We had a very unique, but very amazing Christmas day this year.
It all started with a little bit of excitement. Every night sometime between 2 and 4 a.m. I have to get up to refill the formula in Patrick’s feeding bag. So at 3:30 I was up and it seemed to go really smoothly and I stuffed the little stocking that Patrick had hung on the IV pole by his bed. And then I went into the bathroom and the pump started to alarm.
Well, I got there quick enough that it didn’t wake Patrick and I fixed the kinked tubing. And then I noticed a very distinct smell. The smell of Patrick’s ostomy bag leaking. I felt around the pouch and it was definitely starting to come off. That usually would mean waking him to change the bag. But I looked around a room full of presents that Santa had already brought and I knew that if I woke him, we’d be having Christmas right then.
Now, my previous history of early Christmas mornings aside, I also knew that Patrick would not have time for a nap in the rest of the day without missing out on some big fun things. So I took a risky chance. I crawled in bed with him, wrapped him in a towel, secured the bag the best I could, and slept next to him. I knew we’d be starting the day off with a big mess and that we’d have to work hard to keep it from making his skin sore. But it seemed the best choice for a good Christmas day.
I had nightmares about ostomy bags the rest of the night and at 6:30, when Patrick started to stir a little, decided I’d waited long enough and let him wake up. I explained he was wet and needed to go right to the bath. He wasn’t so sure, but I didn’t give him a choice.
We got him cleaned up pretty quickly and changed into his spare Christmas morning pajamas. (We learned long ago that we need two pair of special Christmas PJ’s.) We asked him if he thought Santa would have come and he said no. Somehow, he’d missed all the presents on the way through.
But when he did see them, that’s all he wanted.
We let him start with his little stocking. That was simple stuff. A Dora doll, some hot wheels cars, some silly putty. Then Brian pulled out the big stockings.
I’ll confess. I was pretty worried about Christmas stockings this year. I could not figure out how to go about getting that part of Christmas ready when Patrick needed to be with me and time in stores was limited. Heck, we tried to buy stockings once and had to leave the store without. So when a package from Brian’s work showed up full of gifts, including stockings, I was relieved.
Patrick’s stocking was huge. It took half an hour to go through. Of course, that was the tip of the iceberg for Christmas morning. Between family, friends, DDM, and gifts donated through the hospital and the Ronald McDonald House, we were very well taken care of this Christmas. When I look back at myself a month ago, lying awake in the hospital in tears and unable to sleep not being able to imagine how we could possibly pull together Christmas this year and contrast that with the abundant and generous outpouring that we received I am humbled and grateful.
A phrase from a verse in Malachi kept running through my head. Malachi 3:10:
“prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.”
Indeed – it took most of today to make space to put away Patrick’s many gifts and there is a small collection in the corner of the “too much” that we will probably pass on to other children.
After opening gifts in our room, we let Patrick pick a couple of toys and we headed down to the kitchen to take care of meds and formula. It was fun to see children pop in and out with Christmas presents and smiles on their faces.
Finally, 10:30 rolled around and Santa was due to arrive. Christmas with Santa in the Ronald McDonald House is going to stay forever in my memory. Each family had a pile of presents with our names on them. Most were simple, some were astoundingly generous. Santa went around the room telling the kids about how he’d picked certain things just for them and which gifts were most popular. I’ll never forget the tears in the eyes of one mom whose family had arrived for emergency surgery just a couple of days before who really did think they’d be missing Christmas this year.
And then, after presents, we gathered for Christmas brunch. The Hilton had sent a gourmet meal over with roast beef and turkey and potatoes and stuffing and the yummiest green bean casserole on the planet and about 20 different desserts.
We ate well and then had to reign ourselves in because we knew we had other plans.
In fact, right after brunch, I went up to the room to pack our things to go for the rest of the day. A couple of my very close friends from college married and live two hours away in Iowa. And they invited us out for Christmas dinner. So, we took a drive yesterday. It was fun to see country life in Iowa. And it was amazing to spend some time with friends.
Drue and Rachel have to be two of my favorite people on the planet. They’ve been through a lot in their 13 years of marriage. And now seem so happy and in their element. Both grew up in smaller towns and so it is natural that they’ve settled down in bigger small town in Iowa with 5 acres of land and a historic house they bought for $1 and moved to the lot.
While they finished up making dinner, (smoked leg of lamb and homemade gravy and Idaho mashed potatoes!!) their daughter, Julie, took Patrick out to the chicken coop and he came back with his shoes all muddy.. So then he had to play around in stocking feet all the rest of the evening, which he loved. And they gave him a real metal slinky and showed him how to use it on the stairs, and he loved that, too. And mostly, he was tired because we gave up naps to try to get him to sleep at night and he might not really be ready for that.
BUT he made it and we had a lovely dinner and played Catch Phrase afterwards and reminisced and caught up. And we got to see the stars (something I hate that Patrick misses having to always be in the city so he is close to medical care and clean.) And then we drove back and Patrick managed to stay awake the whole way, which mean he would sleep.
But we ended the day almost as excitingly as it started because one of the bottles of formula opened and spilled in the cooler and so we had to make a new batch of formula and clean up the sticky mess. So we got to bed a bit late and then Patrick woke up at 3 and insisted I come sleep in his bed. So my dreams of an early bedtime and a then sleeping in till 9 were both dashed, but it was still a wonderful Christmas.
And today was mostly quiet with a trip to Costco (then a trip back to the room to replace the feeding button that Patrick accidentally pulled out as he got out of the car. That was traumatic and he talked about it all day.).. Then we took another trip to Costco where we actually bought the totes and batteries we went for. And we spent the day resting and cleaning and playing with new toys. And today we DID make it to bed on time. And maybe tomorrow we’ll even sleep in.
I will never, EVER forget this Christmas. This season brings out the best in us. We are kinder, more generous, more Christlike. And as I read the Christmas story with Patrick this month, I could relate more with the story of Mary and Joseph far from home, staying in a stable of all places as their baby was born. But Heavenly Father knew where they were. And He sent angels to tell ordinary, humble working men – shepherds. And then those shepherds went and it was through those ordinary people that the Lord sent the message that He remembered and He knew what was happening and was was going to happen.
And we, through the ordinary people, have seen the hand of the Lord this Christmas.
Some of you are reading this. I need to say thank you. You may think that what you have done was something small. But this Christmas was anything but small for us. So thank you.
Posing with Santa on Christmas Morning