There are so many life lessons we’ve learned along the way. So. Many. And, there are many beautiful (and occasionally funny) memories from the last year+.
We had a friend watch our children one evening while we trekked up to the NICU for the evening. Upon our return at 10:45, she exclaimed, “I better let you update the blog, my husband always checks it at 11!” That made me smile. There were some nights that I just wanted to crash into bed, but I drug my sorry hiney to the computer. Looking back, I’m so thankful I did. There is so much I would’ve lost if I hadn’t written down my thoughts in that moment, as it was. I often thought, as I typed, “Is this really my life?” I mean, none of us wakes up and says, “Yo, God, make me THAT family.” But, he knocked and we answered the door.
I hated the mom guilt. It was brutal. The kids at home didn’t want us to leave, while leaving Luke at the hospital ripped my heart out, night after night. There was one particular moment of leaving Luke that is forever burned in my memory. The first 14 days, I was fortunate enough to reside at the hospital. First, I was a patient at Seton, then they let me “nest” (stay in the antepartem unit without charging us for it) where I was until Luke was transported to Dell. At Dell, they let us stay in one of their “bonding rooms” (a room used for all sorts of reasons) until Luke was extubated (on room air) after his emergency surgery. I asked my brother to come pick me up that Saturday afternoon. He and my sister-in-law had just finished their birthing class and they were so excited when they arrived at Dell. That was hard. To go from seeing your son hooked up to every monitor possible, leaving him in the hands of nurses I barely knew to hitting the “exit” button and hopping in a car with normalcy. That constant fluctuation between “hospital” and “the rest of the world” was most definitely our most difficult (daily) transition. There were days I totally felt like a double agent. NICU Resident by Day/Night and Mom everywhere else. It sucked. (that would be honest Kathryn typing)
I think what Luke has done – aside from increasing my prayer life – most is altering my perspective. On everything.
When I see a mom at a grocery store yelling at her kids a little too loudly, the former me would’ve thought, “Sheez, lady. Get a grip.” Now I wonder if there’s a reason. Does she have a baby in the hospital? Was she up all night with a sick child? Did her husband just lose his job?
When people stare at us, because of Luke’s helmet, I’ve gotten a tiny glimpse of what it’s like to have a special needs child with hardware. I have no doubt there are plenty of SN children out there who don’t have an apparatus to fend off comments. What about the mom whose child is ADD or has Asperger’s Syndrome? Do we stare at her in Mass because her son is not behaving? Are we quick to judge her parenting skills? (raise those hands folks, mine’s up there, too)
I’ve also wanted to slap some people upside the head. True story. A few weeks ago we were eating out and a lady commented (shocker) about Luke’s helmet. We get the, “Oh my cousin’s best friend’s brother’s cousin’s, stepson wore one of those” all the time. It’s sweet. I know people are just trying to make us feel comfortable. I’m cool with the helmet, but I’m thankful other folks want to be cool with it too. Anyhoodle, back to the story. So, she keeps talking and talking and talking. I’m starting to tune her out until she busts out with, “You know, if we’d just put babies to sleep on their bellies we wouldn’t have a need for helmets. I mean, I’m sure SIDS is bad, but look at the other problem we’ve created.”
SCREECH. Holy Moses, did she just say what I think I heard? That’s the other thing I’ve learned. Sometimes it’s worth having the discussion with folks and sometimes it’s best to just walk away.
I have been humbled so many times it’s not even funny. I’ve walked into waiting rooms into just about every specialist’s office at Dell and I’ve been reminded that it really is NOT all about us. Some of those moms carry some ginormous crosses. If you’ve been reading for a while, you know my take on crosses.
I’ll leave you with this memory. I hesitated to share it, because it was a Luke and Mom moment. But here goes…
Just before Luke’s bowel surgery in January – the one that took us completely by surprise – we were all alone in his room, waiting on transport. He was in the mood to snuggle and his little head was resting on my shoulder. I could hear the baby breaths, feel his little fingernails scratching my neck and he was starting to fall asleep. I turned on my iPod and we listened to Brandon Heath’s “Love Never Fails.” And we danced.
Love does not run.
Love does not hide.
Love does not keep locked inside.
Love is right here.
Love is alive.
Love is the way, the truth, the life.
Love will sustain.
Love will provide.
Love will not cease at the end of time.
Love will protect.
Love always hopes.
Love still believes when you don’t.
Love is the arms that are holding you.
Love never fails you.
In that moment I knew that I had loved Luke as completely as one can love another human being. There wasn’t a wasted moment on him. Every minute, every hour, every day – he had gotten all of me. All of my love.
Thank you, God, for giving our family a gift. A tangible, breathing, pretty darn cute gift. The trials were many. The road is still uncertain. The fear is there. The hope remains. The joy is inevitable.
Thank you for giving us so many opportunities to teach people about your love. YOU are an awesome God.