Friday, January 6, 2012

What is calling me?

I took this picture mid morning in the bedroom where I am staying to recover.  This beautiful painting is by Kelly Rae Roberts, a mixed media artist I love.  I first found her work at the Cincinnati Children's hospital gift shop when we were there in October, 2010 for Danica's second brain decompression and her fusion.  Dan bought me a small canvas to encourage me.  The girls have crooked necks just like Danica and I.  The words say it all.  GROW.  BECOME.  JOURNEY.

I tucked it away for safe keeping and a day later my mother-in-law Eleanor arrived to visit and to help.  Not knowing how enamored I was with Kelly's work she bought me an angel from the gift shop and brought it to me on one of the worst days there.  Danica was doing horribly and thrashing for hours and hours and no amount of medication was helping her.  I was doubting all my gut decisions and God's leading to this place.  I was as bone weary as I have ever been in my life.  And then the angel with words arrived.


Fast forward over a year,  and I found myself in a hotel in Lanham, Maryland facing almost the exact same surgery my Danica had.  I was acting brave, but very deep down inside I was the fiercest kind of afraid you can describe.  I wasn't afraid of dying.  I was terrified of continuing to suffer like I had been.  My sister-in-law, Amy, met us there at the Marriott.  She knows me well.  She knows the Monica before all this began.  She calls me the "Warrior Queen" when I need it most.  Inside a bag full of snacks for our room, bottled water, and beautiful magazines I found another angel to hang over my bed.  LEAP FEARLESSLY.

Imagine my surprise and delight when Dan and the girls showed up last Saturday afternoon with the painting from the very first picture.  It was at a resale shop I adore, and when I saw it and asked the owner about it she was surprised I knew who the artist was.  I had never seen Kelly's work so large and on wood.  To my knowledge no one in the area even carries her smaller licensed canvas pieces or angels by Demdaco.  The owner of the shop told me she got it in Tennessee at a show.  I mentioned it offhandedly to Dan. 

Dan's birthday is Febraury 1st.  Being the planner I am I had emailed him last week asking if there was something small he was wishing for.  It seems we never have money around his birthday.  I always dream of doing something amazing for him.  The fact is January brings all new deductibles.  Big ones.  Besides Dan and I don't really "want" anything anymore.  We long to have a home or even the possibility we might someday have one, able to be a single family unit again and for things to seem like they are moving in a positive direction.  Really, the pursuit of owning baubles of this world comes to a dead stop when you are just trying to survive.  He knew around $50 was the budget I had in mind.  When he and the girls brought it in to the lake house to me last week I knew instantly he had used his birthday budget to buy this for me.  I was in love.  With the painting, yes, but mostly with him.  It's the love that carries us on days that seem too hard, too hopeless, too impossible to keep bearing.

I have been moving her around in the house I am staying in and propping her up against a chair or the couch or a stool.  I like seeing her face.  I love the moth in her hair.  I love the words.  WHAT IS CALLING YOU?  I love Dan's answer to Delaney when she said, "I don't get it.  What does that mean?"  He explained to her I was so hopeful to get a new chance to live without pain and explore all  my God given talents and gifts and most of all the call I feel to be a mom and a wife in a way I haven't been able to many times because of my pain and suffering. 

Many of you know I have had a very rough yesterday with lots of pressure, head numbness and floaties returning.  I felt some better this morning.  I tried drinking lots to stay very hydrated, taking the fiorcet and resting.  I left a message for my neurosurgeon and have spoken several times to his office today.  I've been checking my blood pressure hourly.  My resting BP is within the normal range, but when I stand it falls very low.  Things get black for a minute and the pain in my head intensifies to a much greater level.  It's scary and discouraging.  My comforts today were in the sunshine dancing everywhere in this house, a breeze of high 40s air coming in the window I cracked while I bathed in my puddle of light and the picture you see first above.  I walked into the room, and she had her face turned towards the light just like I would.  I grabbed my camera.  She gave me courage to spend two hours on the phone coordinating Danica's brain and lumbar MRI in late February with my appointment with Dr. Tinkle so we only have to make one trip to Cincinnati.  I booked the hotel room for two nights.  I emailed Dan he needed to request three days off.  I cringed.  I know they are unpaid.  I know these visits mean not just a percent owed but the whole owed because it's a new year.  I called financial assistance to request a new application for some help.  I do this all while breathing prayer and through the film of black squiggles that float across my field of vision. 

Tonight I will begin another medication called in to the pharmacy to try to help with pressure.  My parent's will go get it for me once Dan is home from his long day at work after turning around from working late last night.  My dad watched Danica today.  He is still recovering too from lower spinal fusion.  I feel guilty.  I'm afraid more than anything of not healing or having some kind of debilitating pain the rest of my life and eventually everyone walking away.  I've heard of it.  People get tired of stories like ours.  You know, the ones where the suffering maybe doesn't end, the surgeries and treatments continue just to exist and the bills really never get paid off and resentment or even worse, apathy, creeps in from the people who have already done too much for too long and are just too tired. 

I feel afraid tonight.  Not hopeful.  It's important I can say this out loud.  It's my doubt but not my truth.  My truth is He will make a way.  He has always made a way.  And so I turn my eyes away from the girl and look up at the SON.  He is calling me.  He will keep me in perfect peace if my mind is stayed on Him.  (My head feels like it might explode.)  Refocus.  He is calling my name.  It is written on His hands.  (My left eye is twitching and the muscles in my calves are jumping.)  I hear His voice telling me our hope remains.  It is an achor for our souls.  (My first tear of the day slips down my cheek.)   Hold on.  It will not disappoint.


  1. "Remember my affliction...My soul continually remembers it and is bowed down within me. But this I call to mind, and therefore I have hope: the steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. 'The LORD is my portion,' says my soul, 'therefore I will hope in him.'" Lam. 3:20-24

    I am leading the singing tonight at our ladies Bible study. The last song of the evening has these words:

    "I greet thee, who my sure Redeemer art,
    My only trust and Saviour of my heart,
    Who pain didst undergo for my poor sake;
    I pray thee from our hearts all cares to take.

    "Our hope is in no other save in thee;
    Our faith is built upon thy promise free;
    O grant to us such stronger hope and sure
    That we can boldly conquer and endure."

    Lean hard, my friend, lean hard!

  2. "We have an anchor that keeps the soul, steadfast and sure while the billows roll, fastened to the Rock which cannot move, grounded firm and deep in the Savior’s love.”

    I love you.

  3. I always think of the hymn "Have Faith In God"

    "Have faith in God
    when your pathway is lonely
    He hears and knows all the way you have trod
    Have faith in God
    Have faith in God."

    I know you have faith.
    God loves you. You are right, He will make a way when there seems to be no way.

  4. I came to your blog through Kelly Ray's facebook page. I too love her work but don't own any. I keep hoping to see it somewhere but I think I'll have to eventually buy it online.

    Anyway, I suffer from pain issues as well. I am a heart transplant recipient and the medications I take cause chronic pain and migraines. I also had a small stroke during surgery so I suffer with memory issues and have a hard time finding words sometimes.

    You inspire me!!! The way you deal with your own pain and help Danika (your daughter?) as well. I know first hand how hard it is to deal with chronic illness. I have had heart problems and eventually transplant for 20 years. My problems are tiny compared to yours! You are so strong and brave!!!

    Have you ever heard of Brave Girls Club? The brains behind it are Melody Ross and her sister. She is an amazing artist and soulful woman. They have a daily email they send out that I think would help you a lot. ( I know it does me. I don't know how old your Danika is but they have also started one for young women.

    Brave Girls also has a blog and a number of classes. I have taken many of them and was lucky enough to be able to go to Brave Girls Camp and meet Melody and learn her healing and art techniques in person. She is such a beautiful and truly caring person.

    I'm so glad that I found your blog. I'll be back! It so helps to hear about people that suffer from similar issues and learn how strong and brave they are. You are an inspiration to me!!!

    If you want to can't me directly email is changeofheart56 (at) gmail (dot) com.