Monday, May 18, 2015

Lucy lately

We have been so excited about Lucy and her continually evolving bike skills.

Lucy has an IEP at school.  When she was younger it included speech therapy and physical therapy and a class "helper" but over the years it has dwindled down to simply vision help.

I cry in every one of those meetings because my heart wants to burst with gratitude for all those wonderful teachers surrounding me who have helped her more than I can say...different ones included every time.  How in the world did we get so very blessed to rub shoulders with people who have learned to love our feisty girl so much?

Each time we meet we talk about Lucy's strengths and weaknesses, her successes and triumphs and also about what is worrying us going forward and we make some goals going forward.

As we got talking this last time around I told them about her new biking skills and the vision teacher got a worried expression.

Instantly I realized why and wondered how I had been so caught up with the glory of it all that I forgot the actual reality:  Lucy is officially legally peripherally blind according to her latest tests.  So although she is getting stronger and stronger on her pedaling to keep her safe as she rides, she's getting weaker and weaker with the ability to see what's around her and navigate.

Oh how my heart sunk there in that room that day.

There are certainly ups and downs with BBS.

I don't know how much I have said about her art class before, but she's been taking one the last few months with the most amazing teacher.  When I first signed her up over the phone I talked to the teacher for a half hour.  She was a kindred spirit and I knew it before I even met her.

Lucy was enthralled with the class and loved being a real artist with her real artist supplies.

But she started needing more and more help, which in turn made her more and more grumpy.  There are 15 kids in that class so the teacher couldn't give her the attention she needed so I volunteered to accompany her to class each week (we had to change the day but it all worked out).  I realized sitting there next to her that probably the biggest reason for her grumpiness and needing attention was that she couldn't see what her teacher was drawing and she couldn't decipher the colors as well as she wanted to.

Well, and she's stubborn to top it all off.

It was a special gift to me to be able to sit there with her in class as her "assistant" and take in a little more about how she learns, how she sees, how she communicates.  Something I will treasure for a long time.

But it still made my heart ache that she couldn't see those lines or colors like she used to.
She was pretty proud of her final project.  
...and so was I.

The class finished up at the end of last month.  Is that the most darling teacher ever?  She gave Lucy a big, huge hug after every class and Lucy sure felt her love.

All the other kids are signed up for next year and kept talking in great anticipation about it, but the teacher thinks it will be a little over Lucy's head.  Lots of small lines, shading and perspective.  As much as I agree (the gap is widening and I don't want her to feel bad about herself as an artist...she sure has her own way she wants to do things and I love it...I want to keep that confidence), but it still feels so heavy and sad to me.

As much as we try to keep her going in the things she loves, she's starting to lag behind in many of the physical ones.  We signed her up for dive team this year since she was so behind in swimming last year, but as I sat on the sidelines this week watching the special attention those teachers were giving her as she tried to maneuver how in the world to make her head go in the water before her belly or feet, I was overcome once again with an outpouring of love and gratitude for those who slow down to help this daughter of mine.  To love her for who she is.  To look over her quirks and treat her as they treat the other kids.

And it made me want to hug them and tell them, right in their eyes with tears in my own, what a difference they are making for one little girl with their patience and kindness.  And for her mother.

So I did.

So grateful for all of those helping hands who raise all my children (not just Lu) right along with me in so many wonderful and unique and loving ways.  


  1. Have you heard about this pod coast on This American Life?

    It might interest you regarding the bike. I know how hard you have worked to help Lucy ride that bike. I hope she's able to continue to ride it as often as she likes.

    1. I was going to suggest the same podcast! What an amazing story. Worth listening to for more than just the bike (although that may be the part that is most startling) to hear how someone without eyes (I believe they were both removed when he was a young child, right?) navigates in this world and to hear his views about how the expectations in this country for the visually impaired shortchange them.

  2. Heard about this guy awhile back:

    Just remember that because Lucy won't be interacting with the world in the conventional way you or I do, doesn't mean that she won't have beautiful interpretations or understandings of it!

  3. I wasn't sure if my last comment went through. My husband used to volunteer at a camp out there for kids with visual impairment. They do fun things like tandem biking, swimming etc. Thought you might be interested!

  4. I wasn't sure if my last comment went through. My husband used to volunteer at a camp out there for kids with visual impairment. They do fun things like tandem biking, swimming etc. Thought you might be interested!

  5. Proof that it really does take a village!!! She is so lucky to have so much support through all of this. And I must say that her baking picture looks like the cover of a children's book- so cute!

  6. My son is not vision challenged but does have special needs. He is involved with a org that provides recreational activities for adults and children with special needs. In some cases they are where he does the activity. In some cases they can meet with the local park district and help the staff there amend the activity to accommodate the person in a realistic way. For swimming we just do private lessons and he does swim at camp which includes kids with various abilities. My younger cousin did special Olympics through the group in her area. Isn't anyone discussing leisure opportunities with you at these meetings? Do they not exist where you live? You should not have to be creative all on your own to make typical activities fit and typical expectations fit. What about other families with vision challenged kids in your area? What do they do? Is she able to be around kids like her? My son has been mostly mainstreamed and let me just say those groups of activities where he can be a little bit quirky and not try so very hard to fit in for a change and be with kids like himself is a godsend. That is where when he talks of those kids the word friend is used. Our natural tendency is to make them adapt to the world. It does sound ludicrous we are expecting them to do the adapting all the time. Is it fair? Is it harder for us to enter their world?

  7. Lucy is blessed to have you as her mother as well as all the other people that have come into her life. I love her art work and hope that she continues to create more.

  8. A friend of mine who teaches art advised me that she can make three dimensional art and there are even encaustic painting techniques. She knows what a red looks like to everyone, and a blue, etc. Plus, there is sculpture that she could try her hand at. Don't stop creating, Lucy! :)

  9. I am SO grateful for those wonderful people as well. Tears filled my eyes as I read this .It's pretty amazing that she is mainstreamed as much as she is! She is one amazing child and with that perfectly delightful giggle, she's going to continue to be astonishing in all the things that she is able to do! Love that girl!

  10. I agree! I hope she can keep as many skills as possible--but I also wonder if she might not be an amazing sculptor...
    So much love to both of you.

  11. I know we live in different states, but oh one day I hope to magically run into you and your sweet daughter Lucy so that I can give her a big hug! (is that creepy? I'm so sorry. ha!) Every blog post about Lucy brings tears to my eyes. I can feel the love that you have for her. What a sweet unique spirit that she is!

  12. I just want to say how much I LOVE Lucy's artwork. I would totally hang "Lucy's Bakeshop" in my kitchen. I am so glad she is surrounded by such loving teachers. What a blessing for sure. I'm happy Lucy is enjoying riding her bicycle so much. Live in the moment and live it to the fullest. Your family has taught me that. Lisa

  13. My heart goes out to you Shawni! It's so difficult to celebrate and mourn at the same time but it's what you're having to do. I understand. It's a crazy journey that we're on with these amazing BBS kids, isn't it?!

  14. If Lucy really continues to enjoy biking, but you are worried about her ability to navigate, you might consider a tag-along bicycle set-up or a tandem! This is an article about two blind brothers who biked across Australia: using tandems and here is one maker of a tag-along or trail-a-bike:

    Just a thought from another mom who loves watching her kids be active! Lucy's situation really pulls at my heartstrings, keep it up, you are doing hard work, but you are doing it well.

  15. Ah, this was so beautiful and I am so amazed by how talented she is for someone so young! Have you guys looked into pottery or other more tactile mediums? That could be one way to keep her active with creating over time. Sending her (and you) a lot of strength and love.


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