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Tuesday, December 18, 2012

True faith

When I was a child and at night would wake up, I would cry out to my parents.  Startled by a bad dream possibly and a sudden awareness of the dark which surrounded me, I wanted comfort.  My parents would come into the room, possibly turn on a light, look at me and I at them, and say "go back to bed, you're ok."  What security seeing my parents brought.

Jude will never see his parents.  He will never see the smile that his mother beams his way, watching his little hands clap for the first time.  He will never see the snapshots of his proud dad, captured soon after his birth, aglow with the joy of his new boy to love.  And, I wondered early, if he can't see his mom and dad, how will he grow to love and trust us?

Before I left for work this morning, I entered Jude's room to say goodbye and give him a kiss.  He had just woken up and was in his mom's arms, standing a few feet from me, when I called out to him, "Jude-boy, I love you."  At this, he turned his entire body to the direction of my voice, reached out and stretched himself my way, smiling sight unseen.  How happy I was to receive his warm, cuddly body in my arms.

It wasn't until a little later that I began to realize the gravity of the moment.  Not only had Jude recognized my voice and twisted in its direction, more importantly he reached through the darkness and trusted I'd be on the other side.  Allowing faith and love to navigate, Jude found what he was after.  What a model for our faith in an unseen God.  

Never before and not likely in my earthly days will I gaze upon the face of God.  Should I allow this to be proof enough He does not exist?  As my voice, touch and daily interactions convince Jude there is a loving soul on the other end of his reach, so too I am surrounded by the clues that God is here and God is good in all of creation.  Sometimes we must reach out, unaffected by what awaits at the opposite end, in order to reap the benefits of faith.

2 Corinthians 5:7 "For we walk by faith, not by sight."

St. Jude: Pray for us.

Friday, November 2, 2012

Close your eyes and see

Before daylight I found myself awake and restless.  After enough tossing and turning I decided to get out of bed and begin my day.  So as not to wake the others still sleeping, my morning tasks began without light, and depended upon touch and memory.  In an attempt to further understand our son's world, I tried to keep my eyes closed.  From starting the coffee, pouring a glass of orange juice and maneuvering the halls, each task took exceptional patience and awareness.

For someone with sight, while the tasks were more time consuming, they were almost more annoying than challenging.  So badly I wanted to simply open my eyes and rush through them in my same nonchalant way, going through the motions and running on auto-pilot.  Point was, I had to be very deliberate in the acts and rely on a combination of other senses to make up what sight affords for these day to day necessities.

Inconvenient is the word that came to mind initially when considering the small lesson I gave myself; as we are all so ready to rush through the mundane and typical.  Although the tasks were accomplished, they took much more time than I was used to and much more thought through each unique step.  With each touch though, there was recognition, each sound, increased awareness.

With sight, my life goes by real fast, from the day to day things, to the choices I make, many with little to no thought.  Come to think of it, as I practiced without sight for a few minutes, I feel I actually became more aware of my world.  How much do I allow my eyes to miss daily?  It might not be such a bad idea to learn from this lesson and every now and then, close my eyes, slow down and see the world around me.

St. Jude: Pray for us.

Sunday, October 7, 2012

Take it on

I don't know how you do it, we'll hear people say  Usually it's from our peers, who like us are in their early years of marriage and parenting.  It's a generous compliment and one which we are not quite sure how to respond.  After all, there's no book that tells each parent exactly how to react to their own children. We just do, I guess.

I say it to others too though.  Friends who we've met recently through our school-aged kids have experienced the ultimate loss, that of a young child, and I still think, how do you do it?  Until you're in a situation of great challenge, no parent can answer this question.  And the fear on the other side of the question is typically could I be as strong?

From Jude's earliest days, my biggest fear was that of self-doubt.  Could I be strong enough to raise Jude to greatness?  There are times when it seems more appropriate to hang my head and cry out of fear and self-pity, but that's merely wasted time and tears.  So, a loving parent moves to take it on.

And this is how, I guess, a parent does it.  They take it on one loving day at a time.  If we thought through it too much more, it would likely be impossible.  But, if I've learned anything, it's that parental love can overcome any inadequacies left by fear and inexperience to take it on.

I wrote this for Jude and for myself, to know it's going to be okay.  To all parents, new or experienced, scared or secured, just approach it with love. 

St. Jude: Pray for us. 

Tuesday, September 25, 2012

Such a special boy

Several months ago we tried to take comfort in this distant notion that eventually things would begin to feel so normal.  Daily we'd adjust to a new way of doing things and these new ways wouldn't seem so new after a while.  In fact, with a little bit of effort, they might feel special.  I think I can safely say we're in the middle of something better than normal and flat out special.

For starters Jude began eating solid foods in his high chair with the rest of the family.  Certainly an anxiety we shared was how to feed a child who can't see the spoon in front of his face.  Although a new experience for us all, he has taken to cues nicely and, we both agree, is a better eater than his brothers before him at this point.  We're so relieved at how well he's done.

His muscle control continues to improve and we are confident he'll one day crawl, which is a difficult idea for one without sight.  He has been sitting up with confidence and plays in a new sensory play house, built by Mom.  We've also been impressed at his awareness of objects around him   Shake a rattle near his face and he'll grasp to play.  When he drops a toy, he's begun to reach for the item in search of it.


Outside of these exciting feats, most importantly, he continues to be the sweetest boy our house could want.  Granted it's an awareness different to the ways we loved our parents, I assure you, he is very much aware of his mom and dad, brothers and friends and loves us deeply.  He will still to the sounds and voices of his loving family members.  We are blessed to hear him sing beautifully for us all.  To say things are normal here would be minimizing how special Jude continues to be.


St. Jude: Pray for us.

Wednesday, September 12, 2012

The long view

I recently attended a meeting for a committee I joined for my church's mother's group. The leader of the meeting said this prayer in preparation for the undertaking of a large fundraiser we are preparing for in November. While the prayer was very fitting for the meeting, it is also fitting for my life. 
It helps, now and then, to step back and take a long view.
The kingdom is not only beyond our efforts,
it is even beyond our vision.
We accomplish in our lifetime only a tiny fraction
of the magnificent enterprise that is God's work.
Nothing we do is complete, which is a way of saying
that the kingdom always lies beyond us.
No statement says all that could be said.
No prayer fully expresses our faith.
No confession brings perfection.
No pastoral visit brings wholeness.
No program accomplishes the church's mission.
No set of goals and objectives includes everything.
This is what we are about.
We plant the seeds that one day will grow.
We water seeds already planted,
knowing that they hold future promise.
We lay foundations that will need further development.
We provide yeast that produces far beyond our capabilities.
We cannot do everything, and there is a sense of liberation
in realizing that. This enables us to do something,
and to do it very well. It may be incomplete,
but it is a beginning, a step along the way,
an opportunity for the Lord's grace to enter and do the rest.
We may never see the end results, but that is the difference
between the master builder and the worker.
We are workers, not master builders; ministers, not messiahs.
We are prophets of a future not our own.
Amen.
If one is not careful, motherhood can become a losing battle to have it all. It is so easy to become overwhelmed with all the things that we feel are necessary; a spotless house, perfectly behaved children, time to workout, a home cooked dinner served by 5:30pm. Not to mention chauffeuring kids back and forth to preschool, time with the hubby, and all those craft ideas I have pinned on Pinterest. 
I cannot do everything. Try as I may, I cannot. It is very liberating to write these words. I can still be a good mother, wife, nurse, daughter, friend and not do everything. When Jude's therapist asks what I have done this week, I can say not as much as I would have liked. I can invite people over even though the house is a mess and I can order pizza out for those nights when making dinner is just too much. 
Remembering that I am part of something larger, something beyond my reach helps me to focus on the activities, jobs, and people that are most meaningful. What I can do, I can do well and know that God is there for the things I cannot do. His grace is ever present. It helps, now and then, to step back and take a long view.
St. Jude: Pray for us.

Wednesday, August 29, 2012

Time is on our side

When our Jude-boy entered this world and our lives, six months ago to the day, we wanted to know with immediacy what issues of health our family may likely deal with.  How would Jude develop?  Would he have other, more frightening conditions internally, hidden to the naked eye?  Oh, how these thoughts will keep a parent up at night.

Many of those fears, now replaced by new ones, have been answered through the only means possible: time.  Time, through its gift of revelation, has given us much peace about being in the thick of something and knowing that this state is but a temporary moment.  And every moment we live in that state, we move closer to clarity and healing.  No one sees clearly through tears.

As to our new concerns, when I think of them they actually give me great hope and direct me in a way in which I can only say "thank you, God."  Thank you God that, where once I feared my son's ability to move, I today can ask when will he crawl, knowing he will.  Where once I feared his place with our older sons, I now fear the three of them ganging up on their parents.  Where once I feared his ability to know my love, I worry not being home enough for him to touch my face and together share a smile.

Yes, we worry still.  Try telling a parent not to worry about their child and they'll tell you you don't get the parent-child relationship.  And so it is, we will always worry for Jude, as we will for his older brothers.  Our worries and fears aren't always pointless, though.  Consider today's fear an opportunity in six months time to see God's healing and mysterious ways in action.

St. Jude: Pray for us.

Wednesday, August 1, 2012

Hey Jude

Story goes Paul McCartney penned the classic hit "Hey Jude" with bandmate John Lennon's son, Julian, in mind, humming originally, "Hey Jules, don't make it bad," en route for a visit upon John's divorce to his first wife Cynthia.  Not knowing exactly what to say, the idea that one can take a potentially bad situation and make it better resonates with us all.  The song has been a favorite, even before the arrival of our own Jude.

We've already shared how our third son got his name and although we are Beatles fans, the band factors little into the naming process of our children- although we may have a Ringo eventually:)  But, the song has become another special aspect to our son, on top of many special aspects.  His name instantaneously brings on thoughts of the song, widely believed to be among the best and well-known tunes ever written.

Surely it's a little cavalier to claim such a song as our own, but maybe we'll go as far as claiming a share in its magic.  What a joyful song it has become for our house.  Upon Jude's birth and discovery of his eye development issues, we played the song to him; the first he would hear.  His brothers sing the song's first stanza in efforts to calm him when scared.  At my sister's wedding, it played while our family was surrounded by close friends and loved ones on the dance floor, with Jude in mind.

All songs take on their own meaning to those with an ear to listen.  The same is true with this song and us, once enjoyed now felt deeply through new meaning.  And, if we are not alone, and you too think of our Jude when you hear the first striking bar, we are together moved and connected by good thoughts.  As with all things, we can take a sad song and make it better.

St. Jude: Pray for us.

Wednesday, July 25, 2012

Hear you go

Close your eyes for a second.  You're getting closer to experiencing the world to a person born blind.  You're not there yet though.  All those things you know because you saw them in use or experienced them through moments aided by the visual, forget those, too.  Try and think now how you'd explain a table or any other object for that matter to someone who's never known a house, a kitchen or shared a meal like you and me.  The task becomes so much harder.

Let's be honest, Jude will never know a table in the same sense that you and I know one.  He will come to an understanding of one through different ways than we likely came to their awareness.  Many parents, and I speak for myself, take so much of the learning experience for granted.  I never sat down and explained a motorcycle to my older sons, but nonetheless, they have few interests bigger.  It is true, so much learning happens visually and through the subconscious.

Here in lies our biggest challenge as Jude's primary teachers.  We must get him to a point where he too can appreciate motorcycles, tables and all sorts of things.  This takes a lot of time and personal evaluation as to why we use things, what good they serve and how they exist.  If you walk into our house most mornings while breakfast is being prepared, you're in for an auditory treat, if not a little turkey bacon.  Each step is typically announced and, with effort, explained.

"Jude, I'm putting the milk back in the refrigerator now," I'll say.  "This is where we store foods needing to keep at a cooler temperature," etc. and so forth.  You get the picture, but does Jude?  We feel like we must narrate our lives, and in many regards, we should for Jude.  It's a good thing that I like to talk, because it's become our way of life.  Friends and family talk to him in a way that both educates and includes.  We appreciate and encourage this.

Do you remember ever feeling lost or left out during a conversation sitting among peers?  Maybe everyone is talking about someone or something you weren't a part of; they're all laughing or sharing the moment.  The worst part is that feeling of exclusion followed by "this is awkward!"  Carrying on in disregard for Jude's lack of sight would be similar.  We've already explained the table, might as well tell him what's going on around it!

St. Jude: Pray for us.

Sunday, July 22, 2012

Play ball

Sometimes I can't help but think that Jude is really fortunate to have a lack of vision when considering the terrible baseball that his brothers and I have seen over the last month.  The Kansas City Royals have lost 15 of their last 20 games!  What a terrible dip from an otherwise almost-promising year.  As they say here in KC, there's always next year.

But seriously, anyone who knows our family knows we are busy bodies.  We like to go and do and experience.  It's been a great joy of mine to take Jude's older brothers to ball games throughout the summers and share some quality father-son bonding.  This was truly an early concern I held at Jude's birth.  How can we keep these, or should we keep these traditions?

The answer undoubtedly is YES, they are valuable for his brothers and surely will be valuable to Jude. Simply due to the fact that his experience will be a different one, shouldn't mean we forgo the opportunities.  Our approach has been to immerse Jude into the world, not save him from it.  There are ways, however, for us to enhance his experiences though.

We are fortunate to be in touch with many parents and teachers who are well aware of what it takes to get visually impaired children acquainted with the world.  I'll admit, it takes more time than with sighted kids because so much of their learning happens through observation.  Jude's learning happens through first hand experiencing through his remaining senses.

Some of the best advice we got early on was to be certain to take our visually impaired child out like you would any other child.  Take him to the zoo, but aid his experience, we were told.  One mom we are in touch with brings more realistic animal shaped toys to the zoo and, as they come to that animal's enclosure, the child feels the toy as siblings describe what they see it doing.

Although we aren't sure how best to enhance Jude's experiences at certain activities, we are willing to try things out.  We've been so lucky to be put in contact with individuals who know some great ways to start.  Otherwise, there's no book on this, it's just trial and error.  And, hopefully by the time Jude gets the idea behind baseball, the Royals will give him something to cheer about.

St. Jude: Pray for us.

Tuesday, July 17, 2012

A practice in positivity

During a class Mass back in elementary school, I remember my parish pastor explaining that prayer, much like sport or any daily routine, must be practiced in order to become habit.  Out of this practice comes a way of life and then, ultimately, part of our nature.  I don't know why it's stuck with me for so many years, for I've forgotten far more sermons than I'll ever remember.

As I think back on this particular sermon, it seems to be the first acknowledgment from a priest or spiritual adviser that prayer sometimes has to be approached as a chore.  I mean, before this, when people spoke of prayer,  it was our natural desires that guided us; certainly nothing contrived or forced.  How welcomed this statement was.

The point can be applied more broadly for most daily actions that go a long way in forming our character.  It's the old glass half-full or half-empty outlook, where we choose to look at things with optimism or pessimism.  I wonder if my former pastor would agree that a positive attitude, like prayer, needs practice in order to become a natural part of life?

Jude was discharged from the hospital on a Monday, and with family support gathered, I felt it appropriate to get back to work to show my colleagues how joyful I was to have a new son that Tuesday.  I was aware of the email sent out among my colleagues informing them of Jude's early struggles, and I imagined many, through their concern, wondered how I'd react.

Although my world was still turned upside down, I felt that my continued absence from work would present a man in mourning and elicit more pity than support.  Somehow through all of the early worries, Joanna and I understood life would move with us or without us.  It was better that we moved with it, no matter how much it hurt or however justified it might have felt to withdraw.

Jude loves his monkey.
 A gift from dear friends.
At the time of my return, I would run into colleagues or friends asking me about Jude, which was always a personal test to see what I'd say.  On one hand I wanted to lay it all out there and say I'm scared and sad and worried and angry.  But, more often than not, I used it as an opportunity to explain the positives of our home life and the things we'd been learning.  I wanted to underscore the dignity in his and our lives.

These early encounters were very much forced to an extent, as my heart felt one thing and my head knew another.  We'd all look pretty looney if we walked around saying all our thoughts rooted in emotion.  But, every day early on was a fight to stay positive for Jude's sake and for our sanity.  It was also a practice in forming who we are.  Questions out of concern still come, but my responses, while similar in nature, are rooted in head and heart - Jude's great!

Post script, related thought

Joanna and I love Jude and want so deeply for Jude to be loved in the world he lives.  Part of this love comes from the acceptance of his dignity and worth as a man.  Although he has unique characteristics he adds great value to the world.  Were we to mope and cry publicly to inquirers, his gifts may have been overshadowed by his limitations.  And, we'd rather that not happen.

St. Jude: Pray for us.

Saturday, July 14, 2012

What's so great about my marriage?

It's been five years to the day, on a very similar Saturday, that Jude's mom and dad were married.  Married in the late afternoon at our college church, surrounded by well-wishers, who judging by the looks and smiles of our friends and families, you'd have thought were saying goodbye to our troubles and challenges.  This is likely the biggest myth of marriage and the married life.  Marriage solves few problems.

Should you take the time to ask my mom her thoughts on marriage, a wife of over 30-plus years, she'll be the first to tell you marriage might be the hardest thing you ever do in your life.  In no way is she speaking to the displeasure of her union, but rather the daily commitment that is needed in order to maintain its health and sustainability.  She and my father have a great marriage by the way.

It didn't take five years for me to recognize that my mom was right (as usual).  There absolutely must be a daily commitment to pursue the healthy state of one's relationship.  This won't happen if you can't tell yourself why it's worth preserving though.  It would be easy to allow it to fail or drop into disorder; as easy as diets, exercise routines or New Year's resolutions fall to the side.

Our marriage isn't different from those before us, in truth.  We disagree, annoy each other, and knit-pick.  But I think we do a good job recognizing what's at stake and what's worth preserving here.  If I woke up each day without an answer to "what's so great about my marriage?" chances are, it would be harder and harder to convince myself to stay a part of it.

So, what's so great about it?

When we married, we really joined two loving families.  Those families have shown up in spades for us, certainly recently.  I couldn't imagine living without the model and support of our parents, siblings and extended families.  I know Joanna loves the relationships she has gained by marrying into my family.  Truly I feel equally blessed and supported from her side.

Certainly our children are our marriage's greatest gift to each other, but they also test our collective will more than anything else.  I like to think that Joanna's work with the children, and hopefully my work, allows the other to experience more of the pleasures of parenting than the pressures.  We are shouldering this responsibility together, reducing each other's load.

It is even more evident when I consider Jude and the needs he has and will likely continue to demand.  By this I am considering what it will take to allow him to succeed.  Not to say it can't be done by a single parent, but I bet it's less likely to happen.  We are in this together.  Among the greatest things we've recognized throughout this trial is that both of us can cry and be sad- just not at the same time.

We've done a great job of expressing our individual fears and supporting those fears of each other throughout this time.  Should Joanna say to me that she is sad or scared about something upcoming for Jude, I am happy to be a calming presence.  She does the same for me and is my strength.  We rarely allow ourselves to lose it together- thankfully!

Marriages seemingly far sturdier than ours have failed, to the surprise of many.  And similarly alarming are statistics that say divorce rates among parents of children with special needs are much higher than national averages.  Don't think I don't know why.  No marriage is too great to fail, no relationship immune to stagnation and dissatisfaction.  But like anything worthy of our daily attention, we must ask ourself what's so great about my marriage?

From my opinion, you're what's so great about this marriage, Joanna.  I want to be old and slow and weak and bald with you.  I want to look back in many many years and see our children with their children, even Jude's of course.  I want to share that picture with you.  But, for this picture to be painted, it starts today all over again, as it started five years ago, waking up knowing what's so great about my marriage.

St. Jude: Pray for us.

Monday, July 9, 2012

A perfect formation

Our long awaited meeting with genetics took place this morning at Children's Mercy South, near our house in Overland Park.  It was nice to meet with the specialists closer to our home and avoid the drive into downtown.  A friend watched the older boys for us so we could simply take Jude.  We got into the appointment quickly and were greeted by two specialists, both of whom shared our concern for Jude's best interests.

From birth we have been advised to meet with this team in order to clarify further Jude's condition; whether it is part of a larger syndrome and if there are bigger issues to be aware of further down the line.  This has been a scheduled appointment for over three months, going to show how difficult it can be to get into the office.

The appointment was largely good news and confirmation of many things we've come to believe.  The doctors doubt Jude has a broader syndrome and his microphthalmia in both eyes is an isolated case, likely.  What is unknown is how Jude formed with this condition.  Was it something that Joanna and/or I have always carried, something that came about post-conception, or is it a mutation in the genes simply in either the individual sperm or egg?  We may never know.

Here was our dilemma, should we follow up and do further genetic testing to zero-in on the answer to the above questions?  The doctors offered us this route and discussed the reasons one would proceed with genetic testing.  In no way did they say we should or shouldn't, but laid out the realities of what the tests can show.  Ultimately, we've decided against further testing at this point.

Why we have chosen to not test Jude further.

We love Jude.  Our love for Jude can not grow nor diminish by an increased awareness of why or how he formed.  His medical treatment approach would not change based on these tests.  In all likelihood all that would be gained is a clearer understanding of whether or not Joanna and I would have another child born with this condition and/or what Jude's chances of passing this trait on are.

So the question then becomes, do Joanna and I want to know the odds of having a second child with microphthalmia and further, what does that number really mean?  In the same line of thinking, are we open to another child and another child with this potential unique need?  Whether we openly stated it to each other before, the answer has been yes for all of our pregnancies, and will continue to be yes.

Together we concluded a few things.  If we have another child, we don't want the decision to be based on a medical test of odds and chances.  We are not ignoring medicine and science, but rather acknowledging its limitations.  Science and medicine are not at the point where they can map a person's life out.  So you rule out one thing, are you going to be mad if your child is born with something else or develops a condition in the years to come?  The fact is, you can't test for everything.

A second consideration for us: are we conditionally open to life?  If we answer yes, what are we saying about Jude, his dignity and his potential now living with microphthalmia?  And third, we both prefer for Jude to make the decision later when the time comes with regard to his children.  Maybe he'll want to know his chances of passing this to a child.  Maybe he'll say, why does it matter?  But, it should be his decision.  This will be an ongoing discussion.

I want to stress importantly that should someone in a similar position do genetic testing, they are not wrong to do so.  This is a personal decision for our family where we own no moral high-ground, and one can be just as open to life and choose to do the opposite for great reasons.  For us and for where we are now, the results simply won't change our approach.

Post-script

I would be remiss if I did not mention the integration of our faith in our approach to this topic.  As Catholics, we embrace our role as active creators in God's kingdom.  Created in His image and likeness, we too create out of love.  This gift of creation comes with the responsibility to act within the realities of our existence and with our actions' consequences.  Science and medicine are important tools that should not be ignored in arrogance of faith.  But total reliance on science is similarly impractical.  I think our approach and faith marries the two.

St. Jude: Pray for us.

Wednesday, June 20, 2012

Post-op

30-second update:  Jude did great and had the full cyst removed from his right eye and had one conformer placed in his left socket.  No conformer was placed in the right eye yet.  We will wait for healing internally for that.

Our morning began early as expected with a 3:30 alarm to nurse Jude one last time before he was asked to keep liquids out of his system.  I'm not going to take much of that credit, however.  We both got out of bed, however, at 4:30 to get ready to be out the door by 5:15.  Thankfully Grampy came by to watch the sleeping older brothers in our absence.

The highways were nearly empty making the trip easy and pretty quick.  Our car was among the first to park in the same day surgery lot at Children's Mercy.  We checked Jude in at the registration office and waited for the process to begin.  Shortly after we were called back to go over paper work, meet with the doctor and assisting techs and prepare him for surgery.  We were all pretty calm at this point and Jude napped through most of the prep work.

Jude getting love from Mom
After he was cleared for surgery, we had to hand him over to an OR nurse and head down an elevator to a waiting room for families of patients.  This was difficult because you, as a parent, want to be at your child's side and know you can't during such a procedure.  In the waiting room we tried to keep busy reading the newspaper and watching TV.  Several other families began to fill the room as we waited.

One receives several calls from the OR as you wait down stairs.  "Jude's mom?" the receptionist would call out.  Although you trust things are going fine, when you put your ear to the phone you hold your breath until you hear them confirm what you know in your heart.  After about an hour and a half the doctor came down to tell us about the surgery and Jude.

He met us in a small room joining the waiting room and told us they were able to successfully remove the cyst inside his right eye socket.  Putting his thumb out before his face, he compared the size of the cyst to his finger.  What an impressive cyst for such a small little guy.  We both believe, if not painful, the cyst was likely a discomfort to Jude throughout his early days.

Jude in his little gown
Once Jude recovered, we got another call to say come on up and see your son!  We were both anxious and hoped that he wouldn't be in a foul mood after such a procedure.  The nurses brought him out and, aside from being rather sleepy, he seemed good.  His right eye has been bandaged over and there are stitches on the inside of his lids, which you and I will not see and should dissolve on their own.

He had only one conformer placed, the one for his left eye.  We initially thought he would have both put in, but his right eye needs time to heal before a foreign object should be placed near it.  Before he could be discharged, the nurses wanted to see that Jude could swallow and his pain was manageable.  Although he did not nurse well, he took some sugar water nicely and we were almost on our way.

From the sounds and the smells we were again reminded of Jude's first few days in the hospital.  I had a sense memory in the post-op recovery area, smelling some of the sanitation liquids, which took me back to a time of great unknown and worry of his first five days.  I was glad to know we could go home with our sweet boy, filled with a more clear picture of Jude's journey and needs this time.

If you've made it this far you deserve this next paragraph.  So much of our strength comes directly out of hearing and reading the words so many of you have shared.   If you ask anyone who's gone through journeys similar to Jude's in their frightening nature, they'll tell you how easy it is to feel alone, even when it's not the case.  Thank you to those who have verbalized their thoughts to us and shared through word support.  These are the acts that stay with us, energize our spirits and burn joy onto our hearts.

St. Jude: Pray for us.


Tuesday, June 19, 2012

Pre-op

Tomorrow marks another turning point in Jude's life.  He is scheduled for surgery in the morning to have the cysts removed from his right eye socket and have his conformers place.  We got the call from the pre-op nurse today and we'll be arriving at 6am.  It sounds like he'll be one of the first cases.  In preparation for the surgery he won't be able to eat after 3:30am.  I'll be setting an alarm for 3:15am to make sure I top him off before the deadline.  I am confident that things will go as planned.

Since birth, Jude has, for the most part, had his eyes closed.  I am very comfortable with the way he looks.  So comfortable that when I visited a good friend, who just had a baby, and he opened his eyes it was almost surprising to see a baby with their eyes open. I have become used to Jude's appearance. Tomorrow that will change when the conformers are placed. I think once he has the conformers his eyes will mostly be open. I wonder if I am ready for that. How will his look change? With the conformers being a clear acrylic material, what will I be able to see when I look at the conformers? So many question on my mind that of course will be answered after surgery. I am sure though that after a few days, just like when Jude was born, I will be comfortable with his look.

So, while you wake up tomorrow and are preparing for you day please say quick prayer for Jude and his parents.

St. Jude pray for us.


Sunday, June 17, 2012

Father's Day

When you have children you love and who love you in return, any Father's Day is going to be special. The same is true if you love your father.  I put the qualifications on the first statement because the fact of the matter is it's really easy to become a father.  It's not nearly as easy to be a father. Being a father often implores one to respond to the unplanned twists and turns of life, which are guaranteed to happen.  No father has a straight and easy path.

And it is for me, another special Father's Day where I celebrate, personally, being a father to three young boys.  Ultimately, there has been no greater role for me among some great roles of brother, husband, son, friend, as that of father to Peter, Thomas and Jude.  The biggest task I take under my arms is to prepare them for the challenges of fatherhood and help them grow to be a responsible man.  Equipped with these tools and the rest will come, too.

I would be lying if I did not admit that my job intensified at the arrival of Jude.  This has been a difficult few months where I worry for him and his future, pray for continued strength and attempt to focus on the gifts that will undoubtedly result from Jude's presence in the world.  My task, however, must remain the same to help guide him on his way to becoming a prepared father and man.

As with Peter and Thomas, I have no idea where the road will go for Jude.  Sometimes this brings tears to my eyes because I fear it might be a rocky one for him to walk.  But, joy comes when I know I can be with him throughout as his father. Together, we can meet the challenges.  I can't wait for the day, down the road, when he looks back toward me and says, "Dad, I'm good."  Every father's dream.

   

This song is for you, my Jude.  I hope the words ring true forever.  I love you and your brothers.

St. Jude: Pray for us.



Tuesday, June 5, 2012

An adjustment

May was a busy month with trips and doctors appointments to fill the time.  Jude continues to progress quite nicely through his therapies and he is on track for his June 20 surgery to remove the cyst in his right eye.  He had initially been scheduled to receive his first set of conformers a few weeks back, but because of the surgery, they have been pushed off to be done during the surgery.

Conformers are small space-fillers to be placed in his sockets because his natural eyes are simply too small, therefore his face would not form properly.  I liken them to braces for the teeth.  As your face changes, the conformers are replaced with new ones to ensure the proper form of the facial structure.  Because we are unsure of light perception, the conformers will be clear and thus an adjustment for us to get used to seeing.

Speaking of getting used to his conformers, to many Jude looks like a baby who sleeps all the time.  I can't tell you how many times we get asked how we can tell if he's sleeping?  It's so much easier now because we are learning his ways more and more and he is much more active during his awake hours.  When he tries to open his lids is when most people can see that there's something not quite right with his eyes.

The conformers will likely enhance this noticeable reality.  I am really struggling with being self-conscious for him.  When I am around friends and family who know he is without sight and understand his condition, I am comfortable, certainly.  But, when we are out in public and around strangers, I feel different.  Joanna and I were saying the other night how much we'd simply like to walk into every conversation, with everyone we encounter and say, "he's blind."  I just don't like the idea of someone looking at him wondering, what's wrong with that kid's eyes?

I know that I will get over the self-conscious nature of being out in front of new people, but it is something I am at least admitting.  Don't get me wrong, I'm not ashamed of him in the least.  We are proud of Jude.  I just don't like the idea of people trying to guess his condition.  That's human nature and certainly not a bad or mean-spirited thing to do, but I'm still getting used to it.

St. Jude: Pray for us.

Saturday, May 26, 2012

Last call

Much of the month of April you heard me asking for support for the Trolley Run, this our first year involved with the Children's Center for the Visually Impaired in Kansas City.  Since that time thousands of dollars, endless awareness and an overwhelming amount of good will has been collected.  Jude and his family are stronger because of these people who responded.

To many of the supporters I've had the chance to see and thank personally, I've tried to get the point across that we, the Nicksons, are indebted to these special friends forever.  And, should there come a time where they find him or her self in a moment of need, we hope to be able to respond in kind in a similar fashion.  We feel the Jude's Dudes team is an army that can flex a mighty muscle.  We are proud of this.

There are still people who wanted to donate or were unable to at the time of the run.  It is my guess there are some who have been following the story and have a desire to help.  Fortunately there is time through the end of May to donate to the team at this link and push us onward.  The services go directly to the children in need, including Jude, who is receiving weekly in-home therapy with sometimes two therapists at a time.  This is the result of your donation.

Next Thursday is my 30th birthday and for the first time in many years I am going to ask for something, because I know you've been marking your calendar:)  If you have an extra 10 or 20 dollars, consider donating to Jude's Dudes through the Trolley Run site.  The donation, of course, is tax deductible and can be measurable as you watch Jude grow and reach the potential we seek for all our children.

Last night I ran into a former student who, upon learning of Jude's blindness said, "I'm sorry."  This is certainly an appropriate response made out of care and concern, but I couldn't help but wonder what he was sorry for?  Blindness, although an obstacle in the world man has created, is not a path made of merely closed doors.  Joanna and I, the CCVI, and our supporters are opening doors for Jude and we should all take time to be glad for this.

I am glad to have support and I want more, if you're willing to take my hand.  This week I wrote a song for my friends, this journey and the victory we will claim at its end.  The closing line is "You'll find a fighting friend from this day on."  I truly feel this way.  When you stood by us, you gained support if and when the time comes.   There's still time to stand with us.


We Stand Strong by Matt Nickson

Verse 1
We will forever build a wall out of stone and brick and rock,
That no man shall ever crumble
Fear no force or fleet of stock.
Built high atop a mountain, the peaks will tower so,
And wear detractors down to shins and raise the mighty on their road.

Refrain:
Cause you stood with me when my road was raw,
And you gave your heart before I could fall.
Out of love you loved this song, and though the dance has just begun,
You’ll find a fighting friend from this day on.

Verse 2
This wall that stands for certain stands for all who cannot see,
And the heights atop this wall
Surrounds the likes of you and me,
For when we stand together, our fort it moves among,
And though we face a struggle, with you the battle's won.

Verse 3
This bridge we’ll build together will span a might way,
And bring with it its nature
To join us on our way.
For when we stand together, as one a body strong,
No force can come between us nor mute our victory song.

Donate Now: Jude's Dudes Trolley Run Site

Friday, May 18, 2012

The hard goodbye

Yesterday was my last day teaching for the 2011-12 school year, which also meant my last day as the school's yearbook adviser.  For six years I advised the book and worked with many great students in the process of building a lasting memory.  I am proud of the work we put together and the people who helped make it.  Opportunity and desire led me to a new role for the upcoming year, marking my end at the book's helm.

The year proved to be more than your typical transition from one position to another.  Not only was I professionally transitioning, our home life was too with Jude's arrival.  Doing both in front of students can be uncomfortable.  I knew the first day back after Jude's birth would be especially unique, as most of my staff members had heard about Jude and likely speculated how I might change.

I could feel the eyes of my students follow me as I walked into the classroom.  I never spoke of the situation, nor fielded a question about our home life, but their sensitivity was palpable.  The weeks to follow proved similar as many of my students joined Jude's Trolley Run team to my surprise.  Every time a student joined, at our next meeting, I'd quietly walk to him, extend my hand and simply say "thank you."  They'd nod their head and we'd get back to the book.

It made for the most memorable experience I'd have as adviser.  I really wanted to say thank you to my staff as we wrapped up our last meeting.  Thinking of how so many of them symbolically stood by my son's side and held me when I was weak, I couldn't say much, aside from an acknowledgement of a tough year and my appreciation for simply dealing with me throughout.  I couldn't have said much more without crying before these young men.

I felt the tables turn in my classroom for three months.  When once I thought the classroom to be a place where students could find comfort, it was me finding comfort through the care of my students.  The student-teacher dynamic was always maintained, but I found out a special lesson about the young men who populate my school and their capacity to rise to a challenge.

Thursday, May 17, 2012

Inevitable

We learned this past week during a follow up with the oculo-plastic ophthalmologist that Jude is going to need surgery sometime in June and it appears the cysts within Jude's right eye socket and around his eye are growing.  The cysts on the left have not grown and are deeper in the socket and therefore can be left alone.  We knew he had the cysts after our first appointment with the ophthalmologist at Children's Mercy but the question remained what the course would be as far as what/when something would need to be done.

The surgery is outpatient (thank goodness) but requires general anesthesia none the less, which is a bit scary especially with our soon-to-be three month old.  The plan is still to start with conformers (the beginnings of prosthesis for the eyes) for the left eye at the end of month and then to have a conformer placed on the right side during the surgery. 

Anesthesia is always a fear in young patients like Jude, but with this surgery another fear is that the doctor said he couldn't tell us exactly what they would do to remove the cyst until they were in surgery. Best case scenario they remove the cyst completely and leave the remaining eye intact.  Worst case they may need to remove part of the eye along with the cysts.  Knowing there is a possibility of light perception the idea of him losing any of that would be sad.

I feel more and more everyday that the life I am living is not my own but truly God's plan for me.  It goes back to my choice to go to Rockhurst University and then meeting my wonderful husband and deciding to become a nurse.  All of these choices which I thought I was making independent of others, were really part of my larger plan.  A parent from the CCVI, who I have yet to meet, but have been corresponding with via e-mail, told me about how she had "whispers from God" before she learned of her daughter's diagnosis and now loss of vision. 

I feel the exact same way with Jude. My freshman year of college I volunteered at Children's Mercy Hospital and became involved in many different activities with the children there.  My junior year I spent an entire semester at the Children's TLC building (which shares its facility with the CCVI).  My calling to become a nurse and share my passion and understanding for those who are ill and have special needs... The scare we had after Jude's 20-week ultrasound with the possibility of our child having a genetic abnormality... All of these moments that I look back on are "whispers from God" in which He was helping prepare me for the place I am today. 

St. Jude: Pray for us.

Saturday, May 12, 2012

My three sons

There's a wonderful Bible verse often referenced, fitting in our situation about children and what has been revealed to them, while hidden from the wise and intelligent.  It has never been more evident for us than throughout these first few months with Jude, as we've seen the beauty of unfettered love and acceptance from his brothers, Peter and Thomas, as we've struggled with 'what's next?' and 'why Jude?' questions.

At first, while Mom and Dad would stare at Jude, unable to get around his blindness and the possibilities of other health concerns, Peter and Thomas saw only good things in their brother and friend.  Granted, we've come a long way and don't dwell on Jude's differences as often as tempted, the boys add a remarkable centering presence in our house and family dynamic.

We had the occasion to meet parents of a child, now a young man, who also was born with microopthalmia, among other issues.  He was their first child and they later went on to have two more children, both of whom are normally sighted.  (His story is exceptional, but best kept for a later time.) Anyhow, as the four of us were talking I couldn't help but appreciate Jude coming third in our crew.

Jude was meant to be with us, and we for him, and we are richer for it, but we are also so much stronger by having Peter and Thomas first.  Jude's older brothers allowed us to learn parenting.  We were able to sweat the small stuff on them, in order to learn how futile this practice can be.  If we had to learn parenting AND blind parenting at the same time, I'm not sure we'd kept our heads!

I've said it before and it will continue to be something I remind anyone who cares, Peter and Thomas have been such a blessing to us.  Without them, I'm not sure we would have found as much motivation to keep the train moving or the wheels from falling off.  Their affection for Jude is a great model and inspiring, all the while reminding us how simple it is to love.


Saturday, May 5, 2012

A normal night out

Date night and free babysitters are always a great combination to celebrate.  Last night, we had an opportunity to take the kids, all three of them, to the CCVI for parent's night out.  The boys were treated to pizza and fun, while Mom and Dad enjoyed adult conversation and maybe even an adult drink.  This should tell you how rare it was!

We were so looking forward to the evening and throughout the day had referred to the night as an evening at Jude's school.  Peter was all in and Thomas, from what we understand, warmed up to it after we were gone.  As we walked in and dropped the boys off into their separate rooms, we were curious to see if the older boys, primarily Peter, would notice that this was a special school.  The rooms were filled by children with visual impairments, other disabilities, along with typically developing children, too.

Now we have talked with Peter and Thomas about Jude's lack of sight and they are used to cuddling him and announcing their presence as they hug and kiss him.  I can't imagine even Peter though, at close to 4 years, grasps the breath of blindness.  But, we intend for it to simply be a matter-of-fact thing in our house; simply another thing that makes our house, our house.

It was important for us all to see older children, further along on their journey with visual impairments last night.  To be honest, Jude's parents will have to do more adjusting to these special needs at our respective ages than his older brothers ever will.  And, we love that.  We love that Peter and Thomas will know Jude, not as unique, but as Jude.  We love that they will see a child or older person on the street with visual impairments or any number of things, and just say, that's fine, my brother is blind, too!

We got home after a successful night and couldn't help but ask Peter, subtly, if he had noticed the special nature of Jude's school.  "No," he responded.  The kids all liked pizza and all played outside and seemed to all have a bunch of fun.  He did add, however, putting a rattle to Jude's hand, "This is how you should hand a toy to Jude, Mom."  We were beyond impressed.  And, it's just so normal.

Tuesday, May 1, 2012

How Jude became Jude

I'd like to tell you a little bit about our son, Jude.

We introduced Jude, formally, to the public on the morning after his birth on March 1 and celebrated his two months this past Sunday.  Over the last eight weeks he has made such a difference in the lives of so many, raising awareness for people with visual impairments and benefiting the Children's Center for the Visually Impaired.

Although he has only been here for two small months, we have known him much longer.  As is typical in most pregnancies, the 20-week point is usually accompanied by an ultrasound at the doctor's office.  Joanna and I took Peter and Thomas to find out if they were going to have a sister and us a daughter or if we'd again have a son, and them, a new brother.

Well, the secret is out.  We had a third son.  But, the Jude who you know today was actually going to be Joseph the morning of the ultrasound.  During this routine ultrasound, the technician noticed a calcium buildup in one of the ventricles of Jude's heart.  Joanna's doctor told her that she would need to follow up with a specialist to get a more detailed ultrasound because this buildup can indicate chromosomal abnormalities, such as those found in Down's Syndrome.

We were sick to our stomachs that evening, worrying about our son and praying that he was okay.  The appointment would not come for another three weeks.  But, the next morning we woke up, and decided we would not be held hostage by this fear.  Neither Joanna nor I could last three weeks frozen by what we could not control.  We had to offer it up.

That afternoon, after work, I drove to a local Catholic bookstore.  We had recently bought Peter and Thomas small pewter statues of saints after whom they were named to place in their rooms.  I entered intending to purchase a similar statue of St. Joseph to place on our nightstand to remind us this situation is largely out of our hands.  They were out of St. Joseph statues.

Rather than leave empty handed, a statue caught my eye, one of St. Jude.  I picked it up, read the prayer of St. Jude and knew this would be our son's name.  For those who don't know, St. Jude is the patron saint of hopeless causes.  And although we know now and knew then that the situation was not quite a hopeless one, the prayer resounded in us and replaced the pockets of fear with rays of hope.

We eventually went to the specialist and he was able to largely rule out the initial concern of a chromosomal abnormality.  But, not before Joanna and I were forced to examine our role as Jude's parents and see Jude's needs as our child.  If God could lovingly create me, a man full of flaws and warts, there's no reason I could not fully embrace my precious son, no matter how he is formed.

It is true that we had no prior indication that Jude would be born blind.  This came as a total shock for us and our loved ones.  I look at the 20-week ultrasound and the calcium buildup, completely unrelated to his blindness, as a true moment of God preparing us for a different journey.  There's really nothing better than feeling as though you're peacefully resting in the palm of God's hand.

St. Jude: Pray for us.

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 JudesDudes.org.  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!
Details:
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
MNickson@Rockhursths.edu
or 
Theresa Fessler
TFessler@Rockhursths.edu

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.