why having a friend with special needs is frustrating.

My best friend has cerebral palsy. He is considered non-verbal and has very little mobility in all four limbs. Physically he is 100% dependent on his caregivers for any and every need. When I post pictures with him, or talk about him people always say “oh you are such a good person” or “he is really lucky to have you”. No he isn’t lucky to have me, no I am not a good person. I am frustrated. Very frustrated.

            I am frustrated when we go out in public and people stair. I am frustrated when we go to the movies and have to sit right in the front with out necks cranked back the whole time because that is where the wheelchair section goes. I am frustrated when we go to a store and his chair is knocking down everything on the isle as we try to squeeze through. I am frustrated when we go to the zoo and there are whole areas we cannot see because his chair cannot make it up the hills. I am frustrated when we go to amusement parks and we cannot go on the rides because they are not set up for people in wheelchairs. I am frustrated when we are at church and people look directly past him to talk to me, and ask ME questions about HIM. And I am so beyond frustrated when people tell me how lucky he is to have me in his life.

Heres why

            I met Richard when I was 18, I was in a bad place. I was trying to leave behind a past I couldn’t escape, I had cast off God years ago, and I was headed no where fast. If I hadn’t met Richard, I am 100% positive I would not have let myself live to see the life I have today. Richard saved my life. Richard showed me that there is still humanity in this world. He taught me to forgive even when others hurt you. He taught me to keep putting yourself out there, even when people look right past you. Richard is hands down the most amazing man I have ever met in my entire life. And I am the one that is lucky that he was willing to accept me, in the broken messed up state that I was in, as his best friend.

            Richard deserves so much more than this world is set up to offer him. It is far to common to hear a store manager tell an employee to set up a store a certain way, knowing it will make it hard for people in wheelchairs to access because “it wont affect THAT MANY people.” That is so frustrating. That is saying that the feelings of my best friend, the man who saved my life, are not important. That if he wants to do something as simple as go to the store, he cant, because the appearance of your display is more important that him.

            I am livid every time I take my kids to the zoo and I see signs that say ‘no wheelchair access beyond this point” which at our zoo is pretty much any attraction past the flamingos. Sure you can pay to have a golf cart drive you around the zoo, buy why should he have to be treated so different to do an every day task. Why not just make it wheelchair accessible in the first place. 

Most people in wheelchairs feel different enough, embarrassed enough, they are aware enough of the fact that everyone has to do everything for them…shouldn’t they be able to go to the zoo without having an entire zoo staff making accommodations for them to see the animals they paid to go see.

            Richard is an adrenaline junkie, he loves to turn his chair up to top gear and fly down the halls taking off pieces of the wall as he turns the corner, he is always so pumped to go to the fair each year. But when he gets there he has to sit on the sides and watch his friends go on the rides. He spends every minute of every day trapped in a body he is unable to control, couldn’t they tweak the Ferris wheel just a little bit so my friend could have five minutes of distraction from his everyday reality?

            I cannot stand when we are out in public, and people come up to us and he says “hi” and they look directly past him to talk to me. HE IS A PERSON! HE IS RIGHT THERE! And regardless of whether or not I think you are deserving of his time, he seams to want to make a connection with you. Would it kill you to make conversation with him?? I understand that lack of exposure to people with disabilities can leave people feeling uneasy when they encounter someone in a wheelchair or with any disability. And I know that it can be hard to carry on a conversation with someone whos English is hard to understand, However that does not give you the right to ignore them. Quite honestly I feel a little uncomfortable talking to someone who feels comfortable ignoring the presence of another human being, but I’m still talking to you, and want to know who taught me to give such grace to others?...Richard.

            Richard is without a doubt an angel. He brought me back to god, and showed me that humans can be good. He fearlessly responds to every joke, every question, the pastor says right there from his spot in the front pew every Sunday. He sings along to the choir with the most beautiful voice I have ever heard, and he Never. Stops. Trying. Richard has more grace, more compassion, more courage, than any person I have ever met. Richard is the only adult I know who embraces life as if nothing could stop him, and yet he has every limitation. Richard is my person, he is my rock, he is who I aspire to be like when I grow up. He is the reason I am still here. I am not a “good person” for being his friend. I am lucky, no, So incredibly blessed. That he is mine.

To malia on friendship

To my baby girl. Right now you are friends with every stranger on the street. You can go up to any other kid at the park and say “hi friend, want to play” they will say “yes” and  off the two of you will go, hand in hand. Best friends, inseparable, for at least the next 45 minutes. But someday soon that will all change. You will enter high school and those girls you used to rule the playground with will become your competition. Despite my best efforts You will become aware of beauty standards, and boys. Oh the boys. This is the part that will get you. As much as I want to believe that things will be different by the time you are in high school, the odds are, you and other girls, will spend a large portion of your time trying to find ways to cut other girls down in your mind, and to others, to make yourselves feel more desirable. You will focus your mind on chasing boys, and blow off your girl friends on the weekends once you have a boy to replace them.

            I know, I was one of those girls. I had one or two best girl friends, and everyone else was competition. I did everything with those few girls, until I had a boyfriend, at which point I would see those girls in the classes I didn’t have with said boy, and other than that my time was consumed by him. This was a mistake my angel. Please don’t follow in my foot steps.

            Baby girl, you need those girls. Those girls that you blow off, those girls you want to be better than, those are the girls you need most. Even if you pride yourself in being more of a “tomboy” even if you think girls are too much drama and you would rather just hangout with guys, you need girls.

            Becoming a wife and a mom is a beautiful, life changing, amazing, experience. But it can also be very lonely. While its true you are supposed to marry your best friend, you are supposed to have your best woman, your Maid of Honor, right there by your side. She is who you are going to call when your best friend is driving you crazy, and he will. She is who is going to bring over soup and ice cream when you are sick. She will be the first person to tell you happy birthday, and the one telling your husband what he should do to celebrate because he will have no idea. She will know your deepest secrets, and she will care for them like her own. If you are fortunate enough you will get to experience parenthood with her. She will be who you call to share diaper explosions with. She will be there in the middle of the night to babysit your toddler while you're in labor. She will offer time and again to take your babies off your hands when you are having a hard day and she will simply show up and take them when you are being hard headed.

            Baby girl, this friend is invaluable. You need her. She will keep you grounded. There will be times you want to light your husband on fire, and she will remind you how much he loves you and that you would miss him. There will be whole chapters of your life that you only got through because of her strength.

            Don’t get me wrong sweet girl, your marriage will be beautiful, your husband will be amazing, and he will want to be all of those things for you. He will try his hardest to do all of those things for you, and if you chose the right man, he will love you, the best that he can, until his last breath. But you still need her. You need her so you can love your husband back the way that he needs to be loved. You need her to be your sounding board to get your frustration out when he has left his towel on the floor for the hundredth time. You need to vent to her so you don’t yell at him over something so mundane. She will know your dirty secrets and remind you that you leave your bras hanging over the shower rack to dry and he doesn’t complain about that. She will remind you of the time you didn’t put gas in the car and he had to coast to the nearest gas station and loved you through it.

            She, along with your husband, will be your rock. So I am begging you baby girl, don’t make my mistake. Find her early, and keep her. Don’t cast her off in high school the second a cute boy looks your way. You need her baby girl. And she needs you.