Just Say Hi!

Going out in public with MaryEllen and Kevin should be an olympic sport! I know I would get the gold medal. Just like a true dedicated sports professional, after years and years of practice, I’m just good.

I can toss togetIMG_2725her vents, pulse oximeters, feeding tubes, wheelchairs and a million supplies like a boss. Although our van is a huge 15 passenger, 20 something foot long gigantor, all our stuff plus kids, nurse, helper (and me!), just about fits. If we hold our breath as we get in, and then exhale when we disembark, we’re good. All kidding aside, it is almost an unimaginable task going somewhere with the kids. I have to make sure oxygen tanks are full, vents, pulse oximeters, and suction are charged, van has gas, and lift for van works. Do I have all the wall or car plugs for all devices? We never go very far but forget one thing when we need it and we’re in a pickle! One time, we actually had everything (we thought) and only had to bring Kevin out. Well, lo and behold, Superboy needed the vent while we were out and we didn’t have a little 3cc syringe. In order to use the ventilator, Kevin has to have his trach cuff inflated so that all the air goes into his lungs instead of up and out of his mouth. Searching frantically did not win me the syringe prize that day. Fortunately, we were at a doctor’s office, so I quietly asked for (and received) a syringe so that I could fill up the little balloon and Kevin’s breathing would improve and his very loud vent alarm would stop beeping.

All that though, is the easy stuff. What I would get a gold medal for is living with all the stares and pity looks that going out brings. If you know me, you know I like to blend in, not make too much noise and just go with the flow. That would be my other life. The one I don’t have. Wherever we go, people are just uncomfortable. After 28 years, I am very accustomed to it.

Don’t worry about us though. It’s really okay. I understand.

If you really want to know what to do though, when the inevitable happens and you actually see us, here are some Dos and Don’ts:

DON’T :

  1. IMG_0274Don’t go all the way to the other side of the aisle, street, or hallway like you’re going to catch the wheelchair disease. It’s really not contagious!
  2. Don’t look at us, then look down, then look again, then look down. We can see you! And you look funny!
  3. Don’t give that tiny little quarter smile thing as you rush by us. Give us the whole smile. We will actually give you a whole smile back!
  4. Don’t pull your children closer to you when you see us. We won’t take them. Promise!
  5. Don’t pass us by and then turn around to look. We really look better from the front and it makes us feel weird when you’re looking at our butts.
  6. Don’t just stare and stare and stare and stare and stare. You get the point. It totally messes with my need to not stand out and just blend in.
  7. Don’t have that shocked, big eyed look on your face. Please. It makes my heart beat faster and I am at that age, you know, where heart attacks can happen at any time. 😉
  8. Don’t say “Ahhh.” I don’t know what to do with that, in all honesty. Is it good, bad, pitiful, indifferent?  That one just confuses me, and I might say “CHOO!” back. 🙂
  9. Don’t say “How do you do it?” I may actually keep you there for 7,687 days telling you!
  10. Don’t say “You’re amazing.” Even though I am for a million other little reasons, 😉 pushing a wheelchair is not that difficult!

DO :

  1. Say hi… or hello… or good day… or Aloha, or whatever floats your ‘daily greeting’ boat. 🙂

See you out there!

 

13 thoughts on “Just Say Hi!

  1. Re: #5 If you do decide to turn around for a second look but keep walking, watch out for massive mall pillars. You just might walk into one. (Am I mean that I found it really funny when a lady did that when I had Joe out at the mall. Pillar, meet face. Hee hee…)

    1. I think you are fantastic as you just want to blend in to society and it is really bad that you feel you can’t as your children are just normal like everybody else they might need things to help them with their disability and to keep them alive but that doesn’t make them any different to anybody else

  2. You and your family are amazing and all Beautiful I am so Happy to know you and your family you are definitely the kind of person who wants to blend in and in my World you do But you are AMAZING and very Special Super Woman you are my Hero

  3. As a Mom of 2 teens, one with Cerebral Palsy, Asperger’s and Visual Impairment & another with Autism & Severe asthma . I can relate to some of your “Don’ts”.
    However, I always pull my kids, nieces & nephews close when a wheelchair comes by to give plenty of room & to make sure the little ones are paying enough attention as not to get in the way. Stopping a wheelchair short, on a decline is not always easy!
    If I am looking at you wide eyed & tell you that you are awesome or amazing, it’s because I truly think you are. I KNOW the number of “Special Needs” kiddos in foster care & group homes.

    Warmest Regards

  4. Thank you for this. I appreciate your candor. You have inspired me to do better and lead by positive example to my daughter. May she learn from me the way I’ve learned from your story.

  5. well said, i remember when I was caring for a lady with profound and multiple disabilities I was pushing her wheel chair round London UK and a lady looked at us as if we were aliens from outer space and crossed herself several times, the lady in my care was blind so she didn’t notice and she was too busy enjoying the sounds and just being out and about. I did feel though that lady that crosed herself ‘s atttiude belonged in the Middle ages though.

  6. I couldn’t help but chuckle reading your don’t list. My best friend has cerebral palsy and although his needs were far less than your kids, we always had the same reaction everywhere we went. Heaven forbid you catch the wheelchair disease. Keep up the good work. You are one heck of an awesome mother and a great writer. From one Mighty blogger to another. Stay strong and happy.

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