Ten Holiday How-To’s for The Rare Mama
The holidays are a cherished time of year. Every year as they approach, I start to get excited about the special little traditions with my kids and my family. But then, every year, I find myself buried under a mountain of things to do, pressed for time, and running around like crazy, which leaves very little time to enjoy all the good stuff. The truth is that this magical time of year also comes with overstimulation, exorbitant spending, heightened expectations, and disrupted schedules. For families like ours with rare diseases, these things don’t mix well.
After years of spending holidays feeling the effects of these, I finally decided there has to be a better way. For mamas like us caring for children with rare diseases, our time is already pulled in so many directions. When the month of December comes Falala-ing in all its merriment, it all begins! The crafting, caroling, cooking, baking, shopping, decorating, tree lighting, family photo-ing, holiday dressing, wrapping, gifting, planning, RSVPing, partying and elf-on-the-shelfing begins. Though it all sounds like a lot of fun, it’s just too many “ings” and “things” all at once. Mama, I’m tired just from writing that list!
If there are too many activities and to-dos crammed into every nook and cranny of the month, it becomes exhausting instead of celebratory. I don’t know about you but I want to preserve my energy for enjoying it. I want to be present for it all. I want to make those precious memories with my kids and hubby. I don’t want the busyness of it all to steal my joy for the season.
With that in mind, I’ve put together these “Ten Holiday How-Tos for the Rare Mama.” It’s my best tips on how to handle the holiday hoopla. And because I’m a rare mama myself, I’m going to keep this short and sweet because, well because it’s December and we already have too many things to-do!
1. Decide on “Your” Holiday Fun
What is it that you and your family love doing during this time of year? What do you look forward to the most? Think about the things that make your heart sing. Reflect on the holiday traditions that you hold dear. Or what are the traditions you want to start with your own family? Maybe these are the things that last holiday you said, “You know what I’d really like to do during the holidays…” Take the time upfront before the holidays begin, to think about how you want to spend it. Make these a priority for your holiday. Make sure your month revolves around being able to do and enjoy these special family traditions. Put these on your calendar first before it gets filled up with everything else and before a bunch of invitations and/or obligations get thrown your way. Once you have your priority activities established, you’ll know whether you can say yes or no to other things. You’re going to build the rest of your month around your magic moments.
2. Make a Plan
Once you’ve got the plans and activities that are important to you set, you can start getting everything else figured out. Who is hosting and cooking the holiday meal? What is the meal going to be? Who are you buying gifts for this year? What holiday family events will you attend? Are there any special holiday school or work events? Knowing now instead of scrambling at the last minute is going to help you feel settled and prepared. Next, start a list of everything you need to get done. Get it out of your head and all on paper or a digital format. Then, pull out your calendar and start putting each one of these events and tasks onto the calendar. You are now building in time to actually do these things. Once you have it all on a calendar you are going to see in black and white if what you have planned is doable. If it’s not, then you need to adjust and you may even need to take some things off your plate. This is also going to help you as invites pop-up through the month, you’ll be able to determine whether you can add them into your schedule or if it’s just too much already. A plan will help you plot your course through the month.
3. Start Early
This is a no-brainer right? Part of the holiday stress comes from too many things happening all at once. You still have all of the normal life things which are busy enough for rare-disease parents, then you have 180 other things on your plate at the same time. How is it even humanly possible to do it all? It’s not really, so you need to start early. The stress comes in when you feel like you are going to run out of time and be unable to complete your list and “ruin the holidays.” You need to figure out what you can get done ahead of time before all the parties and events start happening. Order your holiday cards? Buy and wrap the gifts? What is it that you can knock out before your holiday is in full swing? Getting these done way ahead of time is going to allow you to enjoy the good stuff in the moment when it’s happening.
4. Build in Margin
You all know the saying about the best laid plans. The reality is that we make our little plan but often, it’s not the way things unfold. For families like ours with kids with rare-diseases we know this all too well. We need to expect that things will take us extra time. We need to expect that things will come up. If we can expect them, we can be better prepared. So give yourself extra time. Whatever time you think the task is going to take, build in extra time to do it. For example, if you need something ready for a Friday. Have it ready by Wednesday. Because if you wait until the last minute on Friday to get it ready, chances are some curveball may come your way on Friday, sucking up the time that you had planned to use. Oh mama, this has happened to me too many times to count! This is the reality of the rare-disease parenting life. You never know when needs are going to come up. Building in this margin is going to help manage stress levels and allow you to breathe a little easier because you gave yourself a cushion.
5. Schedule in Down Time
We have to be smart about this. This is a busy time of year and if we go, go, go we are going to burn out. We are going to feel the very thing that we are trying to prevent—holiday exhaustion. Have a big holiday event to attend? Make sure the next day, there is downtime built into the schedule. Preparing a big meal? Plan to order take-out for the next day or the day before. Look at that schedule and look at your plan and find moments where you can relax, rest, and recoup! Build it right into your schedule ahead of time.
6. Say No
This is so much easier said than done. We want to do it all. We don’t want to miss any fun. We don’t want to hurt any feelings. Believe me, I’m the first one that wants to say yes to it all. I have major fear of missing out. I also like helping and contributing. Volunteer needed? My hand darts up without me even physically feeling it. But I’m a rare-disease mom and what I have learned is that every time I say yes to something, it comes at a cost. A cost to me, a cost to my child, a cost to my family. So I have learned that I have to temper myself. I have to choose wisely and commit to what I am only realistically able to do. This has been a hard lesson to learn for someone like me. Honestly mama, sometimes you have to say “no” to other things so you can say “yes” to you. Yes to your downtime, yes to those magic moments you’ve carved out for your family, yes to cuddles on the couch, or a hot bath, or absolute nothingness. The reality is we can’t do it all and do it all well without sacrificing our physical, mental, or emotional well-being. So we have to learn realistically what we can and cannot do. Because sometimes the person we should be worried about disappointing is ourselves. Say yes to you!
7. Simplify
Let’s just give ourselves a break, shall we? We are not competing for the holiday goddess of the year award (I hope that’s not a thing). Close the Pinterest app, puh-lease! Sometimes good enough has to be good enough. Let’s not exhaust ourselves by trying to make every single thing the grandest of grand. Listen, if you really like doing things that way, I get it and I don’t knock you. But for the sake of your health and mental well-being, choose just a couple of things that you are going to go over the top with and the rest, choose simplicity! For example, if you are buying holiday gifts, use your planning method and take a little time upfront thinking who you have to shop for and get it all on a list. I’m talking everyone: teachers, hosting gifts, work colleagues, therapists, etc. Whoever it is you buy for, get it all on a list. Then search around online for ideas of what to get them. Don’t spend your time wandering around a mall waiting for inspiration to strike and to spot the perfect gift. Don’t spend your time physically running around to 8 million stores. It’s just not efficient. Once you’ve got your list figured out, pick one day and sit down and do all of your shopping online. Or pick one day and hit one or two stores and knock it all out. To simplify even more, I’ve heard of people buying virtually the same gift for everyone. Find one or two great items and buy in bulk. Gift cards and gift baskets are okay too. We are rare-disease parents, people are going to have to understand. Really, it’s okay. Apply this simplicity method to everything on your list! You like doing holiday baking with your kids but the part that they really care about is the decorating of the cookies? Buy the store made sugar cookie dough ready to go. Spend your time enjoying the decorating part with them. Want to make your special pasta sauce for a holiday meal but it takes all day? Great, outsource the appetizer tray or the sides by having someone else bring them or ordering them from a local restaurant or deli. You get the gist, find ways to make each thing on your list just a little easier.
8. Manage Expectations and Don’t Compare
We’ve all watched too many Hallmark holiday movies with perfect family moments, a perfectly set table, and perfectly dressed kids. But the reality is that because our children have medical conditions, we often have to holiday in a bit of a different way. Sometimes we have to manage our own expectations of what our holiday looks like. Take a good, realistic look at what works for your family. Let go of other people’s expectations of your holiday and alter yours to what is going to truly honor your family. That might mean that you have to come up with new and creative ways to make the best of your holiday. Maybe the overstimulation of waiting in line to see Santa doesn’t work for your child. Scrap it! Maybe a big formal dinner around a table that lasts hours on end, isn’t realistic for your child or for you because you have to tend to your child. Find an alternative approach, like a holiday pajama party where everyone eats in the family room. Get creative and find ways to make the most of your holidays by choosing things that are going to bring out the best in your family.
9. Practice Acceptance
The holidays can bring another level of stress because holidays are often when we spend time with family members and extended family members. The truth is, most of us have family members we’d rather not have to spend our holiday around. An outspoken rude uncle, a passive-aggressive in-law, or a competitive one-upping cousin. The holidays are also probably not the best time to set these family members straight or cause a riff. Often the best thing we can do to prepare ourselves is to just accept that they are the way they are and we probably aren’t going to change them. But that doesn’t mean we have to be part of their kind of crazy. It doesn’t mean we need to park our butt next to them and endure hours upon end of their unkind behavior on our holiday. We can be polite and then we can be busy. Excuse yourself when you can and stay circulating so you’re not stuck and annoyed the entire time. It’s your holiday, don’t let anyone hijack it.
10. Keep Your Self-Care
Last, but not least, one of the best things we can do during this busy time is stick to the things that we do for self-care. Don’t let those go out the window just because it’s a busy holiday season. We are going to need those now more than ever. Exercising, reading, stretching, praying, meditating, hot baths, long walks, whatever it is that you do to take care of yourself, keep doing them. Keep making yourself a priority even during the busiest time of the year!
That’s my top ten Holiday How-Tos for the Rare Mama. Hope these help you and your family soak up the good stuff this holiday season!!!
