Fibro Hope

My Life as a Parent of a Child with CFS

By Mary Robinson, MS Ed


Article reproduced from The Pediatric Network


I just want to say that I love Jean’s article for this month, and I agree with her. I am glad that she has shared her relationship with this wonderful man, Dr. David Bell, with you. I feel the same way about his tireless devotion to the research and treatment ideas for patients with CFS. My children have been so very fortunate to have Dr. Bell in our corner of the world.

I have had an overwhelming desire to just sit and write to you about my life these days. So in this extra issue, I thought that is just what I will do. I am talking to all of you out there in the world of CFS who have children with this illness, or who wonder what life is like for the wee sufferers. It is so hard to watch your children suffer without a thing that you can do to ease their pain. I am feeling so very helpless these days, so very small in the realm of this thing called life. My 9-year-old daughter, Meg, has had CFS for 5 years now. When she became ill her older brother was in the worst years of his struggle with the illness. We have been blessed with his remarkable improvement in recent years to a totally normal teenager. He is off all his medications, is very active in sports and socially, and once again is excelling academically.

When I was putting together last month’s column about parenting young children while you, as a parent, have CFS it made me realize the many issues there are for parents of a child with CFS. It is not the same as last month’s article. I am fortunate to be of good health. And to be honest I always feel like I have no right to complain about my life, because I am healthy. While I thank God for all of my blessings every day, I do find myself overwhelmed at times with the challenges of coping with my daughter’s illness. My main source of hope and encouragement in this struggle is, of course, the people at the Lyndonville Family Health Clinic. Dr. Bell is always willing to listen to my concerns and to see Megan to check on one symptom or another. Last week he treated a hangnail for her while there on a CFS follow-up and he commented that he felt so good. He was able to be a real doctor for her and TREAT something and Make it all better. Megan got such a kick out of this. She laughed the rest of the day at how happy she had made him, and how funny he is. He also seems to remember every ticklish spot on Meg’s body and is sure to get a giggle when checking her tender points. This is a side of him that Jean didn’t mention: his remarkable sense of humor. I love to listen to him prattle on about his family or the state of affairs in CFS because he just has a funny twist, which makes it easier to keep going. And he shares this humor everyday with the kids in his office. If he is down about a treatment or a patient, he never lets his young sufferers see it.

Meg and I have a pretty set routine to our day. I get up early to get my healthy kids off to school, while Meg sleeps in. I usually have about 1-2 hours before she arrives to get any thing done I need to do. Then around 8:30-9:00 AM she stumbles down the stairs, usually feeling “awful.” After a bit of a rest on my lap we venture to find something her stomach can tolerate for breakfast. Lately it has been an egg in the shape of a smile with bagels for eyes and her pills in a cup for the nose. I love the little girl smile it brings to her cheeks to see her breakfast face. Then she usually curls up in a ball on the couch to wake up to a TV show. I attempt to get some laundry done, or a bit of cleaning or a grocery list, but inevitably I don’t accomplish much. I feel guilty if I am not with Meg, especially on the days she feels so terrible. If she was older, as my son was, then a bit of independence is good. But she still needs me as any child under 10 does when they don’t feel well. And at times I feel confined and homebound myself. Unable to run to the store to get a gallon of milk, or to clean out that front hall full of old boots, and coats. I just feel trapped and unable to escape. Then before we know it, it is time for lunch and the tutor. Our wonderful and understanding tutor arrives and if she is lucky, she may get Meg’s attention for up to an hour. Usually not. She is gifted at being able to change teaching tactics and subjects to best keep Megan’s attention and to keep her on task. But she knows that when Meg says she is done for the day, she is done. Lately Meg is able to do little else. We read, watch some funny shows on TV, maybe do a bit of baking. If she is up to it we play some game or other, or she will work with her puppy on his training. Then her brother and sister get home and it is the downhill slide until dinner, and then usually a pain filled evening of snuggling with me in the rocker or on the couch.

So if in reading this you see yourself, please know you are not alone. You may wonder what things you can do to cope with this life of children’s pain. Because there are things that you can do. I am sure you have all heard that you need to take breaks for yourself. This is very true. Finding time for a relaxing bath or a good book can be rejuventating as well as getting out of the house for a night out with your partner or friend. While these ideas do help me to keep my sanity, the most useful thing I have found to help me feel connected is the online connection.

If I did not have my computer I do not know how I would survive from day to day. It sounds silly, but it is true. There is a wonderful parent group where we email and support each other through our children’s daily trials. (To get information about this list or to subscribe go to http://www.tertius.net.au/mailman/listinfo/cfs-p.) There are also the other half dozen mothers who I write to at least weekly about life with CFS in the house. I have come to know these ladies very intimately and I cherish their friendships and support. Some of them have CFS some do not. It doesn’t matter. The issues that surround parenting a child, the heartache this life brings, are the same. No one who has not been here understands. My family is wonderful and they are supportive, but they do not understand. I feel I am whining when I talk to them somedays and they feel they need to do something to get me out of the house. My email friends offer validation and commiseration. They just agree they are in the same boat and it is hard. That is where I get my strength. From these parents who live in the same trenches as I do. Who battle the schools, and the pain, and the allergies. These are the people who throw me the lifeline that enables me to keep going. I know that I am not alone. I feel connected, and needed. I am not only needed by my child and my family, but by my email buddies who rely on my support to get through their days, as I need their support to get through mine. To all of you out there I say, Thanks!!

There are also some wonderful websites, some of which are listed below, that do a wonderful job dealing with the issues of CFS in children. They offer places for kids to go, and parents to learn. When you go to the Internet you have to view it like you were turning on the TV. There are good shows and bad, good commercials and bad. You have to learn to be careful about what you tune in to. I use the Internet to find support not information. I do look up some things but I don’t have the time to read all there is on the sites, and to know weed out the good from the bad. I rely on Dr. Bell to keep me abreast of things that warrant my consideration for treatments etc. and I rely on my email buddies to get me through today.

Websites that have special sections for Youth with CFS/ME:

Last month I wrote about ideas for parents with CFS who were raising small children. We had a wonderful idea sent to us that I would like to share with you. This mom suggests getting some “volunteer” help with childcare.

“Last year we had a group of 7th grade Girl Scouts who needed service hours come after school. Someone came most school days. There was always an adult home when they were here for backup. They were mostly new to sitting and gained experience while giving me some time off. One of the girls, who is no longer a scout, continues to come on the weekend.”


The Parent’s Corner
My Life as a Parent of a Child with CFS
by Mary Robinson, MS Ed
(Published in Lyndonville News, February 2000)