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May 16, 2015

They say that the tree of loving
Shine on me again
They say it grows on the bank of the river of suffering
Shine on me again, and

Weave, weave, weave me the sunshine out of the falling rain
Weave me the hope of a new tomorrow, fill my cup again
If only I could heal your sorrow
Shine on me again
I’d help you to find your new tomorrow
Shine on me again

– Peter, Paul and Mary

Funny what gifts can do.

It’s been difficult for our family these last few months. Some of it you already know, some of it simply isn’t my story to tell. But it’s been hard.  The changes, the medical challenges, the unknowns…. There have a been a lot of days when I just get so overwhelmed by all of it. I just want to throw my hands in the air and….. And what? I mean, really, what? I can’t quit. This isn’t a gig that comes with that kind of option. So we keep going. We keep trying. We keep thinking of new ways to do things that seem to come so easily for other kids…. It shouldn’t be this hard… That kind of thinking can lead you to a dark place.

But it is hard. And that should be okay for us to say. That’s not to say we should wallow in a pool of self-pity. But we can admit that it’s hard and do it anyway. Because, really, what other choice is there?

It was a long, cold winter here. And in the midst of the cold and the dark, things started to take a frightening turn for Mary. Suddenly we were dealing with yet another new symptom. Suddenly, we had all kinds of medications. We were dealing with regressions when she had been doing so well just a few short months ago. Suddenly, so much hard-fought progress was lost….  It started to feel like spring would never come. It started to feel so damned lonely.

But in the middle of it all, an amazing group of volunteers showed up on our doorstep, telling Mary that they would grant her one wish. Any wish. Just one thing to make her happy. It was the Make a Wish people. Suddenly, there was a light to look forward to…


And then things got darker for a time. Mary and I were out shopping with her behavioral aide. Suddenly Mary lit up, a determined smile crossed her face and she wheeled herself over to a bed in the children’s furniture department. Since she couldn’t reach with her hands, she used her foot to tell us what she wanted…..

IMG_4623 IMG_4624 IMG_4625 IMG_4626

We giggled a bit, at her tenacity, but I was in awe of her determination to show us what she wanted. I was so proud of her, I posted it on my personal Facebook page. But I was going to have to juggle some finances to make it happen… And then suddenly, an old friend texted me: Mary’s bed will be there Tuesday.  Grateful doesn’t begin to describe what we felt.  That had been such a dark week. Until right then…

A few weeks later, in the midst of switching medications again and tracking seizures, regressions, studying evaluations for IEPs and sobbing over the frustrating age level comparisons, we got another phone call. A local children’s charity wanted to present Mary with a bike. Not just any bike. An adaptive bike built just for her, so she could do something so seemingly simple, that until that day had been a general impossibility: She could ride a bike outside with her brother and sister. Just a kid on her bike.

IMG_5076 IMG_5081 IMG_5097 IMG_5113 IMG_5114There’s been more, of course. There has been so much going on lately. We are in the midst of IEP season, of course. I approached the principal of Mary’s school the other day with a list of requests, not entirely sure if we could manage to do any of them.  She looked over the list, and she said, “the short answer to all of this is YES.”  And what about this one, I asked. “Well, we’ve never done it before, but that doesn’t mean that we can’t do it for Mary.”   We just had to clear it with the school district.  And their answer melted me. Because I hear the horror stories. I know about the big battles with school districts and schools.   But this man said to me, “so long as we are doing it to support your daughter, then I’m all for it.”

We can’t fix every medical problem that our kids have. For too many of our kids a cure just won’t come. But hope, that’s something different. So many times this year, we have been lifted. When the load seemed unbearable, someone would step in and without saying a word, they would lift some of that weight, refill our cup of hope. It’s an amazing and humbling experience.

Tomorrow our city is having a fundraising walk. It will benefit many different organizations, including Make a Wish, the Variety Children’s Charity that donated Mary’s bike, as well as Mary’s school and the rehabilitation center, where she gets so much of her therapy, that referred her to these amazing charities. So when you’re watching the news tonight, and you start to feel helpless and frustrated with all the ugliness out there, maybe you might want to take a minute and find one of these charities and make a small donation (tell them Mary sent you. 😉 ). Or go help your neighbor across the street with a nice casserole or a bunch of flowers. You may not be able to solve their problems, but you may never know just how much that small gesture may mean to them.

Only you can climb that mountain
Shine on me again
If you want a drink from the golden fountain
Shine on me again

Weave, weave, weave me the sunshine out of the falling rain
Weave me the hope of a new tomorrow, fill my cup again.

-Peter, Paul and Mary


12 Comments leave one →
  1. May 16, 2015 12:43 am

    Reblogged this on BEAUTIFUL WORDS and commented:
    This is a beautiful post written by a mother with children with disabilities. I hope you will take a moment and read.

  2. May 16, 2015 12:44 am

    I just reblogged this post to my blog, “Beautiful Words.” I am so happy for Mary that she received that beautiful bed and awesome bike!! Three Cheers for Mary!!

  3. life+ink's RENESTING permalink
    May 16, 2015 12:56 am

    “find one of these charities and make a small donation (tell them Mary sent you. ;)” When the moment presents itself I will indeed do this, and most definitely will tell them, “Mary sent me.” (and her most inspirational mother) 🙂

  4. May 16, 2015 1:04 am

    Such a touching post!! Hugs to Mary and her family!! Thanks for sharing!

  5. May 16, 2015 3:29 am

    Thank you for sharing this heartfelt post. I’m so happy Mary and her family are getting the support they need. It’s wonderful that Mary was able to choose her special bed and the thrill of getting it. I enjoyed seeing the photos and happiness in them. May we all be mindful of the needs of others and try to help and support them in any way we can.

  6. May 18, 2015 3:14 pm

    We are constantly bombarded with so much ugliness in the world it’s nice to read stories that speak of kindness and hope. I’ll be praying for Mary and her family.

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