It's the Most Wonderful Time of the Year
12/20/2020
Not surprisingly, Christmas is hard. I do love Christmas with all of it’s lights and decorations, but I don’t really like the shopping part. Especially when it comes to Holden. Every year it’s the same. I see the Children’s Christmas books hit the shelves and I excitedly start looking through them to see if there’s a good one we don’t have. And then it hits me, a heart drop quickly followed by a tidal wave the the face as I try to hold back tears in the store. I have to stare wide eyed to keep my composure as I put the book down and walk away to prevent the tears from growing big enough to fall. I’m just so tired of looking at the same books every year. I’m tired of having to decide if there is any benefit in searching for a book with colors that contrast simply enough that he may or may not be able to see. Or if they have any touch and feel books that we can place his hand over. And then there are those darn lift a flap books that every child loves but that Holden can’t do. Maybe they’ll have the ones that you can press the buttons to make music or noise, but darn it, it still has to be a good book! (We all know some of those can be a bit boring) I have to walk away without making a decision because I get too overwhelmed trying to decide and I end up wandering over to the toy isle hoping for luck there. But that feeling doesn’t leave. I’m just so tired of walking down the same infant toy isle. We shop in the same section year after year trying to find something that might work and exhausted with the lack of options. I’m tired of struggling with what to tell family members when they ask what they can get him for Christmas. It’s a natural question to ask, I’m not mad at anyone for that, I’m just sad to never have much to say. My mind starts running in overdrive and I feel sick to my stomach that I’m in the same spot I was last year. Life continues to move forward but we aren’t growing with it.
I do not go through these emotions without also realizing how blessed we are to be having another Christmas with him. I really thought 2018 would be our last one. He was doing so horribly and we kept having to add more meds to make him comfortable and had to keep increasing the doses as well. Pretty sure our nurse worked with us on each actual holiday that year, legit looking for pharmacies on Thanksgiving and New Years Day that had the medications we needed.
Trying to recognize the blessing in the heart ache isn’t always easy. It’s hard to truly feel that appreciation without thinking at the same time that this year could be the one that is our last Christmas with him. But I know that that is the truth for each and every one of us. And for some, that truth is much more real than it is for others. My emotions at this time of year play on a random loop; excited, hopeful, disappointed, sad, appreciative, fearful, thankful, etc…. I do my best to put on my big girl pants and not think about the past or the future and to just be in the moment and enjoy it. But inside I’m tired and I’m hurting, I’m just not always going to show it to you.
This is the cold hard truth of what I feel during this time. If you have friends or family members with disabled or terminally ill children, there’s a good chance that they are feeling the same way. Be patient with them. You don’t have to try and understand what they are feeling, just know that they are feeling something. Whether it be the sadness, joy, appreciation or some other feeling, they’re having it and are probably struggling with their understanding of it as they try to enjoy the holiday season.