Father's Day Parent Profile
We're doing something special for Father's Day and featuring THREE amazing men this week!
Dear Itzy Ritzy Friends:
I want to thank you in advance for your time in reading
this Parent Profile as it is not our typical newsletter.
A good friend of mine, and of Itzy Ritzy, was recently
diagnosed with ALS, also known as Lou Gehrig's disease. Like all of us,
he is a loving spouse, caring parent of two young beautiful children and a
wonderful friend. Affectionately known as "The Seabass", his
attitude in the face of his current situation is truly inspirational; however,
to me, The Bass has been inspirational long before this chapter of his
life. Any situation, any moment, any good time immediately becomes better
when The Bass is there! You can read more about Stephen as a father and
his story below.
Brian Douglas
Chief
Executive Officer Itzy Ritzy, Dad of Three
___________________________________________________________________________
|
Stephen
(age 36), wife Cara, daughter Mary Adair (3 years old) and son James (16
months) |
About Stephen:
Stephen Finger - known to my friends as Seabass or The
Bass. I am a 36 year-old economics professor at the University of South
Carolina. I have two kids and a beautiful wife.
Names of
kids/ages/genders/and what they're into these days:
James: 16 months. Trying to walk, music, books. Mostly
he loves to play whatever his sister is playing and to smile and
laugh at his parents.
Mary Adair: 3 (yesterday!) Puzzles, books,
games, bossing around her brother. She also loves to go to local
festivals or to the park to meet new friends.
What is the thing that surprised
you the most about becoming a dad?
Investments
pay off. Getting up in the middle of the night when they were screaming
as newborns, rocking them back to sleep, rocking them when they won't go back
to sleep, making them breakfast at 5:30am on Saturday morning, taking them to
the zoo while Mama gets some work done, getting down on the floor to play,
snuggling on the couch. All of these little investments made me love my
little guys beyond belief. Moms are invested for nine months before
babies are born. Some dads are connected right away. I always was
going to take my role as a father seriously, but I think it was only through
really getting my hands dirty that my love for my children grew to the
"this is the most amazing thing in the world" stage.
You're a healthy guy, how did you
know something was wrong?
For the past year or two, I have noticed my hands
getting weaker. It started on my left and then moved to my right. Nothing
major, but sort of annoying. Little things I did on a daily basis like
buttoning little dresses, unlatching car seat buckles, opening champagne
bottles, had become more difficult than they should have been. I was able to
help Santa Claus put together a new swing set in the backyard, but only with
frequent breaks to warm my hands (in South Carolina mind you).
The
diagnosis:
In January 2013, I went to see an orthopedist, I was
then referred to a neurologist, and ultimately referred me to a neuromuscular
specialist at Duke University. Duke has treated my family well in the past --
Cara and I were married in the chapel and my parents met there -- so we went up
there in February. We met with one of their neuromuscular specialists, who did
more tests and concluded I had a Motor Neuron Disease, and referred me to
Duke's ALS Clinic. The doctor there confirmed that it was ALS.
Obviously, I would rather not have this disease, or
face an uncertain future, but I love my life. I love my life. I don't write
that twice to convince myself. I right that twice because I mean it
wholeheartedly, without any hesitation. I look back at the day I was diagnosed
and I cherish crying in my wife's arms in the Duke Gardens. Snailing snot all
over her sweater just like James or Mary Adair do. I obviously wish this was not
a part of my life, but make no mistake, I love my life.
What is your favorite one-on-one
activity with your kids?
We
love to go to the Richland County Public Library. They have wonderful story
times and just amazing concerts. However, I have found being there very
emotional recently. Sitting on a rug having a great time with my kiddos,
surrounded by other families doing the same. But, they don't wonder for how
long they will be able to sit on the rug and catch their kid before she runs
off. They don't wonder whether they will know their children as 6 year-olds or
8 year-olds. They don't wonder whether they will be around to see their kid go
off to their first day of kindergarten. This is the big occasion I hope to make
it to. James's first day of kindergarten. It may be overly ambitious; I hope it
is way under ambitious (again, I pray my estimates are off by 10 times!), but
this is the event I am targeting. Dropping him off at school or at the bus
stop, name tag pinned on his shirt, lunch box in hand, wearing a new backpack,
nervous and proud to go off to the big kids' school. The first step in
preparing to take on the world. I want to see that step.
You have
such an amazing spirit in light of the sadness associated with ALS (on average
patients live 3-5 years as they lose the ability to walk, talk, swallow and eventually
breath). Your attitude is truly inspiring. How do you face each day?
This is
my normal. I'll be laying on the ground with James crawling on me, drooling on
me, laughing at me, and I will just want to scream in his face, "REMEMBER
THIS!" "REMEMBER HOW MUCH YOUR FATHER LOVED PLAYING WITH YOU ON THE
FLOOR." "REMEMBER THE LOOK IN MY EYES." If or when the day comes
that I can't roll around on the floor, or bounce you up in the air, I hope you
at least see the same spirit in my eyes. Mary Adair now recognizes jokes. She
will say little nonsense sayings and laugh. When I tell her a joke, she will
laugh hysterically if I give her the right prompting. Will I be around long
enough for her to figure out my jokes aren't that funny? Will I be around long
enough for her to realize how proud I am of every new trick she learns, of all
of the things I know she will achieve? Walking my daughter down the aisle may
be a pipe dream at this point, but there are so many things I want to do
together in the meantime. Waiting in bed in the morning for her to yell,
"Papa come get me" and being able to be the one who goes in and gets
her (she will do this til she goes away to college, right?). Taking her to her
first soccer game, first dance recital, first concert, first art exhibit in 5
years, in 10 years. Enough to know them and for them to know me.
Tell us
about your beautiful wife, Cara:
It
is crushingly sad to think about the affect this disease will have on my wife.
She said for sicker or poorer. I heard her say it. A chapel full of people
heard her say it. But I don't think either of us were anticipating this. Maybe
some of our memories we thought we'd have won't be made. We have made so many
amazing ones already, and I know she knows I love her beyond all doubt. But it
is hard. Her life won't be what she expected even a few months ago. She is an
incredibly capable, organized person, and I know what ever comes, she will keep
our family going. But it is hard to know I won't be there all of the time to
help. There to get between her and Mary Adair when their stubborn heads butt
one another. There to calm her down when James responds to an admonishment with
a grin and a hug. There on the couch when the kids are asleep, or out with
friends, or off to college. I see how it already affects her as I have trouble
getting James dressed and changed. She picks up the slack. She keeps the house
going, while also doing her job at work the only way she knows how, better than
anyone else. She is the one facing the looming burden. Through this she has
told me, "I don't need you to do anything, but I need you." I don't
need you to do anything, but I need you. This is burned in my head. She takes
comfort in knowing that my sense of touch will likely not be compromised, so
while I may lose the ability to squeeze her hand, I won't lose the ability to
appreciate her squeezing mine.
___________________________________________________________________________
Like you, the Itzy Ritzy
community of parents "Loves Life". How can they help?
My
hope is that more people become aware of ALS. More people being aware of ALS,
means more people working to make sure effort and money are going where they
are needed. More money and efforts from individual donors will help conquer
this disease that has ceded almost no ground in the past 144 years. If you feel
like giving money, give to The ALS Association. If you give, I will be
grateful, as will my family, and many other families affected by the disease. Donate now.
On June
15th there is a ALS Association Walk to Defeat ALS. If you should feel that you
want to donate to the cause, Itzy Ritzy will match your donation up to a total
of $2,500 as a Father's Day gift to
The Bass.
Please
support the Itzy Ritzy team and show Seabass that he and his family are
not alone in this.
Donate now.
Any
amount you feel comfortable giving is deeply appreciated. You can even donate
in honor of your husband and include a print-out in his Father's Day card. Let
him know that you love your life and when you said for sicker or poorer, you
mean it.
Go Get 'Em Seabass!
You
can read more about Stephen's Story here.