I know what it is to live entirely for and with what I love best on earth.-Jane Eyre by Charlotte Brontë

Mona's Musings

January 3rd, 2010

The Carousel

Ashley has never in twenty-nine years, uttered a single word. Except for groans in alto and squeals in soprano, I know her meaning by the way she breathes. And on a merry-go-round when she is perched on a stallion with a red flowing mane, her breath becomes a vacuum, sucking every particle of pleasure out of the air. I’d like to say she holds on for dear life, but she doesn’t. Her delicate hands barely touch the golden pole that runs straight through the spine of her mount. That is why I have to stand next to her — for twenty-nine years I have stood next to her — supporting her spine, which also has a pole running through it; a permanent rod that foiled scoliosis temporarily. I am always frightened she will fall…random gasp, warped back, feather grip, wild horse.

Lady Ashley and I have been undulating and revolving in the same orbit since the day the nurse said: A perfect baby girl. She did look so perfect. I weep over the twenty-one year-old mother admiring her tiny firstborn, dreaming so big. The dreams dwindled down to an appreciation for each day, just one day, just an anything-but-ordinary-day.

She is an angel without wings. Atop a carousel horse though — she flies. Every lurch lifts her into the glossy clouds; brushing a mirrored sky. And the tighter she squeezes her eyes, the higher she goes. She peeks down ; I’m still there, trying not to interrupt her reverie with the stars. When the bulbs stop blinking, I push her wheelchair back to earth.

I muse: How is it that I am both mobility and immobility to my child with disabilities? How is it that I am both food and starvation? Mothers are powerful creatures; perhaps too powerful at a certain stage of life. In natural cadence, my other children lolloped ahead of me, while Ashley remained strapped to her plastic steed; buckled forever I thought — until recently.

After weeks of soul searching and with the encouragement of those who love us both, I tentatively let go of the reins. Wide-eyed, Ashley sped off without falling off; gulping the air in a sky of real clouds; her heart beating the exhilarated rhythm of a horse set free.

Do your magic dear one. Serve others while they think they serve you. Teach what you have taught me: patience, simplicity, innocence, charity. And if you really don’t mind, I will mount my own mare and see where she takes me. They say I can’t stand forever where your horse once was.

(This summer Ashley settled into an adult care home with her two favorite friends. The three of them, under Millie’s tender and meticulous care, are their own family. Nearly every day she takes the bus somewhere to do something fun and interesting with more of her friends. She and I return to our “carousel” on weekends.)

Muse with me: Have you had to let someone grow up and grow out of their dependence on you?

(Click the arrow on the right for “Old Ladies”.)

What did you think of this musing?

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Discussion

  1. Sharon says:

    Gorgeous new site! Beautifully written posting, it made me cry – and I’ve been privileged to witness you live this story first hand! You’re two amazing women, both with difficult challenges who have met them well and taught us all! Thank you!

  2. David says:

    I still remember Ashley’s physically visable heightened responses to the more spiritually moving passages of our Stake choir practices. It was always such a pleasure to see her spiritual barometer in action.

  3. Susan says:

    I love the new site. I love the way you write-poetic. I feel like I should sing the words and music plays in my head when I read it and tears are on the surface. I have worked with handicapped children my entire professional life. They are dear to my heart and I always made sure I talked to Ashley whenever I saw her. In my mind’s eye, I see her face and warped body and hear her squeals and I smile. As I “teach” handicapped children to be more independent they have been my teachers. I love that she is more independent and that you were brave enough to allow her to be so. I am glad she is learning new adventures and making new friends and that you get to do the same. :)

  4. Trina says:

    Glad you’re back to blogging. You may have been back for a while but if so I was unaware until I received your email.

    The poetry is beautiful-you’re truly talented. I’m seeing this from a couple perspectives. I’m cutting the apron strings from my 18 rebellious teenager. He’s been pulling for a couple years now. I’m scared to death. If the rebellion wasnt’ there, and the pull so tight I think I could handle it much better.

    The other perspective I have is probably more relative to Millie. We have truly been blessed for this past (almost) year when we took a young man into our care. He’s 18 but developmentally 18 months to 3 years and also nonverbal. I loved the line “Do your magic dear one. Serve others while they think they serve you. Teach what you have taught me: patience, simplicity, innocence, charity.” He has definitely done his magic on us. Although his family and other various workers say he’s excelling, flourishing, and happier than he has been for years I have to say we as a family and individually are excelling, flourishing and happier than we have been for years. What an amazing experience this is for us.
    We now associate with royalty in it’s truest form here on earth. What a blessing to experience his majesty.
    My question to you, Do you ever wonder what your Ashley did in the pre-existence to have already proven herself? I can’t wait to find out just who it is we get to have as part of our family.

    • mona says:

      Trina! I had no idea! People like you and your family are ONE IN A MILLION…it is a GIFT. My respect and admiration for you has ballooned a hundred-fold. God bless you.

  5. Angel Day says:

    Mona:
    As a little girl, I used to be scared of Ashley. Not understanding what was physically wrong with her. But after growing up in your home, seeing Grant and Hannah…especially Hannah…adore Ashley and spend their time making her laugh and more happy than she already was when they could be doing something else, I grew to love Ashley. As I think back now, I think it started with the love that Ashley would project as she would watch us play. I used to wish I could read her mind and see the things she sees. I grew to understand what a blessing it was to have her around.

    • mona says:

      Angel! Your childhood perspective is dear to me! You all gave Ashley lots of laughter and delight for many years and I love you so much for that.

  6. Bonnie Holt says:

    Mona! Again, this is such beautiful imagery! I’ve never met you—yet you pulled me into the moment on the carousel, and then, before I realized where we were going—I witnessed your beautiful child grow up! How poignant your empty nest is! Dear Mona your new site is breathtaking, and I am glad that you invited me to participate!

    • mona says:

      Bonnie, My “beautiful child” — thank you for that. I have never put those two words together to describe Ashley and they perfectly capture our relationship.

  7. Wow! Mona, that was beautiful. I’ve always had a soft spot in my heart for those who are physically and mentally handicapped. Ashley obviously did something wonderful in the pre-existence but I think you must have too. Thanks for sharing a piece of your heart with the rest of us!

  8. Bonnie Holt says:

    Mona, I simply described the picture you painted of your love for Ashley! Thank you also for your kind words on my blog! Our feelings and desires are so similar! Oh it’s truly a beautiful thing to find a “bosom friend”! God bless you Mona!

  9. Sherry Petersen says:

    I see Ashley soaring and you too!…spreading joy where you fly…
    Love you,
    Sherry

  10. Olivia says:

    Mona. Wow. That must be difficult.
    I did have to let someone go once. It was the trapped little, hurting girl inside of me. It was sad and freeing to see her go. She returns to me every once in a while but with a free spirit not a trembling, scared and scar-ed one she use to have.

  11. Sylvia says:

    Sweet Mona – letting our little birds fly is so emotional – I can feel a multitude of feelings just thinking about Ashley moving out on her own – Sadness, for the end of an era, relief that the burden of her care is now being shared by others who also love her, joy for the freedom she must feel – and so much more. My heart feels too. I, too, have been exploring for new venues and reaching for new rungs on the spiritual and emotional ladders of life – The Empty Nest is a much more involved process than I ever imagined it would be. Love and miss you!

    • mona says:

      Sylivia, How wonderful to hear from you! You obviously understand and empathize. The Empty Nest is exactly that: an involved process! Perfectly put my dear friend. Let’s hold hands through the journey.

  12. Ashlee says:

    You are beautiful. I have not experienced this, but recently my father-in-law moved his mother into a nursing home. Moving her from ID to KS where he lives. I see that it has been hard for him to have to put her there. Wanting the best and the most he can for her, loving her so much, it must be hard. She is experiencing Alzheimer’s and doesn’t understand a lot of what is happening. I think she will really enjoy being closer and getting to see him more often though, and she is making new friends. I know everything will work out! For Ashley too! hugs!

  13. mona says:

    Ashlee, One of the key pieces of advice I received at the time of our decision: “Family is a role. Care provider is a job.” Bless your in-laws…!

  14. Sherry Petersen says:

    Hey Mona,
    I just want to clarify that to write this peice and to visualize all that Ashley sees, you do soar! You have soared to new heights with her and because of her. Not to mention, by touching so many with your musings, your words set us aflight in thoughts and we soar because of you. Ashley and her journeys in life are a gift to all of us. I love your thoughts and writing.
    Love,
    Sherry

  15. mona says:

    Sherry, I love the imagery of “soaring”. I needed that today. It’s been one of those afternoons where I miss Ashley so bad it hurts….

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