It’s strange because there really wasn’t anything in particular that happened to bring us to this. We guided her over rocks, we helped calm her emotions, we pointed out little things carefully so she could see them. All of that has become second nature. There were no out of the ordinary outbursts or meltdowns…it was pretty much business-as-usual. So I don’t know why this particular day was the dark one, but it was, and Dave and I both knew it without even talking about it.
I don’t want to dwell on that sad thing, and really, I don’t think I need to write this down to remember it. But I don’t want to gloss over it either. I don’t want these pictures telling the rest of the story to just sit glowing out of the computer screen pretending like nothing happened to change our hearts this day.
It’s interesting how pictures can do that. That’s the crazy thing about social media.
So I’m throwing it out there as part of the story. Maybe writing about it will help me define it better.
Here are some snippets from my journal this day:
in the middle of the ocean…just finished playing “Lucky Unders” with Lucy at a little fold-out
table. The smell of gas is so powerful it’s making my stomach churn. Lucy is
somehow unaffected by this. The rest of our family is sitting on a makeshift
little rubber boat out in the open air on the back deck sick as dogs with
motion sickness, but there’s something about the motion mixed with the intense
gas smell that’s getting them. The sun is just starting to filter through the
clouds after a thick, heavy gray when we took off an hour ago.
We are in the Galápagos Islands. Between San
Cristobal, the island where were staying with the stinky sea lions in a cute
little town that can boast authenticity but definitely not good food, and a
little uninhabited island called Española which is our destination today. As our companions on this boat there are two
guys from Ohio, a guy from the country of Columbia, a lady from Ecuador and two
ladies from Romania (yes, Romania!). They
are all kind and good and make me want to learn all I can from them…as soon as my stomach stops churning 🙂
Our first stop was to snorkel. Lucy was pretty adamant that she did NOT want to do that thing, but I felt pretty good about pushing this one. She fought the wetsuit but we somehow lured her in it, and a life jacket too, and she came to grips that this was happening. She’s so lucky to have sweet sisters who distract and make things exciting for her:
After a good bout of complaining she got in and at least put her head under water to see if she could see the giant turtle right in front of us.
She couldn’t see it, and didn’t have the coordination to hold the breathing tube in her mouth (it’s so easy to take stuff like that for granted…seems like it should come as second nature but to some people it doesn’t), and she did NOT want that mask strap around her head (sensory). But once in the water her body relaxed and she smiled just to be hanging out there, floating along with us, which made us smile too. Sometimes it feels so overwhelming to know how much to push, but I was so happy that I pushed this one…that she would be part of the fiber of that family memory, bobbing on the salty sea into little caves with her family, being pushed gently by her dad since she refused to wear fins and couldn’t keep up.
She was glowing that she did that thing, and so were we.
We were greeted by a bunch of these guys when we set foot on the little island:
And he was right. It did get worse. Something I never would have given a thought if it weren’t for Lucy. It is so easy to take movement and walking for granted. So she and Dave turned back (he wasn’t overly interested in the bird watching so he was ok), and we went on, through lots more fascinating marine iguanas and birds.
(Elle took lots of film photos…can’t wait to see how they turned out.)
I loved the different colors on this mountain-side:
…and these “blow holes.”
…back past the iguanas once more…who were very good posers:
Sorry I got a little carried away but look at that beauty!
(Lots more about Galapagos marine iguanas HERE.)
Back to our favorite pizza place one more time (I think this was the fifth day of pizza…but honestly so few options), and cold showers and Rumikub plus stuff like this back at the hotel:
We went to bed with such full hearts…so much gratitude to be in that amazing place with people we love so much. But there was some heaviness accompanying that fulness… mulling all the feelings and thoughts over from the day. I want so much for Lucy to be a part of all that we do, which means we need to find a new kind of balance. This was a tough thing to swallow…and I still don’t really know what it means, but it rested heavy on my heart for the rest of the day…and the rest of the trip too. And even now, sitting in my kitchen back at home, it pricks tears behind my eyelids.
We all have them: these twists and turns in the road of life. I don’t think anyone is immune. They come in all different shapes, sizes and varieties. It’s not so much what they are but what we do with them that matters. We’re all on a grand journey to figure them all out.
…and hopefully we remember to ask for help and guidance from above to make sense of things in the process as we find our way.
My son has special needs.
I wanted to cheer when I read about your realIzing things are different. This is a good thing. It really is a good thing. So proud of you.
Adjust to her, not make her adjust to you. Her world is different from yours. Parents are not just supposed to teach the kids, the kids teach a lot. Get in her world.
Your duty is to raise Lucy. You are parents. You can be successful at that even if she loses her vision. You can be successful even if she doesn’t share the same roadmap in life as the others.
I love how your faith shines through in all you do! Faith on! Journey on! XOXO With God all things are possible! : )
Thank you for sharing!
Praying for you and your family in this time of realisation. It mustn't be easy but oh how wonderful for Lucy to have such an incredible family and support network. How lucky is Lucy to have been able to see so many amazing things in the world, my 15 year old cousin born without sight is very jealous. I recommend reading Kelly Hampton's novel Bloom about her understanding and growth with her daughter's unexpected Down syndrome diagnosis x
Those Iguana's are beautiful, I've never seen such colorful ones
My heart goes out to you and your family. Thank you for your candidness and sharing your heart. I’m glad you realize in this crazy journey called life it is much more bearable when we ask for help from our loving Father in Heaven. Thank you for this wonderful blog. Life is Good 🙂
I'm thinking about how difficult it must be to try and plan when you don't know what Lucy's physical capabilities will be in 3 months, 6 months, the end of 2018, etc.
It takes so much courage to push a child who is resisting. I have been amazed at all that Lucy has done because you have pushed and cheerleaded her along the way.
I'm wondering if everyone in your family has tried those goggle/glasses that Lucy's Braille teacher used at the beginning of the school year to show everyone in the class what it is like to have limited sight.
Long ago I worked with a man who let his 10 year old son and 14 year old daughter each be responsible for planning a family vacation. They definitely did some things that the parents would never have chosen, but they also noticed things that they would have missed i.e., the son pointing out all of the birds at the Taj Mahal.
Thank you always for being so honest and vulnerable and sharing your journey. Love, hugs, and prayers sent your way. Libby
Thanks for sharing this with us, Shawni. You love and honesty shine through. I have no doubt Lucy will continue to have a rich life filled with her own kind of accomplishments and adventure, with you all cheering her on every step of the way. They might not look like the accomplishments and adventures of your other children but they will still be just as wonderful!
Lucy is different, and that's ok, even when she's very different from what you expect, plan for etc.
What an amazing adventure you've been describing! What struck me was this part of your post… "But something shifted this day to make me realize we have to find a new balance. We need to revamp the fight somehow. And I don't know how…yet."
My daughter recently brought home a reading assignment that discussed the power of the word "yet." (wish I could find a link for you… but I think there are TED talks and such about it.) I think your "yet" chosen here is the realization is that you (and the family) will – the power of positivity is a wonderful gift.
I feel your mama grief . We have a 7 year old on the autism spectrum and we have to do a lot of shifting of expectations , trip planning, social gathering, etc. I can also relate to never really knowing the balance of pushing vs just letting him stay in his comfort zone. I listened to a podcast recently that’s really stuck with me. I’ll see if I can find a link. The woman talked about avoiding borrowed grief by thinking about all the ways her child would be limited in the future. Obviously we have to plan for possibilities, but I’ve been really trying to avoid grieving things I think will come or ways he will be limited as he grows older. Thanks for sharing.
Thank you for blogging. If I put my life out there, I'm sure people would have a lot of advice. That being said, has your family ever tried to live life in the way that Lucy must? It would be interesting for you all to wear blindfolds or something to impair your vision and go on a hike (with sighted guides). Or go a whole day with impaired vision just to understand what it must feel like. I'm not criticizing. Maybe you have done that exercise already.
Your kid seems awesome. Thank you again for sharing.
Thank you for all you share. My thought as I read your post was that Lucy has more senses than just vision, and hopefully your family can seek experiences using more of those – music, sensory gardens, etc. Not everything has to be outdoors to be a wonderful adventure.
Oh I can only imagine how hard it is for all of you!
One of my best friends was born blind, so I know a bit of hard. I don't think she'd mind talking to Lucy if she ever wanted to!
I really appreciate you posting the good and the hard in your life. What an amazing family you have, you inspire me daily with your words. You are just the mother your children needed and while it's hard knowing what those needs are all the time…. you will be guided and the knowledge will come as each challenge arises. All my love to Lucy and your family!