This week started off with Wyatt’s first day of kindergarten, homeschool style! We had laughs and learning, and my hope is to foster a school year full of wonder and curiosity.
Our week went awry midweek though – early Wednesday morning Wyatt started throwing up at about 3 a.m. I don’t talk much here about some of the medical things Wyatt deals with, but one thing he has is a shunt that regulates the fluid in his brain. He has had it since he was one month old, and has never had a revision, which apparently is pretty unusual for a child to go this long without needing one. Well, one sign that the shunt is malfunctioning is repeated vomiting with no discernible other reason. After he vomited three times, we gathered him up and packed a bag and headed to the ER, crossing our fingers it was nothing. It ended up being a shunt malfunction, which was discovered very quickly by the amazing staff at the hospital. Within hours, Wyatt was in surgery, then in recovery. Within 24 hours Wyatt was home recovering. It has been a whirlwind of emotion and this momma is tired. We both slept in today, and he is now watching Mickey Mouse and eating Fruit Loops while I sip coffee and type this up. Billy is taking today off and is on a little walk and we plan on taking it easy today, but the hospital expects Wyatt to be able to resume his normal life activities probably by Sunday, maybe just with more breaks.
The resilience of my child is amazing. His tenacity and strength of will, which can be a test on normal days, is his power during times like this. He is a little groggier than usual, but otherwise happy to watching his cartoons and singing along.
Last Friday, Wyatt was given an opportunity to “fly to the North Pole.” It was definitely an amazing experience, one that we will never forget.
All week I had been telling him about how we were going to fly to the north pole and see Santa, so he was pretty excited when we arrived. And just like any other flight, we had to check in for our boarding pass. I loved that even the monitors said that we were checking in for the North Pole! And Wyatt looks cute and tiny sitting there waiting for his ticket. Lol.
There was an orchestra playing, decorations everywhere, and Wyatt was grinning from ear to ear as we moved to the next phase of our day. We had to check in with the event, where they gave him a sweatshirt, and a name tag, which reminded me of Paddington Bear, that hung around his neck. There was more music being played here, with people in costumes greeting the kids and entertaining everyone until we moved to the security line. We did have to go through security, as we were getting on a real plane and would be in the terminal. This was the only part that gave me some anxiety – because Wyatt was in a wheelchair they moved him to the other side of the gate – without me! I was very nervous about my kiddo being left there without me, and I asked the TSA agent to please make sure he didn’t wheel away. Wyatt didn’t take off but he did try, that little monkey!
Once we were through and I could breathe again, we were zoomed off by an elf to the terminal to wait for our plane. This area had clowns handing out balloons and playing games, and the flight crew was on hand to greet all the children. This, I think, was Wyatt’s favorite. He was in awe of the pilot and co-pilot. They gave him some little wings, which was pretty cool too. Finally, our plane arrived taxied up and we were ready to board our flight!
It is all very choreographed and efficient, so things are kept moving, partly because small children are not usually super patient. So I didn’t get as many photos as I wanted, but I did capture a few moments. Wyatt was also obsessed with the seat belt. I ended up keeping him on my lap, seat belted in. And then, we “took off”! The plane in reality taxied around for about an hour, and even gathered some serious speed to mimic take off. We had to leave the window shades down though, to maintain the illusion for the kids- which was a battle between me and my son, who kept wanting to open it. Lol. On our flight we were served lunch, and the elves sang carols. It was a great time, and Wyatt loved the music, and the actual plane itself. Once we landed, we were whisked away through the North Pole’s airport to “Santa’s castle”, or the hotel. Everything was decked out in Christmas decorations, cookies and candy and most importantly, coffee, lined the tables for us to snack on. Here they also had a show for the kids, of characters dressed up like superheroes who put on a mock battle, and Anna and Elsa were there singing all their songs. The kids were called up one by one to see the big man himself, and then – we went home! But not before we were given, literally, a sack of presents for the kiddo.
The generosity of the donors and volunteers that put this day on was immeasurable. The time, the planning, the gifts, the people from the hotel to the Silverliners who organized it, to Delta Airlines who flew the plane – it was an absolutely perfect, amazing, one of a kind day.
Here is a link to a local news story about it! See if you can spot us!
There is something intrinsically so appealing about the Danish/Nordic lifestyle, the feeling of coziness that they call hygge. As an American, I feel that I can disappear into my endless to-do list, which gets longer everyday. My son has cerebral palsy, and we are running to therapy four days a week. We have at least one specialist doctors appointment a month. And that is of course in addition to all of the rest of our everyday things we have to do, that everyone does. Pay bills, grocery shop, clean, work if we work, go to school, all these things. Where do we find time to indulge our own selves, to take care of our own souls? It’s a rabbit hole for sure. The answer is that we need to find time, make time, just let stuff go a little bit, and enjoy the moments before they are gone. This is something I have been reminding myself for a week or two now, since reading a few books on the subject, and looking at Pinterest and YouTube.
It’s the food that is drawing me in right now. I used to love spending time in the kitchen, making soup and baking while dancing around drinking a glass of red wine. Now, I feel like food has a different focus. W. is not a great eater. We have to practically stand on our heads to get him to eat, and we always need to add more fat to his food, just to increase calories. His CP also causes him to lose weight easier, as someone with CP actually uses 30% more energy than someone who doesn’t. Last week though, I began to relax a little about food. I would get so stressed about it ~ and I honestly think my stress and anxiety about W. eating was affecting him. The past two weeks he has been eating like a champ. Perhaps it is the food, as I am spending more time making food – and not with medical instructions on my mind, but love. Care. The instinct to feed those that I love good food is very strong in me, and I think by burying that part of myself somewhat, it was reflected in the food I was making, and thereby perhaps extending itself to my boy. I could be crazy, but I do believe that it could happen. We have been enjoying pancakes, muffins, and I plan to make homemade pop tarts tomorrow. I have made lemony salmon, quinoa with avocado and a squeeze of lemon, meatballs for the boy, and he has eaten them all with relish. I’ve used fun plates, my china, and some dishes made by hand by my mother-in-law on her potters wheel, making the meal even more special. (W. does not eat off the fine china however, lol)
And if I end the night with a glass of wine and a Reese’s peanut butter egg, then so be it. By letting myself enjoy the process, I think that W. is enjoying the product. I even had some fun with an ordinary peanut butter and jelly the other day, cutting it into a whale shape when serving it with his all time favorite Goldfish crackers.
The weather lately has also been amazing, and we have been taking advantage of it as much as we can, and in a hygge sort of way. Soaking up nature, the sun, the wind. Walking through the woods, even just sitting and enjoying a few minutes on the porch.
The night though has always captivated my little 2 year old. He is fascinated by it. On some of these nicer nights, we have gone and stood outside, looking up at the dark sky, lit here only by a few stars but still, beautiful, twinkly. He laughs, a real laugh, which rings through the quiet as he throws his arms skyward. A perfect moment, for this mom.