Having a child with disabilities comes with many ups and downs. Each day proves to be a new learning experience for me. You see, I have the sweetest 7 year old that has unfortunately been dealt a hand full of bad cards, but he somehow lives everyday as if those cards were actually a Royal Flush. I sit back at the end of the day and thank God for this child and his huge heart and positive outlook on life. Knowing how easy going and positive my child is makes it all the more difficult when we walk out into the real world and see how thoughtless, inconsiderate, and tasteless people can be, most of the time not even realizing how their actions, or lack thereof, slowly chip away pieces of my child's enthusiastic approach to living life with disabilities.
This year has proven difficult for my son. Since January, he has had surgery after surgery and is facing yet other major one and four additional procedures to follow in suit. After sustaining a horrific injury in January, he has relied on a wheelchair for his daily mobility use. So learning how to maneuver this world accessibly has proven to be a bit of a challenge. After multiple encounters with other people and seeing how thoughtless they can be really makes me question the world we live in.
For example, recently we went to the movie theater to see a new kid’s movie. We arrived extra early to ensure we could find accessible seating so my son would not be embarrassed and would feel comfortable. You see, he is 7, and often thinks about what others may think of him being in a wheelchair. As we walk in the half empty theater, we immediately notice that a family has set up shop in the only accessible seating row in the theater. They sat on the row taking up spaces for both accessible seats that were on each end. My heart sank as I hate confrontation, but my mind could not help wonder why they didn’t offer to let him sit in the wheelchair seat and move one row up? After all, it is what I would have done if the roles were reversed. Instead, they acted as if they didn’t see us frantically looking for seats for our family and realizing there were no accessible seats for my son and our family to sit together. I look back at my son with tears rolling down his face, calmly asking me if we could just go home! I reminded him of how strong he was and had to dig deep into my soul to find words of comfort. I had to choose to be the bigger person and make the most of the situation. I knew how much my son wanted to see the movie and I reminded him he was strong and we were there to have a good time. So I asked the rest of my family to sit somewhere else together, and we wheeled him over to that wheelchair space right next to these rude people and let him enjoy the movie. I really wanted to get up and cause the biggest scene anyone had ever witnessed. How could someone teach their children this type of behavior was ok? Nevertheless, I taught my son to be humble and kind and to enjoy the show, which he did. However, deep down, I thought of all the other times people were in such hurries they slammed doors in his face as we were trying to push him in because they were too busy to hold it open for him, or how they couldn't hold the elevator door for one more second, or how they blew their horns as we tried to get through the crosswalk headed into Children's Hospital but were a few seconds off from crossing in time. I could never imagine blowing my horn at a child who you can visibly see is doing their best to cross the street, much less at one in a wheelchair! I know this is Boston, but don't people have hearts here in Boston?
I have pondered this question silently for months now. Don't get me wrong, I am not looking for handouts or special treatment just because my child is living with a disability. I was just raised to treat others with respect and how I would want to be treated and only to expect the same from others. Maybe my expectations are just too high?
Today, after maneuvering several city blocks with my son and my infant baby in tow after another long day in Boston at the hospital, my son asked me for a coffee free s'mores drink from Starbucks. Knowing how well behaved he was and feeling how scorching hot it was outside, I relented and we went on a mission to get him that drink.
Upon walking up to the crowded Starbucks, I immediately realized there was no way I could fit my son's wheelchair in the tiny lobby of this Starbucks location. Not wanting to make him feel like he was a burden or in the way, I immediately started searching my mind to come up with a plan b. The courtyard in front of Starbucks was filled with nurses, doctors and students. All the tables filled. As we continued to walk, I spotted one shiny accessible table that no one was sitting at. Unfortunately, it was in direct sunlight, and no umbrella shade was at this table. Worried about my son overheating, I made sure he would be okay while I fetched his drink. He was excited to get his drink to cool himself down. I walked inside, fervently watching him from the tiny lobby window. He would smile and wave at me each time. After sitting there for a few minutes waiting, I spotted a young man sitting next to my son's table quietly rise up from his seat. I watched to make sure my son was safe. I was only 10 feet away, but the glass separated us and I felt a world apart from him. The next few seconds changed my life. I watched this young man in sneakers and khakis rise from his shaded chair, pick up the heavy metal umbrella stand from his table and walk 4 feet away and place it beside my son to make sure he was shaded while he waited. I watched my son thank him and smile, and the young man walked off as if it was nothing. In an instant my heart was healed. Healed from all the hurtful and selfish actions I have shielded my son from for months. Tears swelled in my eyes and before I could get out the door to thank this man, he was lost into the busy bustling Boston streets.
The young man walked away after completing a deed he felt was normal and expected behavior. He saw a need and filled it. End of story. I just wish with all my heart he knew the story behind his actions. I wish he knew that my son is epileptic and has seizures when he overheats and I was two seconds away from walking out and telling my son that the line was too long and we couldn't sit in the direct sunlight because it was not safe as hot as it was today and explain there was no room on the inside for him. I wish he knew how much I didn't want to have to deny my child the simple request of a drink he asked for and that him bringing the umbrella shade over helped him more than he knows. I wish he knew that this 20 second action erased months of hurt caused by others being too busy to care or just plain outright inconsiderate. I wish he knew I walked out and prayed for him with my son and thanked God for his compassion. I wish he knew that I'm forever grateful and will remember his kind act every day, especially in times when others might not be so kind to my son or others.
So, I'm writing this letter in hopes that the Starbucks Saint in Boston today knows we are forever thankful and that his kind act of compassion will never be forgotten. I hope he also knows that I'm sorry I didn't get to tell him in person how thankful I am. I am also writing this letter in hopes that others might read it and remember to slow down, humble themselves and take that extra minute next time to hold the door, wait 4 extra seconds at the crosswalk and not blow, be more cautious of sitting in accessible seats when there is no need, and don't be afraid to show compassion towards others. But most importantly, I also hope that whoever is reading this learns from my son that no matter how bad your cards are live life like you have a Royal Flush!
