“I love the Progressive Insurance commercials where Dr. Rick advises young homeowners on how ‘not to become like their parents.’ I shouldn’t, because I am the parent, but I do.
“There is one in particular: a young homeowner, who looks a lot like me, proudly holds up a ‘website’ he’s printed from his computer. Dr. Rick coolly replies, ‘We don’t need to print the internet.’
“Well, thank goodness my sister A. does! Because if she hadn’t, then we might not have ever been able to recover Melanie’s blog and several entries she posted from 2015 to 2019.
“She called her blog, domesticityblissity. My sister had both a sense of humor and irony.
“Starting out, and I don’t mean anything derogatory by using this term, hers was a ‘mom blog’. Melanie wrote about the ups and downs of raising her children, who were teenagers by then, chronicled some of their funny and poignant stories, and reflected on how she and J. were adapting to their evolving roles as parents.
“But in 2018, her blog took a hard turn.
“I will read one post post in its entirety because it marks that point. Until then, she had kept mostly quiet about her battle with von Hippel-Lindau Disease, but here she makes clear here in no uncertain terms just how difficult the struggle had become and details the many areas of her life that had taken a turn for the worse.
“From March 30, 2018, ‘Coming out of the chronically ill closet’:
After barely beginning to experiment with sharing a little about my life through this format in 2015, everything came to a screeching halt for me. Last I checked, nearly three years ago, I was describing myself as a mother of three teenagers and sharing some of their more riveting high school antics. Fast forward to present day, and life looks very different for me. Now two are juniors in college 1300 miles away from home, and the youngest is a freshman at a much closer, in-state university. Everything is what one might expect with them in those stages of life, but for me, not so much.
“The very summer after my two oldest, twins, graduated from high school and began their college adventures, I simply and without much notice, fell apart. One might expect a mom to grieve and have lifestyle changes when the kids fly the coop, but this was more than that. While I will not go into a list of symptoms at this time, I will say that the following years turned into a progressively downhill rat race of hospital stays, tests, doctor visits, tears, disappointments, falls, broken bones, prayers, physical therapy, more bruises, and trying things I would have never dreamt of trying, all in hopes of feeling better and reclaiming my normal.
“Because my family has relocated four times since my marriage in 1994, it is very easy to “see” the different stages of life as they’ve progressed and divide life into boxes:
- Newlyweds, husband medical school, no kids, me working
- Residency, long work hours, first home, babies, very tired
- Husband’s first job, preschool/young elementary kids, fluctuating weight, trying to figure out what happened to pre-kid fun, looks, and youth
- More settled in career, getting our social groove back, late elementary-middle school kids, fitness revitalized
- New job for husband, middle to high school kids, soccer, ballet, volunteer work, BUSY and expensive
- Empty nesters, hard-working husband, health decline for me, faith challenged, college kids, even more expenses
“I could not be happier for my kids and husband and their knack for doing life well. I do consider it a true blessing and am very grateful for the many years and many words–lots of words–talking, advising, instructing, disciplining, training.
“It would be an understatement to say I took my job of parenting extremely seriously!
“I do see the timing allowed me the many years of good health, time, energy, and resources to devote to the children in hopes they would become responsible, kind, and compassionate, independent thinkers.
“I can also see the timing is such that I can focus on myself, how to best navigate my newly acquired disabilities, and adapting to my new normal.
“As I grouped the phases of my life into different categories, I have also had the honor of knowing different groups of people at each phase, many with whom I am now reacquainted because of that great invention of social media.
“It is human nature to put one’s best foot forward on social media. Of course, it is great to think friends of days gone by believe life is great and successful, youthfulness abounds, and graying hair, wrinkles and illness are nonexistent. I confess I struggle with these issues of vanity, and especially since being dealt the cards of a degenerative neurological disease.
“I have also decided now is the time to come out of the chronically ill closet, and not be afraid of showing that I use a wheelchair and a walker all. the. time. because I cannot stand or move without falling over. I can no longer, without great effort, put on makeup, fix my hair, do household chores, fix meals, shop in stores, speak without slurring, or write on paper. I can still attempt to do some version of all of those things, if I pace myself, rest, and have much lower expectations compared to years past.
“Knowledge is freedom, so here is me, now, in all my glory and brokenness. My wish is that my world can grow to be just a little bit bigger, and I can obtain a new level of authenticity. So, let us all carry on now and do our best one step at a time.”
“In February 2021, my youngest son and his wife married in Birmingham, Alabama. It was during a Covid peak, and most of our family were not able to travel and attend. But Melanie, J., and Ethan were there, representing.
“At one point during the reception, Melanie and I were sitting alone at a table. She leaned over and whispered in my ear, ‘I think people are watching me.’
“She looked beautiful that night and was dressed to the nines, but she was concerned her battle with cancer and the site of her wheelchair were attracting the wrong kind of attention. There it was, her ‘struggle with issues of vanity.’
“I replied, ‘Well, of course people are watching you! You look like a movie star, and they think you are somebody! You look mahvelous dahling!’
“Then, I leaned over and kissed her on the cheek.
“On July 17, 2019, Melanie posted her last entry, ‘Uncertainty’.
“She reflected on how hard it is to ‘let go’ as a parent as teenagers become young adults. At the end, she wrote these words, which today, seem both prophetic and chilling:
My parental duty now is to be supportive, to be available, to be still, and to wait…all while praying for health, praying for safety, praying for direction, and praying for purpose for each person in my family, as well as for myself.
...because someday I know I will look back and not even be able to believe what was coming next…”
“Indeed, she would not have believed the tragedy of Ethan’s horrible surgical outcome which was to come 2 years later. It is a grace of God that we cannot see into the future.
“Let me be perfectly clear: in her final days, Melanie Kay Brown Gentry gave her last full measure of life and love to Ethan in an attempt to maximize his chances for recovery and some semblance of a normal life. She found her ‘purpose’.
“Melanie and J. together composed a formidable team that broke through layers of red tape and bureaucracy and ensured that Ethan had his best shot.
“Melanie Kay Brown Gentry was a colorful flower that appeared out of nowhere in the desert. She bloomed for a time, and we all beheld her wonder. Then she faded away like all flowers and grasses of the field—like all of us—will do.
“Melanie Kay Brown Gentry was a shooting star, a comet that appeared on the eastern horizon and arced overhead, sparking and flaring. We looked up and beheld her wonder, but then she disappeared in the west, far too soon.
“Melanie Kay Brown Gentry was a wrinkle in space and time. She caused a commotion. She stirred the pot, and the ripples of her life will emanate for generations to come.
“Thank you all for being with us today and helping us offer up ‘a broken hallelujah’ for Melanie’s life.
“‘The Lord bless you
and keep you;
the Lord make his face shine on you
and be gracious to you;
the Lord turn his face toward you
and give you peace.’
“‘Let us go in peace, to love and serve the Lord.'” (Thanks be to God)