by Mary Robinson
The Massachusetts CFIDS/ME & FM Association Winter 2001 UPDATE
Last spring after my 10-year-old had weathered yet another harsh winter with the Chronic Fatigue Syndrome (CFS), I had 2 people tell me she was really depressed. One was a friend who had CFS and also suffered from bouts of severe depression, and the other our doctor. I knew she was down, maybe a bit blue, but who wouldn't be? She was homebound and did not have the life that a normal child should be having. But depressed? When I asked my friend how she could tell, she answered simply, "I can see it in her eyes." Worried, as any parent would be, I asked our doctor "Do you think my child is depressed?" He answered without hesitation, "Yes, I can see it in her eyes." He also went on to explain that he felt she was coping with it in a healthy way, but I was stunned. I pride myself on knowing my children and being there for them when they need me. How had I missed the visual signs that were so evident to those who could simply look into her eyes and see?
I first discussed the situation at length with our doctor. He had her on a low dose of an antidepressant and we discussed the different kinds of depression. OK so I could understand that a certain amount of depression is normal for a child so limited in her ability to function, be with friends, and lead a normal life. But I wanted to do more. I wanted to put a spark in her young life. I wanted her to find something that she could be passionate about. I wanted to help her find a reason to want to get out of bed every morning. So I prayed.
I first got the name of a great child psychologist who was not only local, but also understood and treated other children with CFS. I made an appointment for 2 months away. It seemed like a lifetime. I also tried to come up with activities that my daughter could participate in given her limitations from the CFS. I encouraged her to attend school at least 2 times a week for lunch. She had been too ill in the winter to get in to school at all, so it was hard to reestablish her lunch dates, but it was a success. She would eat in a quiet room with 3 classmates and was able to once again feel a connection to some of her peers. (This is probably the one thing we have done for our daughter that has had the most profound impact on her socialization and to help her overcome feelings of isolation. We have it written into her educational plan at school that she may come to lunch 2 days a week for a quiet supervised lunch with 2-3 class mates. It has allowed her to feel the tiniest bit of connection to a group of children she would otherwise never get to know.)
As she reconnected with some friends, and waited for her counseling appointment, I tried to come up with ideas of extracurricular activities she may be able to engage in. Maybe she could volunteer at our veterinarian's office for 1/2 hour a week when she was up to it. She absolutely loves animals and has since birth. There had to be something that she could do with animals that would help energize her. But what? Then one day she had the opportunity to go with another older teen to see her llama. She was able to help brush them and feed them. She welcomed the opportunities to visit the local llama farm whenever it presented itself. I was still thinking what many of you are, llamas?? What can you do with a llama? The months passed and soon it was July and fair time. My daughter's passion for these animals had grown, and she was definitely interested in pursuing the training of one. As I looked at these hairy, South American creatures, I looked skyward and said, "This is your answer to my prayers? To train llamas?" I honestly did. And to this day I tell myself, God works in mysterious ways, because it has been "an answer to my prayers."
After the fair I had a heart-to-heart talk with the family who owned the llamas. They were kind, friendly people who loved the animals and loved children. They welcomed any child who wished to help them work with and take care of their animals. The more I talked to these people, the more I felt this was meant to be. They understood our child's illness, and wanted to help her in any way they could.. If all our daughter could do was to come out on a bad day and pet her animal maybe that would give her something to look forward to. If she could do more than that, then great. If she couldn't do that much, then we would pray she soon could. They seemed to intuitively know what our little one needed and I immediately felt a connection to them and to their animals.
It took them a while to find the animal that was best suited to our daughter, but they did. This couple made a commitment to our child to find a llama with whom she could connect. His name is MacGregor and he turned 1 year old last month. He is a beautiful reddish-brown color with thick lush fur and eyelashes any girl would love. He is kind and gentle and loves our daughter as much as she loves him. We go to the farm 1-2 times a week. When she is up to it, she walks MacGregor around with a lead rope and halter. It may be only 5 minutes, but it is 5 minutes that she is up and around. On a bad day I walk him for her, on a good day she may walk him for 20 minutes. Then we get the brushes out and brush him down and say goodbye. Next July at the 4-H fair she will "show" MacGregor. He will be judged by how well he stands and lets her lead him around the ring. He will also compete in an obstacle course with my daughter leading him up ramps and down, and through circles and rings. It is more than I ever thought a llama could do.
And what has this to do with depression? Everything! My daughter still is unable to get in to school for more than 2 lunches a week and can not always manage her full 2 hours of home tutoring. She cannot always get out to see MacGregor as often as she'd like. But he is there, waiting for her. If all we can do is go out to feed him an apple and say hi, he is there. And his ears perk up when he sees her coming. Just having an activity that doesn't have to do with school has been a blessing. Having another of God's creatures needing her is a blessing.
Our daughter still has dark moments, and feels that her biweekly talks with her psychologist help her to sort out some of the issues she still faces with her illness. She visits on a weekly basis with our CFS friend who understands what life with CFS is like. She continues her piano lessons mostly on an independent study basis, and she works with MacGregor.
I encourage all parents to find.a passion for their child with CFS to enjoy. Everyone needs a reason to get out of bed in the morning. We all need something to be passionate about, something to do that makes our hearts sing. For one child it may be music lessons, for another writing poetry, another may enjoy gardening, but everyone needs something. Everyone needs to be needed. Do not let yourself get tunnel vision that all that matters in your child's life is school. Education is important and should be at the top of the priority list, but it isn't everything. We have a wonderful home tutor and our daughter is excelling in her studies at home. When she is able to again tolerate the activity in the classroom, she will rejoin her classmates at school. We long for this day, but it isn't today. Today she can handle a quiet lunch at school, some home tutoring, and a quick quiet visit to a llama farm. And she goes to bed tonight thanking God for the day.
Mary Robinson is a regular contributor to The Update. Permission was granted to reprint this article from The Lyndonville News. This on-line newsletter is a joint effort of Dr. David Bell, Jean Pollard and Mary Robinson.