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Shopaholic and Babies

Our life raising five kids...

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Unintended Consequences

Zella’s diagnosis has brought a sense of peace and calm amidst the madness of life.  Knowing that there is a name for her complex array of (many times completely unrelated) symptoms is such a relief.  And we directly benefit from her syndrome being named because it has put us in touch with a truly amazing network of other parents, all raising children with an ADNP mutation.  They are quick to share everything with us — their struggles and challenges and also their daily victories with these incredible children.  We are *so* thankful to have them as such an integral part of our lives.

With the diagnosis have come other unexpected blessings.  Jake and I are now much more aware of the plight of special needs children and their families who struggle to raise them with few resources.  I have become far more empathetic as I listen to stories of mothers who have been forced to make heartwrenching decisions after they are told that the baby they are carrying inside of them is incompatible with life.  I admire parents who fight daily with school districts to get their special kids the education they have been promised.  Because of Zella, we have a changed perspective in how we view other human beings.

God has used Zella’s diagnosis to change our hearts and minds.  The second we start to see people as merely black and white issues to be “for” or “against,” we have lost.  The world is a broken place, but yelling and screaming and shouting at the brokenness or condemning the broken does nothing to lead others to Christ.  Instead, 2 Corinthians 1:4 says we are “…to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”

Although I have blogged about it before, I continue to go back to Nichole Nordeman’s The Unmaking…

This is where the walls gave way

This is demolition day

All the debris, and all this dust

What is left of what once was

Sorting through what goes and what should stay 


Every stone I laid for You

As if You had asked me to

A monument to Holy things

Empty talk and circling

Isn’t that what we’re supposed to do

 
What happens now

When all I’ve made is torn down

What happens next

When all of You, is all that’s left 


This is the unmaking

The beauty in the breaking

Had to lose myself

To find out who You are

Before each beginning

There must be an ending

Sitting in the rubble

I can see the stars

This is the unmaking 


The longer and the tighter that we hold

Only makes it harder to let go

But love will not stay locked inside

A steeple or a tower high

Only when we’re broken, are we whole 


What happens now

When all I’ve made is torn down 


This is the unmaking

The beauty in the breaking

Had to lose myself

To find out who You are

Before each beginning

There must be an ending

Sitting in the rubble

I can see the stars

This is the unmaking

This is the unmaking 


I’ll gather the same stones where

Everything came crashing down

I’ll build You an altar there

On the same ground 


‘Cause what stood before

Was never Yours 


This is the unmaking

The beauty in the breaking

Had to lose myself

To find out who You are

Before each beginning

There must be an ending

Sitting in the rubble

I can see the stars
This is the unmaking

This is the unmaking

Oh, this is the unmaking 


Had to lose myself

To find out who You are

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October 21, 2016 1:39 PM Amanda E. Filed Under: ADNP Syndrome, Helsmoortel-van der Aa syndrome

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I'm Amanda...a former music business professional turned HR representative who left it all to become a mom to five crazy kids. Although my primary job duties include cooking, baking, and chauffeuring, I'm a homebody at heart and *love* hanging out and watching hours upon hours of trash television. I'm glad you stopped by and hope you'll stay awhile! Read More…

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Hey, guys.

I'm Amanda...a former music business professional turned HR representative who left it all to become a mom to five crazy kids. Although my primary job duties include cooking, baking, and chauffeuring, I'm a homebody at heart and *love* hanging out and watching hours upon hours of trash television. I'm glad you stopped by and hope you'll stay awhile! Read More…

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