Family Uncaged

Julia: The Long Road Ahead?

67 Comments 28 October 2012

I got another one of those texts moms don’t want to receive when they’re on the other side of the country. Hubby texted Julia was having another episode. Not as bad as the one that landed her in the hospital, but scary enough. Enough to send me into a tailspin a few minutes prior to Ann Voskamp’s beautiful keynote at Allume.

The ladies at my table, part of the (in)courage tribe, surrounded me while I wept my stress. They prayed. Looked empathetic. Hurt alongside me.

All through Ann’s talk, I had to keep checking texts. Had my husband taken her to the ER? Was she responding? Had she taken a drink of water? Was she improving? Should I leave the poetic keynote, find an empty room and cry?

According to texts, Julia slowly improved. And I sighed relief in Harrisburg, Pennsylvania. Sang a worship song. Felt a bit numb and exhausted. Smiled for a picture.

I tried to get an earlier flight out, but none existed.

So I retreated with my roommate Sarah, packed my things and opted for sleep.

Flights blessed me with their punctuality, and I arrived in Texas. Hubby picked me up, a reclining Julia in the back seat, covered in her comforter. “I missed you, Mommy,” she said.

“I missed you too.”

When we had a quiet moment at home, she cried. Questions poured. Will I be this way forever? How will I get my homework done? What is wrong with me? Do you know what’s wrong with me?

It’s excruciating when you don’t have answers, just questions.

She’s fragile and confused and angry and sad.

And I am too. I want to take this all away from her, but I can’t. I beg God to take it away, but He is silent. You, and all your fragrant prayers, have been beseeching too, but heaven seems silent. It’s not a journey I would’ve chosen for her, for our family. It smacks of pain and warfare and disillusionment. It reeks of the Fall, the sin-stained earth. It is the essence of ambiguity. Clarity has flown the coop. Answers flit away.

So we’re left with conundrum, confusion, and answerless days. Headaches and blurry eyes and stumbling limbs. Confounded doctors and oodles of advice. But not one answer.

We wait in the tension.

I think you understand.

I think you’ve had this experience, though it may not have shaped quite our way.

And there comes a point where all you can do is throw your hands heavenward and give it all up. Come to the place where you realize just how deeply fragile the human condition is, dare to fight even so, and rest everything in Sovereign hands.

I’m tired.

God is good.

I want to get to the place where I want Him more than I want answers. So pray for me, for us, for Julia, okay? That we would glorify Jesus through this mystery. That we would learn the simple formula of God’s strength trumping our weakness. That we would be kind and patient with each other as we walk the strange road.

Many of you have asked what you can do. Of course you can pray. We are humbled at how many people are praying. But I think it’s hard for Julia to grasp just how many people are praying. If you’d be willing, would you send her a quick note of encouragement? A postcard is fine. Just ask Jesus how He’d want her to be encouraged. I trust Him in you to lead you perfectly.

Send encouragement to:

Julia DeMuth

c/o Mary DeMuth

P.O. Box 1503

Rockwall, TX 75087

Resonate with this post? Want more?

Sign up for Mary’s monthly Live Uncaged ezine {free!} and get the free ebook 12 Steps to Impossible Joy.

Be Sociable, Share!
  • http://www.facebook.com/debra.hetmer Debra Hetmer

    Mary and Julia, I am one of Julia’s Fuel leaders and I knew that she had her first incident at school. One of our other leaders had let me know. Then we saw her at church, still having a hard time with those bad headaches. I had no idea you were still dealing with no answers. Julia is such an amazing young lady and I had no idea Mary DeMuth was her mother, now it all makes sense! I never put two and two together. She is on our prayer list and yes we will send cards as well. It sounds like you are still having to do some traveling. We will pray for you as well, doctors and the family. Thank you for allowing us to be involved and updated through your site. If there is anything else we can do, please let us know. Debra Hetmer

  • http://www.facebook.com/cindee.sniderre Cindee Snider Re

    Sending our cards and letters out today. God bless, Julia and your whole family, Mary!

  • Jennifer Saake

    Mary and Julia, God’s ways are not our ways! But I am so glad you are all entrusted to His care as you seek answers! {{{big-hugs}}} – jenni http://strokeofgrace.blogspot.com/

  • Lynn Mosher

    Oh, Mary, I am so sorry for all that your sweet Julia is suffering. I’ve been praying for all of you. I know you said the doctors have done numerous test, but I must ask: have the doctors checked Julia’s thyroid? I pray a source is found and that it can be corrected so that Julia can live a normal, healthy life. May the Lord bless you all with whatever you need.

    • http://www.marydemuth.com Mary DeMuth

      yep. check.

  • Constance

    Dear Mary, Like the others responding to your blog about you and Julia, my heart goes out to you. I will pray for Julia, and for you as I know first hand how terrifying it is to be in this place. We are battling for our 28 year old sons life for the last two+ years. He had the same symptoms as your daughter, plus others such as behavior and thoughts that were not “normal.” (at first we feared that he was losing his sanity – then we found out that Lyme attacks the neurological system) Ten months ago we were able to see a specialist that diagnosed our son has Chronic Lyme Disease. We are near you, in Wylie Texas and we travel to Pineville, Lousiana to see this Christian doctor. Although I do not presume to know what the root of the problem is for Julia, as I read your blog, I thought it would be good to at least tell you about the Lyme, many people are suffering with it and the doctors in Texas know very little about the severity of it’s affects. It is a root problem that often is misdiagnosed as some of the illness we hear of frequently. May the Lord bless you and keep you, may His face shine upon you and give you His peace.

    • http://www.marydemuth.com Mary DeMuth

      Lots of folks have suggested it, but she hasn’t had a tick bite.

      • Constance

        Mary, Not to be insistent by any means, but 40% of people diagnosed with Lymes do not recall having a tick bite. The ticks that carry it are very tiny and can just fall off unnoticed. My prayers are with you, God is faithful and He will lead you on the path of healing for your daughter. In His Love, Constance Constance Woods

        http://www.WingsofMercyArt.com   940-783-1081

        ~ To Glorify Elohim & Encourage His Bride ~

    • Ann

      Dear Constance, I’m sorry to hear about your son. I will pray for him and your family. A lot of people with Lyme Disease have POTS and Dysautonomia symptoms. That’s why a diagnosis of POTS/Dysautonomia should never be simply accepted. Many underlying diseases can trigger these symptoms. Please tell your son that he can find some wonderful support groups on Facebook.

      Mary, I agree with Constance. Demand a Lyme test, but please don’t settle with a negative diagnosis. There are a multitude of tests to lead to a positive/negative Lyme Disease diagnosis. It’s not just the standard Lyme test. God Bless.

  • http://www.janiscox.com/ Janis Cox

    Mary,
    My heart cries out for you and Julia. May the Lord hear our cries. May He lead you to a peace beyond understanding. May you breathe in the breath of God so deeply that you are both satisfied and filled. Standing on the truth – that He can hear; that He can move mountains; that He will be steadfast in His love to your whole family.
    Blessings,
    Jan

  • Ann

    Dear Mary, I am so sorry to hear about your daughter. I will pray for her. I sent you an email via the “Contact Me” link above. I would like for you to check out a little known disorder called Dysautonomia or POTS. October is Dysautonomia Awareness Month. Since our campaign started, numerous people have received a positive diagnosis. It is an easy testable disorder, but it can be horribly debilitating. There is hope, and sometimes a cure. Please check your email. There are number of support groups and doctors that we can put you in touch with. I feel Mayo in Minnesota is where she needs to be. They have the best pediatric doctors that can help your daughter, specifically this unit of specialists: http://www.mayoclinic.org/neurology-rst/autoneurogroup.html. Here is more information about POTS. I pray for all of you, and I pray that everyone visits this site to spread awareness. http://dysautonomiainternational.org/Brochure.pdf

  • Terra

    I am mailing a card to Julia today with a tender loving prayer.
    Terra at http://terragarden.blogspot.com

    • http://www.marydemuth.com Mary DeMuth

      thank you.

  • http://twitter.com/grace_full_life Amy Hunt

    I just got chills, friend. Truly. The enormity of God’s power through us…it’s so unfathomable. That you would allow us in this way, it’s living worship…it’s trusting He connects us all for purpose and not coveting privacy over His power. RICH blessings of love and peace.

    • http://www.marydemuth.com Mary DeMuth

      Thank you Amy.

  • Katie

    Mailing a card tomorrow from SC. I’ve already written it. :) Lifting your family up.

    • http://www.marydemuth.com Mary DeMuth

      Awesome.

  • http://twitter.com/LauraDBennet Laura Bennet

    We continue to pray for your family. Sitting in uncertainty tests our faith to a limit we can’t fathom as reasonable. May God’s grace and peace meet you there and surround you.

    • http://www.marydemuth.com Mary DeMuth

      Amen.

  • http://www.gabbingwithgrace.com/ Grace at {Gabbing with Grace}

    what a hard thing to navigate, with her wanting answers you don’t have to give! Can’t imagine, as a mama, how gut wrenching that can be. (((hugs)))

    • http://www.marydemuth.com Mary DeMuth

      Thank you Grace.

  • Margaret

    I am so so sorry, Mary. I pray God’s peace and love surrounds you and your family during this time. May Julia feel the warmth of love and prayers

    • http://www.marydemuth.com Mary DeMuth

      Thanks so much Margaret. :)

  • Dawn Sullivan

    Mary, I feel like everything I say to you is wrong. When I sat in your breakout session this weekend, I was totally convinced you were the author of something I had read that had prompted my “laying down” of my daughter, Abby. Then after I got to my room, I checked it and realized in fact I had been right and you were NOT that person. I buried my head in the pillow because I wrote you a note in your prayer journal that probably left you thinking I had no brain! Mercy. I ask for mercy and grace! LOL Actually, I do have a brain, it is just a “mother brain” and slightly worn out! So with that all aside, I have walked the unknown with a child and been choked by the questions and tests that come back “normal” and yet her little body is screaming that something is wrong. It. Is. Horrid. I posted about it here, http://www.ddasullivan.blogspot.com/2012/07/my-anything-last-night-i-was-reading.html, and I hope it can give you some encouragement/comfort. My heart breaks for you and your family. For sweet Julia. I feel since I don’t “know” you, there is a barrier there and I am not “allowed” to reach out to you. But I am your sister in Christ. And I am a “new friend,” even if it is in the blog world and even if it is just from sitting with you in a break out session. And this walk I have walked, and continue to walk, with Abby is the very thing that drove me wildly and desperately into the throne room and onto my face before the Lord. And I found Him in ways I never thought possible on earth! I hope in SOME way, I can be your friend during this time and that all the choking pain I have experienced, as well as the power of God I have been privileged to witness and hold, can be turned to joy and glory for HIM by sharing with you. You are in my prayers. You are exactly who the Lord chose to walk this path with Julia. He will reach her, guide her, love her, and comfort her through you! “Mary and Julia” will be written on a post it on my bathroom mirror and I will pray for you every time you cross my mind (and tweet scroll!). GOD IN EVERYTHING. You BOTH WILL FIND AND DELIGHT IN HIM HERE. RIGHT HERE. Much love, Dawn

    • http://www.marydemuth.com Mary DeMuth

      Don’t worry a moment about it. :)

  • http://www.mercyfoundme.com/ Jacque Watkins

    I’m praying Mary, for you, Julia, and your entire family…

    • http://www.marydemuth.com Mary DeMuth

      Thank you Jacque.

  • http://www.OurStoriesGodsGlory.blogspot.com/ Elise Daly Parker

    Praying, praying, praying…as I filled the dishwasher this morning, Julia came to mind. Sensed some blessed assurance. Lord, please be with Mary and her family as they journey through the unknown. Give them your peace which surpasses understanding and your divine revelation. Please Lord rid Julia’s body of pain and suffering. Be her healer and allow her to feel your presence beyond anything she can ask or imagine. In Jesus’ name, Amen.

    • http://www.marydemuth.com Mary DeMuth

      how humbling, thank you.

  • http://www.facebook.com/leigh.hudson.16 Leigh Hudson

    I’m beckoning the HOLY ONE on your behalf…

    • http://www.marydemuth.com Mary DeMuth

      Amen.

  • http://karenzach.com Karen Spears Zacharias

    I have been sitting in the dark with you and Julia on this, Mary. Praying for answers, and healing, and your mama’s heart.

    • http://www.marydemuth.com Mary DeMuth

      Amen, thank you Karen.

  • Colleen

    Mary,
    Two of my sons recently began having heart issues. I know the worry it causes on a mama’s heart when her ‘babies’ aren’t 100%. While none of their issues seems to be life-threatening, the deep-seated concern becomes part of what we deal with every day. I know you took your concern with you to PA, and the text must have sent you reeling. I’m glad she’s rebounding again, but we need some direction to go forward. It seems we may never get complete answers to our health questions, but I will continue to pray for your daughter, and for you and your family. Blessings and God’s peace.

    • http://www.marydemuth.com Mary DeMuth

      Hang in there, Colleen, with your sons. And thanks for the prayers.

  • Goldengirls59

    Hi Mary. I started reading your blog recently and have read about your daughter’s symptoms. Have they done an echocardiogram of her heart? Several years ago I had unexplained symptoms that were not diagnosed for several weeks, finally an echo showed a benign tumor in my heart that had to be removed. Just a thought. You can contact me further if you need to. I had the surgery and am perfectly fine now. Will keep praying.

    • http://www.marydemuth.com Mary DeMuth

      Heart is good, thankfully.

  • http://juliesunne.com/ Julie Sunne

    So sorry to hear of Julia’s relapse, Mary. Praying.

    • http://www.marydemuth.com Mary DeMuth

      Thanks Julie.

  • http://tuningmyhearttopraise.blogspot.com/ ro elliott

    Oh…this is so hard on a momma’s heart…I remember one night as I cried these same kind of tears for a child with an unknown illness…God gently spoke to my heart…”you have told your children all their lives that God loves them more than you do…but do you really believe that yourself. Oh how I had to wrestle with this question…and how He had to work this from my head to my heart. Continued prayers…and great grace for you and your family.

    • http://www.marydemuth.com Mary DeMuth

      Oh, good words, Ro.

  • Linda Chontos

    I’m so sorry Mary. I’ll be praying.

    • http://www.marydemuth.com Mary DeMuth

      Thanks Linda.

  • http://thechuppies.com/ Kara @ The Chuppies

    Oh Mary…throwing my hands heavenward.
    That’s all there is…
    To offer.
    In this sin-stained world where hearts hurt and ache for other hearts that hurt and ache.
    I’m so sorry…
    I know He hears it all.
    I know He does.
    Throwing my hands heavenward now for your Julia.

    • http://www.marydemuth.com Mary DeMuth

      Thanks for the heavenward hands.

  • PattiR.

    Glad you’re home Mary! More prayers.

    • http://www.marydemuth.com Mary DeMuth

      Thanks Patti.

  • annepeterson

    Praying Mary. Praying for all of you in this answerless time.

    • http://www.marydemuth.com Mary DeMuth

      Thanks Anne.

  • Elizabeth Stewart

    Praying….

    • http://www.marydemuth.com Mary DeMuth

      Thanks Elizabeth.

  • http://twitter.com/abbysnews Abby Van Wormer

    i am so sorry to hear this. i will be praying for her, and you, and your family!

    • http://www.marydemuth.com Mary DeMuth

      I appreciate it, Abby.

  • Pam M.

    Dearest Mary,

    Mom to Mom, my heart aches that you and Julia have been chosen to walk a path such as this. Not much light up ahead. And silence from above. I love your statement: ‘I want to get to the place where I want Him more than I want answers.’ What a selfless thought and desire! I would greatly love to get to that place as well, and I’m sure others here do, too.

    You’re a wonderful mom, Mary. What a beautiful and thoughtful idea, asking your community of readers and friends to reach out to Julia with some encouragement. I remember some years ago, when I was on my cancer journey, my most favorite time of the day was when the mail came. I LOVED getting cards from my relatives, friends and church family and reading the encouraging words from people, the special, meaningful Bible verses they shared. Some came from people I didn’t even KNOW, but that actually made it all the more special. I still have them all in a special Joy box that a dear friend made for me. I hope we can all help to lift your sweet Julia’s spirits and to bring her JOY!

    Much love and prayers for all of you,
    Pam

    • http://www.marydemuth.com Mary DeMuth

      So encouraging, thanks Pam.

  • http://thepuresacrifice.blogspot.com/ Deanna Wiseburn

    Sending love and prayers your way. I am sorry that you and your family must deal with this, but your witness, and praising God in the midst of the storm is amazing. I will continue to pray for your family.

    • http://www.marydemuth.com Mary DeMuth

      Thanks so much Deanna.

  • http://www.facebook.com/aprilmotl April Motl

    Praying for peace and healing, sweet sisters. May God’s grace, strength and comfort fill and surround you – and may He grant wisdom, healing and guidance to you from the drs or any where He chooses <3

    • http://www.marydemuth.com Mary DeMuth

      Thank you April.

  • Julie

    There you go again, making me tear up. Your words just have a way of getting right to the heart of the matter. I am praying for you and your family, Mary, I know you know this, just wanted to tell you again.

    • http://www.marydemuth.com Mary DeMuth

      Thanks Julie.

  • Judi

    have you googled Vit. B2 for migraines…you may want to take her to a homeopathic doctor

    • Lourdes Montes

      Am continuing to pray for Julia and the family.

      • http://www.marydemuth.com Mary DeMuth

        Thank you Lourdes.

    • http://www.marydemuth.com Mary DeMuth

      All nutrition levels fine.

Get a Free eBook!

Subscribe to the Live Uncaged ezine & get 12 Steps to Impossible Joy, a 50-page ebook, free!

* indicates required

Next Speaking Engagement:

August 09 - August 10 | Las Colinas, TX
Mary will keynote at The Declare conference and also teach a breakout about writing. More dates »

Latest:

Mary’s Story

Awesome Sponsors:

Connected to:

© 2013 Mary DeMuth.

Site by Author Media.