ounces my body could produce, followed by bottles of supplementation, followed by breastfeeding to give him every last drop I had. Everything in my life literally stopped as I focused only on feeding my baby boy. And I remember thinking: If I ever have a friend struggling with feeding issues, I know just what I’ll do for her.
There were specialists, a surgery, a doctor change, frustration, exhaustion, lack of hygiene, lack of housekeeping, lack of anything I loved that could make me feel like a real person, tears, tears, and more tears. And I remember thinking: If I ever have a friend experiencing this sort of confusion and frustration, I know just what I’ll say to her and do for her.
But all through that time, there were people who reached out in so many ways. There was so much kindness, I honestly couldn’t keep up. Feeling so grateful for the good experiences I was having in the midst of my turmoil, I began to craft a post in my head: What to say or do for a parent of an ill child.
But then there was the hurt: strangers and non-strangers who said things that cut to my soul, opinions that made me feel judged, people who said the wrong thing at the wrong time. I began to get bitter. I thought to myself: If I ever have a friend going through this, I will definitely not say or do that. I began to craft a post in my head: What NOT to say to a parent of an ill child.
One day, before I could write that snarky post, my sister in law was having a rough day with real burdens. I wanted to make her feel better; I hated that she was struggling. And wouldn’t you know it? Out of my mouth popped the exact words I swore I would never say to anyone; the words that had cut me so bad, that had made me feel misunderstood, that had trivialized my struggle. I stopped myself immediately. “This isn’t helpful at all. Forget I said that,” I bumbled out.
It bothered me so much that I apologized again later, and she laughed at me. “It wasn’t as bad as you’re making it seem!” she said.
But I couldn’t believe I had said the very words I had vowed I would never say. It was my first chance to speak the words of wisdom I had stored up from my experiences, and instead I fell back on the trite sayings people had said to me. How easy it was to say something so thoughtless in my attempt to make her feel better!
While that rickety roller coaster of our family’s life twisted and turned, I knew all along that all of those comments that hurt me came from well-meaning places. Nobody was trying to hurt me. I told this to myself each time a hurtful comment rolled in, and I tried not to let the bitterness overcome me. But I didn’t really get it until there was someone I couldn’t help. It wasn’t until I grasped for anything to say that could help her feel better – and I grasped so wrong – that I realized: Everyone has said the exact right thing; sometimes it just happened to land on my ears at the exact wrong time. And that’s not their fault.
I can’t write that list of what to say or what not to say to a parent of an ill child, because the things that would make my not-to-say list might very well make somebody else’s to-say list. There is just simply no way to get it exactly right because we all deal with sensitive and difficult issues differently.
I know I’ll be a more caring friend when I have a friend go through a heartache, but I also know I won’t do it perfectly. And goodness gracious – I hope she’ll forgive me if I get it wrong.
Maybe that’s the best thing I’ve learned from all of this: Any attempt to help, to show love, or to show caring is right. Even when it’s wrong.
He eventually figured out gaining weight is cool — even if he developed a bit of a bad attitude along the way!