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!
Hey Friends! Don’t worry, I didn’t forget you: it’s just been quite a busy month and some change. December was a really great month, though, I wanted to share with you everything that had been going on. Nolan got to do a lot of fun things like visit the organic farm with his brothers:
And he even got his school pictures. I mean look at this cute kid:
But one of the big reasons for celebration was Nolan and Grant’s birthday! Our big boys turned 3 and it’s always a great time with our family. We’re so thankful for our double-trouble. We even got to celebrate their birthday at school:
A week later, on Dec 17th we always mark the anniversary of Nolan’s first surgery, the Norwood procedure. We never forget how scary and stressful that time was, and my wife spends each year gathering items for the kids and families in the CVICU so we can bring them to the hospital on the anniversary of Nolan’s Heart Day. This year she collected lots of socks and headbands and also her famous little heart hats:
The twins’ school also had a silent auction where we stumbled upon this incredible Tin Man, which we won and gifted to the pediatric cardiology office as a way of thanking them for all they do:
And, of course, we can’t forget to remember just how far Nolan has come in the 3 years since his Heart Day. As I see him play and hear him sing his ABC’s, it really fortunate to have every moment with this little boy…you’ve come a long way, buddy!
Finally we couldn’t wrap up December without one more big celebration…CHRISTMAS! Christmas is already my favorite holiday and I’ve grown to appreciate it even more now that I have kids. I love watching the joy in their eyes when we set up our tree for the first time or as they see a new present to play with. I remember Nolan’s first Christmas, which was in the hospital, and the generosity of strangers as his room was filled with presents. It’s just such a special time for us and the kids all got some pretty cool stuff this year. For Nolan, his favorite gift was a big boy 12″ bicycle that looks like a motorcycle. To be honest, I was worried his short little legs weren’t going to reach the pedals…after all, he just started riding a little tricycle just last month (yes, it took that long for him to get to that point physically). But on Christmas day we brought him downstairs and he was like “A MOTORCYCLE!” and immediately wanted on. His feet reached the pedals but he didn’t have the strength to do it…so my wife and I sacrificed our lower backs and pushed him round and round the house (it was raining Christmas day here) and he was just SO happy. In fact, he refused to open any other presents because he liked the bike so much:
But then….THEN…something clicked in Mr. Nolan. He started to pedal the bike…completely on his own. And I will tell you something, that kid never acted more happy and free as when he can pedal his own big boy motorcycle around the house. And THAT, my friends, is some real Christmas joy right there! Far and away my favorite memory of Christmas this year.
I hope everyone had a great December and enjoyed Holidays with friends and family!
On this day two years ago, Nolan went in for his first major surgery – the Norwood Procedure. I remember the absolute terror I was in the day before and every hour the day of as we received updates in the surgical waiting room. I remember seeing my little boy hooked up to all those machines and the nurses moving constantly to check him and give him meds. It was surreal. Looking back on it, it’s still pretty surreal. His recovery was long and hard, with lots of ups and downs…and he fought like a champ.
He continues to fight like a champ, as you well know. I mean look at him now:
There’s a whole lotta fight in that boy…he’s my hero!
I’m so glad to be able to share Nolan’s story on this blog…I’m a big believer that sharing our stories not only helps others but helps us continually heal. I encourage you, Heart Parents, to share your story however you can. Some of you will blog, some of you are on Facebook, some of you are part of awareness groups. Some of you are uncomfortable sharing, and that’s ok…maybe get a notebook and just write it down. You don’t have to share it with someone but yourself, and it will feel better to get it down on paper.
What a journey this has been and will continue to be…I can’t wait to continue on this adventure with you, big guy. Happy heart day!!!