I am learning more and more about the “labor” part of the term “labor of love.”
Because after we were singing glory hallelujah when Lucy finally accepted the idea to go to a class at The Foundation for Blind Children (and even had a good time…back HERE), I really thought that door was ajar.
I had grand visions of all the possibilities. Oh I wasn’t naive enough to think it would happen all at once, I know Lucy’s iron will too well for that. But I envisioned the gradual changing from loneliness and feeling like she’s the “only one” to acceptance and using all the awesome vision aids hopefully surrounded by some friends who are also dealing with some of the things she is dealing with. (She is so lonely lately.)
The next “super Saturday” activity coming up was a “Cane Quest” and I signed her right up.
Oh I was knew there would be some good push-back. She has been very against using her cane lately. I think someone may have said something that made her feel bad about it? :(( Because she carries it folded up instead of extended, is extra obstinate with her mobility specialist at school and has been complaining about foot and shin injuries she got from a dark hallway at school where someone left a crate out.
True to my expectations, she was ANGRY when I first mentioned the cane quest idea, and after giving a good fight, we decided, with some help from her mobility specialist that this may not be the best timing. But then the lady in charge at the Foundation had the idea to have Lucy come at least just to observe, not be a contestant, and Dave and I bought into that idea hook, line and sinker. We had Elle home (who Lucy adores and would do almost anything for), and we figured that would be added ammunition to get Lucy to accept even the idea of going as a family to check it all out. Claire would be home for once (she has had volleyball tournaments pretty much every single weekend lately and is another Lucy hero), and oh! how this might have the potential to help Lu remember that canes can be so awesome and helpful.
So, as Elle and I sat at the table after some good card games the night before, I thought about that “labor of love” as we labored our hearts out to calm Lucy’s fears and soften her adamant “No!”s as she was so flustered, hot tears pooling up beneath her glasses. But after lots and lots and lots of talking and emotions, (I don’t want to ever take this next part for granted), the air of frustration dissipated into thick love and Lucy decided maybe going to observe and meet some people at the Foundation wouldn’t be the worst idea after all.
I went to sleep just so very grateful.
We got up bright and early the next day and headed into Phoenix to meet all those good people at the Foundation for Blind Children filled up with so much hope.
Their goodness exceeded my expectations. They are so incredibly welcoming and kind.
We sat in the orientation marveling at how awesome this place is:
We had Lu read us some Braille:
We followed a few kids as they maneuvered the “course” complete with fourteen different stations with their canes.
They had to do things like listen to traffic signals so they could cross streets, maneuver around parked cars, show they knew where driveways were, etc.
Lucy was pleasant for the most part, with a punctuation mark of anger here and there when she thought people were treating her different from everyone else. This is tricky business I tell you.
But she did it.
WE did it.
And there was something so glorious about that morning in the slanted sun learning all about canes and their awesomeness.
We sat with a table of darling girls about her age after they had finished, asking all kinds of questions and trying to get Lucy to talk to them (she was shy, but thinking hard and taking it all in), and we left feeling so incredibly grateful for that morning spent with people we hope will become more of her peers some day.
Sometimes patience is difficult.
But that “labor” along with love is a pretty beautiful thing.
And also, sisters rock.
Did I mention the fourth sister GRACE COMES HOME TOMORROW???
❤️love this so much! There’s nothing like a great sibling support system! Cousins are awesome too! Does she have some local cousins who can lend this kind of support when her siblings are out of town?
What are the best resources to connect families new to a BBS diagnosis? I just found out that a friend has a family member new to this journey.
I know a tiny smidgen of the fear that Lucy must feel and has felt her entire life. I was convinced as a child that I would go blind by my 20s because every year my eye sight got worse and worse. Everyone exclaimed at how bad of vision I had, how thick my glasses were, how I couldnt see anything that I was just convinced I would be blind. Of course being so shy I never asked. I just assumed until I was in my 20s and finally asked the opthamologist and he explained my sight would level out which it has. I am legally blind without correction but at least I can see with contacts. Its a horrible fear and I have always had such a heart for Lucy slowly losing her vision. I am so thankful there are others to encourage her and let her know that she, Lucy, isnt all that different. A beautiful person loved by God, family and friends. I pray she will embrace all that the school has for her so she can live as independent as possible.