Ollie’s Story: Part 2. We find out about his surgery and meet Ollie today!
What struck me so vividly about the waiting room was how these families were from all over the world and they all somehow managed to find Dr. Capone and Dr. Trese. These were little babes from Bosnia Herzegovina, Italy, India, the US, whom I had the honor of meeting while Ollie was in the care of Dr. Capone and his staff. Ollie and I stayed in dorm-like but affordable housing across the way from the hospital. It was winter in Michigan so the only respite I had was our daily hospital rides to the gift shop to purchase gifts for older brothers and Starbucks for mama. One eye was operated and given time to heal and then the other.
To be frank, all the simplistic layman drawings and explanation of Ollie’s retina went over my head. But I got the biggest point. Dr. Capone had given Ollie light perception. I can go on for eons about Dr. Capone and his extraordinary support staff…the thing is that he made me feel that Ollie was the only patient in the world… The Park brood road tripped to Michigan the following year specifically for his expertise, insight, and most importantly his dedication to these kiddos with retinal problems.
So life went on for us. Everything had changed but so little had changed in our daily lives, There was laundry to be done, field trip waivers to be signed, lunches, snacks, homework, sports, etc…
But by now you are probably wondering… What is Ollie like today?
What Ollie likes:
Ollie loves popsicles; mostly the lemon or lime ones. He could also swim every day if given the chance; luckily Texas weather provides us with many warm days to use the community pool.
Top 40 Music is a huge hit with him. It started with a few cords of Justin Bieber’s “Baby Baby’ and has moved on to include Pitbull and Usher.
We went on a road trip this summer headed to visit friends and family in NY/NJ. He had recently finished up his first year at the Early Childhood School in Frisco and his language skills improved greatly. It took 11 hours for us to reach Nashville and he must have spoken for 9 of those hours. Nashville to Jersey was another 11 hours; and it was like the movie “Groundhog Day.”
The power of his voice has opened up a new world for him; he loves talking to people. His MO is : “Do you have gum?” or “Do you have popsicles at your house?” Some people give an errant piece of gum to him but we recently had a pest control worker spray for bugs. This was the first time he met Ollie and was asked the question about the gum. After completing his work, the pest control guy, Mr. Cameron, drove to the store and returned with some Trident mint gun for Ollie and Airheads for brothers. He’s a cute kid and his spritedness makes for a pretty good combo.
Our philosophy: bumps and bruises happen
Ben has had this mantra “bumps and bruises” for Ollie as it has been for Jake, Owen, & Noah. This has been a harder adjustment for me. Especially when Ollie started to become a more active explorer – I wanted to put him in a plastic bubble…No question, no hurt, no stares. But each day presents a new challenge and there have been countless times where he has been out of his comfort zone. I have tried my best to come out of my comfort zone and take Ben’s lead. Bumps and bruises…
In addition to using his cane, he has been tracking Braille quite well with the aid of his amazing Visual Therapist. She has been a constant presence in his life since he was 3 months old. We have learned to lay off therapies for the summers. When Ollie began to walk, we explored every therapy and extracurricular we could. A typical week would consist of vision therapy, orientation and mobility, PT, OT, speech, hippo therapy, swim class, tumbling class with sporadic chiropractic adjustments. He was burned out, we were exhausted, and his brothers barely got any down time with the baby of the family.
Last summer, Ben and I made a decision to reel everything back and truly “wing it’ as a family of 6. We were going to claim our son and Jake, Owen, Noah’s little brother back. It was life changing for us as a family unit. We drove to NY/NJ with our dogs. That was a summer filled with love, laughter, and many tantrums for all 4 boy. But it changed Ollie. He became so much more independent, confident, and formed a powerful sibling connection.
This summer has been a summer of many firsts for Ollie. He rode a NYC subway with Noah and his favorite cousin Eva, he learned how to skateboard, he tried swimming without floaties, he played lacrosse with brothers, he stayed up til 11pm while we all enjoyed a dinner at Carmine’s with dear friends, he discovered a love of bagels, he walked the streets of Manhattan with his cane, and he rode a taxi cab. Before the summer ends, he is going camping with another family. It’s strictly a boy trip so he will probably sprout his first chest hair.
Our Early Intervention Experience
ECI was completely new territory for us. Countless calls, paperwork, scheduling of initial evaluations that seemed weeks away…Didn’t they get that Ollie needed to learn tools immediately and Ben and I needed guidance ASAP? It was overwhelming for us and we are educated people and English is our first language. We did our research and asked questions. Lots and lots of questions until it became part of our daily verbage.
Certainly there are families that shut down because there is so much to wrangle emotionally and logistically. We were the other extreme; there was never too many therapies or resources for Ollie, and that resulted in an exhausted little boy.
It is just now; he turns 4 in November, that our family of 6 has found our groove. He started school the day after he turned 3. He is with typically other developed friends for a few hours a day. Many tears were shed for the first few days, but we just knew that he was ready for the classroom environment with vision, speech, and O&M sessions. As school went on, friends were used to Ollie taking their face with his hands and smelling them or feeling the texture of their hair so he was able to “see” with his other senses. Most exciting for him was being able to ride the school bus home.
Ollie has been fortunate enough to be surrounded and supported by an amazing team of therapists, aides, and bus drivers. As parents, we are surely our child’s biggest advocate, but showing appreciation to the other members of the team goes a long way and this will be an unbelievable combination for your child.
Ollie can do it all!
When strangers ask questions about Ollie, Ben and I take time to engage Ollie in the conversation. We realize that our normal might seem unusual to others, so we are always willing to talk about our lives. He has touched the hearts of so many by just being a typical 3-year-old who happens to be blind.
I believe that Ben and I were always good parents, but having Ollie in our lives has made us great parents. We are more compassionate, patient, and not as quick to judge. We find strength in our family and the goodness that comes in people when they meet Ollie.
I want people to understand that he is not precious each waking moment. He hits big brothers when he doesn’t get his way, he has been known to stomp his feet when he is put in time out for pinching, and oddly is always thirsty right as he is tucked into bed. That being said, we are ridiculously proud and blown away by each and every one of our boys. Like his big brothers, Ollie can do anything, even with some bumps and bruises.
OMG. Why can’t this family get their own TV show. (Seriously…. Come on!) Thank you so much for letting us meet Ollie and learn about your family.
Any other parents want to share a story about your blind/visually impaired child? Email me at firstname.lastname@example.org. Don’t worry if you don’t like to write. I’ll make it easy for you! I promise.