Friday, October 09, 2015

Today, one year ago.




One year ago today Emma had a grand mal or a tonic clonic seizure on a bus coming home for the weekend.  The text message was terrifying.  
" I had a seizure, they are taking me to the Beloit hospital."

'thus began our longest journey together.'
(TKAM)

Emma was diagnosed with Epilepsy the next day and the road to finding the right medicines began.
She had four more TC seizures before the right medicines were found.  Two at work and two at home.
All very very scary.

There is no cure but there are very good medications.
I am thankful Emma had 25 carefree years without taking lots of pills and 
going to the Neurologist and hospitals regularly.

I am thankful she did not die falling off a building or a cliff.  
I am thankful she did not drown or crash a car.
I am thankful that every time she has had a big seizure people have been kind and good to her.
I am thankful for her wonderful friends in Chicago.
I am thankful for Dr. Naryanon. 

This diagnosis has been life changing and shocking.
We were all so taken by surprise by it.

But we have done the best we could...
and Emma is feeling well and working hard 
and doing the next thing.

There have been tears.
And fears.
And questions that have been answered...
and left unanswered.

It was her annus horribilis.

Maybe it was my horrible year...cause she probably never heard of this. 
(Although she learned Latin so I'm sure she can figure it out.)

And as bad as it was for me...
it was worse to be Emma.
no doubt.

She cried more than usual.
But she did not stomp and storm.

She greets this anniversary with a few more tears.
She says she is not quite ready to write about it.  She still gets overwhelmed with big feelings when she tries to write about it.


This morning I was sending her words of humor and encouragement.
I sent her the Fitzgerald quote.










I mean it.

I mean it so much.


Encourage one another,
Donna



"One day she finally grasped that unexpected things were always going to happen in life.
And with that she realized the only control she had was how she chose to handle them.
So, she made the decision to survive using courage, humor and grace.  
She was the Queen of her own life and the choice was hers." 
~anon





31 comments:

  1. I am so grateful you are my friend. I can't imagine how blessed to be your child.
    love you
    mean it
    xo

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  2. A. Your quotes are wonderful.
    B. Emma is beautiful, inside and out.
    C. I wish it was not this way for her.

    Most of all, I'm thankful for the Everlasting Arms, and I trust them, trust Him.

    To quote our friend, love and prayers from your Swiss Miss

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  3. Thank you for the update. I wanted to know, but didn't want to pry. She is a darling young woman, and she will tough this out. To you Donna, as only a mother can feel what another mother feels,--I send love and encouragement. This post is an affirmation of your grace and courage. XXOO {{{{ Emma }}}}

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  4. Dear Emma. It is a brave and beautiful life that she is living. Praise God for kind people on buses and in offices and as roommates and neighbors. None of us should have to go it alone when the phooey hits the fan.

    And it is a different kind of hard for a mother, isn't it? A new kind of surrender as we realize it is not our life to live, but it is nonetheless our heartbeat and breath. I am convinced it is times like this when Lamaze breathing is actually effective, and I am only half joking. Deep, cleansing breaths, Donna Elsie. They make all kinds of labor bearable.

    Hugs to you on this anniversary. This post is a really powerful example of what an encouraging person you are, Donna! And what a person of gratitude you are. You and Emma both inspire me.

    Mucho love,
    Di

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    Replies
    1. Beautifully said, Di. Nodding my head, up here.

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    2. 'They make all kinds of labor bearable.' That's my profound for the day.

      Echoing Susan: Beautifully said, Di.

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    3. Anonymous5:48 PM

      Wow, Diane, I agree. Very beautifully said. You have stated perfectly what so many of us feel. Still praying for Emma. So thankful to be able to read about this beautiful mother/daughter relationship. So faith-building and inspiring.

      Debbie Z.

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    4. Such profound words shared first by Donna and now you Diane. Thank you for sharing your gift. We need more of this.

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  5. Anniversaries can by tough. I will hug her extra tight when I see her again. We are thrilled that Emma is thriving, and she is showing us all how to live well no matter what life hands us.
    She is beautiful, strong and so alive. The apple just doesnt fall that far from the tree Donna.

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  6. Peace to you, friends. Grace and peace.

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  7. I have been praying for her ever since it happened. I am so glad God is holding her in the His hands.

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  8. To know Emma is to love her. How inspirational that she persevered and completed school during her annus horribilus. She is grace and faithfulness coupled with a wonderful sense of fun. I think she's a lot like her mom. xoxo

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    Replies
    1. EXACTLY what I was thinking ... a lot like her mom ;-) Linda

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  9. Thank you for sharing the highs and the lows of your life. And amazing Emma. Whenever she is ready to write about it, I'm ready to read. The photos are fantastic. I see a quiet mixture of vulnerability and serenity. God bless Emma. God bless Carol Sue. God bless Melinda. God bless Donna. God bless Katie. Amen.

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  10. Thanks for all the comments and the prayers and the love for me, and my mom. I know you all have supported her a lot over the years on this blog AND in real life. And through her, me. We are forever grateful and teary.

    And you're right, she's the best. As Mindy Kaling put it about her own mother, she's my soul mate.

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    Replies
    1. Oh man. When you say things like that Emma my heart about bursts. Thank you honey.
      Btw. Katie thought the quote meant terrible diarrhea.
      Laughter thru tears.... :o)

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    2. Come on Katie, girl has seen too many commercials ;) terrible diarrhea is no laughing matter, though.............................

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    3. Laughter thru tears is my favorite emotion.

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  11. Anonymous3:22 PM

    Oh my...I read your post through tears. Not for my own, but for you and yours. Donna, you are encouraging, strong, tender, beautiful. I love the relationship you have with your children, but most of all, I love the relationship you have with your Heavenly Father. I feel it through your writings. "Faith is the substance of things hoped for, the evidence of things not seen". I pray healing for Emma and supernatural faith for you, the mom. **Hugs to all of you**

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  12. I keep saying yes, yes, yes, yes, as I read the comments one by one! We've done the easy part as we've prayed through this journey. You've done the hard part by walking through it step by step together. Thank you for sharing your lives with us!

    And I soooooooo agree about Di's Lamaze breathing. I cannot tell you how often I have used it way beyond the childbearing years.

    Blessings,
    Tammy ~@~

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  13. Anonymous9:08 PM

    Dear Donna
    And this is why I love your blog.

    It is a place of beauty and gratitude.

    A place where I can find beauty—even if I have to look through your eyes.

    You wrote recently that beauty is there if we just look for it. You, Donna, are a master at that. This post—with its honest struggle and honest fears and honest gratitude addressed the fear and unbelief in my own heart. And hope grew from your words.

    Thank you Donna.
    For your faith, for your grace,
    For your eyes for beauty,
    For your heart of gratitude.


    With prayers for Emma

    Ashley

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  14. Anonymous12:14 AM

    Beautiful. Just beautiful. Karen F.

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  15. Beautiful words of love. Thank you for writing about your life Donna and showing us how you live with joy and peace even if the face of adversity.

    You are a lovely lady, Emma. May the Lord grant you seizure free days and peace.

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  16. Anonymous9:44 AM

    didn't expect to cry this morning

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  17. Anonymous2:44 PM

    Thanksgiving for an anniversary that has been diagnosed and is being treated....our prayers of thanksgiving for Emma are many and heartfelt. We pray for her health and know that God is watching over her, sending his angels disguised as ordinary people to care for her. It is a very big thing to deal with and Emma, you are handling it with the grace and poise we know you have inside. love and prayers for you, for your mom and family and for all at QL, jep

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  18. My sister-in-law has lived with epilepsy for fifty some years and has lived a long productive life without many seizures because of medication. It's not a death sentence but a call to do battle. Emma will win.

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  19. Beautiful quote, beautiful Emma, beautiful Donna. Counting blessings in the midst of annus horribilis - important, tho oh-so-hard. May God continue to watch over Emma, provide safety, give her doctors wisdom overseeing her care, and hook her up with the very best drugs, and even, if it be His will, heal her body.

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  20. Keeping all of you in our prayers....Being in the Chicago area, has Emma head of the Danny Did Foundation? They are based on the North Side and epilepsy awareness is their goal/mission. They also help raise funds to provide families with devices that can help aid in seizure detection. Great people--organization started due to a tragic loss of a little one (Danny) to epilepsy.

    http://www.dannydid.org/epilepsy-sudep/devices-technology/

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    Replies
    1. Thank you Serena. We have not heard of Danny Did Foundation. Thank you for sharing about it.

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  21. I am sitting here in tears reading this, Donna. I've been very absent of late, rarely posting on my own blog but I often visit yours and leave without a word. (I am sorry - I just don't have much to say). I never knew what happened with Emma and never wanted to ask. I had a girlfriend when I was young who was eventually diagnosed with epilepsy but unfortunately, it took a car accident to figure it out. Your quote here, with the photo, is absolutely beautiful. And that is an understatement.

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