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.

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


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.