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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 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
