I have often wondered what people think when they see us out and about at sporting events, parades, school plays, and things of that nature. I guess what I mean is, do they realize what actually happened behind the scenes so to speak, to get us there?
It is a big deal to take the Toodle Bug pretty much anywhere. Mentally, emotionally and physically. We have to make sure we have her meds, diapers, food, oxygen, etc. Plus just the act of getting her out of the house, getting her wheelchair into the car, getting her into the car seat, get to where we are going and then get out the wheelchair or stroller and get her in it and on and on.In fact, there are many times I just don't go somewhere because of the extra effort involved.
Sounds awful, I know.
The problem is, there is tons of planning for an outing with a child that you really can't plan on sticking to the plan...if you know what I mean. She is unpredictable, to say the least, and that can cause mucho anxiety when taking her places.
Will she have a seizure? Will she have a retching episode? Will she get all loud and shrill? Will she toot? Will her feeding pump alarm go off? Will her Gtube button get pulled out? Will other people be annoyed if she does get loud or, well, tooty? Will she get stared at? Will anyone talk to her or go by as if she isn't even there? As much as they love and adore her, will Blake and Ellie be embarrassed if anything should happen? Will we? (and yes, I do get embarrassed at times. Not by Tessie herself, but by some of the 'noises' that can escape her)
These are the questions my hubby and I ask ourselves before taking her to public events. It probably isn't very politically correct of me to admit that but too bad. It is all part of my reality and it isn't all rainbows and unicorns.
And I will agonize for weeks about whether or not to have her be a part of the elementary school plays. I go back and forth...first,"yes she'll do it because she deserves to be a part of it and she will probably love it" to, "No, what if she has a seizure up on stage in front of everyone?"
Plus, if I am being brutally honest, I hate seeing her up there in her wheelchair, head down, trying to go to sleep to escape the chaos. I hate seeing the other kids be all cute and funny and hamming it up for their parents while The Toots doesn't even seem to be aware of what is going on around her. And most of all, I'll hate myself for being so small and petty and not being able to just enjoy the moment.
And I will be sitting in the audience with a smile plastered on my face, most likely fidgeting from the stress, trying to act like every other parent there while, once again, wanting to bawl my eyes out.
It is during those moments when I want to jump up and say to everyone in the audience, "Tessie is funny too! If you could have just seen her do (fill in the blank) you would have died laughing! And she is so smart! She can make choices and say Mama and..." Well, you get the idea. I want you to think that my kid is as great as yours and everyone else's. See, very small and petty.
But as parents, don't we want everyone to see our kids at their best? Their cutest, funniest, smartest? But I guess most of all, I just want people to understand that there is a person inside of my Toodle Bug. And she is amazing. She is smart and funny and loving and has a wicked sense of humor. She can be naughty, tricky, and even a bit manipulative.
In short, as my niece (shout out Dreyenn!) once put it, she can be "just like a real kid!"
Now before I hit "publish" and throw this out there for everyone to judge I want to assure you of that fact that I realize most of my worries and hangups are MY worries and hangups. That most people who see Tessie will stop to talk to her or tell me she is cute and mean it, and even tell me that they were happy that she was in the play and were genuinely happy for her.
What can I say, I'm working on it...