Kicked to the curb

Kicked to the curb

On every avenue corner in my hood construction workers are replacing the portion of the sidewalk at the crosswalk.  They are making the slope softer and adding a textured pad, so that the visually impaired can feel when they reach the crosswalk. I think it also helps to keep wheelchairs from sliding too. The new sidewalks make me happy. I have much respect for the visually impaired. They have to be incredibly brave.

Close your eyes and attempt to walk down 5^th avenue Brooklyn, no way I wouldn’t last 60 seconds. Every time a visually impaired person takes a step it’s a leap of faith. Hoping that you won’t fall into a basement, manhole, run into a pole, tripped by a dog leash or hit by someone or a car. A few weeks ago, Jonah and I were walking through the crosswalk of one of our busiest intersections. There was a visually impaired man getting close to the crosswalk at the other side. When I came to him I asked him if he’d like to take my arm. “He said but didn’t you just come from that direction? I could hear you talking to your son.”

I told him it didn’t matter it was a gorgeous day outside and we could walk with him. He smiled and agreed. When we got across the street, Jonah yelled: “Mom did you just help that man?”

Jonah is yelling because he is hard of hearing. I told Jonah: “We helped that man.”

Jonah smiled and nodded his head in agreement.

Thursday Jonah was sitting on the ground at recess. He wasn’t accompanied by his para. Some confusion as to what period it was. Was it recess, lunch or recess/lunch break? Regardless Jonah will never go unattended anytime he is on the playground. It is a crap shoot trying to get the facts of a story from Jonah. Jonah said he was sitting on the ground when a girl ran into him. Did she step on him? Did she fall on him? Was she hurt too? Was she running backwards? Why didn’t she see him? Was Jonah sitting cross legged or with straight legs?

I’m curious because I don’t understand how it is that a young girl could have chipped Jonah’s knee by stepping on him in a sitting position?  Does Jonah have brittle bones? We’re going to an orthopedic specialist next week. Sanfilippo aka MPS III is one of the only MPS’s that does not have ‘serious’ bone deformations. This depends on your definition of serious. The other MPS disorders have bone deformities so bad that most patients have had numerous surgeries. Visually you would have to be visually impaired not to notice that the person had major physical issues.  In comparison MPS III bone deformities are minor.  Notably there is one paper written on MPS IIIC Sanfilippo patients having to have hip replacements. I say notably because there is next to nothing written on the course of the disease. I have not seen an MPS IIIC child that did not have at least one minor bone deformity. For instance, all of our kids have frontal lobe bossing. Scoliosis is quite common as well. Jonah has a raised sternum and flared ribs. More concerning is a deformed vertebra. 

On my way to pick Jonah up from school the Nurse calls, she said that Jonah got hurt at recess that a girl ran into him. He hurt his knee and he can’t stand on it. But she couldn’t see any bruising because his pants were too tight to look at his knee. Stupid skinny jeans. She said that Jonah was calm. It was the end of the day and I was on my way. I get there and Jonah can’t walk.  I was surprised. How is it that he is hurt this bad? Jonah’s para and teacher assumed that it was just bruised. Jonah has a high tolerance of pain. I assumed something more happened. Maybe his knee was dislocated or a muscle pulled? I called an Uber to come get us. At home his knee was swollen, but there was no bruising or abrasions, we iced it, he took some Tylenol; ate dinner and went to bed. Jonah slept through the night but couldn’t walk in the morning. We went to urgent care. X-Rays showed a chip in his patella i.e. kneecap.

Not one person has come forward to say that they saw the accident. Jonah should not have been sitting where kids were running and playing. If his para had been there this would not have happened. Assuming his para told Jonah to stand up. Recess is my biggest stress. I fear accidents and I fear bullying. Breaks my heart that Jonah was sitting alone against the fence.

The curbs. 

Jonah had a dentist appointment this morning. We would not have gone If it wasn’t for the fact that Jonah hadn’t been to the dentist in a year and I had to cancel his last two appointments because we were leaving town. Yesterday, I rented a wheelchair so we could get to and from school. The wheelchair is poorly designed. My back was already aching from caring Jonah down the hall to the bathroom. The arms on the chair are too short and I have to lean to push him. Walking down the street, the curb repairs are killing me. We have to go around the construction and I have to hoist the chair back to get over the high part of the curb. Or if a car is parked right at the intersection we have to stroll into the street to find a gap between the parked cars big enough for Jonah’s wheelchair to get through. It is a logistical nightmare. Jonah wigs out when we roll in the street. He is terrified that a car will hit us. Again, people live their lives in wheelchairs, they deal with the perils of daily living on a daily basis.

Laying low in the other room doing some cathartic writing to bring me down from one of the worst days in our Sanfilippo life. Yet I can’t bring myself to write about our dentist appointment this morning. It’s too painful for ME. I’m relieved that I’m not in jail and that Jonah is not in the custody of social services. The bright side… Jonah’s dentist was UNABLE to find any cavities. The worst part happened after the dentist appointment. Can’t go there right now.

My Sunday morning started out on the wrong note. Grabbing my caffeine fix at my favorite coffee shop, I see a huge stack of postcards sitting on-top of JJB’s postcards advertising our upcoming fundraiser. The postcards are for an animal shelter and their fundraiser is happening the same day and time as JJB’s fundraiser.  There were at least 40 cards stacked on-top of JJB’s cards. JJB purchased 300 cards to blanket the entire neighborhood,  that is what our budget allowed. BooHoo

Jonah and Jeremy were still sleeping when I got home. I took the opportunity to read an article that Jeremy sent me. The Mighty is an online paper representing those with disabilities from mental illness to rare disease. The Mighty has recently been put in the spotlight for bringing attention to the current presidents ableist comments. https://themighty.com/2018/09/trump-disability-views-blind-trump-tower/ The article referenced Donald Trump’s comments about having brail numbers next to the corresponding numbers on the Trump Tower’s elevator panel.

The article had a link to a Howard Stern interview with Trump. In the interview Trump calls someone mentally retarded. The video led me to a plethora of Youtube videos of Howard Stern and Trump chats. The depth of his stupidity is unmeasurable and what is his excuse? Spoiled brat? This is our leader? Our children’s role model? Maybe I should pull Jonah from school. I worry constantly that Jonah is being bullied, that his teachers aren’t trying to teach him, that he’s sitting alone on the playground.

My visually impaired friend. 

Back in the day my sorority did this ridiculous program with a neighboring fraternity, it was supposed to be a building friendship’s expanding your network premise. It would have been nice if it was a get to know the sorority girls across the street. Sadly, it was hook up a fraternity guy to a sorority girl and see if they hit it off. The fraternity officers were concerned that none of the sisters would want to be with their visually impaired brother. They asked that someone from my house ‘volunteer’ to be Mario’s partner.  I immediately threw up my arm. Disgusted by the program and hoping Mario would be a gentleman. Mario and I got to be friends, we ran errands together, I helped him shop and he showed me his world. We talked about books, he showed me how he read Braille. He wrote to me in Braille and I deciphered it. He shared stories with me, he wasn’t always blind. Mario was born in Colombia his dad fired a rifle next to him and the gun powder blinded him. He was adopted by American's. Those manholes… Mario actually did fall into one right on campus. Fortunately, the guy in the manhole broke his fall. Serves him right.

This week is going to be good. I can feel it in my bones (not really) but the power of positive thinking does help. I won’t read any articles or surf twitter. I’ll focus on the fact that Jonah will be out of his wheelchair soon and if I can help it… He will never go back into a chair again.

I hope you all have a good week too. If you see someone impaired in anyway, help them across the street, grab them the jar that they can’t reach at the grocery store. FYI your smile makes people feel better. 

Jonah is super bossy about which way we should go.