Parenting When Life Gets Rough
Article reproduced from The Pediatric Network
As parents, CFS has been one of the hardest things that my husband and I have had to come to terms with in raising our children. I am sure I speak for all of you out there, when I say it is heartwrenching to watch your child suffer and to have no idea what you can do to help. At first the terrible road to a diagnosis, and then living with the daily trials of pain, and sleepless nights, the fatigue, the isolation.. The problems that these children and secondarily their families must cope with seem insurmountable at times. We have always been lucky to have the unwavering support of our families. This at times has been all that has helped us to get through. We have also been fortunate to have a supportive school system, a wonderful tutor, and the best doctor there is for CFS.
But what happens when things start happening that no one understands? What do you do when even your doctor doesn’t know what to do? Where do you turn when the pain gets greater and greater, and weird unexplainable symptoms begin to immerge that even make your doctor wonder what is going on?
Our 10-year-old, who has been ill since age 4, has had a rough year. Last November I shared a story with you about how we coped with her failing health by finding something she could be passionate about- it was llama training. While it helped her mentally we noticed that by fall her health was no different, the November factor hit hard and she went from bad to worse. On top of the usual pain in her muscles, limbs and back she began having weird jerking motions of her arms and legs, which we later learned are known as myoclonus or myoclonic jerks. She began having a newer type of chest pain that at times radiated down her left arm and nearly always felt like a crushing weight sitting on her chest. We discussed these new worrisome symptoms with Dr. Bell. When the pain went on for hours one night we went to the ER and had a chest xray and an EKG that came out normal. Her oxygen level was normal, even though breathing was difficult. We made 2 trips to the ER in December worried that something was happening with her heart or her lungs. Both times we were reassured that she was fine. The myoclonic jerks were more troubling. We underwent EEG monitoring that was normal and many other tests. Everything came back normal.
But it isn’t the tests or the results that I want to write about. It is parenting in this situation that has been at the front of my mind lately. Things change when our children get sicker. When they have trouble walking up the stairs to bed, or catching their breath, we worry. When the pain level seems to be constantly increasing, and their cognitive abilities decreasing, we start to feel like we are falling and there is no where else to turn. In the book I reviewed in this newsletter, one of the young women stated that when she falls, her mother crashes 10 floors below her. I read it with total understanding and admiration for this young woman who could see that this illness affects everyone in the family, not just the ill parties. As a parent you want to make your children feel better. When you can’t it is devastating. And the more you try and the less you can do to help, the harder it is.
As my husband and I were working our way through the past few months we grew closer. We both sort of came to an understanding that we had to trust in our little girl’s pain and do all that we could to help her. For a time that meant setting up a bed downstairs and sleeping with her so that she would not have to pull herself up the stairs on her knees. It meant using a wheelchair whenever leaving the house, and often around the house. We tried to help her to come up with ways to get her mind off of her symptoms. We rented lots of funny movies, and taped lots of funny shows. We bought her a tape of an N’Sync Concert that she can pop in when she isn’t feeling well and she can loose herself in her favorite group’s music. We made up a bag of activities that she could do sitting in the chair in the living room. There are small handheld games, bead sets, markers and paper, and clay. Her therapist introduced her to a special kind of clay known as FEMO. It is unscented and does not harden when left out. It is great for her hands as she works with it. It has actually helped to build up some muscle and relieve some of the finger cramps. It needs to be kneaded at first but quickly becomes pliable and very workable. It comes in dozens of colors and we even bought a lapboard and clay tools to make it more fun. The therapist has suggested ideas for her to do with the clay, from making a sculpture of her mood to just sitting and kneading it when frustrated. It has been very beneficial to her to have this outlet.
But the hardest thing for my husband and I to deal with was to figure out how to handle the day to day trials of living. Just doing the normal mundane tasks around the house became a chore. We felt our world spinning out of control and we didn’t know how to get it back. We didn’t know when to coddle our daughter and when to try to maintain a sense of normalcy and coping so that she did not become the illness?
Dr. Bell told us that it is not uncommon for patients with CFS to become almost hypersensitive to their symptoms, worrying about things that a normal person would just ignore. At this young age, it is hard for children to know when to worry, and when to feel at ease knowing that this is just another part of CFS. For us, it was a hard line to walk. We did find that our attitude had an effect on our daughter’s coping. If we do not appear overly concerned or worried then she does not worry as much. But if we stop everything and show that we are overwhelmed and anxious and at a loss as to what to do, then it seems to make her feel even worse, and more hopeless about her situation.
I have always sensed that I cope better by keeping a bit of denial in my mind as to how bad things are. I found this past winter that I was constantly challenging myself. I worried that if I allowed myself to cope by denying how bad the illness was, I would be “harming” her by making her feel I didn’t understand or believe how bad she felt.
In the past 2 days I have talked to 4 other parents of teens with CFS. I think we all have this coping mechanism of maintaining a degree of denial and worrying about how our children will perceive it. One of these moms suffers from CFS herself and she stated that even she goes through this denial. We all believe our kids, but we all need to keep a certain distance emotionally to stay sane. Otherwise our child’s illness would consume us, and render us useless to help.
I am there every day for my daughter and she knows that I will do whatever I can to help her. But I also try to keep some perspective about our situation. I can love her, help her and support her without smothering her. Too much concern, worry and help can actually stifle a person. It is so hard to find this balance, and I am still searching. It changes from day to day, as my child’s needs change. It also changes from year to year, as our children grow older. I hear parents of late teens saying how hard this is for them to know the balance between being there for their child, and stepping back when needed.
I have found that when things get bad I tumble down those 10 floors just like the adolescent mentioned in the book review to follow. It is so important to make our child feel loved, supported and believed. It is just as important for them to feel hope and optimism. I have found sometimes that it is easier to just give up for a while, or to take a vacation from life. We all need to do this. We stop worrying about what anyone else is thinking, we rent movies, we vegetate and we just get through the day the best way that we know how, a minute at a time. But we also need to know when it is time to stop and to rejoin the living- to get back to the art of living. It takes reevaluating life where it is and looking for the positives and seeing what you may be able to do to make things better.
When we realized that things were getting a little bit better for our daughter physically, we also had to face the fact that we had gotten ourselves into a bit of a rut. We talked about what we could do to regain some control. It was actually a very positive time for us. Together, with our daughter, we decided that a regular bedtime was first, upstairs in her own bed. Then we decided that a daily regime of getting up, dressed, teeth and hair brushed, and exercise were next. We asked her what she felt was most beneficial and these were areas that she wanted to strive for. The exercise is mild stretching, but it does help. Getting dressed may be just changing into clean flannel pants, but it makes her feel she is taking some control over her day.
She is connecting with some of her old friends again, ones from her class and from her online and telephone CFS friends. I am reading to her more and she is doing more independent reading instead of watching TV. She played the piano the other day, the first time in months. She feels like she is taking control of her life again, and her attitude is changing as she does more for herself. Along with this “taking control” she has had a change in attitude. She is more upbeat about everything. When symptoms get bad she uses techniques she has learned to try to control them instead of becoming lost in feelings of hopelessness and worry. These will be the topic of my next column.
And last week, she began tackling a few hours a week at school. She decided to try going in for Science class a few times a week. She has an “I CAN” attitude, not an “I will try.” I am amazed at what she is accomplishing and so very proud of her.
And what is different that led to this? Attitude! Dr. Bell helped us to see it was time to stop worrying so much and to start living again. This wouldn’t have been possible a few months ago, but the time is right, now. It is a balancing act always. Knowing when to step in and push our kids to try something and when to sit back and take a day off to just snuggle and watch movies. It is about always trying to find that delicate balance and then keep it. It is about getting through today, and then tomorrow, and then the next day. It is about living life the best that we can one day at a time.
The Parent’s Corner
Parenting When Life Gets Rough by Mary Robinson, MS Ed
http://www.pediatricnetwork.org/parenting/parentscorner/LN01-life_gets_rough.htm
(Published in Lyndonville News, March 2001)
