Okay I was short the other day, so now you’re gonna pay! Just kidding. Kind of. I hope this story interests you. And when you are done, please share your “hints of greatness” you’ve seen in your child, loved one or yourself before D-world welcomed you aboard.
Some D-Moms were asking one another an intriguing question the other day: was there anything in your child’s life before diabetes that gave you hints – now looking back – that it might be coming?
It’s a question we all ask. Because even though our heads know there was nothing we could do to avoid entry into this D-world, our hearts just want to find some kind of hint; a solution; a place where we could have dodged left and avoided our path right into Type 1 diabetes. It’s what’s behind those focused on “clusters.” It’s what keeps some awake at night.
But it make me think of another somewhat similar question: was their anything in your child’s life before diabetes that gave you hints – now looking back – that your child could champion all this? (And by champion I don’t mean rock perfect blood sugars 24/7. I mean face it all with grace and determination and pizzazz and flexibility and all the things a person with Type 1 diabetes needs).
Which got me thinking about Lauren. And then a memory came back. In it, perhaps a hint that my little girl would some day become a brave girl (and eventually young woman), smiling in the face of incredible adversity.
It all started when she was a day old. I’d had her via C-section (they thought she was going to break the record for biggest baby born in Boston and so, even though I’d have a 10 pound baby naturally, they pushed me to do the C-section). She didn’t break the record. But she was pretty ginormous.
So the morning after she was born, I reached out and grabbed the medical records hanging on the end of her little rolling crib. (I remember feeling like I was sneaking and then realizing: this is MY child and MY information. Foreshadowing of future medical appointments?) On it, a note read, “Dusky spells.”
Hmmm. I wondered, and buzzed the nurse in to ask her what it meant (I still wasn’t up and walking yet).
“Oh, it’s very common with C-section babies,” she said. “If you see her turn a little gray, just grab that suction thing right there and do this (she showed me how to clear her throat with it).” Gosh, might have been good to mention that to ME, I thought. But whatever, time ticked on.
A few hours later I was out of bed and sitting in a chair, holding Lauren and smiling. All of a sudden she just went…kind of limp. I looked closely and something told me it wasn’t just sleeping. She turned …. Dusky. So I grabbed the suction thing and tried to clear her throat, only she just kept…slipping. In an instant, her face and body started to turn blue. I screamed.
“SOMEONE! SOMETHING’S WRONG!” (I do want to mention here I was in a fantastic all-maternity hospital that I think the world of. But still.) That same nurse popped in and said, “Okay, as I said, just suction where I showed you.” But something made me scream even louder
“NO!” NO! SOMETHING IS SO WRONG!”
Another nurse popped in the room, grabbed Lauren and that’s when it all went nuts. They called a code. Right in front of me. Grabbed my new baby (I remember thinking thank goodness she’s so big, she can take a licking!) by the feet, smacked her over on the bed and started working on her. Instantly, the room was filled with doctors and nurses. I was in my chair, unable to move from the C-section and from the fear. The zipped her away on a cart and a nurse turned and said to me “Just stay right there. I’ll come back.”
And I sat there. I had no clue if my new baby was dead or alive. I didn’t have the ability to get up and run after them (a large stomach incision will do that). And frankly, I didn’t know if I could face whatever was going on. The clock ticked. It might have been 15 seconds. It felt like forever.
My phone rang. I picked it up. It was a woman I used to do playgroup with for my older child. She said, “Is something wrong?” and I said, “Something happened. I think Lauren coded. I don’t know if she’s alive. I’m waiting.” And here’s where we can all laugh – that nitwit of a woman replied, “Oh my. Well I know you would want to know this – Spot (name changed to protect the ignorant) died this morning.”
I think I said a really bad swear word. I know I hung up quickly. I also know that woman never spoke to me again because I was so insensitive when she told me her dog died. (She probably thought at the time “Jeesh. She’s only known Lauren for a day. We had spot for 15 years.” No offense. I love my pets. But I would not have told me that a dear aunt died at that moment.)
After hanging up I dialed my husband at home and said “Something’s wrong. Stay on here with me. I’m scared.”
Then the doctors came in the room. I don’t remember if I hung up or kept Sean on the phone, but then told me Lauren had indeed coded but was breathing now – and in the NICU. They had a team looking at her; she was on a heart and lung machine. She was safe. For now.
It took about a day to diagnose her (or longer. It’s all very much a blur now). It was a combination of severe apnea and gastro esophageal reflux. In other words, she could not hold any food down, was spewing up acid and could just randomly stop breathing. For no good reason.
Now this was 1991. Treatment and understanding was still new. So Lauren lived – for a good part of the beginning of her life – in an NICU. The hospital let me stay for nine days but then eased me home. I had a pre-schooler there who needed me. They needed the bed for others. Lauren was in good care even if she’d not been able to hold down food or breath regularly on her own yet. I remember riding down the elevator to drive home and thinking “Oh my God.” But also thinking “She’s alive. We’re going to figure this out.”
The weeks were stressful for me. Because I was an independent contractor working full-time (and we needed my salary), I had to go back to work full-time as a crime reporter when she was just three weeks old. This had not seemed too horrible before she was born (I had an amazing nanny) but now she was in Boston, hooked up to machines and I was out working all day and night 50 miles away.
So I saw her every day. Sometimes early, sometimes late at night. And here’s where the hint comes in:
She was quite a little character in that NICU. Not just a fighter, but a clown. And determined as all heck to set her own standards.
The nurses loved that she was huge; she was surrounded by the tiniest and sickest new babies in all of Boston (she was one of them too, but she was just so big she looked…like a toddler almost!) Each day the nurses would tape bows on her head and take a picture to show me. They had to do that because she’d rip them right off. I’d hold her the whole time she was there, and even as she’d struggle or fade, she’d look me in the eye as she went out as if to say “I’m here, mommy.” She lifted me. Foreshadowing indeed.
One day I showed up to see her and they’d moved a real baby crib into the NICU for her, replacing her isolette. She was still hooked up to all her tubes and wires and machines, but in a pretty white crib.
“What gives?” I asked the nurse.
“Oh, she was up on her elbows and knees banging her head against the side of the isolette to get out. We had to figure out a way to please her!”
My Lauren, new to this world but separated from her family, was up on her hands and knees banging her head to get attention and have someone know she was saying “I’m getting out of this situation!”
And there is my hint.
My baby was born a fighter. She was born with guts and determination. She started her entire life facing adversity, and did it with a smile on her face but no need for a silly bow on her head.
Eventually, she came home. Because she was actually a patient at two NICU’s across Boston from one another (they used to zip her back and forth via ambulance. It was like she was a commuter baby. When I’d head in to see her I’d call and say “Which office is she working out of today?” They figured out the right cocktail of meds to keep her breathing; they concocted a gross “food” I called “Mud” to help her hold at least some food down. They trained us in the heart and lung monitor (I don’t know how they are today but back then they alarmed if you looked at them) and then gave us the choice: home with the monitor or without. Petrified as I was, I chose without. I just had this feeling: my girl wasn’t going to give up.
So that first night she was finally home, we tucked her into her OWN crib and said goodnight (bonus prize for having a baby in NICU for a long time: they come home on a perfect schedule!)
The next morning we woke up to our pre-schooler asking us to play. No baby cries. No movement, even a shuffle, on the monitor. Oh. My. God. We both said. We should have chosen the monitor.
Terrified, I walked into her bedroom, only to find her up on her knees, smiling at the world, as if to say “Here I am!”
She was fine. And she’s always going to be.
I had every hint that my daughter would face a difficult world with grace and determination.