Many of you have already met my granddaughter with my postings on Facebook. Others of you have probably heard my wife and I speak of my daughter Sarah, her husband Lonnie, son Lonnie III and daughter Savannah. They are our ‘Arizona family,” living about 45 minutes outside of Tucson.
Savannah just celebrated her 3rd birthday and is a vibrant, loving child, whom Susan and I love, adore and miss. Until the pandemic greeted us early this year, we were able to go to Arizona and see our Arizona family every two months or so.
We have not been there since February. But now under current improved travel conditions, we would be able to “risk” going to visit our Sarah and family. We do have one additional hesitation: Savannah has Rett Syndrome.
Rett Syndrome is caused by an extremely rare genetic mutation affecting how the brain communicates with the body. While this disorder provides many serious challenges, we know Savannah is cognitively and mentally intact. And that of course is very good news.
The challenges come in a variety of ways, chief among them are communication and physical limitations she deals with. For example, it is nearly impossible for her to speak, and she has limited use of dexterity with her hands. She cannot stand by herself and/or walk. She has low muscle tone, which will be an ongoing challenge. To communicate, she is learning to use an Eye Communicator, which uses the same principle as the device used by Stephen Hawking.
As I said earlier, with those challenges, Savannah is a vibrant, loving child; in fact, in my view, she has a jubilant personality. She loves to tease and play little jokes. She is asked to do one thing, but does another…..and then she giggles. She teases by doing the opposite of asked…..followed with a laugh. Her eyes sparkle when making a joke and laughs when we catch on. My wife was in Arizona last year and while having breakfast with Sarah and Savannah, Savannah finished eating, threw up her arms and suddenly said, “All Done” — the very first words Susan ever heard Savannah say. Small victories mean a great deal and bring a tear.
I must let you know that her parents, Lonnie and Sarah, are noble heroes in all of this. They have thoroughly engaged to work with and find ways, with their love and devotion, to work through the challenges they face. Another hero in this is 5-year-old Lonnie III. He brings patience and joy to all. He plays with Savannah and understands the challenges and helps as he can. Sarah is a stay-at- home Mom (Lonnie works full time), and she has worked tirelessly to bring every opportunity to Savannah. Savannah has seen neurologists in Tucson, San Diego and next month in Denver. In addition, Savannah has weekly therapies, along with continuing appointments with at least eight specialists in Tucson ranging from cardiologist, to audiologists, to a communication specialist to a geneticist. Sarah and Lonnie work with Savannah on homework assignments from the therapists, and we see improvement in many areas.
October happens to be National Rett Syndrome Awareness Month. The disabling neurological disorder is not widely known (fewer than 1,000 U.S. cases per year) but research is well underway to find answers. Because the disease is not widely known, to this point there are not federal grants and/or assistance for research. While a couple of Rett Foundations are in place, all funding comes from private sources. Sarah has been wonderfully active spreading the word regionally and nationally with the Rett message. She and Savannah were recently featured in a piece highlighting the realities of Rett children and families. Sarah’s conviction for Savannah’s success inspires us daily.
Learning about Rett Syndrome has been a challenging, sometimes emotional process. Certainly our “Arizona family” deals with daily challenges and successes. Sarah and Lonnie have grown stronger and braver from this special child to love. As mentioned earlier, Susan and I have stayed away because of the pandemic, and Sarah and Lonnie have as best they can “built” a bubble around Savannah to protect her.
We, of course, have Skype calls, emails and Facebook to stay in close contact, but we miss our “usual” every-two-month contacts of Savannah’s kisses, smiles, laughter, boundless energy and happiness, which any 3-year-old brings to grandparents.
This writing has taken a long while for me to finish because of the personal nature of it all. But I needed to share this experience
— By Dave Earling
Former Edmonds Mayor Dave Earling is a music educator and business owner. He and his wife Susan have three adult children and four grandchildren.