Fibro Hope

The Emotions of Parenting a Child with CFS

By Mary Robinson, MS Ed

Published from The Pediatric Network

I began writing this column on a warm August morning. I was sitting in the solitude of my quiet home longing for that peaceful time to never end. I knew that we soon would be faced with the inevitable problems that school forces upon us each year. In the summers my family is fortunate enough to get a “little” break from CFS. My daughter has learned that while she needs to still limit her activity, she can get through a day without her wheelchair, or the headaches that dominate the rest of the year. Is it because she doesn’t have to worry about school issues and can kick back and not notice her ills? Maybe, but I truly think we are just lucky enough to get a break for a few weeks a year.

I also wonder if it is I who gets the break? There is no pressure on the kids in the summer. I am more relaxed and we go at their pace and do what they want, so maybe it is me. My 9-year-old has enjoyed a summer of lounging by our pool or in a chair with a good book. She has connected with a few new friends that we met through school, and slept according to her body clock and read a lot of books of her choosing. If she didn’t feel up to something we didn’t do it.

And it went too fast. I usually can put CFS in a closet for the summer. Not this year. While we did get a “mini” break it still reared its ugly little head too often for our comfort. Days when we tried to do a little too much were met with evenings followed by days of agony.

I don’t know what I am trying to say. The emotions of being a CFS parent are what I wanted to write about, the ups and downs, the roller coaster, the feeling that you can never get off this whirlwind of a ride. And if you do find a way to get off for just a minute you are caught up with a guilt that hits you hard in the chest and knocks the wind out of you. How can you possibly take a day or a weekend to do something for yourself, when you child is not well enough to even get out of the house? Even going to the store can bring a wave of guilt flooding over you if you return to find that your child needed you while you were gone. People tell you that you need to get out, to take breaks, AND YOU DO, we all do, but when the break is over, we still need to return to our life. And how can we possibly feel sorry for ourselves when our children don’t get a break?

Sometimes I feel that I do not understand because I do not have CFS. But in talking to a friend who has CFS and a child with the illness, I realized the parenting emotions are the same. The frustrations of our children always being sick are the same, and the guilt of not always being able to handle it are the same. Sometimes we need to just step back and encourage our children to become independent and to find ways to deal with the pain. It can consume me, as a parent, to try to be there every time my daughter needs me. And from talking to others I have learned that by trying to always be there for her I may also be robbing her of the opportunity to learn coping techniques that will help her.

Well, aside from all those emotions and issues, a new school year is here. I can’t believe it arrived. It snuck up on us without any warning. There are choices to make, decisions to be had, and none of us are ready to give up the lazy, hazy, crazy days of summer. Lounging by the pool, sleeping late, bonfires at night and chasing butterflies in the daytime, a wonderful life. How do we take that along as we head into yet another year of schoolbooks, homework, headaches, tensions, teachers’ demands, schools expectations, and never enough time to stop and smell the dying roses? The sheer mention of the word school sends a band tightening around my head, and a sizzle that attacks my stomach. I know my daughter feels the same way.

It used to be that August was a time to buy the new lunch pails and book bags, the new shoes and clothes. It was a time for parents to dream of a routine again for everyone. It meant football games and cooler days, and hiking in the great outdoors. Now, it is wondering if that planned hour or two of school will be tolerated. And how will I help my daughter deal with the questions of being a part time student? How can she fit in to her class with her peers, when her attendance is so erratic? How will we handle the headaches that will surely surface and the stomach and leg aches that will be a part of daily life again when the unforgiving routine of daily life descends on us?

And that is what it is, isn’t it? It is life, preparing for life. Learning how to not give up, how to cope, and to keep on going. It is all about learning what you can tolerate and how to keep pushing a little bit every day to be all that you can be. That is what I want for my kids after all, isn’t it? I want them to know how to reach for their dreams, to go after that unreachable star? I want them to strive to do all that they can without the fear of being different or having a flairup of symptoms. I don’t want them homebound if they can tolerate a little time with their peers. This is what Dr. Bell has tried to teach me, and all his patients. Find your balance and go for it. Do not get so cozy in that cocoon you call home that you never leave it. Do not give up on life- go after it, whatever you can grab from it, and take it.

With the help of a supportive staff at school we have finally managed to get a few things in place to help our daughter do just that. Last year we began a sort of “lunch club” for her. The special education teacher offered her room as a place to meet for lunches with a few friends. At first my daughter picked her lunchmates, but soon the teacher was suggesting some students that would be in her class this year. It was a wonderful idea! It was a quiet room with the lights off and only a few girls to visit with. We continued to see one of the girls over the summer and last week we even had a small end of summer gathering with 3 others in her class this year as a way to ease into the first day back.

The IEP (Individualized Education Program) that was written for her last year stresses that she “Needs to develop and maintain social contact with peers.” The school has chosen to do this by encouraging her to continue coming to school for her “lunch dates” and possibly a few special classes like Art and Music. The IEP also states that she “Needs individualized instruction and one-to-one student/teacher contact.” This will be done in our home or a small quiet room in the school by the teacher consultant or her tutor. We all hope that she will be able to do some of the teaching at school with a few classmates and her tutor. By so doing, she will be in the LRE (Least Restrictive Environment) which is required in the IEP. Her tutor will be responsible for her academic needs, at least for now. It is hoped that she can get to school for some academic areas, but it is understood that prolonged time spent in the classroom with lots of noise, activity and children always sets off her symptoms.

We feel very fortunate that “our” school is making such a strong attempt to work with us and our child to meet her educational needs in light of her medical condition. We know most parents are not this fortunate. It was not an easy road last year to convince the school of these needs. But the hard work on our part to educate the staff about CFS and educate ourselves about the law and how it related to our child’s condition have all paid off to a good start to a new year. We wish all of you who are still working with your child’s school all the luck there is to offer.

Our children will be stronger because of our choices to help them attain their goals. They need our love and our trust, and also a gentle nudge every now and then. I love summer because I stop nudging. I don’t push the kids and I don’t push myself. But 12 months of that life would be pretty unfulfilling. So thanks Dr. Bell for nudging me to nudge my kids. For those of you facing the unbearable problems of some school systems that refuse to believe you and fight you to push your kids beyond their limits- my heart is with you!! All of us at the Lyndonville News think of you, and strive to do all we can to make your plight more tolerable. The struggle that all parents must face in their own heart and their own home is hard enough, but when the school, medical, or legal system wants a piece of you too, it can grow to be too much. Just know you are not alone. There is a light at the end of the tunnel, and we are here to help if there is anything we can do to help you find it.

The Parent’s Corner
The Emotions of Parenting a Child with CFS by Mary Robinson, MS Ed
(Published in Lyndonville News, September 1999)