Sunday, April 29, 2012

Thank you, all

For all the thoughts and prayers, runners and donators, you are so great and carried us to the finish line today.  We are forever grateful.  Nest year, I'm predicting sunny and 72!

Tuesday, April 24, 2012

Impossible is nothing

Fantastic is an appropriate word to describe our day and Jude's screening at the Children's Center for the Visually Impaired.  Our 9am appointment was greeted by smiles and warm faces, several in fact.  The objective of the screening was to assess Jude's initial needs and to get a basic plan for in-home therapy sessions.  Next week we will begin our first home therapy session and we couldn't be more excited.

The meeting with the professionals at the CCVI was consistent with what we've come to know of these good people.  They were calm, solution-oriented thinkers, rivaling only Jude's family with his best interest at the forefront.  We were reassured again, not surprisingly.  Our excitement for being a part of this special organization continues to grow.

The assessment consisted of observing his disposition, watching his play and tummy time, and evaluating his ability to perceive light.  As you may know, opthamologists from early on ruled out Jude's ability to perceive light due to his disorganized eye structure.  At the time, this diagnosis was disappointing.   The light perception, even minor, can be such a helpful sense for a toddler when trying to get them to walk or reach toward a light and later when acclimating oneself to their surroundings.

If there is anything we've learned through this process, it's that nothing is impossible.  We met a parent today who was told her son would never walk and would be tube fed through life.  She says now he runs nonestop and eats solid foods.  We started a Trolley Run team, hoping for $250, running with 10 supportive team mates.  We sit at 107 team mates and are close to $11,000.  We walked into the CCVI this morning understanding our son had no light perception.  Today, their therapists told us they disagree!

Impossible is nothing.

St. Jude: Pray for us.

Sunday, April 22, 2012

Behind the scenes of NBC 41

As many of you know, Jude had an opportunity to share a little bit of his journey on our local NBC affiliate, 41 Action News.  The quick spot was a promotional segment for the upcoming Trolley Run- which you've certainly heard of by now!  Jude was gracious enough to share the spotlight with his brothers and mom and dad.  We all had a blast!

If you've seen the video of our time on air, you have already noticed how great Jude's brothers, Peter and Thomas, behaved.  Let me tell you, minutes before, it was a different story.  Thomas, while wrestling with big brother, fell and knocked his head on the tile floor outside the studio in the waiting room.  And Peter scraped his knee on the sidewalk in front of the building.

These injuries happened on top of the extra wait we endured, as we arrived at the studio at 10:30 for what we thought was an 11:15 interview, only to be told we had been moved to 11:45!  Thank goodness we stopped by Panera before and grabbed some cookies for the two older boys.  They had just enough nourishment to get them through.

Katie Hall holds Jude
as Matt looks around, impressed
When our time arrived, our family along with Katie Hall the Trolley Run co-chair and Traci, CCVI's PR director, walked down the hall to the broadcast studio.  The light was still on, flashing "ON AIR" so we waited for the commercial break.  Once the light went off, we walked through two thick doors to enter the studio we had seen so often from our living room.  What a sight!

Sensory overload is an appropriate term for the scene.  The well lighted studio housed the anchor desk, weather center, green screen, a small-scale kitchen and a "Today Show" looking couch set-up.  Each zone had at least three big screen LCD TVs and lights overhanging.  The crammed studio had about four people working in it total, including Curtis Jay, the lead anchor and Jeff Penner, weather czar.

Curtis Jay immediately greeted us upon arrival.  He high-fived the boys and had a great personality.  Seeing someone on TV and then meeting them in person is interesting.  He was about my size, which I found surprising.  Ultimately, he made it a great time, such a nice guy.  The whole crew was actually real impressive; surprisingly relaxed and welcoming of the toddlers.  They were pros.

During the actual spot, which seemed like a flash, the boys did indeed do really well and Jude stole the show.  The spot went right into weather and we got to see Jeff in front of the green screen.  The boys were confused needless to say, but we were so happy with the entire experience.

Thank you to Katie Hall, Traci and everyone from the CCVI (we hope we represented your organization well!) and NBC 41 Action News.  We had a great time.

Friday, April 20, 2012

Do you feel God's hand?

Several years ago as a high school senior I was assigned a book about faith and doubt, "Why Bad Things Happen to Good People" and I assigned the same book to a class of my own seniors years later.  Ultimately the answer to the question is not one that can be quickly and concretely answered.  But, it is a great lesson in what we believe and how these truths are revealed.

In the midst of a tragic or saddening period, it is so tempting to ask the question "why me?"  And focusing on this question can only lead one to the conclusion that our God is a vengeful one, and what hope is there in that?  We have chosen to flip the question on its head over the last two months; rather than "why us?" we ask, "why not us?"

Instead of being sad at the fact that our son has been born blind, we turn this hopeless lamentation into one springing with hope and empowerment, THANK GOD JUDE WAS BORN INTO OUR FAMILY!  Just that little turn of phrase makes all the difference, honestly.  We are focusing on what can be done, not what has already been done.  Ok, he's blind.  But, he's SO much more.

Beautiful baptismal gift
from Tim and Kelly
What is clear here is we don't always get to choose our life's purpose and for what causes we become advocates.  We can choose our reaction.  Before Feb. 29, I had never heard of the Trolley Run or the CCVI or felt a strong connection to the visually impaired.  Today I hope my son's inspiration can take our team to $10,000, benefiting the CCVI.  Are you kidding me?  God is good.

Join and take us to $10k.

St. Jude: Pray for us.

Thursday, April 19, 2012

41 Action News w/ Jude

Hey gang.  Jude had his 15 seconds of fame today and was nice enough to let us join him this morning.  Check this out.  You can also still join our team at this link.

Dinner, contacts, odds and ends

There are a few things going on at the same time and I wanted to be able to give better context.

Last weekend we posted a contact form on  Our goal is to compile a name and address list from friends and family who have supported us.  We have discovered how few addresses we actually have and rather than send endless facebook messages, we'd like to send a letter of thanks along with a photo of Jude.  It will not be used to sign anyone up for newsletters, forward unsolicited mailings, or sold to a college or university's admissions office.

If you have not taken the time, please fill out the Jude's Dudes Contact Form on the right margin or linked above.  In a nutshell, we are so touched by your actions that we simply want to be able to reach out to you in a more personal way than a facebook message.  It is the least we can do.  The form also allows a personal prayer request.  Of course the entire form is optional, but our reasoning is that Jude's Dudes is not a one-way street.  We'd like to offer you and yours in prayer and support, too.

Pasta party!

If you donated to the Trolley Run or registered to be a member of Jude's Dudes  chances are you received an invitation to our Pasta Party for Sat. April 28 at 4:30.  The sole purpose of this event is to thank the wonderful people who have helped make our team happen and in such a great way.  This is a free dinner put on (by a few of my caring colleagues) to get the team together, meet Jude and carb-load!

PLEASE consider stopping by, if not just to meet Jude.  Because this is our first ever Trolley Run, we just aren't sure if the group will have an opportunity to get together prior to the race.  And, with 100 people on the team, it's unlikely Joanna and I will get a good chance to thank everyone that morning.  If you felt our hearts, you'd know how important it is for us to hug each of you.  Families are invited, please just let us know how many are coming!  Looking forward to it.

Jude hanging out!
Jude's Dudes Pasta Dinner
Where: Rockhurst High School
9301 State Line Rd.
Kansas City, MO 64114
When: Sat. April 28, 4:30-6pm
RSVP by Wed. April 25
Matt Nickson
Theresa Fessler

Jude Timothy - repost

With the Trolley Run nearing, I felt it would be an okay idea to repost the video that really started something quite special in our lives; that was the overwhelming reaction from our friends and family.  Enjoy!  Don't forget, there is sill time to register for the run or make a donation to the Children's Center for the Visually Impaired. Jude will be heading there next week for his initial onsite evaluation.  We are looking forward to working with them.

Trolley Run Team Site

Saturday, April 14, 2012

Jude's Dudes Contacts

Thursday, April 12, 2012

My leap of faith

I remember well the excitement that came from maneuvering my bike around our old neighborhood, feeling the wind across my face riding fast downhill, knowing I controlled the next move.  Getting to this point of comfort did not come easy, however, because there was such assurance previously in the safety of those training wheels, along with its dependency.  Though with my dad's encouragement and guiding hand, eventually the training wheels came off, as I discovered my own balance and gained confidence.  

But, between the safety of my training wheels and the freedom of independent riding was a period of time where all I could do was surrender.  Surrender to this new feeling of imbalance, surrender to the risk of pain caused by falling, surrender to the possibility of breeze blown rides enjoyed down steep hills.  But in order for me to dream this last possibility, I had to accept the likelihood of the first two. 

And it was through this increased vulnerability that a more sustainable happiness could be cultivated.  In this case, riding a bike for great enjoyment.  In life, it's not as easy to see when the metaphoric training wheels have come off and our independence established.  Not until we truly surrender, do we find out how free we are to ride independent in time.  

The day was Jude's second, March 1st, and a NICU doctor rushed into our room and ran down a list of developmental health issues potentially facing our son, who was at a minimum, born without sight.  After telling us that he would need to undergo an MRI to see that his brain had not also been stunted, I found my mind racing five, ten, twenty years down the road.  Our future hinged on this test, I thought. The unknown permeated my mind.  

Through my tears and anxiety, I was given a wonderful opportunity of grace and clarity.  Jude was to be walked down to the room before going into the MRI.  Due to circumstances, Joanna was unable to walk with him and I was alone with Jude before he underwent this crucial test.  As I waited for the tech to ready things for Jude I forced myself to forget about what might come from this MRI.  Stop dwelling on what might happen later today, tomorrow or in years, I said.  And just as I trusted my father's hand to gently let go of my seat years before, in that room with my son, I surrendered to the unknown again.  I surrendered, or in this case, took a leap of faith, accepting I could not know the end result.   

This has been my focus since that moment.  I was telling a friend the other day that there is an uneasiness and a discomfort in the unknown.  We fear it, much like removing our training wheels.  And there is a lot still unknown with Jude.  We can be restrained by our fears of the unknown, or open to the joyous possibilities resting therein.  But, the best part, in that total surrender, I know beautiful things await this journey, however unplanned or unprepared or even unwelcomed, initially.  I can't know what awaits us tomorrow.  And worrying about it only limits the possibilities  I just have to leap and surrender to it.

And for what better reason than for our Leap Day baby!

Take Lord, and receive all my liberty, my memory, my understanding, and my entire will, all that I have and possess. Thou hast given all to me. To Thee, O lord, I return it. All is Thine, dispose of it wholly according to Thy will. Give me Thy love and thy grace, for this is sufficient for me.         - Ignatius Loyola
St. Jude: Pray for us.

Thursday, April 5, 2012

Let's do this

Within a week of Jude's birth, we had signed up and created a Trolley Run team for the April 29 4-mile run/walk through Waldo down to the Plaza.  Jude's Dudes has already exceeded my expectations in the ways of fundraising and team member sign-ups.  The team has been highlighted in a Trolley Run email and we've spent time in the overall top fundraising spot, only to be recently overtaken- although who could root against team Brookie's Cookies:-)

From former students to old fraternity brothers to anonymous do-gooders, the generosity is coming from all over.  Each donation made to Jude's Dudes or new team member added, makes my heart grow.  We'll easily hit $6,000 raised with over 70 team members or fellow 'dudes.'  How dd this happen?

However it happened, I can assure you the mission is a good one.  Joanna and I just spent over an hour talking with two caring individuals from the Children's Center for the Visually Impaired (CCVI) which benefits from the Trolley Run - in our own living room!  If I had any doubts about the possibilities for Jude and other children with visual impairments, they are nearly forgotten after our visit.

Jude, and other children, stand to gain so much over the next few years.  The donations you have made go directly into helping visually impaired children, like Jude, reach their developmental milestones and maximize their own potential.  If the two individuals who visited us today are any indication of the broader center, your money is well invested. These people are fighters and a parent-advocate's dream.

Consider this my impassioned plea.  To my friends and family who have yet to make a donation or join the team, you still have time.  You will be donating to weekly in-home and onsite therapy for Jude and others where parent limitations simply can't adequately serve.  You will also be gaining an advocate for your own causes, because mark my word, Joanna and I know our time to give back will come.

Again, thanks to all those who have already joined our fight.  Continue to support this journey through prayer and positive actions.  We are all starting something special.
The face of our fight
Donate now to Jude's Dudes and the CCVI.
CCVI website
St. Jude: Pray for us.

Tuesday, April 3, 2012

For goodness' sake

In one of my all-time favorite scenes, in easily my all-time favorite holiday movie, It's a Wonderful Life, the admirable, but down-on-his luck Jimmy Stewart as George Bailey, finds out just how much he is loved by his family and friends within and outside the Bedford Falls community.  One at a time and on and on, friends march through his living room, offering financial support to George and his family in his time of great need.  Standing next to his beautiful bride Mary, played by Donna Reed, George is overtaken by the sentiment and good will.

For all intents and purposes, our house door has been open and our living room has been marched through for a month and a half.  In place of George's pile of money we've been showered with love, support, prayers, braille books, warm meal after meal after meal, gift certificates, care packages, toys for the older boys, and on and on and on.  Pure expressions of love and support.  And I have no doubt that if there was a price tag that could alleviate any of our fears, that too would have been met and plopped on our table.

To our friends who have prepared a meal, shared a prayer, written a kind note, offered a hug, wrapped a gift, made a donation to Jude's Dudes, etc. you are starting something great.

And it goes on and on...

I was telling a friend the other day who offered a word of support to me that his words would continue to ripple and not come to rest, but would move on and pass through us until they reached a new need.  There is such a sense of grace in that thought for me when I think about what goodness my son is starting.  Among the first of many miracles that will dance from his existence, the goodness and spread of God's love is the most comforting.

St. Jude: Pray for us.