Saturday, January 29, 2011

A new low

My fingers are still a little orange. I stood down in the kitchen stuffing cheesepuffs in my mouth crying my eyes out. I don't eat cheesepuffs . . . ever. I should have known there was something wrong when I began craving them everytime I passed the bag in the kitchen. The last time I had them was in college. It was a case of the munchies after drinking too much Zima. (Let's just say that didn't end well at all.) I am never an emotional eater. I tweeze my eyebrows and grind my teeth and pray a lot, but I don't eat when I'm sad or mad or worried. This was a new low.

We had been planning taking Danica out tonight for awhile now. We had two special invitations, one to a fundraiser for her friend Brooke who has Chiari and the other to her friend Brooke's birthday party. When we found out her brace wasn't coming off we still decided we would take her to these two events. They were within a mile of one another and several miles from our house. The timing was just an hour apart. Getting the wheelchair in and out of our house is tough. I cannot lift it at all, and Dan should not be lifting it. So, knowing we would be taking it in and out of the car several times tonight as well as the house made this an even bigger deal, but we moved forward with our plans.

Danica did really well at the first stop. We were one of the first people there, and she was very excited to give her gift to Brooke, see their picture together on the big screen and eat spaghetti. I noticed how hard it is for her to really socialize in her wheelchair. When you are strapped into a chair you are are already completely dependent on others to take you where you need to go and get you what you need or want, but I think the hardest thing is waiting for people to sit down and really engage you. Often you are left out after a quick "hello". I have felt this even in our home when children come to play or visit. The wheelchair and the brace are not something they are comfortable with to start with much less having to sit still and focus on a friend stuck in one. It's very difficult for Danica to see them active and accept her own restrictions, especially because she CAN walk and is not allowed to.

After an hour at the benefit we headed to our church for her other friend's fourth birthday party. A lot of thought went into the fact Danica would be there, and Brooke's mom, Larissa, planned a bead activity at a table where Danica could roll her chair right up to the table and also cupcake decorating. Danica even tried her hand at cornhole. I could tell she was getting very tired and agitated. All the other children were running around, and she was visibly upset. She starting clawing at her neck and making red scratch marks. Since Cincinnati we have been battling pressure sores on both sides of her neck. The brace is hurting her. I think the fit has something to do with it but also her moving her neck more and more and us letting her increase her activity here at home. When Brooke was opening her presents all the kids were clamoring to sit close and see, and I was trying to hold on to Danica and also let her be part of the action. She was fighting me.

I was fine. I was tired and overwhelmed but fine. Then one of the guests asked me how Danica was doing. I gave the usual description of how we are hanging in there. Then he asked how I was. I crumbled inside. We said our goodbyes as they were cutting the cake and on the way home I began crying. When we got inside Danica was in full on melt down mode.

This is hard. It's been almost 20 weeks Danica and I have been homebound. I think both of us are forgetting a little how to function outside these walls. I think we are both a little depressed. I think we are wondering if this is really going to have an end. We both thought tonight was going to be a really fun thing, and instead it reminded us how different we have to be right now. Dan and Delaney are on the fringe. They get to leave here everyday. They see it, but it feels different to them. They try to understand why Danica and I are crying. They know it has been a rough night, but they can't pin point why.

I crawled into the tight space beside Danica pressed against the rail on her bed and sang the songs she loves, "Jesus loves me, My God is so big, Sleep sound in Jesus, He's got the whole world in His hands, Hush little baby . . ." When she fell asleep I moved onto her floor and prayed over her like I always do. "God, please . . ." I went downstairs and grabbed the cheesepuffs.

Everyone is asleep now. Dan has been a prince the past days, always doing more because I feel so badly and have had the flu on top of it. He slept all last night on Danica's floor to make sure I could have an uninterrupted sleep. I know he stuffs his frustration deep down inside, and it's hard for him to see the crazy cheesepuff lady emerge from the tough as nails woman he thinks he is married to most of the time. I have no great truth or wonderful quote or even a verse for now. Just orange fingers and a new low in this journey.

Wednesday, January 26, 2011

All is grace (One Thousand Gifts has arrived!)

I have been reading Ann Voskamp's blog A Holy Experience since 2007. I found her right after Danica's birth, a time when I was finding my way back to God after many years living apart from Him. I have often described reading Ann's words like meeting a friend at the foot of the cross. Many times I would print her posts and stick them in my Bible to meditate on them with the Word. I began keeping links of the ones I needed to read again and again in a folder on my computer. I often prayed someday her words would be printed on pages with a binding I could touch and treasure.

There were a series of posts from the summer of 2008 I needed the most as we approached Danica's surgery last fall.

Scandalous Faith in a Good God.

When Bad Things Happen.

What is the Truth?

I clicked the links I had saved. They were gone. I emailed dear Ann asking her where I could find them, and she shared they had been pulled from her site to be folded in her book One Thousand Gifts which was planned to be released by Zondervan in January. She graciously emailed me the posts and reminded me to hold tight to "an outrageous belief in a God who can only, always, give good."

Chapter Five "What in the world, in all this world, is grace?" is a blending of the posts I mentioned above. It is as heart and life changing as Ann's blog has been to me these many years. I have certainly lost my way on the gratitude journey many times. It has often been Ann's words and her consistent reminder that we deserve nothing and are given everything in Christ that has encouraged me to stay the course.

Danica is lying here sleeping beside me as I type. She wears her little cage, and I see the scar from the huge incision in the back of her neck and head peeking out. Just like Ann that day looking down at her son Levi's mangled hand all bandaged up,

" . . . I see what I am. I'm amputated. I have hacked my life into grace moments and curse moments. The chopping that has cut myself off from embracing love of a God who "does not enjoy hurting people or causing them sorrow" (Lamentations 3:33), but labors to birth grief into greater grace. Isn't this the crux of the gospel? The good news that all those living in the land of shadow of death have been birthed into new life, that the transfiguration of a suffering world has already begun. That suffering nourishes grace, and pain and joy are arteries of the same heart--and mourning and dancing are but movements in His unfinished symphony of beauty. Can I believe the gospel, that God is patiently transfiguring all the notes of my life into the song of His Son?

What in the world, in all this world, is grace?
I can say it certain now. All is grace.
I can see through the woods of the world.
God is always good and I am always loved.
Everything is Eucharisteo. . ."

Yes, He is making this story good. I don't want to stop reading yet, do you?

(If you'd like to join the (in)courage Bloom book club discussing Ann's book One Thousand Gifts this month click on the link and join the discussion of God's amazing grace.)

Tuesday, January 25, 2011

What I want more of

“Give up the bitterness,
the anger,
the sadness for what isn’t,
that you wish you had.
And embrace the gift of what you do have.
For therein
is really what you want more of:

-Elisabeth Elliot

Danica has been waking up in the night again. She has been saying her leg is numb and hurts. Last night she called at midnight, and Dan got her and brought her in to sleep with me. My sleep issues are already so difficult and compounded greatly when Danica needs me. This morning when I woke my fibro pain was very bad, especially in my shoulders. I lingered to snuggle here in bed with Danica and prayed for our day.

All day I focused on here and now. I kissed her close to a hundred times. I told her how much I love her over and over. Whenever I was tempted to feel sad about what I so desperately wish for this girl's life I prayed. I wanted this day, day one hundred and thirty-three since surgery, to be different.

I found joy in the long, slow hours of same looking into these beautiful brown eyes. This is really what I want more of.

Saturday, January 22, 2011

How you carry the weight

I have Mary Oliver's Thirst on my nightstand, and this beautiful poem titled "Heavy" spoke to me today.

That time
I thought I could not
go any closer to grief
without dying

I went closer,
and I did not die.
Surely God
had his hand in this,

as well as friends.
Still, I was bent,
and my laughter,
as the poet said,

was nowhere to be found.
Then said my friend Daniel,
(brave even among lions),
"It's not the weight you carry

but how you carry it -
books, bricks, grief -
it's all in the way
you embrace it, balance it, carry it

when you cannot, and would not,
put it down."
So I went practicing.
Have you noticed?

Have you heard
the laughter
that comes, now and again,
out of my startled mouth?

How I linger
to admire, admire, admire
the things of this world
that are kind, and maybe

also troubled -
roses in the wind,
the sea geese on the steep waves,
a love
to which there is no reply?

It's been a weighty week. I had certainly not recovered from our Cincinnati trip and news about Danica when we headed into Thursday. Still, I felt a real peace about whatever would happen. I just wanted to be moving forward no matter what Dan and I's appointments held.

Dan's ortho appointment about his back went well. He will begin physical therapy next week and try to heal without any kind of surgery. The disc issue is there, but he has successfully managed in the past by regular exercise to strengthen his back and avoiding heavy lifting. We are so thankful for the time donated by the employees at his company so he is able to not only take off for Danica's Cincinnati trips but also now for his own health needs and mine.

I did not get my third Lupron injection as scheduled the week before last. Walgreens speciality pharmacy called before they shipped my dose. Because of the new year and Summa's refusal to cover the MRI I had on January 3rd, which has been appealed and denied three times, I was asked to pay almost $700 for the shot before they would send it to the doctor's office. They informed me I would have to pay cash until my entire deductible was met. I knew I had the appointment coming up with Dr. Falcone the next week. I decided I just couldn't spend that much money for one shot knowing how limited our resources are and knowing in a month I would be asked to pay again. I was already feeling the side effects of the Lupron wearing off. As the hormones began coming back I was very nauseous and dizzy and my pelvic pain definitely began increasing, but the wonderful thing is I felt like the old Monica was returning. The anxiety and irritability was fading, and this also helped me make the decision to hold off on getting another shot. My family and I truly hated what this drug did to me.

My dear dad drove me to Cleveland Clinic. It was already beginning to snow here, and I was so thankful for his willingness to go with me. My appointment was very reassuring. As the resident chatted with me about my history and loaded the pictures from my hysterectomy of the endometriosis left she asked me about my pain. I looked her straight in the eyes and one tear ran down my cheek. I told her simply I need to be well so I can care for Danica and my family. Dr. Falcone came in and went over each picture and my MRI. He said very confidently he believes he can remove one hundred percent of the disease with a laparoscope including an appendectomy. He explained the amazing technology they have and also the advances made in this kind of surgery and his experience. After ten years of extreme suffering I am so thankful I landed at the Clinic with this compassionate doctor. He walked me over to scheduling when we were done. My surgery will be his first case on Friday, February 18th.

I would be lying if I said I wasn't overwhelmed a little with the thought of ANOTHER surgery and recovery. There are days I am barely making it through now lifting Danica and carrying her around. I don't know how we will handle the weeks between my surgery and our returning to Cincinnati the second week of March. If you are fatigued of hearing about our story and continued trial and suffering imagine how weary we are of living it. We are so weak and tired, but a beautiful thing is growing. By God's grace we are carrying the weight a little differently every day and when we cannot bear it anymore we are learning to lay it down for awhile.

This weekend we turned off the ringer and huddled in our warm home and counted blessings. We heard our Father's voice reminding us, "Come to me, all you who are weary and burdened, and I will give you rest." (Matthew 11:28) Danica and Delaney played sweetly together. We went through the dozens and dozens of cards we have recieved from all of you and reread your notes of love and support. We collaged and listened to our favorite playlists. Delaney collaged every dog picture she could find and Danica collaged Disney princesses. This afternoon the sun was shining and the house was quiet as we settled in our bedrooms for Sunday naps. It felt hopeful and good to practice normal for awhile and linger to admire simple gifts like rest.

Wednesday, January 19, 2011

Where we are hiding

"There are no 'ifs' in God's Kingdom. His timing is perfect. His will is our hiding place. Lord Jesus, keep me in Your will! Don't let me go mad by poking about outside it." — Corrie ten Boom (The Hiding Place)

I didn't want to write an update today. I know many of you are emailing and facebooking and asking. I guess I'm hiding a little, in my jammies and my fibro and pelvic pain and my tears that won't stop coming. The news from Cincinnati in a nutshell is seven more weeks of the Minerva and minimal walking in our living room with our supervision. We need to keep waiting. Our drive home yesterday was perhaps the most brutal car trip yet. It was pouring rain, so foggy and the traffic was horrible. Dan and I couldn't speak to one another. I cried my eyes out until I felt completely sick. My cell phone would ring, and I would straighten up and act like I was fine. I would even say, "We are fine." This is what we do. We put up our guard because sometimes we can't bear to hear another "Keep your chin up!" encouragement. What we really need is someone who will crawl into our hiding place with us and be very quiet. Just sit. You don't have to fix this for me. Just let me not be okay for a little while.

Of course our little Danica chirped and watched movies and ate gumballs and asked when we were stopping at Starbucks for milk and scones. The news of the day was only slightly upsetting, and she adjusted quickly. With the faith of a child she trusts whatever we tell her is really best for her. She doesn't worry if we will have a home, or food to eat, or if Dan or I will be there to comfort her and care for her every morning. As I would look back at her in the carseat I would smile through my tears. She is wiser than I in many ways. She knows the kingdom of Heaven is made up of little children like her. God chose this girl for something very few could do. Every person who met her yesterday was blown away by her maturity and grace. She is truly the bravest girl I know.

This morning I got out of bed and began making phone calls for the next Cincinnati trip. Coordinating the two doctors is very difficult because they have different clinic and surgery days. We will have her first brain MRI since her decompression on Monday, March 7th. It will be under sedation which is always very difficult. We will see Dr. Crone after to discuss how her Chiari is looking and her overall neurological recovery. (We waited hours yesterday to see him and finally left at 4pm because he was still in surgery.) Tuesday, March 8th, we will have another x-ray and pray it shows more fusion. Dr. Crawford will look at it and then decide about the brace and more independent walking.

The x-ray from yesterday looks good. The surgery is working. It is just healing slowly. We did get to completely remove the brace for a minute to treat a pressure sore on Danica's neck. She felt very insecure and clearly her neck muscles have very little strength now. I loved seeing her sweet white throat and being able to clean under her chin and kiss her neck.

There are no "ifs" where we are hiding. Please pray we will gently rest inside the refuge of His perfect timing, and He will be praised in the next seven weeks of more waiting.

(Ortho doc for Dan and Cleveland Clinic for me tomorrow. We are tired. Thanks for lifting us up. Laney will be home any minute. Oh how we have missed her!)

Monday, January 17, 2011

God is saying, "Yes."

"For all the promises of God find their Yes in him. That is why it is through him that we utter our Amen to God for his glory."
II Corinithians 1:20 ESV

I'm sitting here with all our bags by the door. Danica and I are waiting for Dan to get back from getting the oil changed so we can load up and make the drive to Cincinnati. I have been crying all morning. Delaney hung on to me and cried when we said goodbye. She asked, "How many more times do you have to go?" I feel like I can't breathe. Can it really be almost two years we have been doing this? I've lost track of how many scans, how many hours waiting, how many nights in hotel rooms with heavy hearts we have endured. Did God really write this story for His glory and our good?

There is a song by Christa Wells I listen to over and over, especially on days like this. She was inspired by a quote of John Piper. "When Christ died he purchased for you the Yes to all God’s promises, and that includes the promise to use his sovereign power to govern all the inexplicable, maddening detours and delays of your life for wise and loving purposes. He is doing a thousand things for you and for his glory in your disappointed plans."

A thousand things. God is saying, "Yes."

Wednesday, January 12, 2011

Puppy love

Over the past months so much love has been given to our family. Although you can read about some of it here on Team Danica there is really no way for me to tell every single story. It's easy to think sometimes that what we can do for someone hurting is too little, but I am telling you there is no prayer, no card, no email, no meal, no gift too small to be used by God. I believe we would not have made it through the last months without the drops of love from each of you that have become the tide that has carried us here today.

A special family in our church and school has lifted up our Delaney especially during this time. Delaney is the beautiful smiling girl who will always tell you she is okay. She is a bubble of life. Secretly, she still worries it was her fault Danica got Chiari and she has all the normal feelings an eight year old would have about her baby sister hurting but also about the many sacrifices we have asked her to make.

Delaney loves horses and began riding lessons after her 7th birthday. We simply could not afford to keep them up or continue to drive her every Saturday. She loves the beach more than any girl I have ever met. She still dreams of being a marine biologist. We were not able to go last summer and do not plan to be able to go this year. This is a very real loss for her. More than anything this sweet girl loves dogs. If you have ever seen her with one you know she is literally the "dog whisperer." We have been saying since the spring of 2009, when Danica was first crooked, that as soon as Danica gets better and doesn't fall so much and we don't have so many appointments . . . she could get a dog.

Here is the letter her friend Zoe wrote to her along with the special gift she gave her yesterday:

"Dear Delaney,
I was chosen my Mr. Knori to receive $20.00 for the Loaves and Fishes award for 2010. I know Danica is the one who is hurting, but I think it makes you sad too. I know you love dogs, so I think this money would be good to help buy a dog for you and Danica, because it can make you both happy. I love you Delaney. I hope Danica gets better soon. I am praying for you.
Love, Zoe"

Truly, one of the most beautiful examples of love I have ever seen. We are in a special place surrounded by so many special people who have loved us so well.

As I write this tonight Dan and I's hearts are very heavy after speaking with Dr. Crawford's nurse today. She warned us not to get our hopes up in any way about Tuesday's scan. The likelihood of Danica having many more weeks in the brace is quite high. She said it's like a beautiful new driveway that's been poured. It looks great but you can't drive on it yet. I know it's good for us to get our heads around this somehow before Tuesday, but we are so tired. Our family is so spent in every way. Please pray for us as we head to Cincinnati on Monday for our two appointments Tuesday. Please pray for safety and strength and grace. These trips never get easier. And please pray for our Laney girl who will be left here. Our Hope remains.

Tuesday, January 11, 2011


My dear sister has emailed me this poem by Russell Kelfer several times since my pregnancy with Danica. Each time it comes through my screen I cry, and I am humbled.

A week from tonight we will know if Danica's fusion is really happening. We will know if we can take a step towards a different kind of brace and perhaps therapy and walking again. Danica has been complaining a lot more about her brace hurting her. I think it's just bent out of shape some, and the girl has grown so much since she was fitted for it back in October. She is more and more frustrated with being confined and immobile. She is talking more and more about what she is longing to do when she can finally walk again and go places again and maybe move her neck a little.

Won't you please pray for good news for us next week, and if it's not for the grace to wait even longer if that is His gift. Our Hope remains.

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, "Wait."

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.

"My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign.

"You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply."

Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?"

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.

"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait."

Monday, January 10, 2011

Silence and solitude

"In returning and rest you shall be saved; In quietness and confidence shall be your strength." Isaiah 30:15

Remember when I mentioned Dr. Ben Carson's book Take the Risk in my previous post Stepping Stones to Iowa? One of the many things that stuck with me from that book was Dr. Carson's description of his single mother. He wrote about how every so often she would take he and his brother to a relative's house and drop them off for a few days. What he didn't know then was she was heading straight to a mental hospital to check herself in. She wasn't crazy. She needed to be alone. She needed to rest. I'll admit since reading this I have thought more than once about heading to a psych ward. I think these days the intake would take more life out of me than I have to give and they may involve social services and question my mothering sanity which would be a little counter productive at this point. Oh, and I'm sure insurance would kick me out as soon as I finally got to lay down and close my eyes.

When Danica's symptoms returned last April I began experiencing some of the worst fatigue of body and mind and spirit I ever thought possible. I started seeing a counselor, and I began medication. What I have come to understand is the stress of our long term challenges, lack of sleep and lack of general enjoyment of life have robbed my brain of necessary chemicals to stay charged. Since I was a child I have loved the above verse. I have always been one of those people who needs regular periods of being alone to be okay. In the past 16 weeks since Danica's surgery I have been with her almost ALL the time. I used to have Tuesday and Thursday nights alone after the kids went to bed and Dan was at work. Now he is working days, which I am very thankful for, but I didn't realize how much I craved those hours to myself. The time Miss Emily has been here helping I have been using for running necessary errands and making exasperating phone calls but certainly not resting or reading or praying or sleeping. I feel like the constant input of my children, my husband, friends, family, the internet, TV, facebook, blog . . . it all muffles the cry of my soul to be still and know.

The hairs on the back of my neck stand up when I hear all the catch phrases about putting myself on the list and taking care of me first so I'm there for others, yada, yada . . . This all seems to point to selfishness of some kind, and I'm pretty steeped in the martyr life by this point. While working through Adele Calhoun's Spiritual Disciplines Handbook I have come to realize the desire of my heart to retreat and be near God is not rooted in selfishness at all. It is a necessary spiritual exercise to strengthen my faith and remind me who I am in Christ. I am not just a wife, a mother, a daughter, a sister, a friend . . . I am a child of God.

I left my family Saturday. I went and checked into a hotel. It was so quiet I felt very uncomfortable at first. I didn't have anything to do. No one needed me. I didn't turn the TV on. I didn't listen to music. I was very still, and I breathed in and out. Adele writes in her chapter on Solitude, "In solitude we see how little we embrace our true identity in Christ. And we find the truth of who we are in Christ. We are the beloved, and God is pleased with us. This identity is given; it is not earned. Many other voices are pulling at us, seeking to own and name us, but in solitude we learn what it is to distiguish between the voices of God and the voices of the world."

I was renewed by my silence and solitude. I was reminded my family can survive without me. I realized how much God delights in my drawing near to Him . . . just Him. I slept for 10 hours without my body being half engaged in the possibility of someone calling me for comfort or a drink or a snuggle. On Sunday morning I wrote some hopes for this year. I prayed through them believing nothing is impossible. I reflected on God's faithfulness to our family and to me personally. I came away with one firm resolution, to make personal retreat a commitment in my life no matter what.

Friday, January 7, 2011

Don't Worry

It's been a long hard week. Danica requested one of her favorite songs this morning from my "For The Girls" playlist, Bob Marley's "Three Little Birds." We put it on repeat while she was doing puzzles and after she sang it through a couple times I realized I just had to record a little of her singing for all of you. Her sweet spirit and the joy in her heart challenges and inspires me every single day. "Don't worry about a thing. Every little thing's gonna' be alright." Our hope remains.

Don't Worry from DJ Snyder on Vimeo.

Tuesday, January 4, 2011

How long?

It was Summer, 2008, and I remember sitting in front of the Panera in Fallsgrove, right across from Shady Grove Adventist Hospital. I had just been to see my OB doc and the pain from my blocked kidney was so excrutiating he was sending me home to pack my bags and be admitted again. The Casting Crown's song "Praise You in this storm" came on the radio. I cried heavy sobs as I listened to the lyrics,

"I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away . . ."

Just like that day, finding praise tonight seems almost impossible. Dan's back injury over the weekend, my MRI yesterday, the hours of arguing on the phone with Summa about denied coverage and crying to the bill collectors about how we just can't make any more commitments to pay right now have exhausted all my energy. I am not keeping up with Danica's care. I am frustrated with Delaney's third grade homework. I am like a zombie. I am so tired in body and mind and spirit. I am focused on survival and nothing else. On top of everything I fell down the stairs today. I tried to catch myself with my right arm and hand and really bruised my back and hip. It's too much. It's been so long. What if there's not a way of escape . . . ever.

" . . . And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away . . ."

In November 2009, right before Danica's first decompression surgery, I had the amazing opportunity to hear Casting Crowns in person. I stood with hundreds of other people in the dark at ABT and sang this song with tears streaming down my face. I was headed into another huge storm. I was asking the same questions about where God was in all I was facing, where could I find Him and the strength I needed for those days coming?

" . . .I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth."

I don't know why now but for some reason the culmination of all we have been asked to bear finally feels like it is breaking me. I'm looking to the Maker of Heaven and Earth tonight and asking Him one simple question, "How long?"

Sunday, January 2, 2011

Pain Management (A Dan Post)

"The extreme greatness of Christianity lies in the fact that it does not seek a supernatural remedy for suffering, but a supernatural use for it." Simone Weil

The current pain from the herniated disc in my back is manageable. My back gave out last night, as it has numerous times before. I know that if I can make it to my bed and rest it will begin to heal. Monica took me to the ER today, and I got muscle relaxers, pain pills and steroids. The real pain hides in the sciatic nerve days after the back pain has subsided. Nerve pain in the leg is enough to drop any man on the floor in agony.

The pain of letting Danica go from my arms and into the operating room is manageable. After experiencing her first brain surgery and the numerous IV's in her arms over time and giving her over to strangers for scans and tests, one becomes familiar with this type of emotional pain.

The real pain hides in the recovery process, especially for a young family. We look at Danica and see how great she is doing, and how acclimated she has become to her confining brace. It's easy for us to forget what a big deal her surgery was and how vital it is for her to heal correctly. I often stare at Danica and imagine how things could have gone for us as they have for other families we know. (We know of one brave boy, Brayden, who has had quite a few struggles after two Chiari surgeries this past year, and he remains in our prayers every day.) There are no guarantees Danica's Chiari symptoms will not return. We feel the plagiocephaly that has formed on the top of her skull. We still see some droop in the right side of her face. We know our journey continues.

There is pain in watching Delaney who is so anxious for her and little sis to tussle again and dance to music. She is longing to go places together as a family and dreaming to squish her toes in the sand this year. She has been shuffled around for so many appointments and pushed into the background as we have focused so long on Danica's extreme physical needs. She worries about her mom who feels so visibly bad much of the time. She even heard Monica and I discussing the cost of going to the hospital today and brought her piggy bank in our room to offer her savings to us to help. This hurts.

Watching my wife's daily pain is perhaps the hardest for me. Monica is barely able to lift Danica not to mention carrying her up and down the stairs. (The stairs in our home have continually offered challenges for Monica, Danica and now me. One of our new year's prayers is God's leading to a single story home suitable for our family's needs.) My wife pushes through her pain every day and still focuses on what needs to be done for our family.

Pain is in the waiting and the not knowing what is going to happen. Danica, by all observations, is ready to free herself from the Minerva brace. We have no idea what the doctor will say during our next appointment mid-January, but we have committed ourselves to doing whatever it takes even if it means another six weeks in the brace. We don't know when Monica will be able to schedule another surgery for the endometriosis on her bowels. We don't know how God will provide as she remains unemployed to care for Danica and recover.

We do know there will be a "use" for this pain. We know God will provide because He promises He will, and He always has. We know we will ENDURE and cling to the hope better days are coming. Monica and I cast our wishing stones in late December hoping that 2011 would be a year of healing and rebuilding. We have to laugh a little that I ended up in the emergency room today and Monica heads back to The Cleveland Clinic tomorrow for her MRI. It seems there is no remedy for our suffering coming anytime soon, but we will manage, by God's grace.