Family Life
Perspectives
Family Matters: Seeing with the Heartby Erin
I spent years learning to speak French, beginning in elementary school in England, and ending in my college years to fill a language requirement. Never having had the opportunity to use it, however, I now remember little more than basic conversational phrases, many of which would offend native speakers if I dared try to speak them with my French American accent. Ironically, the most useful piece of information I learned from my years of instruction has nothing to do with the spoken language, but is instead a sentiment expressed in a book, Antoine de Saint-Exupery's Le Petit Prince, read during class:
"On ne voit bien qu'avec le coeur.
L'essentiel est invisible pour les yeux."
or
"We only see clearly with our hearts. What matters is invisible to the eye."
As a parent of a child
with complex medical needs, this sentiment is very powerful. When
brought to mind, it is a strong reminder of what is truly important
during a challenging journey. or
"We only see clearly with our hearts. What matters is invisible to the eye."
Focus: Family Life
Beating the Odds: Making Your Marriage Work
We will never forget the
beautiful day our son was born. It was one of the happiest, most
amazing days of our lives, as we became parents for the first time and
saw our son enter the world! It was also one of the scariest and most
terrifying days we ever experienced, as we watched doctors rush him from
the birthing room to the NICU, purple and not breathing.
That same unbelievable day, a social worker walked into our
room and told us that our marriage was doomed to fail because our son
had been born with very serious and complex needs. That is a moment I
don't think either of us will ever forget. We made a choice that day,
and every day since, to beat the odds by being vigilant about our
relationship.
Raising Children Who Don't Eat in a Food-Centered World
by Sharon Gauld
Both my children have little to no stomach motility and poor esophageal and colonic motility. My oldest, at five, will eat cheese sticks and crackers. She also enjoys butter and other condiments. My two-year-old loudly proclaims his dislike of food but can be persuaded to have canned peaches or pears and the odd bite of apple.
(Read More)
Raising Healthy, Happy Siblings
by Shannon Gonsalves
Our oldest daughter Hannah spent almost two and a half years as an only child. It was just the three of us going to the zoo, beach, park, putting together puzzles, coloring, or reading stories. We spent a lot of time each day just simply enjoying her happy, bubbly personality.
We began preparing her for the addition of a baby brother, and even moved her into her very own pink bedroom that she helped us set up. Following the advice of professionals, we did this early on in the pregnancy and didn't use her brother as the reason for having to give up her crib. Everything was progressing quite well.
Babies in general require more time and care than an older child. Rationally, we knew this and began the process of preparing Hannah. Nothing, however, could have prepared any of us for the premature birth of Hannah's brother, Caleb, and the subsequent care that came with caring for a preemie with health issues.
(Read More)by Shannon Gonsalves
Our oldest daughter Hannah spent almost two and a half years as an only child. It was just the three of us going to the zoo, beach, park, putting together puzzles, coloring, or reading stories. We spent a lot of time each day just simply enjoying her happy, bubbly personality.
We began preparing her for the addition of a baby brother, and even moved her into her very own pink bedroom that she helped us set up. Following the advice of professionals, we did this early on in the pregnancy and didn't use her brother as the reason for having to give up her crib. Everything was progressing quite well.
Babies in general require more time and care than an older child. Rationally, we knew this and began the process of preparing Hannah. Nothing, however, could have prepared any of us for the premature birth of Hannah's brother, Caleb, and the subsequent care that came with caring for a preemie with health issues.
Specialty Article
While children routinely get many labs done at a time, you are probably aware that it is more important to keep track of certain ones than others. For example, my daughter routinely gets a Complete Blood Count (CBC) and Complete Metabolic Panel (CMP) at least every three months. While the total number of tests in these two panels spans a full page, we only keep track of the 16 most important parameters. In her case, these include liver and kidney function tests, red and white counts, hemoglobin, hematocrit, platelets, retic count, ferritin, CO2, and albumin.
Feature Article
We are fortunate to have good private insurance as well as a secondary Medicaid waiver for our daughter with special needs. Most people would think that having two insurances would mean that my daughter's medical needs would be met sufficiently. As those of us with children who are medically complex know very well, that is simply not the case.
There are many, many hidden financial costs of parenting a child with special needs, and most of these would not even cross the minds of the average person or politician. These include lost work hours, paying out-of-pocket for denied items and services, and needing expensive non-covered items, to name just a few.