The Parent's Corner

Caregivers Surviving Winter Flare-ups

by Mary Robinson, MS Ed

Published in Pediatric Network News, February 2004

January is over and February is trudging along. And every day seems like it is never going to end! Winters can seem to go on forever in some parts of the country, and when our kids are sick, as so many are right now, the days are counted in minutes not hours. Sleep deprived parents are staying up to comfort sleep deprived youth through the wee hours of the morning. And we are all feeling that helpless loss we must reconcile ourselves to, when no matter what we do, it doesn’t help. We try to offer ideas, treatments, suggestions only to find that the pain is still there, the fatigue still acute and the brain still foggy. It is enough to drive any sane parent over the edge.

So what can we as a parent do to survive these days, and to continue to be able to be there to support our ill children? The first thing I would recommend is to try to find some time, if you haven’t already, to join in on the conversation in The Parents’ Corner. If you need a password to enter this password-protected section of the forum please don’t hesitate to ask us!! This has been such a saving grace for many of our parents these past few months as we have struggled with the issues of raising children with these disorders. We have a few parents suffering from various forms of the illness themselves, and we have some facing the struggles of parenting children under the age of 10 -- an extra daily challenge. But mostly we are tired, emotionally drained parents who want to be there for our kids, who want to help them through their pain, who want to comfort them in any way we can. If you have not had the time to join us, please think about stopping by, if only to read some of the posts that others have left.

Aside from reading the forum, I think it is very important to make sure that you do not become so consumed in your caregiving that you loose yourself in the process. This is so much easier to say than to do. I am often a victim of giving too much, and forgetting to nurture myself, as I am sure many of our other members are too! What can you do to nurture yourself when so little of the day belongs to you?

1. Order take-out one day a week and serve it up on paper plates so there will not be any dishes.
   
   
2. Rent a movie that YOU want to see, and watch it with someone you love. (This can be your spouse, significant other, child, or a dear friend.)
   
   
3. Sit quietly and relax enjoying a glass of wine or lemonade or maybe even cocoa. These days my spot is by the fire, but soon it will be my back deck. Just 10 minutes of ME time really helps to restore some balance to my thinking and emotions.
   
   
4. Get a good book you have longed to read and READ IT! You can read next to your child at night or while they are doing something else, or alone. Getting Lost in a Good Book is always a nice diversion for me.
   
   
5. Give yourself permission to put all household chores on hold and go sit with your child and watch a movie, TV show, or play a game without feeling guilty for all that you are not doing. Sometimes I really need to give myself some time off to go totally enjoy some time with my daughter. We snuggle under the down blanket while I rub her head and shoulders, often serving up some favorite snack for us as well.
   
   
6. Spend some quality time with each of your healthy kids or your spouse. It can be a trip to the store or a movie, or a few hours at the mall. It can even be an early morning breakfast you can enjoy at a local restaurant before your ill child is up for the day. Making memories with my healthy kids is something I cherish, and I had to force myself to make time for this as well.
   
   
7. Think about a family getaway if your child can handle one. We are doing an overnight with friends at a local hotel this weekend. It will be low key and low activity, but will hopefully rejuvenate us all.
   
   
8. Take a warm bath whenever you can squeeze one in. Mine is right after dinner when my husband is available for the caregiver role. I have been known to squeeze it in before dinner if that is what works.
   
   
9. Call an old friend you haven’t seen in a long time. Even if you can’t get together, do a catch up on the phone.
   
   
10. Have HOPE that this day shall pass, and that soon it will be spring and summer and hopefully our kids will all be doing a little better, and then so will we.
    
    

You are never alone. If it becomes to much for you, you can join us in the forum or drop me an email at mary@pediatricnetwork.org. I think of all of you everyday, and all the parents who have not yet found us. If sharing my journey with you helps yours to be a little easier, then I hope you will not hesitate to contact me.

Here’s to better days for all of our children SOON!

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The Pediatric Network is run by Mary Robinson and Rebecca Moore Leibowitz. Our focus is limited to our supportive e-mail group. Although we no longer publish a newsletter, an archive of our articles and resources is available online. We encourage you to ask your health care provider about the newest medical information and how it may apply to you.

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