Just a few photos to show you how far we’ve come…
A resident named the blog post today. They were holding rounds this morning and she was talking about how little Fentanyl Catherine is on and said something like, “For most kids, this would be spit in the wind, but because Catherine is so sensitive, it seems to be enough.” All the docs laughed at her “spit in the wind” comment and I told her she’d just named today’s blog post – whenever I got around to writing it.
I got to thinking about it though. Oftentimes, I think we may think we’re just spitting in the wind and, in fact, we find out that whatever we did was the perfect dose at the time. For example, my niece and nephew in Charlotte have been helping to make sure Sarah had a good week away from her sister. For them, I’m quite certain they had to do some things that seem minor and unimportant. For Sarah, though, they probably made it much easier for her to be away from us. They may think they were just spitting in the wind, yet I’m sure it was the perfect thing for Sarah at the time. Thank you Rusty and Georgia for being such cool cousins! And thanks to all the Charlotte family for taking such good care of her. We can’t wait to see her tomorrow!
And some friends of mine came to see me today. They may think it was a small thing to do. But it made dealing with all that’s going on both here at the H and in other parts of my life much easier on me. It was the perfect dose at the time. So, guys, thanks so much for making the trip!
Another example is when Dr. Miller’s assistant came to the ICU after Catherine had her reaction in the first surgery. She didn’t stay long – just enough to give me a hug. Maybe she walked away wondering if it was worth it. I can tell you for a fact – that hug kept me strong and was exactly the thing I needed to keep from falling apart.
And docs may think the Fentanyl dose is super small and spit in the wind. But Catherine seems to be pain free and alert enough to have been breathing for about 4 hours now, so she can get strong enough to breathe on her own tomorrow and hopefully they’ll pull the ventilator tube. She’s started some formula as well today and much of the fluid is coming off her body so she’s starting to look more normal. She’s on a micro dose of Epi to keep her BP up and the hope is that as fluid comes off her body, her BP will rise and the Epi can fall. These small adjustments may look like spit in the wind in the scheme of things. And I suppose they are. As far as I’m concerned, the spit dose is just right for now.
The most profound thing I remember about the word hate occurred in high school. I had a Spanish teacher who I thought hung the moon. Mr. Robinson at CCDS (we called him “Robo”) is absolutely the precise reason I wear a seat belt today. He told me that kids of parents with reverse roles were proven to do better, and I actually remember his reasoning why. He taught me a language I still try to speak today and dearly love. But all of that is another story. He also taught me, “It’s not nice to hate.”
You know how it goes. In high school, kids “hate” a different person or ideal or subject every 14 seconds. And any time he heard an outburst from one of us, “I hate that program,” “I hate vocab tests,” “I hate the coach at CLS (the rival school),” “I hate that boy!” we always – and I mean ALWAYS – heard him say “It’s not nice to hate.”
In time, I grew actually to believe that. And as I reflect over my life, there are honestly very few things or people that I hate. I’ve always thought it was such a dirty, beneath-me emotion. I’ve always sought the good in a situation or a person. I try to give them the benefit of the doubt and try to consider what I would do if I were in their shoes.
Sorry Robo. This time I hate.
I can’t understand how the people who supposedly come together to determine what Catherine needs in the school environment during the IEP process can make the determinations that they do and then close their eyes at night feeling like they did a good job that day. I need to write about this – confess my hate – to try to understand.
- Maybe they think they help all the other kids so one they turn their back on doesn’t really matter.
- Maybe they are super afraid of forces at work that would cause them to lose their jobs.
- Maybe they realize they only have so much money and they want to save it for the kids who show faster progress.
- Maybe they… I can’t really think of any other reasons they could actually say the things they do.
I still contend that if I didn’t have to work, I would take on the special education system in this country for kids with severe disabilities.
I hate the ones in a certain county at a certain school. HATE.
I am acutely sorry to confess that. I am healed today by walking into our home, seeing a PT working with Catherine in her gait trainer, and watching Catherine take repetitive steps at the end of an hour-long session. This stands in stark contrast to the PT who doubted Catherine could “tolerate” more than 45 minutes of PT. This stands in contrast to the PT in the county who wanted to REDUCE HER SERVICE HOURS. Fortunately, to be fair and a balanced journalist, at least she finally agreed to give her the same service hours she had last year. But really, why should I have had to argue that she needs at least the same if she’s not met her goals yet?
Why do I have to argue and prove that Catherine needs a 1:1 aide to access her educational curriculum? Am I the only one who thinks a blind child who can barely move her hands needs help from someone who consistently knows her and can read her subtle communication cues? The principal actually said that they couldn’t promise a dedicated 1:1 aid because, and I quote, “What if the aid was sick for a day? We can’t be sure she can work every single day.” I told her she was absurd.
I remain grateful for all the AMAZING PEOPLE who help Catherine. The staff at Delrey. Our attorney. Our private PT. My friends and family. And my colleagues at the office who shoulder me at times. So, if I focus on these feelings, perhaps the hate will disapate. And, for you, Robo, I’ll repeat: It’s not nice to hate.
Maybe so. But it might be necessary not to be nice this time.
It still surprises me that seven years ago, at this time, I was in actual labor with Catherine. I even gripped the bed rail and said, “I’m ready for the drugs.” I still remember calling my Mom and telling her it was going to be OK. How did I know it would be OK? Looking back, I had NO IDEA what we were getting ready to face. But somehow, deep inside me, I knew it would be OK.
Catherine is 7 years old today!
I think about all she’s taught me and brought to my life, and I’m so extraordinarily grateful at times I feel like I will bust. I had a reporter ask me not long ago what I would change about my life. Of course, I said, I would make it so Catherine didn’t have all the disabilities she has. But that wish is for her. For me, I wouldn’t want to change a thing. I would have missed out on all the amazing things I’ve learned about love, and God, and friends, and hope and courage, and strength. And yes, pain. But the painful parts quickly escape memory as I deliberately choose to focus on the gifts she has brought us. My desire not to change anything would actually be quite selfish. So, God, if you’re listening to this prayer, I pray you’ll heal Catherine completely – in the physical sense of the word. Amen.
So, Catherine, we will open your gifts today. I hope we’ll be able to blow smoke in your face and let you smell your Happy Birthday candles. Maybe we’ll get some ice-cream for you to play with and cake for you to squish in your hands. But despite all we try to give you, the reality is that you give me far more gifts than I could ever wrap up for you.
Happy Birthday Butterfly! Look at you fly.
There is something comforting and relaxing about making myself a peanut butter and jelly sandwich in the early stillness of the morning. I’m pushing through an especially tiresome week at work, and being up at 5 AM isn’t something I actually want to do right now. But to make my life work, it’s needed. I’ve found I actually like the time alone, but today, my body said, “Oh come on! Just sleep.” No can do, body. At least I had my peanut butter and jelly sandwich routine.
I make a peanut butter and jelly sandwich nearly every morning. When Catherine was in the NICU, I needed food I could eat on the go that didn’t require refrigeration – the PBJ! I’ve held to the practice, and folks at work talk about the jelly of the day some days like the weather. I like my PBJ because it tastes pretty good. It is reasonably nutritious – at least better than fast food. And I can easily eat it in a meeting or even walking down the hall at work on days when it’s that crazy (happens a lot, actually). It provides tremendous value in my day.
As I made my sandwich this morning, I realized life is like a peanut butter and jelly sandwich. Some parts are sweet and full of goodness and energy. And some parts are sticky and messy. Personally, if I had to have only one of those, I wouldn’t like my life as much. It’s when I put the bread together, and the sticky, gooey part merges with the sweet, delectable part that I feel like I have a good life. I wouldn’t want only the sweet. Does anyone, really? It’s the sticky part that makes the sweet so refreshing and appreciated.
Ironically, Catherine is deathly allergic to peanut butter. When we learned that, I chose to keep peanut butter in the house and make my sandwich carefully to take to work nearly every morning. Some might consider that irresponsible. If you understood her allergy, you might, actually. But for me, it’s part of the balancing routine that works. Or maybe, unknowingly until today, I kept it in the house so I could keep making the sandwiches and understand in this still moment – the glory of the peanut butter sandwich. Dare I say, the glory of life.
Sarah knows the word “Dadgummit!” Catherine now knows the smell of burned food – three different kinds to be precise. She knows the smell of burnt candy, burnt toast and burnt toast with gruyere cheese blackened on top. This was our weekend.
I went to the grocery store excited to buy the ingredients to try a new butternut squash soup recipe, chicken piccata, and a candy recipe from O Magazine that was called Honeycomb. Doesn’t that sound wonderful? Brian typically makes every meal for us, and I wanted to give him a treat. Turns out the treat had to wait through several rounds of burn and several exclamations of “Dadgummit!” I knew it was ridiculous when I cut myself, screamed – again – and Brian just said, “I’m sorry” from the other room. He was trying really hard not to rush in and save the meal. I hate when he does that, and he knows it. As I was attempting to get it all together, I reflected on some comments I’d heard the day prior.
I had had the amazing opportunity to speak at the Themes in Neurorehabilitation: Cerebral Palsy Across the Lifespan conference on Friday at Kennedy Krieger Institute. I spoke to a room of about 100 attendees who gave me a standing ovation at the end. It was dramatic and surprising for me, frankly. The key message of my talk to doctors, therapists, social workers and parents was “Allow us to hope; help us prioritize.” People cried. They told me afterward that I had given them hope. A mom with a 15-year-old daughter told me she didn’t know why she came from North Carolina except that she needed a “shot in the arm.” She told me she’d realized my talk was the reason she came. That’s pretty cool when you hear that your life and your story affect people so profoundly. But those comments weren’t the ones that surprised me.
What surprised me was the number of people who wanted to know how I did it all. They wanted to know how I balance a life as CEO of an ad agency with being a mom to Catherine. Since my talk had nothing to do with this concept, it really did hit me from out of the blue.
I gave them my best answer at the time, but over the weekend, as I inserted the third batch of gruyere toast into the oven saying a small prayer that it wouldn’t burn again, I realized I have a different answer. The real answer is that I don’t. I don’t do it all well as evidenced by a batch of burned candy a batch of burned toast and a batch of burned toast with cheese. The fact that Sarah knows the word “Dadgummit!” is proof I don’t do it all well. I may be a successful executive. I may be a pretty OK mom. But I am a lousy cook. And that’s OK with me.
This morning I found myself thinking about one of our dogs, Sydney. She’s a Border Collie who lives with her brother on a farm in SC where she has loads of room to run and play. Ever since she was a puppy, she’s loved to run after things and bring them back to you. At first it was bottle caps on the kitchen floor. Later, it became catching frisbees high in the air.
When we first moved to MD, she was living in SC while we made the transition to a new state. We got a call that she’d been in an accident – seemingly hit by a car. By the time we got all the information, we learned she’d broken her back in 5 places and had brain damage and would likely not live. We took her to another vet. Again, we were told bad news, but told of Va Tech, which has the best vet school on the east coast. We loaded Sydney on a backboard, literally, and drove overnight to Va Tech, where they opened up to receive us in the middle of the night. I remember the surgeon telling us she’d have about 50% chance of making it, and she might lose her front leg down the road. I’m not as close to dogs, but Brian said immediately, “We have to try.”
Later, over the coming weeks, I had a dream. I saw Sydney running and jumping and catching frisbees with only three legs. She was happy, but more importantly, I had this deep feeling that through all of this, we were being prepared for something. I had no idea exactly what, but each weekend, we’d drive from MD to Va Tech and help Sydney learn to walk on her three legs. It’s obvious now, but at the time, we just did what we had to do.
When Catherine was born, I recalled that feeling. Somehow, deep in the pit of me, I knew she’d be disabled and I knew we’d been prepared through Sydney. And I knew the phrase, “We have to try,” would become central to our lives. It has.
Separately, I’ve been thinking about some significant happenings at work. Many elements of my past have prepared me exactly for what I face in those happenings. And yet, for some, I feel completely unprepared. And I realized that the ones for which I am not exactly prepared, are preparing me for something else. That’s somehow comforting to me and gives me hope.
The Boy Scout motto also echoed in my mind this morning: Be Prepared! I’ve always interpreted that to mean you should have your knife with you or your first-aid kit or whatever other items you need in case of an emergency. But more often, life’s needs don’t respond to a knife or a first-aid kid or an extra set of layers. Instead, they require experience that gives you a level head, a smart approach, and a conviction that “We have to try.” Being prepared isn’t about the stuff; it’s about the experience. And even though you can go into terrain you’ve never encountered before, life’s lessons from your past have prepared you to be exactly where you are in this moment. If you survey your past and realize you have nothing from your experience to draw upon, then you can bet that you better take good notes because you’re being prepared for something down the road.
Not sure why I thought about all this early this morning. But I did and felt like sharing it here. It gives me hope when I’m nervous about those things I don’t quite think I have the experience to solve. Be prepared.