This day last year

May 6, 2019- it was my dear friend’s birthday, and I was making a meal to take to another friend’s house after she had her first baby.  Mexican I think.  I was up in my bedroom where I had fled to escape the par-for-the-course chaos of five girls when I saw the genetic counselor was calling.  

I remember she gave me a sort of, “are you sitting down?”-type warning before telling me that the microarray showed Maeve was missing a piece of her 15th chromosome… critical area… class 1 deletion… Prader-Willi or Angelman syndrome… need a second test… significant… lifelong… don’t google it… ‘Do you understand?’… insurance… appointment… husband… click.

Wow.  I was floored, flabbergasted that after a year and a half of unanswered questions, looming fear, inconclusive tests, and blind stumbling, we had an answer.  I rebelled and googled, heart pounding.  Neither syndrome was all that pretty, but Nathan agreed: AS fit the bill. (Those episodes probably were seizures.  No wonder she laughs maniacally at nothing in particular!  She does have weird sleep patterns. No wonder she struggled to eat as a baby!  Her movement is ataxic, she doesn’t babble or have any words. She has that wide smile, fair skin, light eyes… but then…Difficulty walking? Significant intellectual disability?  Adults don’t live independently?  Nonverbal?)

I busied myself with packing up the rest of the meal and loading up my little women to drive it over.  Right about then, my mom sent a link to the song “Is He Worthy?” to our family group text.

Is He Worthy?

Andrew Peterson 

Do you feel the world is broken? (We do)
Do you feel the shadows deepen? (We do)
But do you know that all the dark won’t stop the light from getting through? (We do)
Do you wish that you could see it all made new? (We do)

Is all creation groaning? (It is)
Is a new creation coming? (It is)
Is the glory of the Lord to be the light within our midst? (It is)
Is it good that we remind ourselves of this? (It is)

Is anyone worthy? Is anyone whole?
Is anyone able to break the seal and open the scroll?
The Lion of Judah who conquered the grave
He is David’s root and the Lamb who died to ransom the slave

Is He worthy? Is He worthy?
Of all blessing and honor and glory
Is He worthy of this?
He is

Does the Father truly love us? (He does)
Does the Spirit move among us? (He does)
And does Jesus, our Messiah hold forever those He loves? (He does)
Does our God intend to dwell again with us? (He does)

From every people and tribe
Every nation and tongue
He has made us a kingdom and priests to God
To reign with the Son

Is He worthy? Is He worthy?
Of all blessing and honor and glory
Is He worthy? Is He worthy?
Is He worthy of this?

He is!

Each line felt like it was written to minister to me in a way that’s so precious and so precise, I question putting words to it.  The doubts and pain and darkness that had snuck into my soul during the struggles we endured with Maeve were flipped on their head.  

No, Maeve isn’t whole, but none of us are. Yes, the world is broken and messed up and dark, but nothing will stop the  l i g h t  from breaking through.  The Father loves us, the Spirit moves among us, and Jesus holds forever those He loves. One day we’ll see it all made new- we’ll see Maeve made new.  

It was a direct shot of unexpected healing, heavenly peace, and eternal hope on a day that could have been devastating. It changed the way I looked at my sweet girl and the way I imagine our future.  And when I recall that day, it still feels covered in a protective coating of His presence.  

It wasn’t until three months later that the results of the methylation study and the official diagnosis of Angelman syndrome were given to us.  But today is when I celebrate the day the God of comfort showed Himself to me in a special way.  

I wondered if I should write any of this down— but then, Is it good that we remind ourselves of this?  It is.

6 thoughts on “This day last year

  1. Moved me to tears. It is so good to have written this down and shared it. God’s overflowing goodness is spilling out from this post on to us all. Love you all so much.

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