Christmas is fast approaching and I have to be honest, I'm having trouble getting into the spirit this year. I don't know if it's because I'm not going to work anymore which means I'm not driving home in the evenings seeing all of the lights on the houses or if it's just because Thanksgiving was late and it doesn't seem like we've had a lot of time to really plan things out? I'm not really sure.
In some way I was hoping that maybe this would be the year that Carson would understand something about the holiday. Santa and the reindeer, Christmas trees, ANYTHING. Even if it was just that you get presents. If he knows, he certainly doesn't act like it. I bought him a few apps for the iPad about Christmas and Christmas words (gingerbread house, gift, tree etc.) and he plays them frequently. One thing that I did notice was he has caught on to how secretive I have been about presents. In years past I have just wrapped presents in front of him knowing that he couldn't rat me out. This year I haven't let him see anything that I have wrapped for anyone and he has tried to sneak peeks as he's nonchalantly strolling by me. The other day I had left a gift for him in the back of my car and I needed to get it out so that his stroller would fit. I thought that he was in his room when I came into the house but no he was standing right in front of me. I tucked it behind my back and took off running to my bed room to try to hide it from him but he was hot on my trail. I chucked the box into my closet and tried to act like nothing was going on but I have caught him several times trying to get into my closet. I know he is looking for it.
Last year I made a point to have a countdown to Christmas wrapping a small gift for each day starting December 1 and having something planned for one day on each of the weekends for the family to do together. I have done the same for this year, Baylee usually opens the gift when she is getting ready for school, but it doesn't feel the same. For one, the gift is mostly just for Baylee and not for both of them and it's completely unintentional. Carson's dietary restrictions make it very hard for him to have 'treats' so if I get a candy bars for them, he won't eat one. I know that the immediate go-to in your mind is, "then why get candy?" I get that. I asked myself the same question. Here's the answer. It doesn't matter what is in the packages. He has no interest. Period. So why deny Baylee? I even got little coloring packs and crafty things to make ornaments and again he has absolutely no interest.
For the weekend excursions the first one I had planned was to go to a local attraction here that Carson LOVES. EnterTRAINment Junction. It is a railroad museum, model train display and a fun house. They even turn part of it into the North Pole and you can meet Mrs. Claus and get a cookie from her and then get a picture with Santa. I was really excited to go and then we got hit with a snow and ice storm. So much for those plans. Last weekend was scheduled for a gingerbread house-making session at our library. They do it every year and supply all of the things needed for over 200 families. When the day came, Mike decided that it just wasn't for him or Carson so he stayed home and sent me and Baylee alone. So much for our 'family' outings. This coming weekend is the ballet. Baylee and I are going to see The Nutcracker. Again, without the boys.
I'm on a mission now to try to figure out how to include Carson in something for the holidays. I have been looking on Pinterest for ideas of just small things that I might be able to get him to play with or make and so far it's a bust. So now I'm thinking that maybe I will just pop some popcorn and get a couple holiday movies off Netflix or at the library and see if he will hang out with us for a bit. There are also some drive-thru light displays so I'm thinking we may go do that one of these nights.
I know that it seems like I'm complaining a lot, I just wish things could be different for him... even for just one night. But I know that it could be a lot worse too. Our local paper runs stories everyday about families who have wish lists for their children with disabilities. Something as simple as an extra fridge to keep medications cold or a back-up generator so they don't have to scramble to a motel if the power goes out so the child's ventilator won't stop. Truly devastating things. Carson is impaired mentally and physically but as far as they know (not knowing much about his diagnosis since they don't have anyone diagnosed over the age of 19) there is nothing directly related to his microdeletion that will end his life early. The only thing that I can think of would be his hypotonia affecting his heart but I think that would only be if it goes undiagnosed but seeing as we see a cardiologist regularly I think he will be okay.
So tonight I'm going to bed with hopes that maybe this weekend we will be able to find something for all of us to do as a family and maybe just maybe Christmas morning Carson will surprise us and run to the tree to see what Santa has left him. If he doesn't then there's always hope for next year.
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