Monday, Monday

Well Monday was rather productive I guess. Not in the way I anticipated. Dropped Diva off at school and headed to an appointment for Superman that I had extremely high hopes for. I am guessing the first event of the morning should have been a clue.

I was headed to the Medical Center and in the middle of a very busy rush hour intersection was a kitten. Gorgeous little thing and terrified sitting in the middle of traffic. Had I not had Superman in the car with me I would have jumped out and tried to save the little thing, but instead I was one car back at the light and watched to my horror at the kitten jumping into the undercarriage of the van that stopped to try to save it. For five minutes (an eternity in rush hour traffic at a light) I sat there powerless to help because leaving the car put Superman at higher risk (people in San Antonio cannot drive and rush hour makes people crazy). So needless to say the kitten didn’t survive the ordeal – and I missed my window to get free coffee at Valero.

Showed up at the appointment. We have been fighting an uphill battle with a pressure ulcer on his foot since February that he got sleeping one night. The drama of low calorie diets and non mobility is staggering. So an appointment at a would care center where they practice HBOT or Hyperbaric Oxygen Treatment would help us on so many fronts. HBOT helps heal skin but also helps in brain development. Its been shown to make progress in many people with brain injuries. Best part? Insurance will cover it for wound care. Score two for Team Superman!

Throw a flag on that play (yes I realize there were too many conflicting sports references.. its 3am.. I digress). We get evaluated and I am almost certain the doctor thought I was nuts. However the clinic only treats open wounds and his is still a stage 1 closed wound so no dice. Which I guess is fine because if it were to open up we would be so beyond screwed – his ability to heal his skin is pretty much non-existent at this point. But we got prescriptions galore. The funniest part was however that he told us to wrap it in gauze and cover it with zinc oxide – which is the first treatment we tried courtesy of an amazing nurse who went out of her way to find out what we should to until the doctor could call us back. Then the pediatrician prescribed a Rx ointment Regranex – eh.. not impressed. So what did the wound care doctor say? Zinc and a bunny boot (yes, I will absolutely be making him a bunny tail once I can track down this boot!). The rub on this is that the bunny boots are almost impossible to find in pediatric sizes. Probably impossible to find in toddler sizes, but alas my work is cut out for me!

Anyway we got a referral to a pediatric rehab clinic downstairs that works intensively with quadriplegic and paraplegic patients so they will definitely have the resources we need – and their first available appointment is October 2014. Yeah, that’s what I said!

Got home late and threw his meds all off by an hour – because that’s how that goes most days. But either way he seemed pretty happy most of the day.

Got a list from SPIO (through my awesome OT) of vendors across Texas that bill insurance for SPIO suits. I think SPIO wants their demo suit back so I need to work faster to get it approved or find funding.

Spent the rest of the day not feeling well – feel free to post any natural ways to lower blood pressure in the comments below – but was all better when Diva brought me a box of Little Debbie Brownies! That girl knows how to make me smile!

Dad made dinner for us and Diva shared her purple pillow with Superman (more on that later) and he cracked the BIGGEST smile when Dad wrapped his little arms around it! He totally adores that sister of his. She really is the one that makes him smile.

So glad Monday is over! Bring on Tuesday and let the good times roll!

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A Letter To The Boy At The Grocery Store

Hello. I came and got in line behind you today. I am not sure why you were there, most likely shopping for the game. You didn’t really notice me, but I noticed you. You were there with your mom, maybe picking up a few things getting ready to watch the game like everyone else. There wasn’t enough room on the end of the conveyor to place my items on the belt yet so it gave me an unexpected chance to witness the end of your conversation.

BELT

I don’t know how the conversation started, I assume it was surrounding the word ‘retard’ or some form of it, but the end of it is what disturbed me the most. You were hitting your bent hands against your chest and you made the comment with a distorted face and a distorted voice saying “because I am so stupid”. It was enough to shake me to my core. You mother was looking up at you beaming with pride, smiling at your story. And it made me a little sad for you. Sad because you looked to be about 14 years old, definitely not more than 16 – still so young and impressionable. Your mom kinda laughed and you embraced in a side hug which tells me that you are likely not affected by any one having a disability. I desperately wanted to say something to you, but I held my tongue. I was simply dumbfounded in that moment and sad for you.

There was no way to know anything about me. I was not wearing a CP Proud mom shirt, I don’t have a tattoo of a green ribbon or a 3E keychain. There is no way you could have known that the bags under my eyes were from a long night with my son who has Cerebral Palsy and the other many issues that come along with it. That my rush to the grocery store between church and the Spurs game was because I spent the last week taking care of my son who ended up spending the day in the ER yesterday for still unknown issues and has spent the better part of two days crying in pain. Honestly, I was just glad that I was too busy running to be able to take my wheelchair bound two year old son or his adoring big sister with me. I know that one day they will both face these attitudes, but I would like to keep them innocent for a little longer.

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My son is two years old. Its likely he might not reach your age, and if he does I will never have a moment of standing with him in a grocery store line talking about our day. You see my son was born early – through no fault of his own he is cannot walk and cannot talk. But I hope that if the roles were reversed I would have instilled in him by your age that we respect life and all people despite their circumstances and embracing our differences. It’s not about tolerance. It’s about acceptance and celebrating life no matter the manner in which it is presented.

So I am simply asking, when in public please be a little more judicial with your attitudes and actions because you never know when the person standing behind you might be affected by the thing you are making fun of.

Peace and Love,

Mom of a Superman

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PS: that action you were imitating is typically significant in making fun of people with Cerebral Palsy and Down Syndrome. Despite physical awkwardness that comes with the condition, many of them are quite intelligent! I would highly suggest finding one and talking to them. While it might be uncomfortable at first since it will be a new experience, I know you will find that like all people they have a story – they have dreams and aspirations, likes and dislikes – but more than that they have thoughts and ideas. There is a world out there that these kids live in that is amazing and extraordinary. They fight for everything – every step, every word and sometimes every breath. They truly hold more bravery in themselves than any captain of a football team, head cheerleader or mathlete around. Expand your horizons and open your heart.

For Dave

PSS: Even if you said the ‘r’ word and I didn’t hear it – its not ok. Please think before you speak!

#spreadthewordtoendtheword