In January I will be running a 10K in honor of my
Butters-Bee.
Please consider sharing or donating to this wonderful event!
CLICK THIS LINK:
2017 Walt Disney World Marathon Weekend - Sally Contreras
2017 Walt Disney World Marathon Weekend - Sally Contreras
First Solo Concert
Back in July Bee was dying to go to a concert with a friend.
By Herself! I was like no way no how
will I let her go on her own. Instead of being quick to judge I turned to our
online community and asked for their feedback. I received so MANY great tips
and insight on how to go about this with Bianca. One tip that I was not aware
of is that I could call the venue and ask them if they will allow me to
wheelchair my daughter and her friend to their seats. I wasn’t aware how accommodating
they can (or have to) be upon these requests. Immediately a rep from the
BB&T Center contacted me to first reassign the seats that were originally purchased
by her friend and second explain to me what my options were for her to have an
enjoyable event. Bee was actually assigned a “concierge” personnel that would
assist her if she needed anything during the event. She greeted us at the door
and walked us all the way in and then escorted me out. My heart was jumping all
over the place for the next 3 hours. But she was good at texting back whenever
I sent her a message. Thankfully she did make it back in one piece! She loved
the band (Twenty One Pilots) and the experience of spending time alone with her
friend!
First Sleepover
Aside from her first concert she had that same night her
first sleepover! Wasn’t sure what to expect or how her friend would react if we
had to do some impromptu wound care. Thankfully they had a fun night chatting
and singing about the concert. I don’t get their socializing behavior because they
went from chatting to dead silence while they posted to social media. I guess
as long as they were having a great time all in all it was a great experience.
They closed their sleepover by watching Mean Girls…another first!
First Electric Wheelchair
We finally decided to purchase a
simple but yet durable electric wheelchair for Bianca based on the recommendation
of another peer that has the same type of EB as Bee. It is called the Air HawkElectric Wheelchair. Of course feelings are mixed at home but I think we might finally be seeing
eye to eye on this due to the additional independence that Bee can gain from
having this chair. There’s a saying in our EB Community – you don’t use it you
lose it. And we’ve lived by this since day one of her life. One main concern is her adaptability to want
to use the chair ALL THE TIME. For that reason we decided that for this school
year (her last in middle school) we will not be using it. This year we’re
trying it out so that come high school years she can get around a bigger campus
a bit more comfortably. We also park close enough to a venue (restaurant,
movies, etc…) for her to be able to walk in physically instead of using the
chair. So what’s the chair for? Well it’s mostly for those bigger venues –
malls, parks, concerts and so on. When I go to the mall with her I want her to
have the ability to go to the areas she wants to check out without being at the
mercy of someone having to push her there…or not go at all because we’re
pressed for time. This upcoming September we’re hitting Disney World for Mickey’s
Not So Scary Halloween Party and it will be a perfect opportunity to see her be
more independent while at the park with her friend.
First Time Walking Into School By Herself
So this one is a doozy. I have
been walking Bianca into school for the last 9 years. Schlepping her book bag,
lunch bag and everything else necessary for her to have a productive school
day. Today for the first time ever I allowed her to walk herself in. I was a
bit emotional probably as emotional as the first time I had to leave her at
school or camp. She did just fine opening doors and settling in at the office.
Of course I didn’t move from the original drop off point until she texted me
she was a-okay!
Some of these things might seem
so frivolous to some or maybe not such a big deal. But when your child is born
with so many odds already against them you do everything in your power to defy
those odds. It’s been almost fourteen years since she was born and fourteen
years since we were told she would always be bounded to a wheelchair, take all
her nutrition through a g-tube, have issues being independent and so many other
life altering situations. I’m comfortable saying that, even though we have
crossed some hurdles and might still be dealing with a handful of them, we have
managed to maneuver around many of those outlined.
“I wait for the Lord, my
soul waits and in his word I put my HOPE!”
~Psalm 130:5
Hoping I can re-start some blogging about these new chapters in Bee's life! I can't believe how far we've come and putting it in writing makes me realize just that - we've come a long way baby!!
