Hey friends, I hope all is well in your world and that you’ve enjoyed your holiday season! It’s really hard to believe that 2017 is almost over: the final bit of this year was really eventful so I wanted to give a bit of an update on what’s going on in our world.
Party Time, It’s Excellent
I’ve always enjoyed the month of December because it’s always had my favorite holiday in Christmas. Since the twins were born, though, it’s given us even more opportunity to celebrate! This year the twins turned 5 years old and I just love celebrating their birthday, especially now that they’re starting to get old enough to be more and more excited about it. Not to mention that every birthday with Nolan is a really big one! We went to each of their schools to celebrate their birthdays with their classmates. Nolan didn’t want cupcakes for his class, however…in true Nolan fashion he wanted to share some Scrabble Cheese-Its with his class. Remember, this kid is obsessed with the ABCs, so of course! It was so cute to see him in school interacting with his classmates. We got to feed him and see excited his little friends were to get their crackers. It was really cute and it made Nolan happy. We even asked him if he wanted us to take him home early and he said no thanks, he wanted to stay in school. I’m so proud of him…he’s going to school from about 9:30am to 2pm and he’s totally rockin’ it! Grant, on the other hand, had his birthday celebration at school complete with cupcakes and it was so much fun to see him and his classmates with frosting-smeared faces. Too cute! We followed it up with lots of other celebrations with family and friends and, of course, at home. On their birthday I always want to just scoop them up and squeeze them…because I’ll never forget how absolutely insane their first day on this planet was. And I’ll never forget how much they’ve both been through, and I’m eternally thankful.
Happy Heart Day, Nolan!
A very important day of remembrance for me is December 17th, which is when Nolan had his first heart surgery – the Norwood Procedure…now 5 years ago. I always spend time on this day remembering how I felt: on one hand it’s kinda like punishment because I remember being so scared, to the point of paralysis…but to me it’s important to connect with that feeling from time to time. I don’t wallow in it, but I do talk about it with people. Most importantly I look upon that day as the start of Nolan’s heart journey, and I remember how much he’s been through and I look – with joy – on the strong little guy he is today. And when you look at it that way, you can’t help but to be so happy to celebrate his heart day:
Christmastime is Here!!!
Man, Christmas with 3 little boys is totally bonkers, and the craziness began like a week before the actual holiday, as we celebrated with other family and friends. So the kids were definitely ramped up for the actual day! It was so fun watching them rush down the stairs and to be so excited by the gifts that Santa (and mom and dad) got for them. I love the smiles and the laughs and the hugs. And hey, we even got a decent pic with Santa:
And Lots of Other Good Stuff, Too
Lots of other good stuff happened in December too. We had another feeding appointment at UNC and it went really well: Nolan has really cut back on the vomiting (to nearly nothing, knock on wood) and is eating purees more regularly and eating things like Cheese-Its, Rice Krispies, and some mashed potatoes. Definitely a huge move in the right direction!
Nolan also had a really great cardiology check-up: his doctor said his heart function looks really good and we won’t be back for another 6 months or so!
After Christmas we took the kids to a trampoline park to play with some friends. As you know, Nolan looooooves trampolines and jumping, so he was very excited about this. Shockingly, though, he spent the most of his time “going on an adventure,” as he calls it. This meant he climbed up, through, and around this huge playground structure inside the trampoline park. I mean look at this kid:
I was standing like 2 levels below him when I took this picture. He proceeded to climb way up and go down the long, twisty slide all by himself. Why is this significant? Well after Nolan’s Fontan Procedure, I noticed that he was developing some fears that he didn’t have before. When we’d go to any playground, he no longer liked to climb up like he used to and he definitely didn’t like to go down slides. At his first parent-teacher conference at school, his teacher mentioned how much Nolan loved getting on the playground and going down the slide…and I was like “Hold up…are we talking about the same Nolan?” Apparently the Physical Therapist at school has been working with him on this, plus seeing his friends play has spurred Nolan to do the same. And you should see this kid go! Off he went on his “Adventure” and he even told me I didn’t have to go with him. Definitely a proud daddy moment for me…it really symbolized how much progress he’s made. Keep climbing, big guy!
So to all my friends reading this, I hope this year was a really good one for you. And if it wasn’t, I hope 2018 is a fantastic one for all of us. May your new year be full of love, kindness, gratitude, victories (however big or small), empathy, and compassion. Don’t let the little moments pass you by without being thankful, don’t forget to take care of yourself, don’t forget that the work of your hands is sacred, and don’t forget to give lots of big hugs.
And finally, in case you need a random smile, and the days get a little rocky, you can always do what Nolan does – dress like an owl and dance to Laurie Berkner:
HAPPY NEW YEAR, EVERYONE!
If you ever meet Nolan and spend more than 15 minutes with him, you’ll know that there are things that he likes, and then there are things he is obsessed with. Paw Patrol? Oh he likes Paw Patrol…sometimes a little, sometimes a lot. ABCs? OH. MY. GOD. It’s his favorite thing on the entire planet earth. He’ll watch alphabet videos on YouTube for hours, his favorite toys are alphabet-related, etc. He’s crazy about it. Then came numbers. Of course, we can’t forget his best friend Monkey. Now there’s something else to add to it: jumping. This kid loves to jump and it seems like lately that’s what he likes to do: he jumps on each letter of his alphabet mat (because of course), he jumps whenever I’m holding his hand and we’re walking somewhere, and he even jumps when he’s happy about something. Example: I’ll ask Nolan if he wants to watch Paw Patrol – he’ll squat down low and spring up into a jump saying “YES!” He especially loves jumping on trampolines:
Look at that kid catching some air!
I love it, though…he’s super cute when he jumps. We recently found someone nearby who was giving away a 7-foot trampoline so I picked it up and put it in the back yard and it was like Christmas for Nolan. He can jump on it all day (of course he goes through his alphabet forwards and backwards and counts to 100 while jumping)…and he won’t get out of it without a fight.
Now Nolan isn’t getting some kind of crazy vertical on his jumps, but watching him jump even a little bit off the ground really struck me as symbolic. Maybe the space between his feet and the ground is only 6 inches or so, but that space speaks to years of hard work at physical and occupational therapy.
I remember the early days of Nolan struggling to sit up on his own, then trying to crawl. The crawling was so hard: he’d cry and scream and it was so tough to see him that way, especially with all he’d been through. But eventually he crawled, then he stood, then he walked. Since then Nolan has progressed to going up and down stairs and, yes, jumping. Lots and lots of jumping.
And when he jumps, the space between his feet and the ground brings a smile to my face. I like the space between: it’s a good reminder of a little boy who faced major odds and kicked some butt. I think sometimes we (myself included) as heart parents get caught up in the what might happen part of our journey. Will there be a transplant down the road? More surgeries? Will the liver be ok? And we worry ourselves sick. Sometimes we need to hang out for awhile in the space between. Or at least admire the space between and what it represents.
For you, the space between might be one less medication, it might be one less surgery, it might be a clean echo or cath, it might be your baby finally talking or walking…it might be a little boy jumping with all the joy in his heart. Whatever it is, please take time to appreciate the space between. I’m not saying don’t worry about anything…we’re always going to worry…but instead look for the little symbols of victory in your heart warrior’s life. They can be so easy to miss, but so powerful once we see them for what they are. For your own sake and your own mental health, give yourself permission to see and celebrate the little wins. And by all means, celebrate your warrior for his or her victory over that thing that’s trying to hold them back: tell them you’re proud and let them feel free to smile, or even…jump.
Lately the weather here in North Carolina has been – for lack of a better word – possessed. One weekend it’s snowing and the van is encased in ice, and then a few days later it’s 70 degrees. Go figure. I’m not complaining, though, I appreciate some really mild weather this time of year; after all, I grew up in Connecticut, where the snow can get waist-deep, so this is much appreciated. Anyways, we were recently taking advantage of a fairly nice evening outside with our fire pit. It was a little cool outside, so we had some light jackets on and made some hot cocoa and just hung out before putting the kids to bed. Grant loves the fire pit, referring to it as the “fire camp,” so he was excited to hear we were starting the fire. Of course, our kids’ attention span lasted a whole 42.7 seconds and they were off playing with toys in the back yard, which is just fine. At one point, Nolan was playing with a metal Tonka dump truck and was piling all sorts of stuff into the back: a football, a small skateboard, a bowling pin, a bucket. And it was cute seeing him lost in the world of play. My wife commented how “it’s nice to see him just doing little boy stuff.” And it’s true: you’ve been there too – where you look at your Heart Kid doing even the most “normal” things and you just appreciate it, because they’ve been through so very much.
As a dad, I live for all the moments and all the memories with my kids. Walking, first words, first days of school, piling on top of their poor old man:
School performances, Donuts with Dads, parent teacher conferences, etc. I live for it and I will do everything possible not to miss those moments. I’m so thankful for that chance.
Lately I’ve been really thinking about those types of moments and how fortunate I am to experience them. My job is really flexible in letting me attend school stuff or appointments and it means a lot to me and the kids, too. Even time at the park is a joy:
But as a Heart Dad I really want to acknowledge that there’s a tremendous amount of sacrifice that goes into the opportunity to make those moments happen.
Every single day – rain or shine, snow or sleet – there are a group of people who leave their homes while it’s still dark, or leave home while most people are just getting home from work, and they park their cars, ride an elevator, badge in on a time clock, wash their hands, and get to work. Some of them walk into the room where I’ve sat, sleepless and helpless with my son on a vent, and say, “Hi, I’ll be your son’s nurse today.” Some of them load up a cart of cleaning supplies and work hard to keep things clean and avoid the spread of germs. Some lug a ladder down the hall to replace a burned-out light bulb so a nurse can see better when he or she is charting. Some fire up the grill in the cafeteria to sling burgers and chicken sandwiches for hungry families and staff. Some scrub in for a grueling surgery in an effort to safe a kid’s life. Some land a helicopter on the roof, carrying a life that needs desperate help from the best team available. These are the hospital workers…and they sacrifice so much for us.
I really want to use this post to acknowledge all the hospital workers – clinicians and non-clinicians – who give so much so that we can enjoy so much. You have lives, you have families, and you have memories you want to make, too. I just want you all to know that it’s not lost on me that sometimes you sacrifice a school performance, a bedtime story, a goodnight kiss, a good push on the swings…all for my son, and to give us the chance to enjoy him. I know you put up with a lot: the demands, the long hours, the demands, the hours without peeing, the hours without eating, the sad stories. I see you, and I thank you. It’s your job, but I know your job comes with a steep price: you could do anything else in this world but you choose what you do, and I could never enjoy the memories I have without you.
So hospital workers – wherever you are, whatever you do – just know that you are loved, you are appreciated, and your sacrifices truly do pave the way for magical moments in a Heart Family’s life. Your work is not in vain, your work is priceless.
This is the second entry in a series about thankfulness.
What would I do without my family? We’re like a basketball team…but with only one tall player. And I love them all. Today’s post is a big thank-you to the rest of my family:
Oh this kid. My oldest and most hilarious. I can’t believe how big he’s getting! He’s figuring out this whole big brother thing, but he’s showing glimpses of absolutely adoring his brothers, even though he gets annoyed when they steal his stuff. Such will be our life for MANY years to come. I really enjoy watching him grow and all the things he’s learning. And I just believe how hilarious he is, whether it’s his insanely imaginative imagination or him replacing “It’s Time to Dance” from Yo Gabba Gabba with “It’s Time to Fart.” Hudson is also a wealth of safety advice like “Don’t stand next to a volcano.” He’s so loving and smart and he taught me how to be a dad, and I just love him so much.
Nolan’s twin brother and technically the youngest of the 3 boys (by 2 minutes!). He is a funny little ball of craziness, who loves to dance and wear other people’s shoes around the house. Since he’s been in preschool this year we’ve discovered that he really likes art…loves to paint and color…so maybe we have a little artist in the house? I love to hear his “Hi Dada” when I get home from work and I laugh when he wants to roughhouse in the living room. His laugh is just the best. The one thing I absolutely love about Grant is that while a lot of the time he wants to steal Nolan’s toys or be a brute, he will always want to share with his twin brother. If we give grant a cookie, for example, he will immediately go take it to Nolan then come back for one for himself. If only the world were so giving.
This is the real MVP of our family and the love of my life. She works hard wrangling three kids during the day, doing school pick up and drop-off, taking Nolan to appointments and therapies, and then works nights 4 nights a week. She is the one who gets Nolan through all his therapies and encourages to do better, she’s the one who fights for Nolan to eat by mouth, she’s the one who keeps our household running smoothly. Without her drive, Nolan would not have accomplished have the things he’s done so far in his life. Plus she puts up with a household of crazy males! I can’t imagine living this life without my amazing teammate, and I love every moment with her. Thanks for being awesome, babe!
Man, I love my family…my little traveling circus…my band of crazies…I just love them all. I love that they make me laugh and smile and keep me sane. I’m so thankful for every one of them and for the joy they bring me every day!
The start to Nolan’s Progressive Care stay was pretty frustrating for us. The day after he went to that floor, I was preoccupied with the thought that he was completely alone when Bekah or I weren’t there with him. Here he was, almost 2 months old: he couldn’t press a call button when he was in pain…all he could do was cry, and I couldn’t help but think there was no one around to hear him. God, that made me such a wreck. It was all I could think about at work that day, I was pretty much useless.
I continued being the Incredible Sulk for much of the day until I was able to hop in the car and haul down the hospital. I was like a man possessed: I just wanted to get there and spend every second holding him and loving on him, just to make up for every moment he was alone. When I got to the hospital, I checked in with his nurse and asked how his day went. She said, “Oh Mr. Nolan had a very good day: we started this program called the Cuddle Crew today and volunteers held him for hours.” I wanted to fall over right there. The stress, the worry, it all left me like air out of a balloon. Then suddenly I was happy and hopeful again. I thanked the nurse and went right in to spend time with my little man.
I can’t express how much thanks we owe to the volunteers on the Cuddle Crew. They gave their free time to invest in Nolan…and other kids too. Sadly there are some kids on the Progressive Care floor who have zero parents around…ever. They’re there alone because there is no one there for them. And these volunteers make a REAL difference. I had the peace of mind of knowing someone was there to love on my Nolan…and it meant the world to me. Thank you, Cuddle Crew, from the bottom of my heart!
And I can’t say enough wonderful things about Levine Children’s Hospital Volunteers as a whole. I remember one Saturday getting a knock on Nolan’s door: it was a teenage volunteer, who brought a cart of goodies and asked if I needed anything. She had toothpaste, deodorant, books, candy, snacks, you name it. All the things to make our stay comfortable. When you spend a ton of time in the hospital with a sick child, you often forget to take care of yourself too. That’s where the volunteers come in. They would come and bring toys for Nolan and were always asking if we needed anything. They were awesome. Thank you all!