Saturday, February 4, 2017

New and unknown, again and again

Dusting off the cobwebs…boy has it been awhile since we have written. I can’t even remember where we left off. I am pretty sure Jude was still a baby or a toddler. Now we are in the birthday month of him turning 5 years old!!

When I gave birth to Jude I was sent a link to a poem written by a mother of a special needs child about how giving birth to a child with special needs is like preparing for a trip to Italy but ending up in Holland. This was a very comforting piece to read at the time when I was coming to grips with what it was going to mean to raise a son who was born blind. 

I think what this poem forgot to tell us parents of special needs children is that you will have this experience again and again, maybe next week, maybe several years from now. You will learn to love Holland, the clog shoes and cafes in Amsterdam, but soon enough you’ll plan another trip. Plan for where you think you are headed, but end up somewhere unforeseen. Although this time you might be a little more equipped with knowledge and understanding, you can never really prepare for what raising a child with special needs will be- not to mention all the baggage you’ve accumulated… You are enjoying a beach with a warm breeze and calm waves, but you’re always wondering if your next destination will be the one you planned for or one unknown, only to learn about once you’ve already arrived.

Jude is nearing the end of his time at CCVI. We have been connected with the school since he was about 2 months old. He has been attending the facility since his 2nd birthday and this summer, after the extended school year, he will begin a new journey into kindergarten. I have said it a thousand times and I’ll say it a thousand time more, we would not be where we are today if not for CCVI and its marvelous staff and teachers!

Matt and I, since Jude was born, have had a desire for him to attend our local Catholic school, Cure of Ars, where we send Peter and Thomas. Being that Jude’s only deficit is his blindness we thought this goal would be very achievable, but we have planned a trip and landed ourselves in a place unknown. We weren’t fully aware of the great deal of support that goes into educating a child who is blind. Something like 80% or more of what we learn is visual and unintentional. In a classroom of 25 or more children, Jude needs lots of 1:1 support to learn and keep up with the pace of his sighted peers.

As the director of family services at CCVI told us, “it’s not that Jude’s needs are so great, it’s that his potential is so high.”  We have made the decision to send Jude to our local public school, located directly behind our house. He will receive all the services he needs, including a paraprofessional in the building with him at all times. We could not be more fortunate than to have had such a fantastic team at CCVI, a wonderful group of specialist to help evaluate Jude, and an incredible experience in planning his transition. The experience with CCVI and our local school district has been one blessed with those who share Jude’s best interests. For this, we are forever grateful! The hard work and dedication of all those involved with Jude has been nothing short of amazing. We are looking forward to our next journey with Jude as he enters kindergarten with the Shawnee Missions School District.

Several people have said that this must have been a hard decision for Matt and me. But, even tough decisions are made easier when you know it’s right.  We have always had Jude’s best interests at heart and we know that this is what he needs in order to succeed and become the boy, teenager and man we know he can be. 

Was it a heartbreaking decision? Yes, it certainly has been! For the first time, we had to say no, you cannot do something because you are blind. But, we also know, this won’t be the last time the realities of being a blind individual in a sighted world will be made known to Jude.

So here we are, at this new and unknown place.  And although, uncertain as it might feel, there is a sense of familiarity with it all.  There is a sense of comfort in knowing we’ve been unsure before.  For as we’ve found, we will learn this new place, grow to love it and thrive in it, with Jude leading the way, as he has always done.

St. Jude, pray for us.

Please join us in our final year fundraising for the Trolley Run before we pass the torch to the next families. We hope to have our biggest year yet in members for our team and donations. Every little bit counts and every share or “like” on social media helps to raise awareness of those who are blind and visually impaired, as well as helping maintain the success of CCVI.

Saturday, July 12, 2014

No M&M's for breakfast

It is understood that two year olds know everything and must perform any and all acts on his or her own term.  Just picture one who can't see a lick, but insists, nevertheless, on navigating his own world without the help of others.  Yes, this is the stage we find ourselves with Jude these days.

When I hoped and prayed for a normal life for our Jude, I must have forgotten that this too would include the terrible and tantrum-filled year of the two's.  These are the years that are among the most trying we've experienced with any of our children.  The constant and unpredictable battles test the patience of the best and prove bedtime can not come soon enough.

During this period the tasks and objectives for a parent must remain steadfast, nevertheless; equip one's child with the appropriate tools for successful independence.  Giving in to each and every tantrum's aim, surely won't help in this effort.  And, if anything, saying "no" to a developing child is among the earliest, most important lessons one can ever be taught.

Jude, through his blindness, is no different.  As special needs parents, our aim is no different either.  We need to equip Jude with tools to successfully live independently- in every way.  So, although it's a great step forward that Jude is able to communicate his wants and needs, it's another thing entirely to let him have M&M's for breakfast simply because he expressed a desire successfully.

How easy it could be to overlook social and developmental blunders or faux pas due to earnest attempts to work through Jude's blindness.  If we focus simply on the visual impairments or limitations, we limit his abilities to blossom as a full person.  I can't tell you how grateful we are to have some wonderful therapists in our lives through the Children's Center for the Visually Impaired reminding us of this task at each turn.

St. Jude: Pray for us.

Thursday, February 27, 2014

Jude's two

When parents say it's hard to believe how old their children are turning or how fast they are aging, it's not hyperbole.  A child's birth is one of those moments in life that can be recalled like it happened yesterday.  The emotions and senses of the events leading up to and shortly after aren't easily forgotten.  Such is the case when thinking of Jude's arrival into the world and into our lives.

And, it is with these memories in mind, shortly after Jude's birth, that I say in all honesty it is hard to believe Jude is two. These words come as relief to us though, standing as proof that time does pass, and with time, pain eases into merely a memory.  But, these memories and past pains have value still- if for only to remind us of what we can survive.

No parent can appropriately prepare for a diagnosis like the one Jude received at birth.  Simply because one can never be fully prepared to hear such news, does not mean one's heart is unable to respond in love.  When I finally pushed aside all the fears and my anger about Jude's blindness, all I was left with- the only thing remaining of value- was a love for him.

And it's been two years of love.  Which, on one hand, seems like such a long time ago when I think about how worried we were about his prospects and seeing now, how far he's come and how hopeful we remain.  But, it also seems like yesterday that we brought him home, shared him with his brothers and tried to learn new ways to raise our baby.  And, we're still learning.

At his birth, I would have given anything to change him- to make him, in my eyes, more whole.  But, today, after two wonderful years, I wouldn't risk it- not if it meant Joanna and I might not have the exact same, lovable and perfect addition to our family.  As his brother Peter said after tonight's bedtime prayer, "God bless us for Jude."

Amen, Peter.  Amen.

St. Jude: Pray for us.

Wednesday, February 19, 2014

Carry that weight

I have heard, although never actually seen, that a mother in crisis would be able to lift a full sized car high enough off the ground to free her trapped child.  Luckily for Joanna and me, we have never had a child stuck beneath a car.  That said, I can't help but see the metaphor an appropriate one for Jude's blindness and the lengths Joanna and I will go to help him.

Jude carries the weight of a car on his back in his blindness and he is unaware of it now.  The clock ticks down daily to his eventual awareness of it.  Joanna and I race that clock, with help from the CCVI, to mitigate how heavy that weight truly feels on our son.  We want this awareness to be greeted with tools of empowerment, not thoughts and fears of inability.

Every day that passes where Jude grasps a new concept more clearly is like lifting another pound off of his back.  His mom and dad agonize on whether we'll have removed enough of that weight by the time Jude starts pre-school, or when he goes (and that he goes) to school with his brothers, or when his peers have a birthday party, that they want him to be a part of the fun.

With this knowledge, we lift the weight and we fight for our son.  We'd have it no other way- we'd fight no other way.  Fortunately we are not alone.  For nearly two year, we've been supported by our amazing family and friends and even friends of friends.  That's an unmatched feeling.

Jude is incredible and I mean this in every way possible.  But no one of us is incredible on our own.  He needs the love and support of many good people.  I know I do too.

St. Jude: Pray for us.

Thursday, December 19, 2013


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.