22q11 deletion syndrome, dialysis
Sometimes people ask me how I made it through the years of raising a son with 22q.11 deletion, with all the uncertainty, anxiety, and fear. I’ll tell you…journaling For some people, journaling is an alternate means of centering, like meditation, labyrinths, yoga, music, mandalas, walking in nature, and art. For me it was a way to pray. It’s not for […]
» Read moreThere are always unknowns in your family’s future as is true in every family’s future, but there are a few guarantees. You will love your child more than you ever believed was possible. Love for your child will change who you are and how you behave in the world. Even if you start out shy and retiring, you will learn […]
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Why “Chance at Life”? People occasionally ask why I wrote a novel about a dialysis unit. I wrote it because thousands of people daily drive past innocuous dialysis units, oblivious to the dramas occurring on the other side of those doors. I wrote “Chance at Life” to give the reader a peak behind the doors. Patients from every social stratum, […]
» Read moreI have another book coming out entitled, Chance at Life. It’s novel about the regulars in a dialysis unit and what life is like for people living on borrowed time as they peer over the abyss. Advisors say I need a blog. So I joined Substack. It’s kind of scary because I’m not accustomed to putting my thoughts out there […]
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Hanging up my stethoscope feels like losing a limb. I’ve been a nurse, a nurse practitioner, and a nursing instructor for all of my adult life. Over the years I have listened to thousands of patient’s stories, listened to their hearts, their blood vessels, their bowels, and their lungs. I have touched patients, held their hands, hugged them, made them […]
» Read moreCrisis This Covid-19 crisis moment will go down in history books. Life on this earth is changing before our eyes. An invisible virus brought our world to a standstill. We hide from the virus as it hides from us. In Chinese, the word for crisis consists of 2 characters. The first character means danger, the second character means opportunity. This time […]
» Read moreSometimes parents of disabled children are too busy caring for their children to pay attention to politics. However, politics matters for the future well-being of our children. Will the person we elect protect the rights of the weakest and most vulnerable among us? Are the needs of the disabled for medical care, food, and housing part of the political discussion? It should be. There are over fifty-six […]
» Read moreFor those of you who have wanted to read the book but didn’t have the time, (or the money),Yearning for Normal was published as an audiobook on September 23, 2016. You can now listen to it whenever you like. It is available on Amazon and Audible.com. You can download it for free from Amazon.
» Read more“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. It turns problems into gifts, failures into successes, the unexpected into perfect timing, and mistakes […]
» Read more‘Chronic sorrow’ is the term used to describe the chronic hidden sorrow that parents of a child with a disability live with on a day-to-day basis. Simon Olshansky, a counselor to parents of handicapped children, coined the term in 1962.[1] Parents often do not recognize this sorrow, nor do their friends, relatives, or the professionals supporting them. Chronic sorrow does […]
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Camps are good for children, but parents also need camp. Parents of children with 22q.11 Deletion need…meditation camp to help deal with the stresses in raising their child. Mike, my son is grown now, but I remember the relentless stress. Chronic stress is dangerous and can result in a multitude of health problems. There were long hospital days, unexplained fevers, difficulty breathing, failure to thrive, heart problems, seizures, […]
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Ohio Nurse Practitioners are mobilizing to make Ohio the 21st state with Full Practice Authority (FPA). This means that Ohio NPs will be able to practice independently, to the full extent of their education, training and certification. No longer will they have to prescribe according to the Ohio Formulary, nor will APRNS be required to be in a collaborative agreement […]
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As parents we often struggled with what were appropriate expectations for our son with 22q.11 Deletion Syndrome. Expectations are a double-edged sword. The problem with expectations for a child with a disability, is that it is difficult to find the right balance between motivating your child to achieve the best they can, and setting too high expectations that can lead […]
» Read moreOne of the problems with having a child with 22q.11 Deletion syndrome (a.k.a DiGeorge Syndrome, or Velocardiofacial syndrome) is that even though it is considered to be as common as Down syndrome, very few people have heard of it. This includes the professionals who encounter these individuals on a daily basis in their professional lives: doctors, nurses, special education teachers, […]
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