Will and I have recently been going out and about more. It has become apparent quickly that he is no longer remarked as just a cute baby. People are noticing he's different. With that comes looks, comments, and questions. While there is nothing wrong or bad with the comments or questions we've received, it does add a whole new level of how do we respond?
Nothing really prepares you for that first question from a stranger. We mostly just live in our own little bubble. With Will being is our first child Jon and I really don't know any different. It isn't until we go out that we see just how different our baby is compared to others. I remember our first question from a stranger very vividly. Will and I were at Joanne's Fabrics searching for materials for our sensory blanket. We were at the cutting counter and we had told the employee what it is was for. She very politely asked if he was completely blind to which we said yes. When you offer the information before someone starts asking questions you are prepared as you've opened yourself up for the questions. Shortly after that another employee approached the counter and asked "What is he looking at?" Well..... that would be nothing! It was raining hard and you could hear the rain hitting the ceiling so Will's glance was shifting up. It wasn't a problem that she asked it just hit me that she noticed something was different before I offered the information. This hit me like a truck as I realized this was the first in what would be a lifetime of questions. I felt numb in that moment with that realization but managed to explain our situation again without becoming upset. That night after putting Will to bed I cried.
When Will was a newborn and during all the craziness of surgeries I had all of our groceries delivered through instacart. Now that things aren't as crazy we've been going together as a little weekly adventure. We go in the middle of a weekday so the store is pretty empty and quiet. Once he starts to get bored in the cart he starts making loud happy noises, border line screams as he likes the echo's of the large space. A store employee commented that "someone was upset." It hit me wrong in that moment as she assumed my baby was being bad and in a way throwing a tantrum. Because of that I did not explain to her the reason why I just said they were HAPPY noises and he likes the sound of his own voice. It is also slightly embarrassing that your baby is yelling in a store and you can't stop him. You don't really want to quiet him either because he is feeding the senses he has and entertaining himself in a constructive way for him. I love when he experiments with noises in new spaces. He is information seeking in his own unique way. However because this trait is usually frowned upon we get more comments that feel slightly negative whether or not they are meant that way. Again it is the realization this is the first of many awkward situations!
One of the first times we were around lots of strangers was when we flew to Chicago. It was a theme going through the airports and on and off planes we had many people waving at Will. Your heart sinks a little because such a simply human interaction showing kindness and my baby can't experience that. He can't see the smiles on their faces or the simple wave of a hand. I didn't feel the need to tell anyone as I didn't want to make them feel bad when they were being so friendly and kind. In that moment it was the best way I could think to handle it.
Recently Dad's work had an employee appreciation day. They had a free food truck for employees and their families. Will and I met dad at work. Dad loves showing off Will and obviously so do I. Everyone there was familiar with our story so there were no awkward moments or questions and it felt very comfortable. Another employee's family was there and her boy whose 1 year old. He was adorable, he had just learned to walk so he was toddling all over the lunch room. We introduced the two boys which was precious! This was the first time Will was up close and personal with a child his age who was sited. While the other boy was making eye contact with everyone in the room and looking right at Will our baby wasn't. In that moment it was clear our baby was different. His gaze was hitting the floor and we had to show him with his hands there was another baby there. The baby wasn't making noise so Will could only feel his presence and not hear him. It was a beautiful moment seeing our boy interact with another child but internally sad as well because of how different or baby responds to things.
We went to visit a friends new build home a few weeks ago, The home was empty with vaulted ceilings. Will loved the echoing sounds and was talking loudly. Just a little was past their backyard there was a playground. We decided to go and explore. There were several families with young kids there. A baby about 1 year old was toddling around on the ground. Again he was looking right at Will but not making any sound. I kept trying to encourage him to come over and touch Will's hand but not surprisingly he was hesitant and did not come over. There was an older boy maybe about 4 there as well and while I also encouraged him to touch Will's hand again he did not come over. No one said anything or asked questions but it was obvious the children while very friendly and polite knew he was difference. It's moments like these that hit hard. When you have a sighted child next to your blind child the difference is clear!
While we have swings and playsets at home our early intervention team mentioned the benefits of taking Will to toddler parks. To start getting a baby out of the house is an exhausting task in itself then obviously I have to crawl around the jungle gym with him since he can't walk. On top of the physical exhaustion there is an emotional exhaustion to consider. The comparisons, question and comments will always be a part of any outing for us. I just don't have it in me to go through that some weeks.
Just today we ran 2 errands at Once Upon a Child and Target. One person tried to wave at him and I let them know he was blind. She said "Oh I was wondering why he was looking at the ground." Another asked what he was looking at, and another asked if he was sleepy since he was looking down. So far my approach is to just take it as it comes. My reaction when people say something just depends on how I feel in that moment. Some days I ignore and brush it off, others I go into a detailed explanation. I have no go to response when it comes up and it still catches me of guard when it happens. Sometime it makes me sad, and sometimes the compassion of others warms my heart. If you are a parent of a blind or visually impaired child I'd love to know what your response is in these situations. So far I have no answer and my only hope is that it will be less painful in the future.
One thing is for sure, nothing will stop us from living and experiencing life in the ways we can!
