My daughter has a magic butt. I'm sure of it. It took me years to figure out
but she is now busted and I am more enlightened to this Rett Syndrome crap. No
For a while now....or at least since she got her g-tube and fundo now that I
think back, my daughter has been a tooter. A Hi my name is Abby and I'm a
tooter type tooter. Hi Abby..Toot toot goes the crowd.
It is so bad that I try to mask it when out in public. If we are in church I
either put a towel under her or sit her on my lap so we don’t get the ricochet
noise that comes from butt to vinyl. The people at church have come accustomed
to it. I am nice enough to sit us clear in the back where I can wave off the
fumes or silently spray with a travel size bottle of bath perfume.
Restaurants are near impossible. The poor people at nearby tables can force themselves
not to stare at Pocahontas while she woo woo woo woo's every second until I
break out my phone or a book for her to look at. When I don’t prepare for the
choo choo toot toot train to pull into the station they are mortified I’m sure,
as they change tables, trying not to look at us.
I can remember preparing to give a Special Needs/Rett Syndrome talk to an
elementary school in which Abby was going to sit in the front with me. This was
several years ago. I can remember telling Kelly Butler that I wasn't nervous
but my biggest fear was that she'd be blasting ass the whole time I had a
microphone on and embarrass us both to death. But she didn't, not once. Not in
front of all those kids. Thought I had dodged a big ole butt bullet there. I
can remember breathing out, looking at the sky and saying, “Thank you."
Over the years Abby's has acquired many skills I have then taken her to the
doctor for only for him to tell me, “She does it because she can. Rett Children
can do so little when they find something they can do they have fun with it or
use it as a way to express themselves."
Oh great. My daughter can swallow air like her brother does to burp and
shoot it out the other end...at will.
It reminds me of when her Neurotypical brother was 2. He farted one time,
very loudly during dinner and looked at us very sweetly and said,"Scuse
me. I burp my butt."
The whole table just about died only to have him burp a few minutes later
and say,"Oh! I fart my mouth!"
Go ahead...I'll give you a minute.....
So at church this Sunday night they were having their Christmas Cantata. The
choir was in rare form at the head of the church. Thank goodness because those
of us sitting in the back were about to die. She was loud and she was stinky.
Our older friends that travel were there and had us sitting with them. I know
they think I feed her dead bodies then pump her full of air before church when
they are there. I am not kidding she could have accompanied the band on
percussion back there.
Today after therapy I decided we were going home and taking a nap, whether
she liked it or not. After 2 hours of trying to breath in the Dutch oven that
had become my bedroom I gave up and took her downstairs to sit on the potty. I
mean she had obviously had to poop or already had.
Guess who stopped the instant we got downstairs and turned on Dora.
Yah your right. Princess Tootie.
I just kind of cocked my head and thought NO WAY! So I waited a few minutes
then turned off the TV. Toot toot. I turned it back on for 15 minutes. Princess
Pretty Pretty. Turn it off. Toot Toot.
Boy is her brother going to be pissed that she has this skill. I’m sure he'd
give anything for it. I think I would too. When he comes in the kitchen and
leaves me a present I could just fire one right back. Forget water guns! It
would so be on!
So this is how my beautiful little angel expresses boredom, anxiety and just
plain I don’t want to be hereness.