The Three Questions I Wish to have Answered

There are many things I'd like to know about how Evie processes things.  Often, when I need her to be honest about her feelings, she will start telling a totally fictional story-with characters who don't even exist. Today, my assignment for WEGO Health's National Health Blog Post is to write about the three questions that I would like to ask a patient with the syndrome by which our family is affected.  What I'm actually going to do, to put my own spin on things, is share the three questions I would like to ask Evie, but either I'm afraid to or I don't know if she would answer it truthfully.

First, I would like to ask Evie is she would rather see me cry over the things that break my heart, or if she'd rather I put on a brave face and not show her my fear.  I, obviously, balled when she was diagnosed with Wilms Tumor, when my grandma died, and when my dad died.  I know that seeing me cry heightens her anxiety, but I don't know if she'd rather I NOT cry in an attempt to help keep her calm.

When I had to tell Evie that my dad died, I just didn't know what to do.   Evie is a fixer.  She wants to make people happy.  I explained to her that Grandpa Dick had died and was in Heaven with Great-Grandma Ev; that we wouldn't have a chance to see him any more on earth here.  I recall her just saying, "Yes," and I said, "Can I give you a hug?"  Evie's reply was "No."  I said, "That's okay, but I am very sad that Grandpa Dick is gone, so I'm going to be crying quite a bit, and that's okay.  Auntie Jess and Grandma Jackie will be crying too.  It's just because we miss Grandpa Dick."  Then Evie said, "I know, I'll make a picture and that will make you happy." 

I know that seeing me cry makes Evie want to fix things, like she feels responsible for my moods.  I don't want her to feel that way, but I don't know how to communicate that to her, so I try to be as "happy" as possible around her, strong and unafraid.  I just don't know if that's the "right" thing to do. 

Another question I'd like to ask Evie is what she dreams about.  I don't know if she has good dreams, bad dreams; black and white dreams, or color dreams.  Her intense fear of blood draws makes me think that she would have nightmares about them.  Then, there was a time where she got locked out of school after all the kids had run in from recess.  Being that she's legally blind, and a little naive about going places independently, she wasn't sure quite what to do.  Thankfully, a student spotted her out the window and told the teacher, so they found Evie safe, but scared.  I wonder if she has dreams about scary situations like that now.  I don't ask her these kinds of questions, because I don't like to bring up scary topics if she doesn't bring them up, or if it's not necessary.  Her anxiety is such that when we aren't dealing with something that is frightening, I really would rather not bring it up and get her to start stewing over it again.

Praising with Skillet at
Rock the Lakes in Green Bay

The third question I would ask her is what her relationship with God is like.  A couple of years ago at Lifest, Evie accepted Christ into her heart.  It was dusk and Casting Crowns was coming up as the headlining band.  The speaker who preceded the concert had spoken about accepting Jesus as your Savior and had led a prayer of salvation.  When they asked those who had said the prayer and made a commitment to Christ to come forward, up popped Evie out of her lawn chair!  I ran after her because she was shoeless and she would be walking over gravel and surrounded by crowds!  They gave her a brand new Bible.  I'm so thankful to know that she did this, on her own, and that her relationship with God is hers to create and mold.  But I so want a piece of it.  Everyone does.  When you see Evie dancing and singing and praising; it's a little piece of Heaven right here on earth. 

Evie is unique, as are all kids; but with her speech delay, and her anxiety issues, it becomes very difficult to verbalize all of the things that a parent might be able to ask their "typically developing" kid.  I'm sure as the years pass and Evie gets older, we'll have more chats about these topics.  For now, though, I'll be thankful to share in her imaginary world, where she is 32, drives a pink Camry, and works at a coffee shop/church/school. 

Words to Inspire, Challenge, and Encourage Me

As I participate in WEGO Health's blogging challenge for the month of November, I am especially excited about Favorite Fridays.  Today I am asked to write about my three favorite quotations.  Since I have so many people who have inspired me along my journey, and so many words of encouragement as my family and I have been thrust into the world of rare disease with our daughter's diagnosis of WAGR/11p Deletion Syndrome, it is QUITE difficult to narrow my favorite quotations down to three!  But I will try...


First I'll identify my most INSPIRING quotation.  They are the words spoken by Jesus in the Garden of Gethsemane on the night of his betrayal, shortly before he was arrested and taken away to his death sentence.  "Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine." Luke 22:42

How many times have I cried out the same thing?  It gives me inspiration to know that the King of Kings, the Rock, the Firm Foundation, that even HE had a moment of fear in what was being asked for him to do.  That is why I named my blog what I did!  My Cup Lifted.  God has given each of us a unique life, a one of a kind journey for us here on earth.  When I think about what God has asked Jeff and I to do, what he has asked Evie to do, what he has asked all of our friends and family to do as we learn and live with WAGR/11p Deletion Syndrome...sometimes it becomes overwhelming.  But Christ, in his final hours took his cup, lifted it to God and said, "Not my will, but yours..." and I do the same now.  Whatever your will, God, give me the strength, peace, and faith to endure and finish this race.

My second quote I chose is one that CHALLENGES me.  John F. Kennedy quoted it, but the phrase actually originated from a man named Phillip Brooks.  He said, " Do not pray for easy lives. Pray to be stronger men! Do not pray for tasks equal to your powers. Pray for power equal to your tasks."  Wow...so I'm not supposed to want things to be easier, I'm supposed to want to grow stronger? 

Yes, that is exactly it-And on those days when I wish I could just run away from all my obligations and start anew, I should be praying to be stronger, not for my load to be lighter.  And when I feel overwhelmed by the all the "plates that I spin", I need to realize that "God does not call the equipped, he equips the called." (I would love to cite this, but as Barbara Brooks wrote about this quote:  I once googled that to find the original quote and it is attributed to everyone from Aristotle to Oprah!).  In essence, my challenge is to remember that I'm not on this journey alone, and that God gives us everything we need while we're here on earth. 


My final "favorite" quote is one that provides ENCOURAGEMENT to me.  It comes straight from a missionary known throughout the world.  Billy Graham wrote, "My beloved suffering saint, everything is under control. His will for you is being wrought in the whirlwind and in the storm, and His blessed presence is in every cloud of distress that crosses your pathway. The Master Gardener is purging your life so that you might bring forth more fruit and more glory to Christ in this world and in the world to come."  (Accessed 11/8/13 http://www.billygraham.org/articlepage.asp?articleid=1094).  In our fear, we are not alone; in our doubt, we are not alone; in our loneliness, we are not alone.  Not only are we not alone, but we have a Master Gardener who is pruning off the dead parts of our lives and giving new energy and nourishment to the parts that are able to bear fruit!  I can rejoice in pain and suffering because it means that I will be the bearer of greater gifts in the end.

I love that we have so many wonderful philosophers, leaders, teachers and preachers from whom we can draw inspiration for today, and hope for tomorrow.  In the end, however, it is plain to see that all I have leads me back to the One who has me, my Father in Heaven.  He is patient with me in my doubt, and loving to me in my fear, and strict with me when I fall out from under His grace-and every night He gives me slumber so I can awake to His new mercies in the morning.


 

Realist or Pessimist~My Commentary on Oswald Chamber's Commentary

As I read Evie her "kid" devotional tonight, I thought..."Ah-ha! There it is! What I have known to be true, but have never been able to put into words..."

From My Utmost for His Highest by Oswald Chambers, 7-30 "Jesus did not commit Himself unto them...for He knew what was in man." John 2:24-25

My "perspective" for a couple of decades now has been, "Someone will always let me down, and I will always let someone else down at least once in my relationship with him or her."

Some would say this is pessimistic, but I think it's only realistic and that it helps to cushion me from the blow when that new friend or high-esteemed family member falls from grace by letting me down. Of course they will let me down! They are human, and so am I!

This realization is, literally, a Come-to-Jesus moment because He is the ONLY one who will never let me, nor you, nor anyone else down. "Why our Lord is apparently so severe regarding every human relationship is because He knows that every relationship not based on loyalty to Himself will end in disaster."

So, in other words, Mary Kay Ash had it right! We should prioritize our lives in the following order: Faith, Family, Career. The moment that Family is more important than Faith~boom! Discontent. The moment that Career comes before Family~kapow! Discontent. However, if I look to God and turn my family and my friends and my career over to Him and say, "It's all for you...all for you...this is my offering..." I will find blessings abound...joy, peace, tranquility...

Think about this: "Many of the cruel things in life spring from the fact that we suffer from illusions."

She is my best friend.

I will honor and obey you, till death do us part.

Pinky Swear.

What happens in Vegas stays in Vegas...

Illusions. Smoke and Mirrors. Words, Actions.

Not God. Not Omniscent. Not the Creator of the Universe. Not the Beginning and the End. Not the Foundation, Solid Rock, I AM.

Let's be realists. Let's stop holding one another to unachievable goals of perfection in appearance, thought, word, deed. Let's remember that God does not make mistakes, that He loves each one of us as we are because we are His works of art. Let's remember that without a right relationship with Him, we cannot have a right relationship with anyone.

"There is only one Being Who can satisfy the last aching abyss of the human heart, and that is the Lord Jesus Christ."

Or, as the words of the Plumb song 'God Shaped Hole' go..."There's a God-shaped hole in all of us, and an empty soul that's searching, There's a God-shaped hole in all of us, and it's a hole, that only He can fill..."