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.