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Thursday, December 19, 2013

Love

Immediately after Jude was born Matt and I had an unspoken agreement that we could not have anymore children. We were uncertain of Jude's future and his needs at the time and I think we both agreed that another child would be too much to handle or unfair to Jude in some way. Not that we were closed off to more children, but finding out your child has a special need can be very overwhelming.

Skip ahead a couple of months when we were more aware of what Jude's health and development would entail and we decided there was no way we could be done having children. It would have been unfair to Jude to not try for more children.

The end of November came and sweet little Simon joined our family.

How would Jude know what a baby was? How would Jude bond with his brother? Before Simon arrived we had a baby doll out for Jude to explore and he learned to say the word baby, but we were unsure if he actually understood what was going to happen, that a new person would be a part of the family. 

All of Simon's brothers love him dearly, especially Jude. Witnessing Jude's love for Simon is magnificent. The afternoon Simon was born Matt brought the boys up to the hospital and Jude instinctively sat on my hospital bed waiting to snuggle his new brother. He held and kissed him from the very first moment he touched Simon. 

Jude listens intently for his baby brother's grunts, groans, and cries, finding him wherever he may be throughout the house. Jude smothers him with slobbery kisses all over his head. Jude rests his head and body next to Simon just to be close to him. Watching the two of them melts my heart.



Loving is blind. We do not need to see in order to know who or how to love. Jude's love for Simon is a beautiful example of God's love. 



St. Jude: Pray for us.


Saturday, November 9, 2013

Beep boy

Jude is no different from his brothers before him.  Jude hears the fun sounds his brothers' activities create and he too wants to laugh and scream in excitement.  Jude is no different from any other little boy his age when it comes to being active and playing with others.  Unfortunately Jude is different and at a major disadvantage when it comes to how these games are designed.

As Jude's dad, I've been sensitive to this reality since his birth and diagnosis.  His mother and I never want there to be two worlds in our house; one world for sighted play, where Jude sit unaware on the sidelines, and a second world where Jude plays his games without the interaction of others.

Recently Jude has become much more active and his interest in joining his brothers at the park or in the backyard is apparent.  He will hear their ruckus and run toward it with a squeal of delight, propelling his body into the pile.  The older boys do a pretty good job including and extending offers for Jude to join.  Fortunately most games our older boys play devolve into a form of wrestling- which Jude loves.

In the early fall we began playing a form of hide and seek in the backyard we call "beep."  Simply put, Jude has to chase the beeps our voices create until he gets each one of us.  Jude's sound location is strong and the game gets him running and worn out.  Judging by the smiles on all our faces, the game is fun for all.

The Children's Center for the Visually Impaired gave us our first beep ball the other day.  The ball, as you might assume, has a button to trigger a loud and constant beep.  It is sturdy material and can take a bit of abuse from throwing and kicking and rolling and bouncing- we've discovered...  And, it's created some fun afternoons for us.

Like the game "beep" we play a game with the ball, attempting to localize it by sound.  This new game is a kind of keep away, where one person rolls the ball away from the group.  Jude is told to find the ball, while I attempt to keep the older brothers away from it by blocking them.  If Jude gets to it before the boys, Jude "wins" - meaning I throw him up in the air, which he loves.

Keeping Jude active is a focus of ours.  But, in front of that focus is keeping Jude in the game when he can, especially with his family.  Just as I have memories of playing with my family, I want Jude to create his own.  So far so good.

St. Jude: Pray for us.

Saturday, August 17, 2013

I'm right behind you

A new and exciting game Jude has recently insisted on playing is a rather dangerous one, too.  Jude explores, and a specifically fun area of the house to explore is the staircase.  He does a great job navigating our home and knows all the routes, including those to and from the stairs.  Going up the staircase seems to capture his attention in a unique way.

In many ways, watching Jude go up and down the stairs is a comforting sight.  He needs this skill if he is to rightly maneuver his world, and his achievement in doing so was seen as a milestone at first.  But, now, his summit is seen simply as a daredevil tempting fate.  Part of our fear as Jude's parents is in the far fall awaiting at the base of the stairs.  Jude sees, and until he experiences, knows, none of the fall.

In attempts to gauge how independent Jude truly is, I will tip-toe or follow quietly behind him as he ascends the steps.  Alone, he plays.  Up two, then down one, and on and on.  All the while I watch with arms at the ready, unannounced to the happy little climber.

The game becomes really interesting when no more steps remain in his climb.  It is at the point in which he reaches the top, the highest point to fall from, where Jude usually stands up, claps for himself, and begins to teeter backwards.  And as only one's parent can, I wait for him to realize he's gone too far and is falling out of control.

It is here where I reach my arms out, before he falls too far and becomes too hurt.  In this, Jude realizes his dad has, for the moment, stopped the fall and, at least temporarily, saved the day.  My presence is known so I make the best use of it, by reminding Jude how dangerous stairs can be and how he'd better remember to go slow.

On the occasions that I've caught Jude from certain fall, it's often been my prayer that God follows in a similar way behind my movements.  I believe he allows me to move freely, make decisions for myself, and even begin to lose control.  And, at that point where nothing stands between me and life's crashing fall, he catches me, gathers me in, and reminds me to go slow.

St. Jude: Pray for us.

Thursday, May 9, 2013

It's all good, again.


Surrounded by friends and family, Jude walked through the finish line at the 25th annual Trolley Run.  The moment can be described no less than magical.  We are constantly surprised and pleased by the progress our son makes on a daily basis.  Behind each advancement is the good work of so many, including the supporters of our Trolley Run team, which makes each step a communal step forward and each milestone reason for us all to smile.

I would like to say that I was surprised by the outreach of support and good will by Jude’s supporters.  But, having experienced a similar outpouring last year, we were not.  Don’t confuse lack of surprise with lack of gratitude, though.  Last year opened our eyes to the goodness that lives in the hearts of our friends and among our community.  Nevertheless, we were pleased and humbled through each generous act.  This year was so special, largely due to the special people who made it so.

Our aim will continue to be on Jude’s tomorrow.  It is a happy struggle and one in which we are fully invested.  And surely it will be a winning fight.  The story of success will not simply be that of Jude or the other children benefiting from the Children’s Center for the Visually Impaired.  It will be our story, together, one visible as Jude ages and continues to amaze.  Take heart, as you have done great things. 

Thank you.

Matt and Joanna

St. Jude: Pray for us.

We would be remiss if we did not recognize agencies that supported us during this campaign by providing locations for fundraisers and promotional support.

Lamar Advertising
Chick-fil-A State Line Rd. 
Papa Murphy's Pizza
Chipotle Mexican Grill

THANK YOU ALL!

Thursday, April 4, 2013

Letting my child fall... for good

What parent doesn't love to simply watch his or her child at play?  How hard I will try to quietly sneak up on one of my children, as he entertains himself with a new toy or funny imaginary game.  But, the effort is too often ruined once my presence is noticed.  Sure enough the moment ends, and the child's attention moves from the game to me, the parent.  Oh, bother.

Jude allows his mother and father such a wonderful window into the private world of a child's play; the uninterrupted one- where it's just a child, his imagination, and the enjoyment.  I'll find myself quietly watching my son as he discovers his world, feels new things, tests his limits, all while, unknown to Jude, I sit in observation.  It is a blessing to watch him expand his understanding.

For the past two months, Jude has really been moving around the house; exploring all the rooms and learning the lay of the land.  He has favorite rooms he moves toward.  He knows where our piano is to strike the keys with his tiny fingers reaching high.  Incredible is a fitting word for it all.  Although he does not see his world, he loves his dance within it.

This type of exploring is so important to our son.  Where the sighted child will learn through observation the ways, reasons and risks of the world, without necessarily experiencing them, Jude must feel them, smell them, personally, to give word and meaning to them all.  Therefore he must fall today, bang his head and as nasty as it sounds, put the dirt in his mouth.

This is a difficult task as Jude's parents, as all parents take the pains of his or her child on their shoulders and shares these hurts with them.  As tough as it can be, though, to watch our son fall or knock his head, we know protecting him from the realities of his world will only temporarily shelter him.  It is our belief falling today will keep him upright tomorrow.

St. Jude: Pray for us.

Sunday, March 24, 2013

Today's battle, tomorrow's victory

Many uncertainties surrounding Jude have subsided.  And, it appears an early fear of ours- Jude's brain development and abilities- were not affected by his microphthalmia.  Daily we observe him communicating verbally, moving around the house to explore his environment and enjoying his brothers' company.  We experience and rejoice in these blessings at every turn.

Admittedly, we feel as though we've dodged a bullet in this regard.  Judging by the tests initially administered on our son, we easily could have been dealing with additional diagnoses.  As it is, blindness is Jude's obstacle.  And while we feel fortunate in many regards, blindness happens to be a huge obstacle in our world today.

So, on one hand we take comfort in this, and on the other, we live with the reality that we must prepare a blind child to become an independent, self-sufficient man without sight.  Even though our son is healthy, I would consider our present state critical; where time not won is wasted.  Why so dire, you might ask?

Sighted or not, the first few years of a child's development are the most crucial.  It is in this stage that a child develops the basic abilities which off of all other abilities build.  Children in this time, largely through observation, will learn the social norms and rules of their environments.  No one can underestimate the power of learning through our visual experiences.

Now, take those observable experiences away, and here you have Jude's greatest challenge as he develops: learning how to interact and coexist with the sighted world.  Each morning, Joanna and I wake up aware of the opportunities held in a new day.  This means investing more time into our routines, just so Jude doesn't miss what is otherwise observable to you and me.

This is where the Children's Center for the Visually Impaired comes in.  A parent's love can only do so much, and among the hardest things Joanna and I have had to admit, is the fact that we alone are not equipped to provide Jude all he needs to flourish.  But like a parent depending on a physician to save his or her sick child, we lean on the CCVI and its expertise to uplift our Jude-boy.

A year ago I pleaded with you to consider donating to or joining our Trolley Run team because we had no clue what the future held for our son and his abilities.  Today, with a clearer understanding of Jude's diagnosis, I make an ever more impassioned plea; this time because I've seen his future.  And, if I ever doubted it before, I doubt no more that his life can be beautiful.  Jude's life can be full.  Truly, it hinges on today and this moment and the next.

Join us, won't you?

St. Jude: Pray for us.


Saturday, March 16, 2013

Just one moment

I've seen in movies where loved ones separated by death are again reunited for a fleeting moment in time; where life and death is no longer the barrier.  They meet only to share one more touch, one more kiss, one more "I love you."  One more anything is all that is needed to satisfy the other's memory for the rest of time.

I dream of Jude seeing me, even if only to know my smile, to have a reference when hearing me laugh, when I say, "I love you."  It's a fantasy of mine, that he and I will meet, with his mother and brothers, too, and we can all gaze on each other, knowing he's gazing on us- even if for a moment.  However unfair my dream is, I can't help but have it.

There's a beautiful YouTube clip of a young woman who hears for the first time at the age of 29.  Her reaction to the sound, even the simplicity of beeping, is so powerful.  Acknowledging sight and sound, although both being senses, are remarkably different, I can't help but think of Jude when I see the video. Not because I think there's a technology around the corner ready to give him sight, but because I wish there was.

We haven't spent many of our days as Jude's parents dwelling on things we can't control and likely we'll continue to focus on that which we can, but like most people, we've got our wish list, too.

St. Jude: Pray for us.

Please consider donating to our Trolley Run team. Simple and small donations build to greatness.  

Sunday, March 10, 2013

Finding the special

Sometimes the special has a way of finding me.

I was home Friday, while Joanna worked and the boys slept, and I turned PBS on to wind down for the night.  Attempting to do a couple things at the same time, the television content proved little more than background music at first.  Our local PBS was airing a concert of famous Italian opera singer Andrea Bocelli.

Bocelli's voice was great and I looked up to watch him share a duet with a female singer.  Mid-song the female singer kind of danced to the beat, as Bocelli just stood there motionless while she moved.  I thought that was a weird interaction between the two.  As I continue to watch, I keep noticing these "awkward" moments, so I decided to google him.

Forgive me for living the past 20 years under a rock, but I had no idea Bocelli, the man whom I understood to be among classical singing's elite, is also blind!  Admittedly I've never claimed to be a huge fan of his, nor classical music, aside from a general appreciation for all things beautiful.  Obviously my fascination was piqued.

It was a great feeling listening to a man, regarded among the best, whose blindness is considered an afterthought.  His voice and talent drew me in, rather than his disability.  To me, it proved what Joanna and I believe; the standard by which we judge Jude's excellence should be no different than any other standard of excellence.  Excellence is excellence.

Some further digging alerted me to the decision Bocelli's mother faced, while pregnant, when a physician encouraged the expectant mother to abort her child because he'd be born, likely, disabled.  Obviously she carried the pregnancy through to birth and her son, Andrea, stands as proof that disabilities equals not inability.

There are many more things I will never accomplish than I ever will, but no one will call me disabled, likely.  Jude, too, will find many things he is unable to accomplish.  In the end though, all we ask of our son, and it is what we ask of each of our children, is simply to accomplish one thing and do it, like Bocelli, excellently.

St. Jude: Pray for us.

Friday, March 8, 2013

Looking ahead

Today I was reminded, again, of how I am forever blessed to be Jude's mother.  Not for any particular reason, but every time I picked him up today and got a smile and a quick kick of the legs and jabber of excitement, I felt a sense of love and calling for my role as mother to Jude.

Parenting a child with special needs can be tough and yet ever so rewarding.  In many ways parenting Jude is the same as the way in which I approach parenting our older boys.  Love is the focus.  One difference, however, manifests itself in my concern for his future- in the things still so far off.

The thing is, parents of children with special needs are constantly thinking about the future for their child.  It is out of necessity and survival.  How will Jude do tomorrow?  How will Jude do next month?  How will Jude manage in preschool?  High school?  I find my mind jumping from tomorrow to his senior prom to his first apartment at a moment's notice.

People often remind me not to focus too much on the future and work in the here and now, which I do, often.  The truth is though, as any parent of a child with special needs will tell you, looking ahead is a necessity; today paves the road for tomorrow.  This moment and future moments really cannot be viewed separately; our goals for Jude in the long-term hinge today on our actions in the short-term.

St. Jude: Pray for us.

Thursday, February 28, 2013

Happy day, son.



My audio letter to our beautiful son, Jude, on his birthday.

St. Jude: Pray for us.

Tuesday, February 26, 2013

The burden

Jude will never see.

I will forever know what Jude will never see.

Matt and I, Jude's parents, will always know what Jude is not seeing.  We will look out the car window and point out a fire station and know that he will not see it.  We will go for walk on a beautiful spring day and know that he will not see the blue sky and blooming flowers.  We will see the wall that he runs into.  We will see how other children react to his blindness.  We will always know what Jude is not seeing. 

Writing these words brings tears to my eyes, but that is the burden of parenting a child with special needs. 

We met a family with a daughter, now grown and in her 50's, who is blind, for an evening when Jude was 2 months old.  Her mother spoke openly about raising their daughter without vision.   She also pointed out the reality of being a parent to a child with special needs.  "It will always be harder on you than it will ever be on Jude," she said. 

And because of this, fighting for my son to fully experience the sighted world like our other boys, while illogical to some, is as much about me as it is for my son.  Jude will never see a baseball game, but you better believe he will be every bit a part of the Nickson family MLB stadium tour.  And he will never drive a motorcycle, but you better believe he will be riding in Grampy's sidecar. 

Jude might not experience activities the way you and I would, but he will experience them, and not just for himself but for his parents.  For his mother, who needs him to be a part of these everyday activities and extra special activities because I know- I know what he'd be missing.  

St. Jude: Pray for us.

As we get closer to the Trolley Run, please consider a donation to our team in support of the CCVI and all of these special experiences.  And, Feb. 27th we will (weather provided) hold a fundraiser at the Chipotle on Main St. near the Plaza.



Friday, February 8, 2013

Give me dignity

I used to go over to a childhood friend's house and play after school.  Elliot and I would run around building forts, capturing ghosts or climbing trees, like many little boys.  No matter what we did, his kid sister would poke her head into our action and we'd yell to Elliot's mom, "Get her outta here!"

Elliot's sister had Down syndrome. I knew little about the condition at the time.  To me, at the age of 6 or 7, she was just another annoying little sister.  This is my first memory of experiencing special needs in another.  I have since had several deeper experiences which include a close family friend, also born with Downs, and an extended service project among children with disabilities.  

What I did not know about Elliot's sister until much later was the story of her birth and the offer her parents received thereafter.  My mom told me Elliot's parents gave birth to his sister overseas, in Europe.  To their surprise, their daughter was born with the chromosomal abnormality.  They were saddened and confused.

Hospital officials came to their side and offered to help them out, thinking these parents, unprepared to raise a child of such needs, would be at a loss.  But, the offer for help was refused by Elliot's parents.  You see, Elliot's parents would not allow the hospital to take their daughter and send her away to be infirmed for life and never be seen by the family again- as though she never happened.

This story has stuck with me since I heard it and took on deeper meaning after Jude's birth.  It highlights a reality in our world today, where the disabled are sometimes viewed as the inconvenient, where children must fit into their parents' plans.  There are cultures today that would have cast our Jude aside, maybe to an orphanage or worse, because of the "burden" he'd be on his family or community.

And, it is with this in mind, that I remain thankful Jude was born to his parents, is loved by our family, and supported by our friends.  We will never face the decision Elliot's parents faced, but we continue to keep up the fight for his dignity to be recognized and embraced.  There's nothing to cast off here.

St. Jude: Pray for us.

Friday, January 25, 2013

Trolley Run lead up

As you likely are aware, our family will again be participating in the Trolley Run.  Because of the tremendous support received last year, we are brainstorming new ways to show our appreciation for your generosity, and have a good time in the process.  I'd be lying if I didn't say I feel some pressure off last year's heels.

For starters we have organized some exciting opportunities from local restaurants to help Jude and the CCVI.  Papa Murphy's, Chipotle and Foo's Frozen Custard have each agreed to donate proceeds to the Trolley Run team with nightly fundraisers!  Rest assured, no one will go hungry for lack of good food throughout.

We have set a lofty goal this race for the money we hope to raise and the amount of people we want to join our team.  I may regret setting such high numbers.  A small donation might seem like nothing to you, but, I can tell you, it means the world to our family and to the Children's Center for the Visually Impaired.  The need remains.

I also hope these opportunities below are taken advantage of and your schedules allow.
  • Papa Murphy's Pizza: 3 Locations, February 1-3 (click on link to download flyer)
  • Chipotle (Plaza) Tuesday, February 26
  • Foo's Frozen Custard, (Leawood) Spring '13
  • Chick-fil-A, (Ward Parkway) April '13
  • Our Trolley Run link to donate or join: Jude's Dudes
  • Other opportunities coming!
Our goal is $10,000, which is an incredibly high amount, I know.  After all, where do low expectations get anyone?  I encourage the sharing of Jude's story, these opportunities and of the race.  As always, we're grateful.  

St. Jude: Pray for us. 

Saturday, January 5, 2013

Dream on

At the point Jude was released from the hospital and came home to join the family, Joanna and I were under the impression our young baby would have a much different developmental journey from that of his two older brothers and we would be dealing with surprises and delays as a result of his blindness.  Not knowing what to expect, surely, we thought, he'd have a markedly different childhood from a sighted child.

The afternoon he came home, his brothers went outside as they do, and began to play their version of baseball.  Watching from the family room window I cried, lamenting Jude would never join their game.  My cry wasn't about baseball, but more about Jude's chances at normalcy.  The typically developing child hits certain milestones and performs acts that build off of others.  Would our son be stunted and delayed, producing issues beyond, and stifled by, his blindness?

Shortly thereafter Jude began receiving services from the Children's Center for the Visually Impaired.  Joanna and I, during a meeting with its staff, expressed our varied and confused thoughts about raising a blind child.  All through the confusion, one thing was clear to us though, we would expect Jude not be a great blind person, but a great person.  We have all, CCVI included, proceeded with that aim and understanding.

When friends and colleagues ask about Jude, I know they are often asking about how he is developing as a blind child.  I find my answers to be very similar, however, to those I would give of our other boys, proud of developmental milestones achieved.  Outside of a few visually stimulated milestones, Jude continues to plug along, and delays seem few, a credit to many.  Jude's CCVI therapists, whom we love, do an incredible job anticipating obstacles and equipping our family.

When I think about the fears and concerns we held during Jude's early days, they were mostly about his future and what it held.  Today, a large part of me can't wait to view Jude as a mature man, as my dreams for him expand by the day.  We are fully aware that Jude will face obstacles and likely will never hit a curveball, but who doesn't face obstacles?  And, between you and me, I can't hit a curveball either.

St. Jude: Pray for us.

ps: Please mark your calendars for the 25th annual Trolley Run, April 28!  We can't wait.  Many of you deserve credit for helping our Jude and other children who receive services from the CCVI.  Your continued support of the Trolley Run will be beyond appreciated.  More on this later...