How's Aggie?

Aggie has not had a single seizures since her brain surgery in July of 2009.
She receives regular MRIs, and so far every one has come back normal.
She will  continue to need frequent MRIs until she is tumor-free for ten years.

Ten years.

That is a long time to stare at her head and wonder.

The shadow has not completely disappeared.  I forget about it completely at times, but never for long.  I still get nervous when her eyes look tired.  I call her out of her daydreams. I hold my breath  when she climbs trees, and I remember how fragile is this season of health and life.

Sometimes, out of the blue, my old injury acts up, and I am taken right back to the days of seizures and sadness.

I shall lie down and sleep in peace, 
for you alone, 
O Lord, make me dwell in safety.
Psalm 4:8
Her tumor was an oglioastrocytoma (a WHO Grade II tumor.) I googled the word once, and I refuse to do it again.

When the doctors speak of her prognosis, they seem uncomfortable, and I know they simply do not have much information to give us- it is extremely rare to find a tumor like this in a child.

I remember reading that for some reason, children who present with seizures first as a result of this kind of tumor seem to have better odds.

No matter.
I am no longer able to take comfort in odds.

Today, Aggie is healthy.  She thrives in school.
She plays on the monkey bars.
I love her dearly, and today, love is easy.

Should she return to weakness, I will return to weakness right along with her.

I'll wrestle, and I'll fight, and I'll hate every second of it.
I'll doubt, and I'll sulk, and I'll cry out to God in anger and fear.

But He will hear me. He will carry us through the next season of weakness. Aggie and I, we will be his children:

We are weak, for now, but loved for eternity in Christ Jesus.

Weak and Loved


More of the Story
Snippets and thoughts that are not in the book!

 Her head: Thank you God for innocent mommy joy!
Seizure that don't look like seizures: This is what her early episodes looked like.
The one where I spill: Why it's hard to share her story.
on receiving grace and casseroles: I am a charity case
My note to your guilty feelings
An Unexpected chance to fly
Her song: She is a sermon to me.
MRI day and MRI results
Sister love and epilepsy How did seizures change life for the other kids?

Compassionate crafting Thinking of others with epilepsy
Aggie's heart for people and buddies
 Returning thanks at Cleveland Clinic
A mama with special needs - because I have a child with special needs, I am a mama with special needs
To Aggie on her eighth birthday 9/25/12



Photos of our Journey


Aggie in bloom
 July 2012


Freedom!
(I can hardly believe I can let her do this!)


Aggie telling Lorraine to put on her "brave face" 2011

Sister love-
leaving for Cleveland



Aggie and Curious George
Testing at Cleveland Clinic, July 2009
(It was so nice that George could get tested too! His EEG was normal.)

 
Aggie and Eldon
Testing at Cleveland Clinic, July 2009



Aggie has had ENOUGH
Testing at Cleveland Clinic, July 2009



Aggie and Dr. Bear
Ready for surgery
July 15, 2009


Goodbye daddy
July 15, 2009

"You can leave now," she said to the doctor who saved her life.
July 15, 2009



Aggie and mom, recovering
Check out that scar!



Sister tea party (Gummy worms and water- yummy!)


Aggie heading home three days after surgery,
full of bruises,
sleeping under a blanket of Grace and Scripture.
  


The Aggie smile returned.



13 comments:

  1. I loved reading Aggie's story.

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    1. Jo, I am so glad to hear that :) God's blessings to you!
      Weak, for now, loved forever in Jesus!
      Emily

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  2. I just finished your families testimony. That's how I see it! I am glad to be able to come here and check on her and see that she is doing good!

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    1. I am so glad you came by! Thank you for sharing our joy!

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  3. I just finished reading your book. What a eautiful family you have. You are a wonderful mother and it gives me chills thinking everything you have went through and came out on top all because of the glory of God. Aggie is gorgeous and I wish her the best that life has to offer in her years ahead. Love that you have this blog that I can see her progress. May God bless you all

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    1. Thank you so much! I am glad you came by! God is merciful and faithful, and we thank Him for every minute of her health. So glad you are rejoicing with us! May He bless and keep you and yours as well, in health or sickness!

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  4. Emily,
    Your witness has opened a new outlook for me. I have an adult child with anorexia nervosa and death is always so close. I have had so many feelings of shame in my exchanges with God. Trying to explain why my child should be healed in the way I chose. Your story will be re-read many times by this Momma. When I am feeling my weakest, I will have hope AND love.

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    1. Dear Anonymous,
      My heart aches for you. It is SO hard to watch your child suffer, and to wait on God when He seems to be sitting silent and uncaring. May God hold you and your daughter close to Him through this place of sadness. It will not always be this way.

      Weak for now, Loved FOREVER in Jesus.

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    2. Emily, I came across your story and blog via reading your comment/response to Mary Jaksch's blog entry today. I loved what she wrote, and was even more moved by the story of Aggie and what you and your family have faced. I couldn't believe the timing! I had literally just finished writing a piece about how we can be railroaded (even by people or teachings with good intentions)into thinking we have to be all grown up when in fact we are all kids who need Jesus, sometimes desperately. I would love you to see it, but mostly I want you to know how it important it is--and how grateful I am--that you have shared your story and are encouraging us all in the way that you do. I will include beautiful, shiny Aggie in my prayers, and you too, of course, and the whole family. Love, El


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    4. So glad you came by LadyGrace! Sounds like we have much in common!

      It is GOOD to be a kid :)

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  5. Emily you are so brave and so is Aggie , the picture of her smile shows you what Jesus can do .I am so glad she is doing better. There were many people praying for you all to recover , and now there are many praising God she is better.Your family is so amazing. I will keep praying for Aggie, but as well thank God she is doing great .I love you all so much ! Love Kathryn

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  6. She is doing so much better than the last time I checked in (maybe three years ago or more). I'm so glad your trusting in the Lord! Go Aggie!

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