“No parent should ever have to decide if they can afford to save their child’s life.”
– Jimmy Kimmel
By now, you have probably seen Jimmy Kimmel’s emotional monologue detailing the birth of his son Billy and the heart condition that he was born with. Within minutes of watching (okay, seconds), Peter and I were in tears. As Jimmy shared the harrowing and terrifying first few hours of Billy’s birth, we were fluttered by the memories of our own terrifying experience during Oliver’s birth.
In September of 2015, our son Oliver was born with a very large and undetected (in utero) Lymphatic Malformation-a vascular anomaly that affects roughly 1 in 50,000 children. (Read more about his birth story HERE). Fortunately, like Jimmy Kimmel’s son, our doctors at Cedars Sinai Hospital were also able to identify the issue and we were sent for an evaluation at Children’s Hospital Los Angeles when he was just a week old. From there, we were teamed up with specialists in the Vascular Anomalies clinic who developed a plan for treatment. In February 2016, at 4 ½ months old, Oliver underwent several rounds of sclerotherapy over the course of 3 days. Two months later, he returned for another round of sclerotherapy. His final surgery was just this past December, in which he underwent surgery to excise the remaining mass and remove some of the excess skin on his chest.
At some point, in years from now, he may have to have another surgery to remove additional excess skin that may still remain. But for now, we are done and it’s time to heal.
Has he healed? Is he OKAY?
We get these questions a lot. The general answer is YES. Yes, he is OKAY. He is healthy. He is thriving. He is a todder. Messy. Feisty. Curious. And Elmo obsessed. But I would be lying if I said that our experience isn’t engrained in all that *I* do and all that I see. I still see his scar when I bathe him. I still feel the lump where his flesh still hangs. And I still wonder if any of this experience has changed him and will sit in his subconscious for the rest of his life.
I walked him into his last surgery, holding my own tears back as they placed the gas mask on him and he screamed “Mama.” This is why he doesn’t sleep, I tell myself. Leaving mommy will always be terrifying.
I know I’m not the only mom that worries. We all look at our children and at some point in time, and wonder: Are they okay? Is this normal? It’s what we do. But the truth is, while we are on the other side of the unknowns now, his condition at birth and all that followed (excuse me, his “pre-existing condition” that our government has decided may not be protected) is something that I may not ever recover from.
What does give me strength, however, is gratitude. As cheesy, Namaste-crunching and utterly bullshit as this sounds, it couldn’t be more true. You see, going through something like this—having a baby born with any kind of disease—changes the way you see the world. Does my 9 year old’s lack of urgency (to get ready for school) in the mornings still make me insane? YES. Do I still curse the weekends when my husband has a golf tournament? YES. Do I still get annoyed when they run out of decaf at Starbucks and I have to wait for a pour-over? YES. Because I’m impatient. And I’m human. And zen is NOT my middle name.
But I’ve sat in a hospital, next to a baby hooked up to machines… down the hall from more babies hooked up to machines, some who were NEVER GOING HOME and IT. CHANGED. ME. I understand what luck means now. And not a day goes by that Peter and I don’t tell each other how lucky we feel.
As Jimmy Kimmel said in a recent (re)tweet after sharing the story of his son:
“twitter idea for 2017: find real things to be mad about…”
But let me cut to the chase, because if I stay on the subject of Oliver’s surgeries I will start crying again, and I am currently sitting at Starbucks (they had decaf, thank GOD) and having a bulging pregnant belly already causes plenty of stares:
You don’t have to be Jimmy Kimmel to get the attention and care that your child needs at Children’s Hospital of Los Angeles!!! CHLA treats more than 300,000 children annually from every socioeconomic background imaginable. No child requiring care is ever turned away from CHLA, regardless of their ability to pay.
“If your baby is going to die, and it doesn’t have to, it shouldn’t matter how much money you make. I think that’s something that, whether you’re a Republican or a Democrat or something else, we all agree on that, right?”
Each year, one in 25 Los Angeles families need the comprehensive care of Children’s Hospital Los Angeles for their child. For some children, a quick trip to CHLA is all it takes for healing. But for other more critical or complex cases, the stays can be longer or necessitate repeat trips to the hospital. It was this sad realization as I sat next to my baby, hooked up to machines, and recovering from 3 surgeries, in 3 days, that I realized how lucky my family was. What if I didn’t have the resources to stay by Oliver’s side? Or what if we lacked the village at home to care for my other son Jonah while I was at the hospital? Or what if my husband would lose his job if he came to the hospital?
And for those instances, some moms may be forced to make difficult choices—if they don’t have ready access to child care, they may have to choose between the child that is sick and the children who are well. Each and every time we enter the halls of CHLA, (and there have and will be many visits), it occurs to me that so many families, so many mothers do not have that village. They do not have that support.
Sadly, the care given at CHLA is greatly diminished when a caretaker isn’t present for a child since consent can’t be given by a minor and oftentimes treatment can’t be administered until a parent or guardian approves. Plain and simple, being at the bedside matters.
In the darkest of our hours, the brightest moment was the realization that we never had to make that choice. WE ARE LUCKY. And while CHLA helps thousands of children within their walls, I wanted to do all I could to provide support to the families outside the walls.
Last year, within 1 week of launching the CHLA #WeAreLucky campaign, we met our goal of $25,000. To date, we have raised over $48,000! And we want to keep going!
The average donation to CHLA is $24…all of our donations, big or small, matter to CHLA.
We hope this Mother’s Day you’ll join us again in taking the $25 dollar challenge. For $25, you can provide transportation—a taxi ride, a bus or train fare or a gas card that can mean the difference between having access to a friend or relative, someone they trust to watch their children while they rush to CHLA to watch over their little one. With just a $25 donation, you can get a mom exactly what she needs for mother’s day – a moment when she doesn’t have to worry when one of her children is very ill.
Thank you and Happy Mother’s Day!