Friday, March 30, 2012

3 is greater than 2

Millions of mothers have done it before me and millions of mothers will do it after me but having three children is challenging!  I remember after having Thomas I felt so much more efficent as a mother.  It seemed as though I was more organized and was able to use my time wisely.  This time around I am a mess!  About a week ago I was standing in the middle of the kitchen surrounded by three crying babies and all I could do was think "Get it together, Nickson!"

I was talking to my mother-in-law (a mother of 5 herself) on the phone telling her about how I was overwhelmed and she informed me, through her experience, having two kids your work doubles but beyond two the work grows exponentially.  I could not agree more, especially with 3 at 3 or under!

With Jude's special needs it can make things even more challenging. Take for instance the other morning when we were scheduled for a home visit by a Johnson County child service.  No sooner did the therapists walk through the door did my calm and cooperative children turn into unrecognizable child-sized demon babies!  Peter began to scream and beg for a cookie (at 11am!), Thomas needed to be held (he's a giant!) and Jude decided he was still hungry (I had just fed him!).  As tears began to well up in my eyes, I swore to the visitors it's not typically like this.  They assured me this was nothing out of the ordinary.  But, as the mother, you can't help but feel embarrassed and helpless.

Adding to the chaos is Jude's lack of sight.  He seems to be having a different experience as a blind newborn than our two older boys before him.  I find that he needs to be held constantly (making the sling I bought very beneficial).  When I set him down and he doesn't have that touch or sound close I wonder if he might be scared or at least feel alone, which he doesn't like.  And unlike my other boys, he can't look around and be stimulated by things like a playmat or his older brothers or the dog. 

Don't get me wrong, being a mother of three is so rewarding!  I just love the different stages each of my boys is at and there are so many moments of pure joy.  But let's be real, thanks goodness for grandparents and the bowl of ice cream at the end of my day when the boys are fast asleep! 

Wednesday, March 28, 2012

Completing the picture

Once Joanna and I were able to bring Jude home, it became apparent that we would need to adjust ways we had previously been able to parent with Peter and Thomas.  Jude, being without sight, would not be able to perceive some of the actions we otherwise take for granted through vision.  For instance, a child begins to recognize Mom and Dad and thus knows who is picking him or her up early on.  Jude won't visually recognize us to know whose arms he's in.

Joanna had an opportunity recently to speak with a social worker from the Children's Center for the Visually Impaired, the organization which happens to be the benefactor of the Trolley Run (more on that later).  But, she gave some great tips to help Jude fully understand our family and feel comfortable with our day to day routine.  The term she used was really awesome, I thought.  She said, "complete the picture" for Jude.  When taking a bath with his brothers, say to Jude, "Do you hear your brothers splashing in the water, Jude?  That's part of bath time."  

How great is that?  When we pick him up or pass him from one to the other, we have to be very intentional about telling him what is happening.  A child without sight can become quite scared if, by their perception, they are simply swooped into the air magically and without warning.  Joanna says we need to "cue" Jude to these actions.  These cues will allow for Jude to understand how the world proceeds around him and with him.  "Jude, I'm putting a toy in front of you," for instance.  We don't need him thinking toys appear out of sheer desire!

If you haven't yet, please consider donating to Jude's Trolley Run team: Jude's Dudes. 

St. Jude: Pray for us

Thursday, March 22, 2012

Mommy's alright, daddy's alright...

I remember how overwhelmed I was when our first son Peter was born.  At 26 years of age, it all of a sudden hit me as I held this new precious life in my arms.  Everything I knew as normal would change and a version of me would have to disappear if this new life was to fully integrate into mine and thrive in the world.  There were many moments of fear, needless to say.  I questioned myself about being a good father, supporting this child and giving him the best.

Soon enough these fears would subside as days began to pass and the realization of my comfortable existence within this new normal emerged.  How quickly we forget our fears and cautions as normalcy begins to overshadow the daily grind.  But, there is a learning curve only remedied by time.  It's funny to look back five or ten years and say what did I do with all that extra time or money or whatever?  And better yet, what was I so worried about?

Jude is really no different than Peter or Thomas before him in terms of forcing our family to adjust and get on with it.  His specific challenges might be more unique than most and new in scope for his parents, but I am confident we all will settle in.  Just like with Peter, there are fears of the unknown.  Will I be able to give my son the best?  Will I be a great advocate for his needs?  You tell me how this is different from any other parent's role?

St. Jude: Pray for us.

Tuesday, March 20, 2012

A quick update

There is a much longer version of this story, but considering I have so many friends and family interested in knowing today's results, it will have to wait for another time.  As many of you know, Jude spent the first five days of his life in the NICU and underwent an MRI, an ultrasound, countless blood and hormone tests and a battery of other evaluations.  Neurologists and an opthamologist examined him and radiologists studied his MRI.  Just when Joanna and I felt dang it, the other shoe is going to fall, Jude would come through with flying colors.

Needless to say, the stay was an exhausting experience for any parent, much less parents with two other sons at home.  Thankfully we had great support through our parents who physically cared for the older boys so Joanna and I could be with Jude as much as possible.  If you've never experienced a NICU from the inside, it presents far more complications than the mother-baby units in terms of what it allows and restricts. Again, a topic best kept for another day.

Today was really stage two of this process as we were filtered into the Children's Mercy system locally and met with some of the best doctors in the metro, all specializing in pediatric care.  Although we were discharged from the hospital after Jude's birth with optimism, there were some things remaining to be settled.  Jude's initial diagnosis was and remains bilateral microopthalmia.  This is a severe underdevelopment of the eye, in this case, both (bilateral).

The morning began with a visit to pediatric neurologists, who reexamined his MRI and did a physical assessment too.  He, thankfully, continues to check out just fine in this department, but as we are reminded his brain is still young and development (which is evident) is different from function (which an MRI doesn't truly speak to).  There are no indications to say he is not healthy neurologically, but there seems to always be a fear when a major organ (the eyes in this case) are mal-developed-especially one that connects directly to the brain.  

The optimism of the morning led to the tough realities of the afternoon.  The pediatric opthamologist shined a bright light into Jude's eyes to see if there was any light recognition whatsoever.  As was the case on day 2 of his life, there was no reaction.  We weren't under any impressions he was not blind, but hearing it was nonetheless tough medicine to swallow.  On a related note, Jude has been sleeping terribly at night.  The doctor confirmed this is a typical occurrence in blind people.  When you can't see or perceive light, your body can't get on a natural rhythm.  He will likely be prescribed melatonin to regulate his sleep.  

As we expected, we have been advised to meet with a pediatric oculist to fill the space in Jude's eye sockets so facial development will not be stifled.  We meet on Monday.  A growing concern of mine is something that was acknowledged, more so in passing, on the MRI: abnormal growths beneath and amid where eyes would typically sit.  They may well prove to be no more than a medical nuisance, but they are concerning as the opthamologist consulted a partner on them, who said he'd never seen them before in a baby Jude's age.  Again, there's no reason to assume this is anything bad- aside from the space they are taking up which will be needed for the eventual ocular conformers or prosthetics.

And finally, we were advised again to consult a geneticist, whom we thought we were supposed to meet today- but turns out that was not in the works.  This is the part that troubles me the most, probably mostly because I didn't pay enough attention in science classes in high school.  But, the doctor cautioned, as others have said before, broader genetic syndromes are often found when something like bilateral microopthalmia takes place.   This took the wind out of my sails after a good neurological appointment.  Joanna is much more optimistic, and probably more reasoned than me on this.

In summary, we have taken two steps in our new shoes down our new path.  There are 1,999,999,998 steps yet to take.  The more time we spend in hospitals and with doctors the more we learn to change our expectations from the doctors.  Don't get me wrong, we have absolutely loved the individual physicians we've worked with, but no one in the health profession can or will say, "He looks great!"  Every time he looks pretty good, they say, "But, I'd still like you to talk with this specialist..."  Aside from the eyes, they haven't found anything to state otherwise and if/when they do, we'll go from there.

As always, pray for Jude.  Pray that he continues to grow strong and thrive at home.  Pray for his brothers that they will be great (as I know they are) to promote their brother's special gifts.  And, pray for his parents (especially this guy) that they will be steadfast in their fight for Jude's best interests, until Jude is strong enough to assume the fight himself.  St. Jude: Pray for us.  

Sunday, March 18, 2012

To Jude


We are looking forward to using this blog to share the experiences of our family as we navigate through this new terrain.  Join us!

Eventually our hope is that this blog becomes a sort of love story to our entire family, especially our son, Jude.  Something unique and special will continue to take shape, with God's hand.

In the meantime, we are (for the first time) getting involved in the Trolley Run.  This annual race helps fund the Children's Center for the Visually Impaired (CCVI).  We are going to need friends for this race and well beyond.  It starts now.

Trolley Run Link for Jude's Dudes

Join the team as a runner, donate or do both!  Please feel comfortable to pass this link on to others to gather more support!

St. Jude: Pray for Us

Saturday, March 17, 2012

Jude Timothy

Who is Jude?

Jude and dad

Hello and thank you

Over the last two plus weeks, Joanna and I have received an overwhelming amount of support from our friends and family.  We have cried and shared laughs with some terribly special people.  From the moment that our son Jude was born blind, the equation quickly changed from a two-person operation to an obviously larger need. 

If you are one of these people who reached out to us personally or kept our family in prayer through this period, I can’t begin to express how much good you’ve generated in our hearts.  We are deeply moved by each act, known or unknown. 

Joanna and I are in the process of sorting out our thoughts and questions about our son and what his future needs will entail.  Tuesday we meet again with specialists, and this time at Kansas City’s renowned Children’s Mercy Hospital.  Needless to say we are anxious and cautiously optimistic we will receive a bright roadmap for Jude.

But after this appointment Jude and our family will have a long and unknown journey.  And while I am comforted in knowing that all will work out no matter the prognosis, the fear of the unknown is quite daunting to me.  Admittedly, this pulls at the hearts of Jude’s parents.

If you have lent support one way or another, know you are starting or continuing something powerful that will ripple beyond Jude’s needs.  We will continue to ask for your prayers and support for years as we navigate new territory.