We have been to Perkins School for the Blind a few times now but only for Ophthalmology appointments. The first time we went I was stunned at the size and beauty of the campus, but we are usually there after school hours and very few people are around. The place was still a bit of a mystery to me, what kinds of kids come here? Do people live here? How many students do they have? Will Kai go here someday?
This weekend we attended their Early Connections Conference. Of course my mom came and Ashley also joined us.
As I sit here writing this I am still amazed at what a great experience we all had! My first challenge of the day was actually dropping Kai off to the day care they provided. I will admit there was some hesitation, I would even go so far as to say resistance, on my part…but I quickly convinced myself if I can leave him anywhere it should here. They deal with a variety of special needs kids everyday and they were very well staffed, so we dropped him off and walked away. Of course he did great and they all LOVED him. It was actually an amazing feeling being able to leave him and know that they get it. I told them he has a shunt and he doesn’t sit up, the vision loss was a given, and I didn’t have to go into any further explanation; ‘his shunt is programmable so he can’t be around magnets, and he needs help holding his bottle, and he has a g-tube but he also eats by mouth.’ I didn’t have to say any of that. They scooped him up and there he was jut like every other different kid. I could write a whole post just on this one tiny part of the day, and I was only there for drop off and pick up! Dropping him off my eyes welled, as they did many times that day and as they are right now. I instantly felt at home. This was going to be a big day!
So we were off to the conference. There were so many choices we decided to divide and conquer, Ashley stayed with me and my mom went off to sit in on a different workshop, then we would join at the end and discuss. The workshops were amazing. We sat there in a room full of parents, grandparents, siblings, and professionals all who have children special needs, and specifically kids with vision loss.
The past year since Kai’s diagnosis we have been so wrapped up in chemo and tumor and MRI’s that we are only now starting to really process and deal with all the rest. Kai is a special needs kid. He has global developmental delay, that we hope to work on but will most certainly be a part of the rest of our lives. He is blind. Oh, and he has an inoperable brain tumor.
Sitting in that room with all of those other parents, knowing these facts of Kai’s life suddenly all felt ok.
We are not just ‘treating this tumor to preserve his vision’ we can not continue to just survive and keep him alive, he also needs to be able to LIVE!
Wow! It was a lot!
It was encouraging, and inspiring, and hopeful, but is was also still a little sad and VERY overwhelming!
I learned so much and have a lot of work to do to help Kai live his best life. Once I figure it all out I will share some of the wonderful information, tips, tricks and ideas that we walked away with, but today I am still riding the wave of feeling at home. Knowing there is a place out there where being a little different is the norm and where there are so many wonderful people willing to help. People who have dedicated thier lives to making life better for our families.
It’s crazy how we experience these days in life that just change things forever, your wedding day, the birth of a baby, the day you find out that baby has a brain tumor, the day you learn that the chemo you’ve been pumping into that baby isn’t working and he is now legally blind, then the day day you find yourself in a room full of families learning how to help their children live without their vision.
I’v had a lot of these life changing days in the past year. Many have been difficult, some have been terrible, this one was really really wonderful.
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