celebrating Aggie

It's time for her routine MRI. Time to trace around the scars again, hers and mine.
They'll look in her brain for signs of that tumor.  I hope they find none.

I'll look in myself for signs that I could handle any bad news that could come. I already know I will find none.  Not inside, that is- only outside. Only in Him.

A moment ago I said to her, frustrated, "What in the world are you doing?!" She was swinging her body around in the living room, (I can't quite call what she does "dancing," exactly,) and papers were flying off the piano, when she should have been practicing.  "I'm celebrating mama. I just played that hard song through twice!"

Celebrate, dear child.
Celebrate, and remind me and all the world that this fragile slice of life is worth celebrating.

I look at the calendar and do the math. Has it really been almost 7 years since her brain surgery?

We have new friends now, friends who did not know her when she teetered on the cliff that falls down into eternity.  Yet she is really no more a miracle than any other child. Each one here today is here because God sustains; each one a gift of grace, a gift for a moment.

But God knows how this child, especially, shines bright joy into our lives, and her very brightness highlights the shadows.

Father,
Hold tightly to your Aggie-Sue-Cook-Peter-Pan.  Sustain her smile, her generous heart, and her body, according to Your will.  Thank you for the gift that she is to all who know her.  In the name of Jesus, who loves her even more than I do,
Amen.

------
UPDATE: MRI all clear!
Celebrate!!!
----
If you don't know her story, start here:

http://www.weakandloved.com/p/hows-aggie.html

Open arms and heart

This is Aggie in a pumpkin patch,

arms open wide,

 and heart, 

as if she could embrace the world and the sky, 

and every bit of God's blessings that surround her.

She can't hold it all, but she will try.

She will skip and run through the blessings,

squeal and giggle and notice,

notice,

always noticing, 

smiling,

rejoicing.

God, open my arms and heart,

teach me to love and live and rejoice

like this beautiful daughter of yours

called Aggie.

-------

Seizure-free and tumor free since July 2009, and still thanking God for each day.

Have you read her story?

Sleeps

Two images overlap in my mind. In both, Aggie sleeps in the van.

To Aggie,

(an excerpt from My Gilead)

Recently, we were on our way home from Brown County State Park.  It had been a heavenly spring evening, an outing with the whole family (even daddy.) You, Aggie, were worried about being gone from home for the evening. Your homework was done, but you had extra credit work that you so wanted to do. You so desire to win the reading competition that you will sacrifice fun for more “minutes-read.” We forced you to put down the book to play at the park. You complained, but then you forgot to complain, and you allowed yourself to be swept up in the evening.

On the way home, I saw your eyes drooping a bit. I smiled to your daddy, and we wondered aloud if you’d actually sleep instead of gathering more minutes. Driven child that you are, we both assumed you wouldn’t, but this time, your body’s needs won out over your hearts desires, and you slept.

And I was proud of you, for letting the tasks go.

The strength of mind and of body you have now is not unlimited, but it is great. 

It has not always been this way.

I remembered another nap in the van.

I wish I didn’t have to know that a clamp held your head during the brain surgery, but those bruises on your head reminded me. You called them “polka-dots.” and you didn’t seem to mind them.

You slept deeply then, as we filled prescriptions and stole glances at you. 

Is she really ok? Is she still our little Aggie? Do we dare hope? 

Hope threatened me, scared me.

The shadows scare me still, yet how quickly you scatter them with your enormous Aggie-smile.

I shall lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.

Psalm 4:8

Have you read her story?

The ebook is only $2.99!

“I wish I could leave you certain images in my mind, because they are so beautiful that I hate to think they will be extinguished when I am. …It is a strange thing, after all, to be able to return to a moment, when it can hardly be said to have any reality at all, even in its passing.  

A moment is such a slight thing, I mean, that its abiding is a most gracious reprieve.” 

Gilead, p.162

MRI day

Agnes had her first MRI without anesthesia today. 

They told her she was the best patient ever (of course!)

Results are in!
ALL IS WELL!

MRI = No change!
They don't need to see her back until August!Also, she told me, "I got a new buddy, and we got to ride the elevator and the escalator, and we got to swim at the hotel, and everybody said I was a very, very good patient!" 

Gracious and loving Lord, we lift up our voices and hearts in praise to You for this excellent news. Continue bless Aggie with good health. And grant Your peace to all concerned. You indeed are the Lord of life; through Jesus Christ, Your Son, our Lord, who lives and reigns with You and the Holy Spirit, one God now and forever. Amen

(Prayer by Rich Shields, echoed today by all who love Aggie!)

Aggie heading to Cleveland

Aggie and daddy just drove away, starting the long drive back to Cleveland.

It's time for her check-up and regular MRI.

Please pray for her today!

Just another reason I love her: 

Yesterday evening, I was walking around with tears in my eyes, and she happened to be practicing her piano. "Mommy, let me play for you!" she said. So I stopped in the doorway and listened. She played and she sang, "Away in a Manger."  I watched her fingers, and marveled at her brain and her skill, yet again.

She stopped playing and looked up at me with a proud smile. 

Then, she saw my red eyes.
"Oh mommy," she said tenderly, as if she were the mother and I were the child, "You need a hug." 

She threw her arms around me and squeezed tight.

"I know those boys are hard work," she said, "but don't worry. It's almost their bedtime."

I didn't correct her. 

I just smiled and soaked up the sweet love of my daughter.

Aggie, I'll miss you when you are at Cleveland, but I am glad daddy and Jesus are going with you.

Jesus, tend to your beautiful Aggie!

(Have you read Aggie's story? Get it cheap on Amazon for a limited time!)

To Aggie, on her eighth birthday

Like me, you are task-oriented. If there is something that needs to be done, you want to get it done quickly.  You do your homework immediately when you come home from school, no prodding or nagging required.  You do not like loose ends hanging. You do not seem able to rest until that list is checked-off.  Oh my dear, I know just how you feel.

My list is long these days, Aggie. I barrel through it all day, and again after supper.  So often you beg me to set is aside, but many times, I cannot. We have a big family and a busy life, and there is much work to be done.

But I try to set it aside, especially in the evening, for your sake and for mine.

You brought home another Magic Tree House book yesterday, and you just knew I would love it. We curled up in my bed with Jack and Annie and traveled with them to the Amazon Rainforest.  This time, you read to me. And reading, for you, is not like checking page after page off your list. You are not in a hurry to get to the end of the book. You read with excitement when the action moves quickly, but you linger to laugh and question and delight in the story whenever the mood strikes you. Reading is an adventure, and I love to share this nightly adventure with you.

I have to confess, when you read to me, I do not always listen to every word. Sometimes, I close my eyes and just let the sound of your voice wash over me. Your sweet voice navigates words with expertise, and you read with such emotion. I marvel at your brain and your heart, and how God has given you such growth.

God has made you a hard-worker, dear child, and you have so much to give and to do in this wide world. May God bless your busy hummingbird days, and may He also grant you many more days of adventure, both inside and outside of the wonderful world of books.

Aggie, I’m so glad God made me your mommy.

Happy birthday.

Love, Mom

Thank you, Father, for granting your daughter Aggie eight full years of life in this world. Thank you for her joy, her compassion, and her determination. Thank you for your care for her in both darkness and sunshine. Thank you for giving her safety in Your promises and Your constant care for her.  And Thank you, Father, for this moment of health and grace.  In Jesus’ name, Amen.

click here for more

Practicing Trials: Read and Receive

Sometimes, I read books to practice life.

I pretend I’m trying the story out, as if I could use the vicarious experience as a rehearsal, imagine what I’d do, and be better equipped to do that thing if my life ever comes to that. It’s like exercise. Getting in shape for the race that might be ahead.
If this happened to me, what would I do?
Would I do what this person did?
Would I be strong like they are?

I wonder how many people are reading my book in this way? Do some of you read to try out a trial, to “practice” a hard thing?

Of course, if the borrowed trial gets too intense, I can always just close the book and walk away.

Poured out

photo credit

Typewriter, keyboard, whatever.

It's true.

Writing is the way I pour out my insides;

how I grieve,

and pray,

and wrestle, 

and rejoice.

Have you read my book yet?

Weak and Loved: A Mother-Daughter Love Story by Emily Cook

 Now available on Amazon.com $9.99 kindle $4.99epub $4.99

Celebrating 3 years of seizure-freedom July 15!

I Opened my Heart, and Then I Winced: On disconnecting from technology, beings still, fear, and love

There’s something about the sun when it is warm, but not too warm, that stills my body. A blanket on the grass, and a gentle breeze, and suddenly I have forgotten all the work undone.

The warm sun quiets my busyness.

The breeze blows away my constant restless doing of things.

The summer air soothes me, teaches me to just BE.

I lean back in the arms of God’s creation, and I rest.

Not long after I wrote that last post on setting aside technology, I tried it.

I walked away from the computer, and I left my phone behind. I grabbed an old sheet, and I walked with the children down to the pond. I had no agenda. We were not going to get anything done. No weeding, no teaching, no deliberate exercising.

I spread out the blanket, and I sat.

I sat,

with open hands and open eyes and an open lap.

The children buzzed around, playing with sticks, showing me this and that. I listened to every word, I responded with enthusiasm and eye contact. When they wanted to sit by me, I pulled them closer with welcoming hands. Some of them did sit, for a moment or two, soaking up their available mommy and her affection. One boy laid his head on me until he noticed a stick that needed to be thrown into the water. He ran off.

A few minutes later, his sister took his spot.

Aggie sang quietly, and laid her head on my lap. She’s one of the big kids, so she does not get my lap to herself very often. I stroked her hair because I know she loves it when I do that.  

Do you see it? Do you notice the scar on her head right there?

I wear a matching scar on my heart.



I sat there in the warm sun, far away from my jobs and my busyness, and my fingers played in her hair. I could “see” the empty spot in her brain where the tumor used to be. My heart winced, reminded of the great risk that comes with loving this child, every child. 


My heart winced and drew back, afraid of pain and loss. 
But the sun and the breeze and the grace of God soothed even my heart, even this heart with this scar. 


A tight heart braced for loss and for pain is a closed heart.  
Open hearts receive and love. And open hearts get hurt.


Father, How could I ever love another if I did not know Your great love for me?  Conquer the fear in me, and teach me to stay open to love, despite the risk.  
In the name of Jesus, who poured out his blood and His heart for me,
Amen

-----------------------------------

How about you?
Do you feel the temptation to keep your heart closed for fear of pain and loss?
Do you keep yourself busy and distracted with technology or something else to avoid this whole issue?

-------------------------------------

Have you read our story yet?
Weak and Loved: A Mother-Daughter Love Story by Emily Cook
 Now available on Amazon.com $9.99 
kindle $4.99 
epub $4.99 
Aggie had a brain tumor that disrupted her young life; her mother’s sin and selfishness disrupted her best attempts to care for her. Written from the perspective of a mother who suffers with her child, Weak and Loved allows readers to experience the struggles of faith and encouragement of God. Readers will enter the difficult, earthy, and sometimes humorous world of a sick child, and be pleased to find the beauty of God's love in Christ even there.

A mama with special needs

Today I am honored to guest post over at dakotapam.com Pam is also a mother of six who blogs to keep her sanity!  Stop by her site today and have a look around!


Because I have a child with special needs, I am a mama with special needs


"As it turns out, it is ok to need things. Yes, even as a mother; perhaps, especially as a mother. Today, I’ll tell you what I needed then, as a mom of a daughter with special needs.


My daughter is healthy now, and it turns out I still need most of these things."


Read the rest of this post here.


And tell me mamas, can you say it out loud?


"I NEED."


What do you need?

Returning Thanks

It was strange to return to Cleveland Clinic. 

We  passed a room, a hospital bed, a tired mother. I remembered:


We laid there, one small family in an enormous hospital. We had to be careful how we moved in that recovery bed because there were tubes and wires everywhere that helped her care team monitor her heart, lungs, blood pressure, oxygen level; that kept her hydrated and medicated as needed;

that slowly filled a deflated child with life and health.

--- Weak and Loved by Emily Cook

When we took Aggie there for testing that year, her seizures came hourly. There were almost no "normal" pieces of life left for her, or for us as a family. Everything was sickness. It was sucking the life from my little girl. And it had my heart in a vice.. squeezing it, so tightly. My chest ached.

When I took Aggie for her follow-up appointment two weeks ago, I remembered those feelings. And we walked down hallways with other people, sad people, people in the grips of horrible things; people desperate for help, just like we were.

That knowledge made me want to lower my voice.
To pray.
Lord, have mercy.
Bless the hands and the medicines and the minds at work here today.


Quiet, girls, there are people here with heavy hearts.
Can't you feel it?

But they couldn't feel it. They were giddy, on "vacation" with mommy. They worried about nothing but getting to the hotel and going for a swim.

I tried to reign them in, a little. They were too noisy, too wiggly to be in this place of trial. We sat in the waiting room, and I let the memories flood.  They played Foosball. They hid from me, and then begged me to "come see!" the fish in the aquariums.

But... can't you feel it? The sadness here?  

No, they really couldn't.
They were too childish.
Too... healthy.

The nurses didn't seem offended by them.
They smiled sweet smiles.

I began to see their girlish laughter not as an interruption, a profanity in a place like this, but as a shimmer of joy.  Hope, perhaps.
If people only knew why her laughter was so beautiful, in this place of all places.

Her tumor doctor knew, and she greeted us with a cheerful hug. She seemed relieved to see a patient with a good scan, who was only checking in, saying thanks.

Aggie handed her my book.
I had signed it, and asked Aggie to sign it too.
Aggie not only signed it, but filled the entire first page with wild Aggie drawings. Perfect.

I told the doctor it was our thanks, a gift: Aggie's story, a story that ends with this healthy, laughing child.
We had just passed a bald child in the hallway, walking with his mother, connected to an IV pole. I thought of the sadness this doctor must carry as she cares for her patients each day.

I hope her story is an encouragement to you. We are so glad you do what you do.

She hugged me.

Health enjoyed, health restored, did not need to be hidden in this place.
It is health mixed with hope, joy, and thanksgiving.

As we enjoyed yet one more day of Aggie-health, we thanked God for it, and thanked everyone we could find at Cleveland Clinic.  I pray that we were a blessing to some, in that place that has been such a blessing to us.

Weak and Loved: A Mother-Daughter Love Story by Emily Cook

 Now available on Amazon.com $9.99 kindle $4.99epub $4.99

Have you read it already?

Click here for more of the story!

A heart with room for all people, and their buddies too.

The more the merrier, says Aggie, and that applies to people and stuffed animals, too.  This girl just loves her buddies.

Last week I was busy and grumpy in the morning, trying to hurry through the list of needs and get them out the door for school.

Aggie hurries too, but she stays cheerful and creative even in a rush.  That day, she brought one of her buddies to school for show and tell.  She found a fun way for him to ride, peeking out of her backpack so it could see.

"Mommy, look at my buddy mommy! Can you take a picture of it?" Her voice reached me through the other voices clamoring for me, but her request was not as urgent as the diaper leak and the mess and the fighting boys.

Compassionate Craft Idea

Last week, the girls and I made signs for this contest at Epilepsy Blogger. 

 If you have children between the ages of 5 and 11, please consider doing this with your child! It is very easy to enter- please see the site for details.

Whether or not you know someone with epilepsy, use this opportunity to talk with your child! 

What is a seizure?  ("An electrical storm in the brain," is a good, simple explanation or children.)

Should we be afraid of someone who has seizures? 

What should I do if I see somebody having a seizure? (for the kids- keep calm, protect them from hurting themselves, and tell an adult!)

How should we treat kids with seizures, or with other special needs or medical problems? 

How would you want to be treated?

Aggie knows that she had seizures and she got better. When we talk about other kids with seizures, she usually assumes they will get better soon, too. Sadly, that is not always the case. In fact, one girl at our school has had seizures for years, and so far they have had very little success in controlling them.

So we prayed for her, and  we prayed that God would give us opportunities to be kind to her and others that might need special kindness.

As usual, the girls were ready and willing to brighten somebody's day with their artwork!

Father, 
Uphold and help all those who struggle with seizures. Send help, relief, and healing according to Your will. Strengthen those who wait, those who treat, those who give care, and those who research.


Teach all of us to be compassionate and kind to those with epilepsy and all who struggle with trials of body or soul.
In Jesus' name, Amen.

----

Please keep us in prayer as well this week, as we (me and the girls) head back to Cleveland for an appointment with Aggie's tumor doctor! (We already have her MRI results, so we are not expecting any surprising news!) Please pray for safe travels, and plenty of mother-daughter bonding time!

Sister love and Epilespy

 It took me several months with seizures to realize that we had entered into an entirely new lifestyle.  I could no longer take the children to the park, or swimming, without at least one other set of eyes. There were simply some things we had to eliminate completely, just to simplify the things I needed to think about.  I was not going to teach them Spanish.  I could rarely find the energy to do a complicated craft.  I would probably not be hosting many sleepovers.  The children and I would be skipping many social events.  The other children were forced to make sacrifices, and I truly hated that. 

Lorraine was the one I worried about most....

Read the rest here:  

Siblings and Epilepsy at Epilepsy Blogger 

I am honored to guest post here today! While you are there, be sure to check out the rest of the things Mandy is up to- what an amazing woman!

MRI results

Monday, Aggie had her routine MRI.

Yesterday, we heard the results.

No Change.

What wonderful words. 

No change today. Another day like yesterday.

Another day of grace.

From Weak and Loved: A Mother-Daughter Love Story by Emily Cook:

He had no obligation to do so, yet God graciously showered on us day after day of seizure freedom. He gave us an Aggie in bloom once again. He restored her energy, and her joy for life. The door to my heart creaked open ever so slowly, and He gave me the courage to love healthy Aggie again.

            I remember the moment the dam burst. It was about a week after surgery. Aggie and the other children were eating lunch; jabbering, teasing, joking around the table. I wish I could remember the joke that inspired The Laugh that broke down all of my walls, but I cannot. I only carry the memory of an unexpected moment, a sudden, shocking lightning bolt of joy that went from her lips to my heart.

            It was a girly little giggle, a giggle that turned into a beautiful and contagious belly laugh. It took me completely by surprise. I had forgotten she could laugh like that. She used to do it all the time, but I had forgotten. I had been loving sick Aggie for so long that I had forgotten many things about the way she used to be.

  The way she is again.

Weak and Loved: A Mother-Daughter Love Story by Emily Cook
Now available on Amazon.com $9.99 kindle $4.99 epub $4.99

MRI day

Today is another MRI day. Routine follow-up. (most likely)
Just going through the motions. (probably)

Aggie is aware enough to be nervous now. When she was sick, she was not this way. She was too tired, too confused to be nervous...

So last night,

Her song.

She is intent on finding her place in the hymnal, and putting the ribbons where they need to go.  Then, we sing.  The church sings loudly, so I cannot hear her voice.  But I hold her close, and I feel the song vibrating through her. 

Aggie sings. "Great is Thy Faithfulness."

It seems like her voice starts in her heart and reverberates through her entire body.

I imagine her voice, her faith, sounding from her heart and filling mine.

She reminds me, "All I have needed, Thy hand has provided."

Great is Thy Faithfulness, Lord, Unto Me.

------------------------------------

See also: How's Aggie?

Weak and Loved: A Mother-Daughter Love Story by Emily Cook

 Now available on Amazon.com $9.99 kindle $4.99

Barnes and Noble epub  $4.99

an unexpected chance to fly

During the year of seizures, everything was stressful. Staying home was stressful. Going to church was stressful. Going to social engagements was EXTREMELY stressful.

I was always watching for seizures, all the while smiling and forcing myself to allow her to be a kid. I tried to stay constantly ready to catch her, hating the constant threats around her, but all the while encouraging her to make use of those sweet moments when she felt good to run and play and enjoy life.

Oh yeah, and trying to not lose track of any of the other kids the meantime.

Church functions, family get-togethers, parties... I had begun to dread all of these things.  There were too many people, too much uncontrolled activity, too many hazards. It was so exhausting.

I remember one birthday party that was NOT that way, though.

The day was not about Aggie. It was not her birthday. Yet, she was given a perfect gift that day, and in that gift I was also given a chance to breathe and just enjoy her.

They rented a bouncy-house.

A bouncy house!  A net to keep her in, and a soft landing all around!  I could let her go, let her bounce and FLY to her heart's content!  What could a seizure do to her in there?!

I remember her Aggie smile and her hair flipping crazy in the air as she flew.

I remember the other kids playing with her, and her uncle, and nobody acted like she was the poor, sick little girl. She was just a girl, having fun with the others.

Yes, she had seizures that day, like every day that month. I cannot help but notice her sad eyes in this picture. Surely this one was post-seizure and she was tired again.

But I remember that day not for the seizures, but for those beautiful moments of bouncing and flying in safety.

Would that I could make the whole world a bouncy-house.

--------------------------------------------------------------------------

Weak and Loved: A Mother-Daughter Love Story by Emily Cook 

Now available on Amazon.com $9.99 kindle $4.99epub $4.99

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my note to your guilty feelings

I love getting notes from people who have read my book. I can't tell you how much it encourages me to hear that Weak and Loved has inspired or encouraged somebody else. You'll probably think this is pathetic, but I am saving these notes to encourage me next time I wonder if I should bother writing.

But then, there's this kind of note:
"I had no idea what you were really going through... I'm so sorry. I should have helped you more."

It's a very kind note, but it makes me sad too. So please, bear with me while I address a few words to the guilty feelings that some of you may have out there.

It was too foggy to keep score.

That year was lived in a fog for me. Everything was Aggie, and trial, and surviving.

I do remember receiving special kindnesses and help from some people.  We were concentrating on simply surviving, and God sent some willing hands that helped to sustain our lives and our faith. Now, on the other side of the trial, I remember only that we were incredibly well cared-for by our church family and our friends and family across the country.  Cards, emails, meals, a bake sale fundraiser, gifts for Aggie, babysitting for the other kids, prayers, hugs, words of encouragement- all of these things helped to sustain us.

If you were not one of those people, you are not on my bad list.  The air was too foggy for me to even find a pen to use for keeping score.

Please, do not feel like you must apologize to me.


However...
Maybe you feel like you were an imperfect friend, and you were unaware or unwilling to step into our trial. Honestly, I was too caught up in my own pursuits to even realize that. I'm sure I have done the same thing to you, not only that year, but maybe even yesterday.

God's law stings, doesn't it? We do not love Him with our whole hearts. We do not love our neighbors as ourselves.

As I was talking about these things with my husband, he said,

 "I think your book helps illustrate some fundamental things about human nature- we are reluctant to receive help, and we are reluctant to give it.  

It is always true that we should be more loving. 

It is always true that we should allow ourselves to receive more love."

So maybe my story of being weak and loved has highlighted your own weaknesses and lack of love, just as going through the trial did for me.

Jesus is not surprised by our weaknesses. "He did not entrust Himself to any of them, because He knows what is in man." Sin. No shock to Him. And yet, though we are not trustworthy, though our "love" looks nothing like His for us, still He loved us to the point of death on the cross.

It is safe to say that out loud, friend. We are weak. Sinful.  And yet (grace and mercy!) we are loved by God in Jesus Christ.

Allelulia, Lord to whom shall we go? You have the words of eternal life! 



Father,
Soften our hearts with Your great love for us.  Free us from the constant pursuit of our own interests, cleanse us of our sins, and teach us to bear with one another in suffering. 


Help us live with open hands, and to show our needs to one another.  As we receive from other and from you, make our hands also willing to give, to pass on what we have to bless others.


 Forgive us, renew us, and lead us, so that we may delight in Your will and walk in Your ways, to the glory of Your holy name, Amen.

**weak and loved**

Weak and Loved: A Mother-Daughter Love Story 

by Emily Cook 

Now available on Amazon.com $9.99

 kindle $4.99

epub $4.99

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Now available to subscribers only: Good Questions for Valentines day and 60 Good questions

episodes

At first, we called them "episodes."  Early episodes lasted mere seconds, and always left me guessing if I saw what I thought I saw.

She just looked like she was daydreaming. Or distracted.
The strange giggle that we heard made us wonder if she just had an inside joke with herself or something.

The word "seizure" never occurred to me.  I always thought seizures were more dramatic.

This one happened in the middle of our prayer:



I was armed with my camera that day, ready to document her quirks, determined not to let anybody tell me that she was just fine. I knew she was not.

We learned later that this was a complex-partial seizure.
We learned later that these seizures can also be very dramatic.

We knew then that something was not right.
And time moved very, very slowly while we investigated that "something."


Father, uphold all of Your children for whom time moves slowly today.  In the wondering and the waiting and the worry, assure us of Your unchanging love.  Be the Solid Thing for all of us, in this place that is constantly changing, where life is constantly threatened and those whom we love fall away.  Hold us close, safe in Your Son Jesus.  Amen.