When the twins were 4 years old, we took them to StoryLand, NH for their birthday. Eric was nervous about staying in a hotel for the first time, so we told him he would be staying at Cinderella’s House! Eric loves Cinderella, and so he was happy about that. It was this family trip when Eric first relaxed in a hotel hot tub. He called the tub —appropriately enough— a “Cinderella Pool.” After a dip in the hot tub, we were amazed at how relaxed Eric’s muscles were and how well he slept that night.
Eric has never stopped talking about the Cinderella Pool and so for his 5th birthday we took him to a local hotel just to use the hot tub. Again we noticed the positive effects of the water therapy. Eric has been to a hotel several times over the years, but of course going to a hotel can become expensive therapy!
This year, Eric was granted a wish from the StarLight Children’s Foundation. When he was interviewed by Starlight, Eric said without hesitation “I want a Cinderella Pool, please.” In the spirit of Cinderella’s Fairy Godmother and with the help of the Starlight Foundation and a generous donation from ThermoSpas, Eric wish has come true! On Friday May 3rd, Eric’s very own Cinderella Pool was delivered to his back yard.
New England Cable News
April 21, 2002
We would like to be the first to congratulate you on this very auspicious event. How many have said, I will do this great thing, yet they never accomplish any small, not to say great thing. It is not for us to say who among us will be the ones who finish what they start. Who can say that anything will ever be accomplished. Yet you, the venerable Bear, have completed something, and not just a small thing, a very great thing. A thing that cannot be put easily into words. Yes, there were naysayers and nattering nabobs of negativity. But, you persevered and in persevering you have done a great thing. Not a small thing, like opening a coconut, but a very large thing; finishing a large book.
And how does one go about finishing a book? Well, it is not easy. From brain to finger to keyboard, I would think. Sitting up late at night and not watching television, I would think. Sitting bony butted at the computer day after day, hour after hour, I would think. This is the way, I would think.
But many have attempted such a thing, and few have completed this thing called writing a book. For what else can one call it? It is not singing, no. It is not dancing, no. It is writing a book and it is now done.
Now he is called The Novelist and he will be designated The Novelist in the house and while in the woods or any other place he may choose, and it will be his choice to go or to stand or to sit, if he so chooses.
This book shall be bound with hemp and placed on recycled paper and the ink shall be soy based and no animal will be tested in order to look at or read the book.
The Novelist, the man formerly known as Bear, shall be allowed–on one or two occasions designated as such–to read from his book short passages, and the guests shall be encouraged to listen and not smile or laugh.
This day, the 21st day of April, shall be known as “Novel Finishing Day,” and shall not be called by any other name or date. Novel Finishing Day will now be a day that people are encouraged to finish at least one thing, so it will be a good day.
You Will Dream New Dreams, edited by Stanley D. Klein, Ph.D. and Kim Schive, published by Kensington Publishing Corp.
Book Review by Richard C. Bissell
Most parents of children with special needs experience periods of obsession over what might have been. They find themselves asking, “what would my child be like if not for…” Many times we struggle to find the good, to find the positive in what life has thrown at us. Wouldn’t it be nice to interact with other families who have “been there,” faced many of the same things that we face, and are willing to share their pain, their dreams, the challenges and their successes with us?
In reading “You Will Dream New Dreams,” inspiring, personal stories written by parents of children with special needs, you can meet some of these people. You can grieve with them, laugh with them, and share in some of their successes. This anthology, edited by Dr. Stanley Klein and Kim Schive, is a revealing glimpse into a world that not very many people are aware of. These stories are real, they are inspiring and they are compassionate. You may not agree with all the choices that these families have made, but you will gain some understanding of what they face. Examine the case of Laura who decides to “place” her child after stipulating that “the most unnatural, abnormal, course of action, would be to place him.” This is not a choice I would make and probably not a choice many of us would make, but her story is certainly one that can be read with compassion.
Not that we spend much of our time criticizing others. In fact, it is judging ourselves that we parents do best. For an interesting outlook on guilt, read how Janice was able to “skip the guilt,” and how Diane was able to “turn obstacles into triumphs.” Many of us can empathize with Diane when she speaks of being “tired beyond belief” and how “friends and family can both strengthen and strain you.” It is easy to feel her pain when she speaks of desiring only to rock, nurse, and take walks with her new baby. Instead she is faced with days of doctor appointments, physical therapies, and medicine administration. Something many of us can relate to. We can also cheer for her and her family as they discover emotional healing and “splendid triumph.”
I found this book to be a very real portrayal of the challenges that we as parents all face when raising children with disabilities. There are not many easy days, but there are many joyful ones. The books main attraction is that is gives us a window into some of the different ways some parents cope and survive during tough times and how many of them are able to dream new dreams even as previous dreams vanish.
None of these stories are very long, so they can be read while waiting at the doctor’s office, sitting through a therapy session or running a tube feeding. Each one of them is from the heart, and they each have a unique message. Most of them are very uplifting, even as they remain true to the challenges of raising special needs children. I believe that Trena sums it up nicely when speaking as an older parent looking back at the challenges of raising a child with disabilities: “To comprehend it . . . is perplexing. To walk it . . . is horrendous. To survive it . . . is a test to the human spirit, a lesson in perseverance, a trip into the twilight zone, and a miracle! To look back on it is awesome!”
Richard C. Bissell is a registered nurse and the father of three children with disabilities. he lives in Grafton with his wife Cindy and sons Eric, Aaron and Anthony.
Status Instrument (PTHSI)
American Academy of Otolaryngology-Head and Neck Surgery Foundation, Inc., March 2002 – Volume 126 – Number 3
Christopher J. Hartnick, MD
Barbara K. Giambra, RN, MS, PNP
Cynthia Bissell, RN
Cynthia M. Fitton, RN, MSN, CPNP
Robin T. Cotton, MD
Susan K. Parsons, MD, MRP
Objective: We sought to describe the development and final testing of an instrument designed to evaluate the impact of tracheotomy on the health-related quality of life of affected families in whom a child has had a tracheotomy (the Pediatric Tracheotomy Health Status Instrument [PTHSI]).
Study Design: This cross-sectional study designed to analyze a disease-specific health status instrument to establish validity and reliability.
Results: The PTHSI was initially pilot tested in 130 families during a 3-month period from September through November 2000. After initial analysis and revision, from January 2001 through July 2001, 154 different families completed the revised instrument. The overall Cronbach’s coefficient for the instrument was 0.91, with domain-specific coefficients ranging from 0.66 for physical symptoms to 0.87 for caregiver stress and coping. Specific criterion validity analysis produced a Pearson correlation coefficient of 0.8 (P < 0.0001). Construct validity testing via Wilcoxon matched sum testing suggested statistically significant differences between subpopulations (P < 0.001). Conclusion: After initial testing and revision of the PTHSI, final instrument administration and analysis reveal the instrument to be valid and reliable. Future studies are planned to evaluate its responsiveness in longitudinal application.