A Story of a Board Member
I’m sitting here today enjoying my Mango Pomegranate Green Tea at SweetWaters Cafe in McKinney, Texas. It’s right here at the border of McKinney and Frisco, depending on what side of Custer Rd you’re on. (This is the McKinney side)
I just returned from Indiana, and as I stood in line for my tea, I surprisingly turned around to find the Mayor and his First Lady of the Crepe Myrtle Festival, who also arrange for the monthly art here at SweetWaters.
Today was a special day for me, as I’ve been here enough times to enjoy my first drink from the cafe that is a reward for my loyalty here.
As I stood in line, I met Elizabeth and Fred, who were dressed in their Mayor and First Lady gear, right out of a perfectly orchestrated play set in a quaint village. I laughed, as I have a love for all things theater, but did resist breaking out into song.
I want to give thanks to all who were able to provide support on #NTXGD (North Texas Giving Day), and also to those who were able to support Blue Caboose Children’s Fund (#BCCF) specifically.
Blue Caboose for Cystic Fibrosis, #BCCF, now known as Blue Caboose Children’s Fund, provides emotional, concrete, and parental support to families living with CF and their siblings. We provide dinners to families (virtually, with gift cards during the pandemic, and together, for emotional support, when the risks are lower).
We provide Christmas gifts to CF kids and their siblings, emotional support during hospital stays by giving practical items like sleep masks and water bottles which help caregivers get some rest.
We also have a mom’s retreat, where moms get together with Blue Caboose staff and board members, to spend some time doing self care, education about the latest trends in CF treatment, and have downtime together to make friendships. These friendships, from my observation, are lasting and really important to the parents of kids who have CF.
The goals of Blue Caboose are to help families with CF LIVE by giving small, yet important items and support to reduce stressors in CF families.
A new program we have, Third Thursdays, sponsored among others by Vertex which is a pharmaceutical company who makes one of the new medications working wonders for kids with CF, provides virtual support by monthly meetings where participants learn about traveling with medications, transitioning from school to school, learning to support the caregivers and all people who care and provide support for kids with CF and their siblings, among others.
We currently hold these on the Third Thursday of each month, at 7pm central. We utilize Zoom, so participants can interact with each other during the calls.
While I was working at Children’s Bureau, Inc, in Indiana, I was trained-to-train others by The National Institute for Strengthening Families. The training consists of Five Protective Factors, which encourages us to increase successes and decrease stressors of caregivers to children by focusing on resiliencies.
These resiliencies include providing emotional and concrete supports, acknowledging and supporting what parents do well, parental and educational support, and developmental awareness for families who may experience stress.
When I saw the ad in McKinney Cares for a Board Member, I acted on it.
I remember, as an 8 year old sister to my 10 year old sister Missy, our long car ride from Tipton, Indiana to Riley Children’s Hospital in Indianapolis, approximately 50 miles away.
She’d been acting differently; urinating frequently, losing 15 lbs as a 10 year old, and eating candy much more often than usual.
Back then (in the late 70’s early 80’s), the signs and indicators were much less commonly known that what she was experiencing were very classic symptoms of T1D, then known as Juvenile Diabetes.
I remember her being slow as molasses; as lethargy is also a key indicator of T1D.
Since that day in 1978, I have become an Aunt to Eli with T1D (starting at 6 years old), and cousin to Sarah, whose T1D was diagnosed less than one year ago at nearly 24 years of age. I am also a cousin to Rick, who, though genetically not related to me, also has T1D and is the son of my aunt.
T1D affects the pancreas, and has some real similarities to CF.
In college, I was able to spend 3 years at Indiana University working with Dr. Alexandra Quittner and her research team of graduate and undergrad students to help study and research how families interact with their children living with CF, as well as the siblings who were living with a child with CF.
We called parents/caregivers, and learned to prompt them to track their days in 15 minute increments to determine how much time they were able to spend with each of their children, whether diagnosed with CF or not. As a sibling living with someone with a diagnosed chronic disease since the age of 8, this research was particularly meaningful to me.
I remember, that August day in 1992, the fall of my 4th and final year at IU, the excitement.
We met as a group sporadically, and I was there to report on my experiences that summer interning in Indianapolis for Lennon and Associates, which Dr. Quittner had sponsored as my professor of record, and learning about what Dr. Lennon termed Rage Therapy.
The symptoms I observed and studied are most closely associated with what is now known as Reactive Attachment Disorder (RAD)
I remember, the excitement, as Dr. Quittner announced that a part of the gene for CF had been identified and the hope that we all felt about life expectancy and lung capacity for those who were living with CF.
Now, in 2021 and beyond, medications are being developed that really reduce the symptoms, and the ages at which these meds can be prescribed are changing quickly and the hope is great.
Children, teens, young adults, those in young-middle adulthood and beyond have a new hope for the scarred lung tissue that has been a hallmark sign of CF, causing breathing to be difficult.
The hope is great, and so is the need.
BCCF is comprised of volunteers, working board members, and our incredibly talented photographer/Executive Director Kiri Roeseler, who took the pics of the kids that were at SweetWaters Cafe
The stories about the children, teens, and young adults are written by the families themself; some by children or by parents living with CF. Kiri gets some help from her son, one of her two children living with CF in their home.
To learn more about Blue Caboose Children’s Fund, click http://www.bluecaboose.org.
To learn more about Type One Diabetes (T1D), and progressing toward a cure for that, go to http://www.Jdrf.org.
To learn more about progress toward curing CF, go to http://www.cff.org.
It’s a hopeful time.