Wednesday, June 20, 2012


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


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.