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The Parent's Corner
Surviving the Holidays While Coping With
Illness
by Mary Robinson, MS Ed
Published in Lyndonville
News, November 1999
Can you believe how fast the holidays seem to creep up on us each year? It seems they come faster and faster the older I get. I have always loved the holiday season, from the time I was a little girl. I come from a large family of 8 children, and family gatherings have always been very important to us. We gather at my parents' cottage on summer weekends and in the fall we all retreat to our homes to get into the swing of school activities. (Of course in our house school IS the activity, but you get the idea.) And when I just think we are falling into some resemblance of a routine, Thanksgiving and the holiday season are knocking on our door, and family gatherings again take precedence.
Whether this is your first holiday with a child with CFS or your 5th, a little planning and attitude readjustment can go a long way to making it an enjoyable time of year for your whole family? My feelings on holidays are much like my feelings were about vacations in the July issue. Don't let CFS rob you of these special days. No matter how ill your child is, you can help them to make magical memories. And it is those special moments that my son now remembers. He does not dwell on the family occasions we had to leave early or miss, but the ones he attended and enjoyed. This time of year is stressful for many parents. Not only do we have extra shopping, baking and organizing to do, but we also have the increased needs of a sick child who may be on the November slide, as Jean calls the "November factor" in her article. How have we managed it in our family? We have learned to slow down, plan less, and do only half of what we plan. Every year it is a bit less stressful, and a bit more fun. I think that a large part of enjoying the holidays is figuring out exactly how much we can handle. If you have healthy children as well as your child(ren) with CFS, then this planning is essential.
If you plan to simplify or limit activities for your child, and then go all out yourself, you are still going to overdo and pay the price. If you are stressed out, your child will be stressed out. And if you are going crazy trying to do all the things you used to do, then all you are going to feel is guilt that you can't do it all anymore. So the key, I think, is to de-stress the season. If YOU cut back and simplify and remain flexible on your plans, then you will be there for your child when they need you without feeling like you should be doing something else. Find out what is important to your child and let that help guide you in your plans. My kids love to help with the cookies, but they could care less about wrapping the gifts. So I bake with them and either buy gift bags for the presents, or pick a night to have someone help me to wrap gifts. This has actually been fun in years past when my sister comes over to help, or my husband and I grab a glass of wine and a roll of wrapping paper and go to work.
If your child is very ill and each day is truly consumed with taking care of his/her needs, such as baking a special diet, helping them to get around, dressed, maybe even to school and back, you may wonder where you are going to find time to enjoy anything this time of the year? I wonder somedays where the time has gone. I wake up at 5:00 with our puppy to start the day, and before I know it dinner is done and we are getting ready for bed. If this is your day don't despair.
Below I have tried to jot down some ideas that stick out in my mind of ways that my family has found to survive the holidays. Many will not apply to you, depending on what you celebrate this time of the year, and on how many activities you and your child can enjoy. But these are my ideas that have helped us. Go ahead and skim the list. If one item on it helps you to enjoy your days a little more, it was worth my sharing.
- If you are cooking a meal for company my first rule of thumb is to Plan Ahead and Plan Easy. I don't do things that I can't do ahead of time. And if it has more than 4-5 ingredients then it is too complicated for me to make.
- I buy nice paper products and save on dishes. No one seems to care, and it does add a festive setting to the table. Now days you can even buy cheap fancy tablecloths that help set the mood without adding to your laundry. If you don't have lots of people to help clean up and do dishes, then don't use them. You can even buy disposable aluminum pans to cook in.
- I always make sure we have a quiet zone for my children to go to if they need some down time. This may be a bedroom upstairs, or a couch in the den. But I make sure that wherever we are, at home or a relative's, that we plan ahead for this private space. At my folks' house it is an upstairs' TV room. The cousins may come up, but they know that if they come up to that room it is for quiet lounging and no roughhousing or else they leave. This has saved my kids many times. From the gatherings at our own home, to my parents or my sisters, having a quiet refuge that they know of ahead of time has allowed us to be able to extend our visits and also to enjoy them more.
- Be ready to leave the gathering at a moment's notice. My husband and I plan ahead for this. It sometimes means driving 2 cars, or having a backup way to get home if needed. There is nothing worse for the child with CFS to crash just before dinner (and that is always when it happens) and have to drag the whole family home. Or to have to stay until dinner is over, so the rest of the family doesn't miss out.
I don't think that there are many gatherings this time of the year where at least I do not leave early with a child. And instead of resenting these times, I actually treasure them. We go home alone to a quiet house and usually don our most comfortable nightclothes and curl up by the fire or the TV. Then we share our most private thoughts in the dim light of the room. By planning ahead and knowing that we may need to leave a function early, we can treasure whatever time we are able to attend. And if we have to cancel out before we even leave the house, so be it. I used to feel resentment if I missed out on gatherings and parties because my kids were sick. Now I feel blessed when I can partake in what I can, and I cherish the fact that I can be there for my child if we need to miss out on an event. The times we have missed events are some of our best times, because we make them special times alone at home together. I think attitude has so much to do with how we handle the fluctuations of this illness. If I make the best of the situation, then my child's attitude generally follows. My daughter may feel terrible, but getting undivided attention from Mom that is freely given helps make it a little easier to take the disappointments this illness can bring.
- Surviving the shopping is something I am still working on. I think I am going to resort to the catalogs more this year, and try to cut the number of outings to the malls. Soliciting help from others may be in the cards too. Like I said, I am working on this one. We do plan one mall outing a year with the kids. They want their day out, so we give it to them. We try to go early before the crowds take over the malls. We take the wheelchair, and we let our daughter dictate the day. By going at her pace, and to her places, it is usually a successful outing. And then she doesn't feel she has missed out.
- Plan for rest periods with your child every day. It will not only help them to get through the day, but give you both a chance to reconnect with each other. I love to rent the holiday movies that are out, or watch the collection we have at home. I can rejuvenate by cuddling up on the couch and munching popcorn with my little girl. Even teenagers enjoy a movie or a game with a parent. A little one on one time is great and is needed and cherished. And when we are spending this cherished time together, I refuse to think about the tasks that need to be done. Because nothing is more important than cuddling with my little girl when she isn't feeling well.
- Write down everything that you want to do this season and then cross off half of it. (This is easier said than done. But by actually putting down on paper ALL your plans you can often organize better in your head, or delete things you don't really need to do.) This includes everything. I do not bake near the cookies I used to, nor do I deck the halls like I once did. But by planning ahead and deleting many tasks, I stop feeling overwhelmed by what ISN"T getting done, and enjoy the tasks I do have time for.
- I read this year a suggestion that has helped me to stay organized. It is to use one little notebook for all your holiday lists. I bought a small one that I can carry in my pocket or purse and sectioned it off with tape tabs. I have sections for each of my family to list their wish lists, and the purchases made, as well as a page for those extra gifts, (coworkers, neighbors) and then a To Do section, and a To Buy section for the days out at the stores. This is working very well this year for me.
- If you don't like doing something, don't do it. If you hate to bake cookies, then give it up. You can buy fresh baked cookies at the bakery if you really want the treats, but don't waste your time doing things that only stress you out.
- Rest, rest, rest. If we have a party or family gathering we really hope to attend, then we plan ahead so as to conserve our daughter's energy and increase the chances that she can go. My sister has a holiday party each year at her home. We used to make a big day of it and go shopping first and then to her house. Now we lay really low for a few days before the party, and hope that by conserving her energy she can at least tolerate the gathering. We try to never plan more than one major outing or party per week. Picking and choosing is the key to our success.
- If there are people you would like to give a gift to, but money or time are tight write a note to the person and tell them what they mean to you. Your child may choose to draw a picture for them or share a favorite memory they've had with this person.
- For a quick delicious treat most people love, make this easy tasty fudge recipe.
It calls for:
3 cups chocolate bits (low fat ones work fine)
1 can sweetened condensed milk (no fat can works just as well)
Dash Salt
1 ½ tsp. Vanilla
½ Cup Nuts, marshmallows- optional
Toss all ingredients in a microwave safe bowl and heat in the microwave.
Stir after 2 minutes. Keep heating and stirring every 1-2 minutes until smooth.
Poor in a wax paper lined 8" by 8" pan and chill.
Cut into 1 " pieces and wrap in plastic wrap and tie with a bow.
This takes no time at all, and makes a great gift for teachers, co-workers, or a
child's special friends they wish to acknowledge.
I guess I have rambled on enough about our plans for this time of the year. Planning and a relaxed attitude have helped us to get through this time of the year in the past. I still will get stressed out, but hopefully, the kids won't. If I can just keep in mind that this time of the year is about people, and sharing and caring, I will be ok. I hope that you can find your balance and enjoy some wonderful times with your cherished ones. And may your whole family have a blessed holiday season, and a New Year full of Hope.
Here are some additional ideas that Jean had on how to enjoy the season ahead:
Have a great holiday and remember to do your best to make it memorable. It is all we have. There are no DO OVERS. So, no matter how much you hurt or are unable to accomplish, do something special. It does not have to be on a grand scale, just personal and together.
IDEAS:
- Put on some music, spread out a blanket on the floor, and sit around the fire with some non-alcoholic grape juice and enjoy.
- Try to go to church on Christmas Eve if you are unable to attend any other time of the year.
- Do a family dinner. Have all others bring the food so that you do not have to cook if you are unable. The most important thing is to be together. It does not have to be elaborate.
- Have some friends over to just sit and visit. Perhaps someone you have not seen for a while to get caught up on old times. It is wonderful and friends, good friends, really help.
- If you cannot go shopping for the holidays, order from a catalog or on the internet. If your budget is limited which is usually the case with CFS unemployed, do the minimum. But do not let the spirit of the holiday pass without some recognition.
- Drive by the lighted houses or villages (or the city, for you city folks) to enjoy the festivities. Our children loved this most of all.
- Decorate to some degree in your house. Even if it means knowing that you have to clean a little or there will be putting away to be done after the new year.
- Bake cookies, make a gingerbread house. Our kids loved this. Especially when they were the sickest. Everyone joined in and the kitchen was a complete mess. But it was well worth it. It has been almost 15 years and they still talk about it.
- Put on great music on the stereo...(do we call it that anymore?) Tape deck or CD player, whatever.
- Take a wheelchair if necessary but get out to a special function: go to a play, take in a movie, or see some Christmas events.
- Do not let the holidays go by without participating to some degree. It is a must, especially if you have family. It is their life too and you cannot stop living because of this rotten disease. Do not let it rob you completely of every enjoyment. Unfortunately, you have to work even harder at it to overcome it when it is easier to just lie down and not fight it.
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