Open Letter Challenge

My friend, Josh, wrote a post on his blog that literally changed my life. His post: “An Open Letter to You from the Rest of World” is what inspired me to blog through the Bible in a year (and not quit in January)!

So now, he’s sponsoring a contest to encourage people to respond to his inspirational “Letter from the Rest of the World.” So I figured I’d give it a go… especially since I struggle daily with the tension between working to achieve my dreams and my home-bound responsibilities to care for Anne (my disabled daughter).

As I live in this constant tension, I’ve come to the realization that the best way to make an impact for good is not necessarily to write the next NY Times bestseller, but to surrender to the servant’s call of caring for Anne.

So here’s my response to “the rest of the world.” Let me know what you think!

Hi world!

It’s me…that skinny, freckle-faced girl with red hair and glasses. Yep… just me :)

Supposedly, I have something to offer you, but I feel much too small to offer your big-ole-self anything of significance…

You see, I spend my days taking care of my daughter who has a severe brain injury. What could I possibly offer you?

Every morning, as I walk into her room, she looks at me and asks, “Where are we going today, Mama?” And I say, “We are going to school,” but I think, “She wants me to show her the world.”

Then I carry her to the bathroom, and she sits and I sit, and we wait for her broken body to do what it has to do. And we wait, and she asks, “What are we doing today, Mama?” And I say, “Today’s a therapy day,” but I think, “We are going to persevere and never give up.”

And then I dress her and brush her teeth and put on her braces that straighten her crooked feet – so that she can stand. And as she stands, she stretches and lifts her one good hand to the sky – as if she might really touch it. And she looks up at me, and she smiles.

You might consider her lowly, broken and burdensome. But everyday I watch her bring light, beauty and grace to others.

Somehow she is able to fly in her brokenness. She not only flies, she soars, and she brings me along with her. She helps me laugh. She helps me love.

So this is what I offer to you, world…

Joy in the midst of hardship…

Rest in the midst of chaos,

And a Brokenness that breeds Strength.

I also offer you my disabled daughter, because she is priceless. I get to take care of her. And I am so grateful.

So if you happen to see us out and about, be sure to say, “Hi,” because my little girl gives the best hugs!

With Sincerity and Gratitude,

Me

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Silly musings about flying

Sometimes I just want to fly – but I’m grounded. I’m grounded by responsibility. I’m grounded by disability. I’m grounded by lack of vision, purpose. I’m grounded by a small heart closed up in my small world of caring for my small children.

But Anne’s not small. Her heart is large. She loves. She laughs. And she longs. She’s grounded too. Yet she flies. How does she do that?

In my years of being a Christian, all I’ve ever wanted is for my life to count for something larger than myself. To multiply my small efforts and make a difference in this world. I’ve longed for purpose. I want to matter.

I look back at my life – and I’ve tried to fly. I’ve pursued things that seemed to matter. But God always pushes me back down to earth – back to my home – back to my family – back to sitting with Anne. The Anne who can’t walk – who is absolutely dependent for every significant movement. This Anne. This life. Does it matter? I think God wants to show me that it does. I think He’s trying to teach me. I think I’m a slow learner.

Somehow, I need to learn to fly while grounded. For now, I’ll ask for help to obey in the moment. And maybe one day, I’ll look back and see that each step of obedience was a slow ascent to flight. And I’ll laugh. And so will Anne. And we will fly together.

Staying in the story

A book I’ve been reading, A Praying Life, uses the concept of story to paint how God chooses to answer or not answer our prayers.

Many times we get discouraged by unanswered prayer – but if we take a wide angle view, we begin to understand that God is weaving His story into our lives… if we let Him. Each day we have the choice to join the BIG story of God saving the world and us along with it – or to put blinders on and just survive the day. If you’re anything like me (and let’s hope you’re not) I jump in and out of the story throughout the day.

I typically start the day in a stupor – feebly asking for help to get through the day – and then carpool begins, and then my real challenge begins… Kate. I’m homeschooling Kate this year because she’s been neglected since Anne’s accident – and it shows. Every day is different – except for the tears. I think one of us has cried every day since school started… except for last Thursday – and that’s just because she was gone on a field trip all day.

Kate’s stubborn and angry heart is like hitting a wall – which leads me to pray. There is no way I can change her heart – that can only be done by God. And then other times, the same wall that causes me to pray – makes me frustrated and angry, and I feel like screaming (which I have done a few times). So, I’m jumping in and out of the story – I jump in – and admit my helplessness and beg God to give me wisdom.. and patience. I need lots of patience… and then I jump out and fail miserably – which leads me to jump back in and ask God for forgiveness and help.

The good news is that God is gracious – and during this time of wrestling with both Kate’s and my own heart, He is patient and waiting for me to turn to Him. I find when I start the day admitting my desperate need to shepherd Kate and begging Him to give her a soft, teachable heart – well sometimes, Kate is her old, sweet self again, delightful, joyful and fun. And other times, she is hard, but we are able to work through the stubbornness and find submission. God is there, waiting to help me.

A little consistency would be nice. I need help staying in the story.

What I’ve learned during Therasuit therapy…

Five things…

1. Anne CAN put forth effort. I’ve seen her grit her teeth and wrinkle her forehead as she strains to move her left arm. Seeing that effort has to be one of the most encouraging aspects of these last three weeks.

2. Anne has a fierce temper. Anne is soooo stubborn and gets angry when she feels unstable – which is most of the time. Today, while she was doing squats, she got especially mad and started to yell something ugly (which she knows she is not allowed to say). The therapist asked her to do 10 squats. Each time she would say the “forbidden” phrase, we would have to start back at 1. She got to 5 – and then she yelled it: “I’ll bite your butt!” So we started over. She got to 2 – and yelled again: “I’ll bite your bu-!” She thought if she left off the ending “t,” it wouldn’t count. But we started over. We got to 3 and Anne started to yell, and then thought better and said, “I’m MAD!” Victory. Anne exhibited reason and self control. Amen and Amen.

3. Anne has many obstacles to overcome. The greatest of which is fear. Anne has the physical ability to walk with the least amount of assistance. But she can’t overcome her feelings of  fear each time she feels the slightest bit off-balance. If Anne walks independently one day, it will come after years of “persevering -never-giving-up-hard-work.”

Which leads me to the fourth thing I’ve learned…

4. I can’t believe I’m writing this, but… I wouldn’t trade Anne’s broken body for her former healthy self – simply because of the character she will develop in overcoming her disabilities. Special needs children have amazingly strong spirits because of the amazingly large obstacles they have to overcome. Anne has put forth an inspiring effort over the last three weeks!

I confess that I’ve spent way too much time focusing on my “seen” circumstances instead of the “unseen” promises in God’s word. I’ve been overwhelmed thinking of how much work it will be for Anne and our family to continue her recovery. But just as I take pleasure in seeing Anne’s effort and perseverance so does God take pleasure in me – even in my weakest efforts. The key is leaning on Him for strength for the moment – and not worrying about where the strength for tomorrow will come from.

So the fifth thing I’ve learned…

5. Living in my own strength leads to exhaustion and burn-out. God has given me circumstances that force me to lean on Him. Even though I hate it, and get so angry… and stubborn…  and I feel like yelling, “I’ll bite your butt!” – I’m thankful that God would care enough for me to give me such an honorable task as to care for a special needs child. And for this, I am grateful :-)

An unfair exchange

We’re all called to something. Something odious. At least it’s odious for me. Sacrifice. Let me make one thing clear at the beginning. At my core, I despise sacrifice. I try to avoid it at all costs. Who really wants to sacrifice their wants, desires and pleasures? Even for a good cause… Seriously, even if we do “sacrifice” our time for a good cause, at the heart of it… Isn’t it just something we do to make us feel better about ourselves? True Sacrifice – gut wrenching, painful sacrifice is impossible – at least it is for me.

Yet, Jesus demands it. If you study the gospel of Mark, you might notice an event in the 8th chapter that sort of splits Mark’s gospel into two sections. The first section is Jesus showing his disciples and followers that He, indeed, is the long-awaited for Messiah. He heals and teaches and heals, and performs miracles and heals and teaches some more. The crowds are amazed.

At the end of Mark 8, Jesus turns to his disciples and asks them who the crowds say that He is. And after they answer, Jesus says, “Yes, but who do YOU say that I am?” Peter says, “You are the Christ.” And this is a turning point in Mark’s gospel.

It’s a subtle split, but Jesus turns his focus more on training the twelve in that dreaded topic: sacrifice. Check it out…

Mark 8:34 And calling the crowd to him with his disciples, he said to them, “If anyone would come after me, let him deny himself and take up his cross and follow me.”

Mark 8:35-36 For whoever would save his life will lose it, but whoever loses his life for my sake and the gospel’s will save it. For what does it profit a man to gain the whole world and forfeit his soul?

Mark 9:35 If anyone would be first, he must be last of all and servant of all.

Mark 10:43-44 But whoever would be great among you must be your servant, and whoever would be first among you must be slave of all.

Mark even illustrates this principle of sacrifice in story form… Remember the rich, young ruler? He wants to follow Jesus, but Jesus asks him to sacrifice the one thing he loves most – his possessions. The man can’t and leaves broken-hearted. His disciples are incredulous. “Who can be saved?” they ask. Jesus gives the good news. “With man this is impossible, but not with God. All things are possible with God” (Mark 10:27).

I cannot muster the ability to sacrifice from within myself.

I have dreams you know… And they aren’t selfish desires – they are good desires, but for now, I can’t pursue them because of the time it requires to care for Anne. I have it easy actually. God has given me an easy choice.

  1. Pursue your own desires and let someone else care for Anne. OR
  2. Sacrifice and care for Anne.

Like I’m going to choose not to care for my own daughter.

But here’s where the mystery is revealed. Here is the paradox that I could have never uncovered on my own. You know what you find when you sacrifice your own desires and wants and dreams? And I don’t mean the “sacrifices” that make us feel better about ourselves. No, I mean the gut wrenching, I HATE THIS kind of sacrifice. Because that’s how I feel most of the time. I HATE THIS.

You know what I’ve found. Do you know what’s at the bottom of the deep well of sacrifice? What’s waiting when you really let Jesus be the King and surrender to that horrible thing he’s asked you to do – the thing you could never do by yourself? Do you know what’s waiting for you? Satisfaction.

As gut wrenching as the sacrifice is, the satisfaction on the other side is… well, it’s other-worldly. Jesus doesn’t ask us to sacrifice because He wants to make our lives miserable. He does it because He knows that it is the only way to find true, soul-filling satisfaction in this world. He asks us to sacrifice because He loves us.

And Jesus, looking at [the rich young ruler], loved him, and said to him, “You lack one thing: go, sell all that you have and give to the poor, and you will have treasure in heaven; and come, follow me.”

And the rich, young ruler couldn’t. And neither can I. Yet, somehow in the letting go and asking for help, Jesus does the impossible and sacrifices through me – and I get to experience that joy that surpasses all understanding. It’s not fair actually. I definitely don’t deserve it. But I’ll take it :-)

The Falcons and Tim Tebow – What do they have in common?

As a life-long Falcons’ fan… I’ve been dealt a hard lot. The Falcons layed a big goose-egg yesterday against the Giants. It was painful to watch. But then Tim Tebow led the the Bronco’s to a long-shot (nothing short of miraculous) win over the Steelers in overtime. It was AWESOME!!! (sorry Steelers’ fans…)

Last night, I sat on the sofa – with my arms crossed – and despite the amazing Tebow-show, I was in a bad mood. The Falcons’ loss just helped all of my angst come to the surface. I complained to Eric… “I’m tired. I look ahead and see the same monotonous routines. There’s nothing to look forward to. Theoretically, I know God can give me joy – but I don’t want to pray, I don’t want to read my bible… I don’t want anything to do with ‘seeking God.’  I’m tired of Him too.”

Poor Eric – he just sat and listened as I scowled and acted like a spoiled-two-year-old brat. And he, always gracious and patient with me,  just empathized and didn’t judge.

And later, as I pried open my bible, I read about how God loves us – even though we are still sinners. And God made the familiar words fresh… I’m a sinner – and you know what… I’m okay with that. I can own that label. I’m rebellious and down-right bad… unfaithful and whiny – and it’s an afront to the living God – and he actually died because of it.

But I’m not defiled by that label. God has given me a new name… My value comes – not from my performance – but because He made me and died for me. I’m part of His family, and He’s consumed with gathering His family close. I’m okay with that too.

So back to the Falcons and Tim Tebow :-) As Eric and I were going to bed, I said (tongue in cheek), “God poured His blessings DOWN on Tebow tonight!” And Eric had the audacity to say… “Well, He also poured His blessing down on the Falcons.”

What, Eric? I wasn’t in the mood to hear truth… But Eric can’t help himself – he was born to speak the truth. And he continued…. “Great blessing can be found in pain and suffering – if you choose to look for it.”

If you choose to look for it. Am I choosing to look for good? Eric rambled on about all the good that has come from our accident. He’s good at speaking truth, and it was good for me to listen :-)

For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God (Ephesians 3:14-19).

Grief, Silence and lots of stomping.

Sorry for the silence… Old-man grief came out of his hiding place to surprise me once again. I don’t know why I’m surprised – it’s Christmas after all.

I think what really did me in was going to Stone Mountain… My mom (being the extremely generous mom that she is) gave us a trip to Stone Mountain for Christmas… so we packed up and headed east for a one night’s stay at the Stone Mountain Inn for a bit of (fake) snow fun.

We spent a weekend at Stone Mountain in May 2009 – one year before the accident. Anne loved it.

On top of the Mountain in 2009

Anne climbing on the rope's course in 2009

Anne in all of her cuteness in 2009

I know I shouldn’t compare. It’s fruitless and worst of all… it’s painful. I just miss that Anne so much sometimes.

I’m still struggling with acceptance… I’m just not at peace with this new life God has called our family into. I don’t like how difficult it is; it’s tough living moment by moment… and right now I just feel like a whiny, cry-baby. I don’t know how to get to acceptance*. I think it has something to do with giving up control, releasing expectations, trusting that God is good, trusting that God will help me with this huge responsibility He’s given me – all the while continuing to fight and push to provide the best care to help Anne reach her maximum potential (*paraphrased from Stephanie Hubach’s book, Same Lake, Different Boat).  No wonder I’m struggling with acceptance – that all sounds impossible! Thankfully – God (alone) can do it for me.

All things considered, our family had a good time at Stone Mountain in 2011. It was just very different from 2009.  God still has a lot of work to do in my heart, but I’m grateful that He is faithful to finish what He has started in me… and in Anne. Our Anne is precious – and I am grateful for all of the parts of her that work well – and even the parts that don’t :-)

Stone Mountain 2011

How can you not love this girl?

Congratulations, you can’t do it!

My friend and I were talking yesterday about how we put so much energy into being comfortable. Don’t ask me to take risks or make sacrifices – that’s not comfortable. We try to avoid pain at all costs… emotional, physical, spiritual – you name it… we want to avoid it. But I think about the richest times in my life – or the times when I’ve learned or grown the most – and it’s always when I’ve felt the weakest. How can we truly know that God is sufficient and will meet all of our needs – if we put all of our energy into creating bubbles in which we feel competent and secure?? Thankfully, God loves us enough to burst open those bubbles…

I remember my first “hard” decision as a young Christian. I was in college, and my relationship with my mother was… uncomfortable and painful – so trying to avoid Continue reading

Conference update

Friday night was rich. It was the first night of our denomination’s national women’s conference – entitled AmazingGrace 360. As I sat and listened to Nancy Guthrie teach, and later – as I stood and listened to Laura Story sing, I realized that I felt a connection with both of those women – even though I’ve never met them…

Nancy Guthrie has lost 2 infants to a rare genetic disorder. I can relate (on a certain level) with losing a child. I lost the Anne I had known for 5+ years the day of the accident. I still remember Anne on that morning – and all of my interaction with her… how thankful I was for her quick obedience and her joyful spirit. She was making up songs about Jesus while “cooking”  in the kitchen. That version of Anne is gone. I can relate to loss.

Laura Story’s husband survived brain cancer but he is left with disability as a result of the damage the tumor and subsequent surgeries caused. She struggles with living with and caring for someone with disability. Her words tonight… “Disability is hard.” Amen to that. I can relate :-)

Both women have suffered. Both women have wrestled with God’s love and goodness. And both women have chosen to trust Him anyway. I can relate to that :-)

 

Aaaaahhhhhhh!

Botox, Baclofen, Physiatrist, Orthotist, Tone, Spasticity, Clonus.
I could go on, but what’s the point? Dealing with all of Anne’s doctors and wading through all of her “conditions” is just overwhelming. Advocating for your child’s well-being is stressful for me – especially when I have to navigate the impersonal systems of Atlanta’s larger and prestigious medical practices. Sigh.

When I think about it all, I feel like this:

And my nature is to procrastinate – to just not call this doctor or that doctor… But that only makes me feel like this:

Double sigh. One of the reasons I don’t like dealing with all of Anne’s doctors and “specialists” is that it’s just another reminder that I’m completely out of control. I can’t stop her seizures by myself – or reduce the spasticity in her ankles by myself. I need help. Lots of it! But what I need most of all is peace…

…do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus (Philippians 4:6-7).

Now excuse me while I go call the doctor…