This week I provided a blog to Herself First. This Month the "What I know About..... blogs are on being a Mom. Enjoy my witty, wry description of myself as a Mom.
Wednesday, May 23, 2012
Thursday, May 10, 2012
A Mother's Wisdom!
Last week I participated in a pod cast called Kitchen Table
Conversations with HerSelf First. I
really enjoyed the conversation with Sheila Moeschen, Kathi Kinnett, and Kris
Hersom. It was truly an enlightening
conversation! Click here
to listen to the Podcast.
There are many life lessons that I learned from my mother. However, I think that if I impart these three
lessons to my own daughter she will end up with an indomitable spirit that will
allow her to ride life’s roller coaster.
As I was preparing for this conversation, I realized that a
lot of time is spent focusing on my son.
As my daughter so aptly put it a couple of months ago “Hey, Mom, you
have another kid you know.” At 21, my
daughter is moving into adulthood. One
of my greatest teachers was my own Mother.
My Mother passed away in 1999 when my daughter was 8 years old. As I
look forward to my daughter’s future, and she becomes her own person, I wish
she had a chance to really get know my own mother and learn some of my mother’s
lessons first hand. They are really
inspiring and independent messages.
A.
You never know how strong you are until being
strong is the only choice you have.
One of the most vivid memories I
have is the day my Mother told my father to move out. I was in elementary
school. My parents’ relationship was not
a Norman Rockwell painting. My father
owned a pool hall and loved to gamble. He didn’t think women should go college
or have jobs. He believed women should
get married have babies and stay home.
My mother got a job as a historical librarian and had a career that she
loved and was renowned for her in depth knowledge of Manchester NH. When I was in high school my father developed
inoperable lung cancer. My mother asked
my father to move back home so we could care for him. One of the last conversations I had with my
Dad was that he told me was that my mother had convinced him that I should go
to college and get my degree.
My mother had courage and strength
to separate from my father, in the late 60’s when it wasn’t accepted. My mother decided to pursue a career that she
loved and was passionate about, against her husband’s wishes. My father later
told me that he was pretty proud of her. My mother showed compassion toward my father.
My father could make her completely crazy with his get rich schemes and some of
his dumb decisions. In the end they both showed me that even though they didn’t
live together they both deeply cared for each other. My parents ultimately cared
about each other. They both had inner
strength to look past their differences and allow one to care for the other
during the difficult times.
B.
Don’t be afraid to fail, be afraid not to try
and never give up.
My mother had me late in life.
She was 40 when I was born. She suffered severe post-partum depression and was
hospitalized in a mental institution for a few months. There she suffered
electric shock treatments and was put in isolation. Techniques, to treat
post-partum depression back then were in their infancy. When I asked her how she managed; she said that she recited literary poems out
loud to keep her mind active; with the recitation she could keep the demons at
bay. In doing so she never gave up trying to get out the fog. She was released after a few months, fully
recovered from the post-partum depression. When my son was diagnosed with
Duchenne, it was my mother that said: “Don’t
be afraid to fail, be afraid not to try and never give up.” Doctor’s
may not know everything and it’s OK to question them and seek other opinions. You may not find a true cure, but you can
provide a much better quality of life then they are predicting. Keep searching and researching. Do
what you think is right. Now when, the doctor tells me how well my son
is doing after a check up, I hear my mother’s voice in my head saying. “You
never gave up.”
C.
Daughters are very special people.
My mother’s insight was coming
from a place of insecurity. Her own
family didn’t think she was that smart and didn’t think that she would amount
to much. She proved them wrong when she was eulogized in the Manchester Union
Leader and in the Boston Globe for being one of the most respected historical
librarians in New England. My mother always emphasized that milestones
in a daughter’s life should be celebrated and she should be made to feel
special. I have always tried to
celebrate the milestone in my daughter’s life.
Girls need extra support and validation that they are OK sometimes. My daughter has two favorite memories. The first one was on her 13th birthday. We
spent her birthday weekend in New York City with her aunt and cousin. We had a great time with dining, shopping and
seeing the Lion King. The other memory
she has is when we went looking at colleges in New England. We stayed the night with one of my best
friends and sorority sister from college.
My daughter loved hearing about our bad dates, boyfriends and fun antics
we had during college.
Saturday, May 5, 2012
Bubble Gum, Duct Tape, Spit, and Wine!
For the past month I felt like the old TV show MacGuyver
more so than normal or the line from Project Runway, “Make it work!” At the end of March I finished a five year
assignment in Buffalo NY. I live in
Rochester, NY. For anyone that doesn’t
know how far that is, from my home to my office I logged approximately 176
miles round trip; about three hours a day driving. Most people that live in NYC, Chicago or
Boston understand. However, in upstate
NY there really isn’t a good way to commute this distance via public
transportation other than to drive. So a couple of years into this assignment,
I was grateful that I could work from home twice a week.
When the assignment ended I was grateful, I could now be in
Rochester and be able to help Jon get ready or take him to school and hopefully
find work in Rochester. My husband needs
a break sometimes. However, life with
Duchenne is always changing. A few
weeks ago Jon slipped in his room getting out of bed in the morning. He fell and ended up with a compression
fracture. Normal things like dressing, bathing, eating and toileting became
“Make it work” events. He couldn’t walk
anymore without lots of pain, transfers between the car and getting to the
wheelchair we needed to figure out. The
upside, I figured out how to drive his wheelchair. I would have Jon stay in the
car while I brought his power chair to him.
My husband used the manual chair
to get him from the car to the building where we store his power chair on
campus. It took a couple of weeks to get
the x-rays and the MRI to uncover the precise location of the pain. Jon kept saying he bruised coccyx. A week after Jon fell; he and my husband were
on a plane to Utah for the Ataluren clinical drug trial. My husband made it
work. They needed to wait for the isle
wheelchair which is always a long and tedious process. Jon managed the pain with Tylenol. On Sunday, they called from Utah and said
that Jon’s pain wasn’t getting any better.
I called the Dr. first thing Monday to get an x-ray scheduled for
Tuesday morning. The x-ray uncovered a
problem, however it wasn’t clear if this was an old issue a new one. In 2007 when we had a complete work up done
at Cincinnati children’s, I had foresight to request a complete report of the
test results. I was able to notify the back specialist where the previous
fractures were. It was determined that
an MRI was needed. Insurance needed to
approve the MRI. It took a week to
determine that it was a mild compression fracture. Jon will need a back brace. I spoke with the back specialist regarding the
brace; my concern is always to keep Jon as mobile for as long as possible. Can a brace be made to account for Jon’s
posture? Jon’s standing upright and
walking is a balancing act that he alone has figured out. I’m not sure if we can brace his back so the
fracture heals and still allow Jon to walk.
We met with the brace specialist. The brace will ready in a week. In between the appointments for the
measurements and picking up the actual brace Jon saw Dr. Biggar. Jon is
now walking and the back pain is gone.
Jon may not need to brace by the time it’s ready, but we will have it
for next time.
Life with Duchenne, is ever changing and filled with “MacGuyver
“and “Make it Work” moments. My analogy for anyone that’s not dealing with
Duchenne is that my life is held together with bubble gum, duck tape and spit
and on occasion a glass of wine. However,
no matter what your life is like I think we can all take some lessons from the
MacGuyver TV show.
Lessons Learned from
the TV Show MacGuyver’
* Any problem can be solved with a
little ingenuity.
* One person can make a difference.
* Never underestimate the power of chocolate.
* Nice guys don't always finish last.
* One person can make a difference.
* Never underestimate the power of chocolate.
* Nice guys don't always finish last.
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