Thursday, August 25, 2016

A Summer of Firsts 2016

In January I will be running a 10K in honor of my 
Butters-Bee. 
Please consider sharing or donating to this wonderful event! 

We’ve had a Summer of firsts! It’s been a little crazy around here and Bee’s skin is starting to show some signs of “wear & tear”!


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!!


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