Got a surprise call from a blogging friend today. Jaclyn and I met months ago in Cat Rambo’s “Blogging 101” class at Bellevue College. I got good vibes from Jaclyn while in class. And she’s every bit as nice as I thought she would be.
During our conversation today, she reminded me what her life is like on a daily basis. For 18 years Jaclyn has been caretaker for her only child. While this doesn’t seem an unusual situation from that of other moms, her situation is unique in that her daughter has a rare disease known as Galactosemia, a milk sugar disorder.
Galactosemia is a rare congenital disorder which affects the body’s inability to convert galactose into glucose. Galactose is a type of sugar, which is a breakdown product of lactose. Lactose is found in milk and milk products, including breast milk. Given that the galactose can not be broken down, it builds up in the body and acts as a poison that can cause serious damage to it‘s carrier(“galactosemia“). “As milk is important to a baby’s diet, early diagnosis is essential to avoid lifelong problems from this potentially fatal disorder.”
The first trace of information that was brought to light about galactosemia was in 1908 by Von Ruess. He composed an article of his findings in an infant with many of the symptoms we now relate to galactosemia. This work has widely been accepted by scientists as the first reported case of galactosemia. However, at this time the diagnosis of galactosemia was not yet possible. It would be nine years before a similar diagnosis of galactosuria was largely accepted by scientists as a hereditary disorder.
At the time Jaclyn’s daughter was born, galactosemia was not yet within the mainstream of medical knowledge. So doctors failed to correctly diagnose her digestive problems. Meanwhile the disease took its toll on the youngster’s body, leaving her permanently handicapped, mentally and physically. Having recently turned 18, the young woman reads at the level of a 4th grader.
Needless to say Jaclyn has been at the forefront of fighting her daughter’s fight to make the most of her life, such as it is. Where schools were not willing to pursue academics at a more challenging level, consigning her daughter to classes for children with special needs, Jaclyn decided to home school instead. With the help of other adults, her daughter is experiencing as full a life as she can. Their assistance also allows my friend some much-needed respite from her 24/7 role as caretaker.
Surprisingly, or maybe not, I never find anything in my friend’s voice to suggest that she is pained to be saddled with her daughter’s predicament. Jaclyn sounds like other moms I know who love their children, and do what needs to be done for them. Jaclyn is always upbeat, never belaboring the fact that her child is, in fact, unlike those now capable of venturing forth to make their own way in the world.
When Jaclyn calls it’s usually to ask how I’m faring with my blog. The last time she phoned it was to suggest an online site where I might want to self-publish. Today she recalled that I’d mentioned that my writing skills were honed when I had served as a paralegal for TWA in NYC. She wondered if I had the title of the book which had been instrumental in my learning to write. I replied that I learned on the job. I was enrolled in classes at night to obtain a paralegal certificate, a condition for the job to which I had already been promoted. So writing legal briefs for the attorneys with whom I worked during the day, quickly instilled me with the skills I still possess today. I learned to organize my thoughts on paper, and offer support for my assertions. Blogging has enabled me to regain my skills as a writer, after a 24-year hiatus.
When I asked with what she was currently involved, Jaclyn explained that she’s trying to secure social security benefits, however meagre, for her adult daughter. We both agreed that government bureaucracy can be mind-boggling. Because galactosemia is unfamiliar to most, she has found it daunting trying to convince bureaucrats of her daughter’s disability which has essentially robbed her of an independent life.
Ending the phone call with her usual laughter, Jaclyn admitted to signing up for Cat Rambo’s class on the writing of fantasy stories. My friend wants to take a breather from reality, and escape to the land of fantasy. God knows she deserves to enjoy a little make-believe.
for a mom whose life is her daughter’s, huge hugs…hugmamma.
Without child for 16 years, we’ve counted our blessings every day since her miracle birth. Because of her we know the joy of celebrating holidays, especially Mother’s Day and Father’s Day. Because of her we know what it means to love without conditions, and to sacrifice without expectations. Because of her we’ve come to accept who we are, with our own idiosyncrasies and human failings. And because of her, my husband and I have found a deeper love for one another.
hugmamma's MIND, BODY and SOUL 