This year was Patrick’s 3rd Christmas.. And, once again, we were blessed that he was well enough to spend it at home. Still, with Patrick’s needs, getting ready for Christmas was quite a feat! I was exhausted in the days and weeks before but, looking back, all of it was worth it!
In our family, we start celebrating on Christmas Eve. Daddy got the day off again this year, so we were able to spend the whole day together. First, we went to Christmas Eve breakfast with my family.
It took some effort to keep Patrick safely away from the eggs, but thanks to everyone’s help, we managed. Then, we exchanged presents and Patrick got to play with his cousins, aunts, uncles and grandparents.
Then, we packed up and headed to the zoo. Christmas Eve at the zoo is a tradition Brian and I started before having kids and this year Patrick was strong enough and old enough to take with us.
The zoo on Christmas Eve is a different place. It’s much less crowded. It’s cold. The animals are all given Christmas treats. These factors bring out a different side of the animals. This year, for example, we got to watch a rhino take a mud bath. And Patrick got to visit with a very unshy cavy.
Patrick managed a nap in the car on the way home.. just enough to be up and active the rest of the afternoon. It took some help from daddy to free me up to cook Christmas Eve dinner.
I tried to keep the dinner simple but elegant, after all.. the only part Patrick cared about were the rolls.
After dinner, we open just a few presents. Pajamas, of course, and a book. We decided this year to start a tradition of getting a new Christmas book to read on Christmas Eve.
Then, as Patrick had only had one very short nap, we put tucked him in bed, set out the presents, and went to bed early ourselves.
We’ve been doing our best to make the most of the holiday season. How fun it is to have a 2-year-old this year! Christmas is so magical for a child that age… and it’s the littest things that make the most difference. For example, Patrick’s been glued to the Christmas lights we hung on our house since the night we put them up. Now, given, we have some very cool lights this year – LED color changing icicles… He watches them and smiles whenever he sees them.
Hiding ornaments behind the toybox
He loves the tree, too.. especially the ornaments.. and I’m finding that my investment in Ikea’s unbreakable ornaments has been a blessing because then he can take them off and carry them around without worrying me, and then we put new hooks on and hang them back up. (One disclaimer – they do break if you push a full toybox into them repeatedly.)
Of course, we took him to the Festival of Trees again this year. Last year, this really was a test of his patience. But this year, he loved the trees – especially the tree covered in Elmo dolls, and any tree with cars or trains under it. He wasn’t so happy that we made him stay in his stroller so we couldn’t play with the toys in the displays and did his best to sweet talk someone else into taking him out.
We did our best to see Santa there, too… but we arrived as Santa went on break and by the time he’d made it through the crowd (giving hugs and candy canes along the way) we’d run out of time.
Waiting to (NOT) see Santa
After weeks of snow, we had some unseasonably nice weather last week. Monday night I realized that it was probably the warmest evening we’d get all year. So, I called Brian at work and we decided to seize the opportunity to see some Christmas lights.
I made some taco soup and we picnicked in Daddy’s cubicle. For the record, soup is Patrick’s current favorite food. We stick to clear, mild broths. I’m not sure it’s the best thing for his tummy, but it he loves it and there are worse things for him, and so I let him have it from time to time. He makes a little sipping sound to ask for it and will eat until there isn’t a drop left.
After eating, we bundled up. I made a little tube warmer for Patrick because if the fluid in the IV’s gets cold on the way into his body, Patrick gets chilled really quickly. It takes about 5 minutes to do the 10 feet of velcro, but it seems to work. Then we added coat and hat and gloves. Patrick was more than happy to stay bundled and warm.
Bundled and ready to go
We’ve got a zoo pass, so Patrick is familiar with the zoo… but looked a bit confused when we arrived there after dark.
And then, when we walked in and saw the lights, his eyes got big and he grinned from ear to ear!
Posing with some of the lights (the little grey thing by his back is end of the tube warmer)
They had a really impressive display. Lots of lights everywhere, including full habitat scenes. And, where possible, we were able to walk in and see some real animals… mostly fast asleep. The leopard was sleeping sprawled in plain sight, but woke up to give us all a nasty look for interrupting his rest. And did you know that monkeys sleep all in a pile in the top of a tree?
Afterwards, we stopped in the gift shop to pick and ornament for our tree and let Patrick pick out a stuffed animal, too, that he’ll get on Christmas.
The next night, we finally got to see Santa. HopeKids had a big Christmas party for the kids. So big, in fact, that it took 3 sessions to accomodate everyone and there was still a huge crowd.
Meeting Santa- First Impressions
If I haven’t explained it before, HopeKids is an organization that plans free activities for kids with terminal illnesses. The idea is that if you have something to look forward to, then you have something to hope for and something to live for.
Well, we can’t really explain plans to Patrick. However, he’s beginning to understand one thing… the HopeKids shirt means fun is coming. I went to get him ready to go and pulled out two choices – a Christmas shirt because I knew photos would be taken… or the HopeKids shirt. Patrick caught one glimpse of the shirt and started to beg to wear it. When I tried just putting the Christmas shirt on him, he melted into tears.
This is what happens when mom says “No, stay there a little bit longer”
Finally, I conceded and let him wear both. Which made him happy enough until that night when it was time for PJ’s and he fell apart again because I made him take it off… he carried it with him the rest of the night.
Why so much fuss about a shirt? Because Patrick knows that if we get out our HopeKids shirts… especially if we all wear them… that something really fun is about to happen.
This time, it came in the form of the biggest and most kid centered Christmas party I’ve ever seen. There were photographers, of course… and Christmas presents. (They let the kids pick their own… Patrick picked a fire truck). There was a magician and a juggler and pizza and so very, very many crafts.
Patrick looks pretty unhappy to see Santa in the picture we took. I think that’s cuz we put him on Santa’s lap and then made him stay there while we took pictures. As the night wore on, Santa came back a few times and each time, Patrick was less nervous. By the end, Santa could come get a high 5 or a pound on the fist and even a little grin.
Amazingly, Patrick even enjoyed the show. Usually he’s pretty unhappy when crowds laugh or applaud, but this time, he clapped and pretended to laugh right with everyone else, though I’m not sure that he really could see what we were all laughing at.
There’s still more Christmas fun to be had. We are almost caught up with shopping and half done wrapping presents. We’ve baked our goodies and visited the neighbors. Tomorrow is Patrick’s last appointment for the rest of the month… We had a busy couple of weeks trying to fit everyone in before offices closed for the holidays. But I’m hoping now it will be worth it as we have nothing left to do but play and enjoy the family and the holiday.
Well, it’s rather late, but I had to post a bit about Patrick’s Christmas.
This is the first Christmas season we’ve had to spend at home. Patrick came home last year on December 9th, so he was home for Christmas – but he was too young and we were too overwhelmed to count it as much.
This year, Patrick totally got that something was going on with Christmas! The tree intrigued him, though he didn’t start to undecorate it until after the holiday. He did love everything to do with presents and wrapping paper, though. In fact, the rolls of wrapping paper were motivation for him to finally really learn to roll over. He mastered tearing paper just on time to open a few presents with coaxing, as the video shows.
Christmas Eve we had a late breakfast with my brothers and sisters. Patrick wanted to explore, but his tubes kept getting in the way, so he stayed sitting with grandma, aunts and uncles most of the time.
We spent Christmas morning at home. Patrick was a bit overwhelmed by all the new toys, but happy nonetheless. Then we went and visited with each of our families. He was a bit tired by the end of the day, but did just eat up the time with people he loves.
The Festival of Trees is a big Christmas tradition here in Utah. Groups and individuals decorate and donate trees, wreaths, crafts and more. They’re displayed to the public for a week, and available for sale. All proceeds from sales, admissions, and goodies sold are donated back to Primary Children’s Hospital to help families in need.
We took Patrick to the Festival tonight. He wasn’t so sure about the crowds and was only vaguely interested in the trees. He did really like the chains used to protect the trees and the excuse to ride with Daddy and pull Mommy’s hair. At the end of the evening, we took him to meet Santa, which was a pretty good 1st Santa experience. Patrick loved his beard and sleigh bells.
This year’s Festival was a bit bittersweet for Brian and myself. There were a couple of trees there honoring friends’ children who passed on this year. Those brought tears to our eyes. It meant all the more to know first-hand the tender moments that happen in a children’s hospital. Just one way that Patrick has changed our lives and hearts for the better.
Although this picture may not reveal it, Patrick had a very nice first Christmas. It almost came and went, we’ve been so busy. It was a definite feat to get Christmas letters out (sorry to those of you who are still waiting), goodies made (again, sorry if you haven’t gotten yours yet), the tree up (only took a week of intermittent effort) and presents bought and wrapped.
But the most important elements of Christmas were still there. Brian and I had our traditional Christmas Eve dinner and Patrick played in his bouncy seat nearby and enjoyed his feast of 14 mL’s of formula. We opened our Christmas Eve pajamas (another family tradition), and Patrick loved his so much that he slept his best night yet in his. We decided it was probably the last year we could get away with sneakily opening our other presents on Christmas Eve (this is a remnant of being the kidless ones who travel around to family on Christmas Day)… so we opened all our presents before going to bed. All in all, considering everything that’s happened in the past month, it was still a very nice Christmas. I can’t wait to find he time to dig into the books that Howie bought me.
Patrick’s had presents rolling in all week, so we only wrapped him one for Christmas… a gloworm that he loved so much when we found it in the store that we had to buy it. But he was definitely spoiled by friends and family… and we were able to finally just about finish getting his nursery furniture, appliances (yes, he has his own fridge), and decorations together.
We spent the afternoon and evening… and actually all weekend… visiting with family. Everyone loves holding Patrick so much that I have a hard time keeping track of it so that it’s fair for everyone. It was fun to be able to share him with grandparents, aunts, uncles, and cousins.
We’re hoping for one more miracle this Christmas and will post details about it as soon as we know if our wish comes true.
Patrick Hoopes 