I love the Holidays! I can not contain my smile when I think about them. Really any excuse to give gifts (no matter how small), cook yummy food and get together with friends and family. I love the feeling of building excitement, the day when I start getting to give the gifts I have worked so hard to get. On Christmas morning I am the first person awake in my house, nudging my sleepy-eyed family. The look, that passes a person’s face, when the gift is just right is the “holy grail,” to me. In that split second you can see them thinking, “How could she remember? She really knows me and listens”. To me, that feeling of the other person’s joy is the ultimate win.
I started to show significant symptoms of Fredrich’s Ataxia (FA), around the same time, as I became a mother. In other words, I have been adapting my childhood visions of how I would implement traditions as a mother for the past seventeen years. When you are a mother with a disability, even how you will get the presents down from the closet you have been hiding them needs to be planned. In addition, you have a progressive degenerative disease every year your abilities are slightly different, and what worked last year no longer works anymore. There are certain parts that make up Christmas. As I get older and my disease progresses, I am learning to simplify aspects of my holiday prep., while at the same time learning creative ways to continue to do what I love. However, I am starting to understand the need for a lot of “elves” in Santa’s Village. They are the steam behind Santa’s engine, and without them, there would be no magic.
Shopping for Christmas starts December 26 and lasts the entire rest of the year. I try to be extremely thoughtful in my gift giving so throughout the year if I see something I think would be just right for someone, I get it. Not being able to drive is a huge factor in buying when you are out. Time to shop without my 4-year-old is rare, never mind finding a large chunk of time without him, then getting someone to give me a ride and shop with me. Trying to carry everything you need to buy on your lap while wheeling yourself is just futile.
I admit I reuse gift bags from year to year (as long as they remain in good shape). I also try to buy plenty of rolls of gift wrap on clearance after Christmas for the next year. Fine motor skills (small precise hand movements) are not one of my strengths and wrapping falls into that category. As my disease, Friedrich’s Ataxia (FA), has progressed I have learned to use more bags and except that my gifts will not end up looking like magazine pictures. In addition, I do require quite a bit of help when it comes to wrapping. I try to plan the time to wrap gifts as I get them in order to keep this process manageable. Asking people to wrap one or two gifts at any given time throughout the year is easier than wrapping tons all at once.
I know some people think sending cards, in general, outdated, nevermind sending Christmas cards to 50 or 60 of the people you hold dearest. The 60-year-old woman inside me still feels that they are a valuable Holiday tradition. The strong women I looked up to, taught me the importance of note writing. Of course, due to a disability, I have to put my own spin on it, but the sentiment remains the same. Starting around Halloween, I sit writing or typing one card a day and having someone else address the envelope, so it can actually be read by the Post Office. Plus taking the picture of my boys, of course there has to be one. They are two beautiful reasons for breathing. Getting my older son to pose in a picture with his brother is rare as a Big Foot sighting. Usually sometime in the fall (Oct. or Nov.) I have a legit reason to get a picture of them together. When I finally receive those prints, I can get help to write on the back, stuff the prewritten cards, and have someone take them to the post office. Yes, just like a lot of traditions I try to uphold despite my disability, sending individual Christmas cards is a lot of work. Why then? I spend 5 to 10 minutes per person or family, once a year, to remind them for whatever reason, they mean a lot to me and I remember all the reasons I value them.
I am currently trying to find/ learn the balance in my life where I put in enough effort to show people I love them and I honestly just love this time of year. I traditionally have “cooked” for the Holiday for close to 10 yrs. I know what you are thinking. How could she possibly do that cooking? The simplest answer is I can’t. My body is not aligned with my mind, ever. My version of cooking is finding recipes, making lists, shopping, planning, and instructing. Orchestrating large meals require a certain amount of planning, of course, but add a mom with a disability (who does not drive) and now it’s an entirely new game of planning. I decide who brings what, the foods I am in charge of making, who will literally be my hands, timing- how long that said item will last, the person’s availability and what tasks in my daily life have to be put off or skipped altogether because I am only given a certain amount of time no matter the season. For this reason, Holiday meals at my house are working a little differently this year. We are getting a lot more creative both eating out and getting premade meals to heat up.
When it comes to celebrating the Holidays, most people think of some kind of baked good. I know I do – pies, cookies, loaves of bread, and so much more. Baking is one of my favorite activities. The measuring, creating, tasting, and smiles that seem to naturally accompany the process. Baking requires similar skills like cooking, so in a lot of ways, my contribution is the same. I do however value homebaked versus store-bought. I have been gluten-free four the past 9 holiday seasons, and homemade everything is hands down much better tasting and better for you. Hands down the best thing for my waistline is no baked goods of either kind. Since that won’t happen anytime soon, I have chosen to significantly cut back on the number and different kinds of baked goods, I (with assistance) make from scratch.
Decorating for any given holiday starts a full month before the holiday. So, Christmas is December 25th, technically I start decorating for it on November 25th. There was a very small window of time when I was old enough to decorate and did not need help. Help, getting the decorations down, hanging up or putting out 3/4 of them, and gathering them to put away after it is all over. However, when the string lights are all lit, the knick-knacks I have inherited been put out, and my house is basically a miny Santa’s workshop, the childlike happiness and excitement I feel is unlike any other feeling. I do realize how lucky I am and how much they do for me, with that in mind, I have also tried to pair down my decorations. There are some items that I am unable to part with and to keep them safe from my 4-yr-old they must be placed out of his reach. Of course, this also means it’s out of my reach so therefore help is required.
- Holiday Activities
Activities in my book include but are not exclusive to, crafts, small gifts, gingerbread houses, and Christmas outing such as watching “The Polar Express” in a local movie theatre. The first part my family has to consider is wheelchair accessibility. After that, we have to consider who we will have as our physical supports. Obviously, there are some activities that I choose not to attend for one of these reasons, but still, send my son. There are also some adaptions of these activities that can be made in order to require less help, such as gingerbread house kits and small gift cards instead of hand made gifts.
- Inevitable Speed Bumps
This year I have been sick since December 1st. I have been told pneumonia, bronchitis, asthma, ear infection, inner ear infection whatever it is called or is. I have gone through at least 20 boxes of tissues, all the over-the-counter meds I could think to use, 6 prescriptions and 3 doctor visits. I still have a cough, and can not hear at all out of my left ear. I understand everyone gets sick, but an illness of this length and magnitude affects me even more than the “average” person. My body which is fighting daily against fatigue and instability is pushed to its breaking point. I have been fighting this endless war for almost 20 years, and at times like this it feels like my output and contribution are so small in comparison to my need. People all around me are constantly having to pick up the ball I drop. This is why I try to put as things in order as soon as I possibly can because there is almost always a need for more elves.
So as expected I also love, love, Christmas parties. I love to have them, go to them, gift swaps, basically everything about them. This year is the first year in a total of 6 I have been married and did not hold a Tree Trimming Party. For those of you who have never heard the term. Trimming and decorating the tree are one and the same. Yes as a person with a disability does need help reaching and other aspects of tree decorating. My love of it so much more, believe it or not, I get to have a lot of people I love being a part of something I love almost as much. This year I got the last tabletop tree at Wegmans, and chose not to have my beloved party at all. I did decide to do it this way, in an attempt to minimize the need for additional help in this area.
- Inka and Tinka
Inka and Tinka are the Clark family’s version of “Elf on a Shelf.” They are two 99 cent retro-looking Target elf tree ornaments. When I saw them they reminded me of some Christmas elves my Mom had from her childhood. When I bought these two elves when I was pregnant with my second son, they were merely stocking stuffers. Sometimes from then to now, these two elves got lovingly named by one of our PCAs (Maureen) and started to fly nightly from spot to spot. So there are, of course, some spots that they fly to that this wheelchair user can not reach. Depending on who is responsible when, at least 8 different people may have moved them, making their morning position an actual surprise for most of us.
Finding storage and finding places for storage that is truly accessible from a wheelchair within a home is slim to none. If there is such space within my home I must then prioritize it for items I use daily such as clothes, deodorant, and food. These are things I use on a daily basis and more. With that in mind seasonal/ holiday decorations get put in places of the house that are tucked away and out of reach which then requires someone to help to dig them out at the appropriate time.
Historically budgeting is one of the largest driving forces behind everything I do within a holiday season. For the first half of my older son’s life, we were living on my disability. To say money was tight is a joke. There really was not any money to speak of, but I always tried to make the holidays special. I learn small hacks like buying what you can on clearance and saving it for the following year. Watch clearance racks throughout the year and buy things on sale. Making cookies became an inexpensive gift. Now I am married and even though we doing ok we still try to watch our spending and some of the habits I have developed remain useful.
As a disabled mother, I am constantly reminded that my life is a balancing act. I want my children to feel the same magic that I feel this time of year. At the same time, I need to find a place where it feels fun and not overwhelming. The place where my village (support system) is able to help me enjoy the parts of the holidays I truly love and want to share with my sons. 17 Christmas’s as a mother and I am finally getting it. Happy Holidays! Thank You Elves everywhere.