In talking to probably the world's most knowledgeable Doctor on this Bardet-Biedl Syndrome, Dr. Philip Beales, who is based in London, we have discovered the amazing fact that on the 9th day of conception, Lucy's little hair like strands attached to her cells (and all our cells) called cilia uniformly started waving like octopus tentacles to the left. Most of us have cilia that wave to the right, but for some reason her genetically generated messages directed them to start waving to the left…which means that her internal organs are all placed perfectly on her left side instead of the right, which is unusual, even for this syndrome!
There were other incredible manifestations of this rare genetic disease which required a mutant gene on both sides of the family…so rare that we would have to go back many generations on each side of the family to find it! But there they were…that rare genetic combination…telling Lucy's body to make an extra toe, telling her optic nerves that they would degenerate and create something called retinitis pigmentosa which would render her legally blind sometime between the ages of 9 and 15. Not only that, those cilia registered an order to slow down her metabolism and to turn most of her "fuel" into fat. We're still trying to figure out how those other "orders" will manifest themselves in the future but they will likely affect her kidneys and possibly her heart.
Just like everyone who is diagnosed with any malady, as soon as you announce that you have blown your ACL or have broken an arm, an army of people show up to commiserate and give advice. We have been amazed to realize that this also applies to syndromes…even rare syndromes. Parents have come out of the woodwork to tell us about the myriads of syndromes they are dealing with, many who have children who are affected in much more difficult ways and with much more dire results.
Again, all of this has led us to realize what amazing machines our bodies are! With all the intricacies and co-dependence each body system has on all the other systems, it is truly a miracle that any of us are normal! Or are any of us normal? We all have issues. Some are just more evident than others, right?
As the Thanksgiving season rolls around, we who know Lucy have formed an I Love Lucy Club and are ever more grateful for this adorable little individual who is such a joy to her parents, siblings, grandparents and enormous gaggle of cousins. Life just wouldn't be as rich…or as difficult (which is what we need to grow) without Lucy. She accelerates the things we need to learn on this earth…love, compassion, getting out of our comfort zone, patience, empathy and problem-solving techniques!
We are encouraged by ongoing research to slow and/or alter the blindness issues and to deal with obesity in children. Lucy's mom Shawni Pothier and her grandmother Linda Eyre have released a new book for mothers which was published just as Lucy was diagnosed called A Mother's Book of Secrets which features loveable Lucy on the cover. They are donating all royalties for the book to research on Lucy's issues.
If you are looking for a great gift idea for your mother, sister, daughter or friend for Christmas that also contributes to a great cause or need an idea for a for a great stimulating Book Club book in the coming year purchasing this book will certainly help Lucy's cause! You'll enjoy Shawni's spectacular family photography as you learn how to be a better mother with 40 little secrets from a seasoned mother of 9 grown children and a "down and dirty" mother with five young children. See the light in the trenches of motherhood as you learn the importance of taking care of yourself, finding your balance and getting rid of the guilt. Learn how to give your family a sense of purpose through creating a short Family Mission Statement and how to create great memories through traditions. You'll find myriads of fun ideas that include establishing family laws, teaching kids how to work hard and deal with money as well as the joy of service. There are also methods for teaching your kids to work out their arguments without your intervention, how to have fun with the BIG TALK about sex at age 8 and how to help your children make good choices in advance. By buying this book you can join the "I Love Lucy Club" as you also give this gift of inspiration to the Mothers in your life or the Mother in YOU!
Our publisher has joined our cause and is offering a 20% discount for online orders. You can order immediately by clicking here. During this season of gratitude, we are especially grateful for our own cilia that somehow worked as it should and for those of you who have discovered that the greatest gratitude of all should go to those who serve in the world's greatest cause… Motherhood!
Linda Eyre is the mother of nine, grandmother of 18. Her mission statement includes empowering mothers to be "Empowerers". As a co-founder of home-based Joy Schools 30 years ago, she has since authored or co-authored with her husband and daughters many books on parenting and especially the joys and trials of Motherhood...most remembered of which is: I Didn't Plan to be a Witch. She and her husband are worldwide speakers and advocates for the family.