Tuesday, February 11, 2014

The Weeping Servant

Photo of Lake Tahoe~ by Tammie Hefty
The Son of Man did not come to be served, but to serve, and to give his life as a ransom for many.  Matthew 20:28 NIV

Since I’m new to Comfort in the Midst of Chaos, I will briefly introduce myself; tell you a little about how I came to be here, now, writing for you.  My family and I currently live in Wisconsin.  We live in my husband’s hometown and have been here my daughter’s entire life.  My daughter, Evie, has a rare genetic condition called WAGR/11p Deletion Syndrome…it’s so rare that there are under 400 documented cases worldwide (www.wagr.org).  There are developmental delays, intellectual delays and a wide range of health issues that come with WAGR.  The parents of children with WAGR often have to become the experts on the syndrome because very few doctors are familiar with it; and many may never have heard of it.

We have grown comfortable in our life.  
The teachers, therapists, students and community that surround us know Evie and love Evie; because she’s Evie!  Our doctors have learned with us, from us, and from one another; they love Evie too, and want to give her the best care and the best quality of live that she can have.  We are blessed…utterly blessed.

So, why then did I break down weeping in the middle of my Friday morning Bible study group last week?  
I broke down because I was talking about the fact that our family will soon be moving to Reno, Nevada. 

I have often joked with my husband about the fact that we can never move away because I don’t want to have to re-educate people on WAGR/11p Deletion Syndrome. I have put in my time with that, and have gotten very comfortable with where we are at in our lives.  I don’t really want to rock our boat which seems to finally be on serene waters.

I confessed to my beloved Bible study friends on Friday morning that I am most scared to have to talk about Evie in front of Evie.  I will have to explain WAGR to her new doctors in front of her, while she is listening.  She was a baby the last time I had to do that.  I will have to hear all the questions that I have pretty much stopped hearing in our town because everyone here knows the answers.  

Why is her eye like that?

How can she run if she’s blind?
Why does she rock back and forth?  Flap her arms?  Dance and sing like no one is watching her?

The students here have been in class with Evie since she was three years old.  They probably have experienced more things with her than even I have!  They rally around her, help her open her fruit cups at lunch, put on musical performances outside during recess with her, and draw her pictures which she proudly brings home and keeps in a binder. 

What will we find in Reno?  I don’t want to have to start the process over again. My greatest desire for Evie is that she will have friends.  We have that here; and now we will have to rebuild that sense of security.

So, I sound like I'm feeling pretty sorry for myself.  Of course, I was trying to brush it off as “love for my daughter.”  That’s justified, right?

Then God admonished me, his weeping servant, by reminding me that “the Son of Man came not to be served, but to serve…”

True, we have worked hard over these past nine years to get Evie the best medical care, the best education, and the best “acceptance” in our community that we can.  And, it’s true that I may finally be in a state of peace and harmony with the fact that my daughter has this rare genetic condition.  And, it’s true that I might feel tired and just want to rest in this tranquility for a little while longer.

But, even Jesus got tired and scared. 
Even Jesus was mocked. 

Even Jesus got down and washed the feet of his disciples. 

Even Jesus was woken from his slumber to be asked to “save the day” when the storm had gotten too rough.

Even Jesus once asked his Father in Heaven, “Father, if you are willing, take this cup from me; yet not my will, but yours be done.”  Luke 22:42 NIV

So, what makes me think that I should be any exception?  I am here to serve.  I need to go where God tells me to go, and do what God has designed and destined me to do.  This servant needs to dry her eyes, put her big-girl pants on and weep no more; there’s a whole lot of packing to do.

Pray:  Father God, help me to remember that it is my desire to serve you and that my works glorify you and honor you.  Give me courage and strength to face our challenges and to trust the victory that we already have found in you.


  1. Thank you so much for being vulnerable and sharing your story, and for ultimately bringing it back to God's word. My husband recently was called into full time ministry (praise Jesus) and we are preparing for a move also. Although we are so excited about the ability to serve the Lord, I have been feeling many of the same sentiments you describe as i have 2 kiddos with SMA and will be needing to set up camp (for a lack of a better term) in our new location. Your post really ministered to my heart and has allowed me to see that God will be with us every step of the way, and ultimately we are doing His will and I need not spend so much energy worrying about it....because He is in control. I will be praying for your transition. God bless.

  2. Oh, Jessica, I'm SO happy to hear that this helped. And, KUDOS on becoming a minister's wife; I'm sure there will be a lot of adjustments as you transition~I'm doing a study on the book of Daniel right now and that is ministering to me as well because of all Daniel's faithfulness to God and how God was faithful back to him. Will be praying for you!!!