She’s Back














After feeling progressively worse for the last six months or so, our beautiful daughter is back. The sweetness is back. Two weeks ago she could not climb this play structure. The anxiety had her shrieking by the first rung. Now she can.

Requests to get dressed, or get her shoes on, or brush her teeth, or do virtually any activity of daily living are no longer being met with blood curdling screams. She’s coping with her emotions. She’s aware of other people and their feelings. Who She Really Is, is being allowed to shine through.

The other morning, I wasn’t feeling well. Todd found her in the kitchen adamantly trying to squeeze a tea bag into a cold cup of water. She didn’t know to heat it first but she was trying to take care of me. She’d already made me a card. All this on her own.

We don’t do a sign of peace at church. This church hugs it out. The past two weeks, Riley circulated all over the congregation, (by herself) greeting people, offering hugs. Yesterday was birthday Sunday, where all the birthdays of the month go up to the front and she bopped right up there, took the mic, told everyone how old she is, and enjoyed being serenaded with the birthday song.  Todd and I were just shaking our heads.

Yesterday morning, I asked her to fill out thank you notes from her birthday gifts, and she sat down and did it, with gusto. No talking her into it. No meltdown. No help needed. No “I don’t want to,” or “It’s too hard,” or “I’ll do it later.”

I am not kidding, the last 6-9 months, every little thing, EVERY THING was a huge production. Todd and I were hanging on by a thread. It wears on you over time and you start to lose your compassion. You start to lose your mind. Our house had gone to pot. No energy for deep cleaning, or yard work. It was hell for us, and even harder for Riley. Seth suffered too.   

Three weeks ago I was dejected. I was giving up hope. I know that’s why my sister came. She just knew I needed help.

Todd called from work one day a few weeks ago and told me to look outside. There was a huge rainbow arching across the sky visible from our backyard. Todd was at the hospital, eight stories up, five miles away, right there in the sky with it.

Part of me gasped, I wanted to hope, so much. Part of me was like, eff the rainbow, I am so tired. This is no way to live. I admit to immediately flashing to a certain biblical review (hello M) and the absurdity of a God who would annihilate just about everyone and then offer “hope” in the form of a rainbow. Sorry Charlie, I don’t believe that.

I don’t know if it is the gluten free/dairy free diet. I don’t know if it is the new supplements. I don’t know if it is luck. Or prayer. It all coincides with the new doctor, so it seems we were right to make the leap.   

I don’t know why it has been so hard, but I do feel there is a reason. I’m being called to do something, and I could not do it well without really knowing the darkness. I mean, we’d known darkness, but it had been a while. Riley is being called too. Her story is hers to unfold.

This on-line community buoys me. I appreciate all of you so much. Thank you for coming back time and again. Thank you for caring about this girl, this family.

My baby is ten and she’s back.

Thank you for celebrating with us as we emerge.


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22 Responses to She’s Back

  1. Courtney says:

    Happy birthday (again) Riley. I really hope to meet you one day!

  2. Meg says:

    So very happy for all of you. Riley looks positively radiant.

  3. Ang says:

    You give as much as you get here, without a doubt. Your stories have bouyed me on my own journey and it is a gift that you share them. “Blessed are the cracked for they are the ones who let in the light”
    Thank you.

  4. kyra says:

    look at that sweet face!!

    YAY!!! she’s back!!! i know this feeling SO WELL! rejoice, my sweet. you deserve it!

  5. Mss B's Mom says:

    So Happy For You All!!

    Eliminating gluten reduced Miss B’s seizures by 2/3, immediately. Gluten is powerful stuff to those who can’t tolerate it. She isn’t allergic to it nor does she have celiac disease.

    I am so glad you saw improvement so quickly after implementing it again. Quick affirmation that it’s worth the effort is really nice. 🙂


  6. Niksmom says:

    YAY! She looks radiant, too. 🙂

  7. Amanda says:

    the international fan club is chair dancing with tears of joy streaming down face 😀

  8. Deb says:

    Such beauty in that face, and in your writing.

  9. goodfountain says:

    Riley is a beautiful girl and I’m so happy she’s “back.” I know that feeling all too well!

    Enjoy your summer break!

  10. Kim says:

    So awesome!

  11. Lydia says:

    She looks older, Michelle. Have you noticed lately? Not quite so little girl!

  12. Michelle O'Neil says:

    I know! She comes up to the bridge of my nose. She’s getting so big!

  13. One Mom says:

    There you go, makin’ me cry again. I’m so happy for you and Riley!

  14. GoMama says:

    I’m so happy to read this update and to hear how well she is doing.

    It is a testament to your strong character and mothering skills to stand by her and try everything you can to support her process through all the challenges. It is nothing short of pure DEVOTION. I am so moved by that, especially when you contrast it to the (non)relationship I had with the mother who checked out on us.

    You are moving mountains. I am continually in awe of your work.

  15. Chloes Mom Mary says:

    I am so happy that things are going well now 🙂

    I hope you can have a summer full of rainbows and sunshine and get your energy back.

    Riley is beautiful, just like the beautiful family she belongs to.


  16. Carrie Link says:

    Tears of joy and of love.

  17. That is so wonderful to hear! Sending big hugs to all of you!

  18. Wanda says:

    Yes! Hallelujah.

  19. -e- says:

    I have found that my kids both have weird energy build up right before their birthdays. 10 was a pretty intense transition for them both. Sounds like all the elements coalesced around the natal anniversary, and now the storm has passed. Hooray

  20. Awww … Adorable. Happy Birthday!

  21. amber says:

    Wow wow wow!! How WONDERFUL. How amazing! I can hear in your post the release in you… You are such good, good parents! But ANYone would start to lose it a little after months on the egde like that. As always, you two leave me humble and inspired.

    Your girl looks beautiful. I pray for her on-going healing. Let it be, let it be.

    And, btw, could her legs be longer?! haha

    oxoxoxo love 🙂

  22. Lo says:

    🙂 SO happy WITH you!

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