Tuesday, June 11, 2013

Please Read this Courageous Parent Profile: Father's Day Edition

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.


Jena said...

Thank you for sharing your courageous story. You and your family will remain in my heart and prayers throughout your journey.

I hope that you know about Steve Gleason and his "No White Flags!" and "Awesome Ain't Easy" mottos. http://www.TeamGleason.org

Itzy Ritzy said...

Hi Jena,
Thank you for your sweet comment and the information.
xo, Itzy Ritzy