The day after our meeting with the low-vision doctor that I talked about back
HERE, Lucy came home with her new white cane.
That is how on-the-ball her teachers are.
When she pulled it out of her backpack (it folds up to fit), and showed us all how it works with a glisten in her eye, Dave and I looked at each other across the counter knowing inside as we locked eyes exactly what the other was thinking. Our hearts were breaking as we smiled trying to join Lucy’s excitement.
This is a good step. A really, really great one actually. She has been very defiant until now about NOT getting one of those things despite the fact that we’ve felt like it would probably be good for her. And suddenly she is realizing the beauty of what it can help her do.
But that doesn’t make it easy.
I figured it would stay in her backpack most of the time, and maybe she’d start using it gradually but a few days later when we were getting ready to walk to school she whipped it out and was ready to go. As we walked she told me, with a big smile stretched across her face, how much she likes to use it, and that it makes her walk “faster.”
And it did. She was pleased as punch using that thing along that sidewalk en route to school, and glowed with confidence and happiness when we arrived.
When I related that story to Dave he let me know that he had seen her walking home from school with it too. And that he didn’t want to say anything at first. It’s kind of a tender topic for us.
Over the last little while we’ve been pretty amazed with how much more confidence that thing gives Lucy. And it is so good. We feel so grateful. And we started getting used to that new thing.
It’s an interesting adjustment.
Just when I started getting used to the fact that she liked to carry it around, we went to the store together.
I was unprepared for the looks people gave. Somehow made it more real. It’s an outward symbol of something that is wrong. Which in so many ways makes it all right, but I don’t know quite how to express what’s in my heart about that.
There are all kinds of emotions rolling around in there. But mostly gratitude that that thing is changing the way she can maneuver and live life.
She clutched it through the whole “Fun Run” portion of the Turkey Trot, flanked with loving cousins and lots of people cheering her on.
And it is here to stay.
So I just wanted to introduce that thing here on the blog.
Because it will be showing up much more often around here.
My mama heart breaks for you. 💔 I'm so glad she is embracing it and gaining confidence from using it.
Tears. So grateful for her excited heart and sweet attitude. So aware of the torment churning in your heart and head. Praying for peace for everyone, and a cure!
Shawni, You've written so beautifully about your mixed emotions. That word "tender" is a gentle and powerful all at the same time. The last photo of Lucy with her cousins and her many supporters is an excellent representation of all of us cheering you and her on. Thanks for sharing your joy, pride, and challenges with us.
And I love that Lucy got to wear #1!!
Sometimes that outward symbol will, hopefully, help others to be more understanding. I have a son that has a serious struggle with mental illness & my heart breaks daily because of the things he has to deal with. And, there isn't a simple way to explain to those around us how hard things are for him. Hang in there…
Shawni, when the doctors told us Michael's loss of his facial muscles would be permanent from all he had to go through to survive brain cancer, I was a mess. I couldn't believe our new reality. There are so many levels of grief, gratitude, confusion, acceptance. It's 'tender' as you describe. I think it's human nature that we all just want to blend in with everyone around us and not call attention to ourselves, especially when it symbolizes to others that something is wrong. I still sometimes have those feelings 6 years later and just want life to be "normal." Over thanksgiving we pulled out one of the last pictures we have of our son smiling and it brought tears to our eyes again. Not that we don't love Michael's adoring half smile on half of his face (he still has 10% use on the right), but just missing when things were just what they were. But time is a great healer and you will find a new vista and a new love with the changes in Lucy. And you will be surprised the wells of courage this experience will carve out in your heart. And the hearts of your kids. And friends. And family. Hugs.
What a wonderful family you are- holding each other in such love and compassion and courage.
Lucy is a rockstar:-)
After years of following your blog I have this strong feeling that Lucy is the one who is parenting your family, educating her friends, classmates and teachers,and inspiring all around her, and not the other way round. Great things are coming her way just because she uses her heart to see!
Love
Anamaria
I love how Lucy is looking for the positive (it helps her to walk faster!)
My sister was in an auto accident and left quadriplegic- she is in a wheelchair that is controlled by a sip-n-puff (straw in the mouth) and I know those looks and stares from people in public. It's not easy…but if anyone can do this Lucy and your family can!
Our future is as bright as our faith, right?
But even so, tears are okay-heartache is okay-it means you LOVE deeply. I think we catch a glimpse of the Savior's love when we go through these heartaches for those we love deeply.
Love your blog. Love your family. Thanks for allowing us to share your journey. And I agree with Anamaria, Lucy is a rockstar! I love that statement, "she uses her heart to see!" That is beautiful and so true.
That last photo of her surrounded with people she loves is symbolic of how you all will get through this. Surrounded by love and friends and family. Lucy will be leading them all!
My mama heart aches for you, for all you said and for all you couldn't say. What a strong, amazing girl you have in Lucy! Also such incredible ladies who commented today. You all added a beautiful spirit to my day. Thank you for your enthusiasm and zest for life and the gospel. Sherri, blog reader of 6 months in Orem Utah.
I can tell this is very new and emotional for you – even just in your writing you used the word cane 2x (once in the title) and called it "it" or "thing" the rest of the time. Thank you for sharing this even while it is new and raw for you. 4 of the 6 people in our family wear hearing aids, and it has been interesting to see how reactions to them have changed depending on the kids' ages. Now at 8 and 10 they are happy to educate others (usually!), whereas before I was the one telling strangers in the grocery store about my baby's hearing aids. I love Lucy's optimism and drive – she is so blessed to have supportive parents and teachers!
THANK YOU for all the kindness and love spilled out here. It means so much to us. We feel strengthened by all the goodness out there, shared here on the blog as well as in emails. It encourages me to push to support others in such similar situations as well. Things that show on the outside and things that are secret sorrows from within. We all need each other and I'm so grateful that we can band together for goodness and light. Thank you for sharing your stories and your light and goodness.
xoxo,
Shawni
Oh Shawni! I can't thank you enough for all the things you share with us & I've been meaning to write to you for years! I somehow found your blog ten years ago & have turned to you all these years for motherly advice & inspiration.
I actually saw you last year on vacation in Paris of all places! You were taking pictures of your girls in the front of Notre Dam & I really wanted to come meet you but didn't want to interrupt & was feeling a little shy about it….but I've regretted not saying hi ever since because I feel like your a friend in a wonderful cyber way & would have loved to give you a hug to say thank you in person.
I just wanted to finally tell you thank you for all the work you do on this blog, it is much loved by me. And by following you these years i've grown to love your family so much. My heart feels joy for the beautiful things you do & hurts for the hard things you face. You're in my heart & prayers & I hope you know that you are doing a wonderful work with this blog.
Next time I see you in Paris I will for sure say hi!
Much much love & gratitude, Courtney Nielson (Reno, NV)
It's natural and understandable to see assistive aids like white canes and wheelchairs as being a sign of something that is wrong, but often for the person who is using them, they are really a symbol of freedom and independence. My wife and several of our friends use wheelchairs, either all the time or some of the time, and they've often talked about how when people with progressive conditions are told by doctors that they might "end up" in a wheelchair, it's usually presented as a negative which should be avoided if possible. In reality, if you are struggling to walk (or to see, or to hear, or to do whatever it is that a condition can make harder) then a wheelchair (or cane, or hearing aid, or whatever) is a huge positive. I'm so glad that Lucy has recognised so quickly that the cane gives her more ability to move around. It's not what you imagined for your children, but then when do we ever imagine perfectly what is coming for us?
People might be looking and seeing something that is "wrong", but they equally might be looking and seeing a child who is embracing the tools that help her be independent, and recognising that. They will be noticing a sign that indicates things they can do to assist her, or at least not to hinder her – moving things so they aren't trip hazards, or being aware of how they move around Lucy so as not to get in her way. I'm sure there will be people whose reactions are "oh, what a shame" but there'll be plenty who also see it the way Lucy does, as a piece of the puzzle that is her independent future 🙂
Maybe she can give "that thing" a name! I bet she'd come up with a good one!
♥️