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.


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.