My Journey With You

by Mary Robinson, MS Ed

Published in Lyndonville News, November 2001

There are so many things soaring through my mind today as I sit down to write this column. I was going to write about self-hypnosis, but changed my mind. As November hits us right between the eyes, I was going to write about our visit to the pain clinic and the relief we are getting there. Then there was the column I could never quite get out of my head and on paper last year, about how to cope when the well runs dry. Last year as my little one got sicker and sicker, there seemed to be less and less answers and less places to turn to find answers, and I wanted to put on paper the fear and frustration that consumed me then, and still does, about the many unknowns surrounding this illness. But maybe that is a column that is just too hard to write. To write that article, one needs to deal with fears we would rather not face. So what shall I ruminate about in this, my final column? I guess about all of you, and what you have come to mean to me.

It was the fall of 1995 that I started my journey working with families dealing with CFS. My son had recently been diagnosed and I was learning a great deal about what this illness means and how it can affect families and individuals suffering from it. Educational issues were foremost in our minds at that time, and while we learned ourselves what options were available, our goal was to reach out to others and share with them our newfound information. It was out of these early years of questioning and searching that A PARENTS' GUIDE TO CFIDS was born. It was a joint effort of a group of dedicated professionals and parents who wished to help parents lost in the early days of trying to cope and also about life in a family where CFS had invaded the children's lives. It was begun as an endeavor to share educational concerns and issues and ended up being a manual of our experiences, (Dr. Bell's, Jean's, mine and others). It incorporates the turmoil that the child and family face from the diagnosis to the acceptance of the illness. It offers our experiences dealing with countless doctors and school personnel and our journey to learning and understanding our children's educational rights in the US. Thousands have read our book and the feedback has been heartwarming. We met our goal, which was to ease a few of the burdens facing parents and most of all to let them know that they are not alone. The book took 2 years to write and one year to publish. In our home it became known simply as THE BOOK, and my kids were jealous of it. To say at times they hated it probably isn't far off. But they also believed in it, and wanted it finished and available to families.

As it hit the stands in 99 so did our newsletter. We had so enjoyed meeting and touching the lives of so many in the world of CFS that we decided to continue our efforts in the form of the newsletter. Our efforts were rewarded ten fold. You, our readers, have offered support and encouragement to us as much as we have to you. When times were hard in my home and I shared my family's stories with you, you wrote to me with reassurance, with compassion and with love. Your letters kept me going and kept me feeling connected. I have not felt alone in our journey as so many have reached out along the way to offer a hand to hold or a shoulder to lean on. Most of my contacts have been on line, though I have had the good fortune to meet some of you at conferences or on your treks to the Lyndonville Clinic. What I have learned is that there are blessings with this illness. And my 11 year old never stops reminding me of this fact. There are blessings if we will only take the time to stop and see and feel them. The people that we have both been fortunate enough to meet (in person or on line) are some of the kindest most giving people in the world. They have given so lovingly and selfishly to enrich our days and fill our hearts. Without CFS, we would never have known you, and for that we are grateful. The roses in our backyard, the warmth of the sun on a cool day, the appreciation of a day with energy, the kiss of a llama, the affection of a dog, the joy of a gift from a lady we have never met, these are gifts we would have never known without CFS. We have truly learned to stop and smell the roses in our lives. And we thank you all for helping us along the way. You helped us to realize that we were not alone either.

This past year began with a week's stay in the hospital for our daughter. Since that visit we have come to understand what many of you already understood - that there are a lot of doctors out there who do not have a clue about this illness, and they do not mind taking up your time telling you. We have met a wonderful doctor who taught us the gentle art of self-hypnosis, which can be very useful in dealing with many of the pains such as headaches, and also to relax oneself to get to sleep after a stressful day of dealing with the illness. We learned the art of distraction from finding new animals and activities to become involved in to remind us that if you look hard enough there are things these children can do, and people who will go out of their way to make it work for them. We learned there are doctors who are truly willing to treat the pain with narcotics when necessary and do not want to quit until relief is found. My daughter found a new group on line that she can connect to with children her age with POTS and it has been tremendous. We have learned to never be afraid to reach out and ask for help from someone new. We have learned that when one door closes a new one opens. We have learned patience, we have learned to pray, and we have learned it is a better day when we can remember there are things to be grateful for and to thank God for sharing them with us.

To each one of you the Robinson's wish the very best. Our blessings go out to you and to your family. The newsletter may be taking a breather, but we are still here, still checking our mail, and still hoping to connect on a more informal venue. God Bless you all!

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