Shared Suffering

“What doesn’t tear you apart will make you stronger.” I think I’ve read something like that once…

There’s nothing quite so sublime as to share suffering with another. Eric is the only person this side of heaven who understands the pain of the last 5+years. It is a shared suffering.

There was a time that the pain of Anne’s brain injury was so intense that it could not be shared but only endured. But now, as time and experience have numbed the sharp pain of loss, we have regained the capacity to carry one another’s burdens. This sharing of burdens is a door into deeper “oneness.” For Eric is the only one who knows the depth of loss and indescribable joy.

If shared suffering is our glue, then God is our rock. We stand on his sovereignty. We trust that all that led us to this present – the accident, the suffering, Anne’s recovery, and her new life – are all part of God’s perfect plan, not just for Anne, but for our whole family.

Somehow, we believe the accident saved us from ourselves – that God is using Anne’s brain injury and recovery to change the course of our lives for the better – even Anne’s life! For as hard as it is for her to live with a brain injury, for all the ridicule that she receives from her peers or the frustration she endures at not being able to control her own body, we trust that she is closer to Jesus because of it. And so are we – Eric, me, Canon and Kate – we are closer to Jesus. And we are grateful.

Years from now when Canon and Kate are gone, Eric and I will still have Anne. Sweet Anne. She is our glue. But we stand on our rock. Thank you Jesus.

A peek inside the secret life

I have a special needs child. There. I said it.

Before our accident, I didn’t know any other family with a special needs child. I was blissfully ignorant of this hidden world in which I now find myself.

The first secret is that there are a ton of special needs children! Just visit any reputable pediatric therapy center, and it will be PACKED. There are so many families struggling in this secret world. It makes me realize how miraculous a healthy child is!

The second secret is that even though our government goes to extremes to make our country accessible to the disabled (and I’m grateful), accessibility is still a huge challenge for our family. For example, a simple trip to the pool is difficult for us. In my limited experience, pools are sometimes not wheelchair friendly, so I have to carry Anne into the pool area. Doing regular life is difficult – especially running errands. Lifting Anne and her wheelchair in and out of the van is part of my normal life routine. But I’ve found that I only have the energy for one outing a day with Anne. So grocery shopping, back to school shopping and general “running around” has to be spaced out.

The third secret is that even though there are tons of special needs families, it is still incredibly isolating to have a special needs child. The world goes by at lightning speed and leaves us in the dust. In many ways, this is painful – and if I’m not careful, I can lean a little towards self-pity. Seeing pictures of families enjoying vacations to the beach or amusement parks twinges a little. Watching families bustle about without the physical limitations of a disabled child makes me long for an easier life. It’s times like this that I cling to the fourth secret of having a special needs child…

The fourth secret is the best. I am still surprised at how much joy Anne brings our family and others. The time I get to spend with Anne is beautifully rewarding. She’s a treasure, and everyone who spends time with her comes away better for it.

Recently, someone asked Eric to describe his relationship with his children. He said, “My oldest thrives academically so I share my love of technology with him. My youngest is gifted athletically, so I share my love of running with her. My middle daughter (Anne) struggles with most everything, yet she teaches me the most about life.” Anne is our glue. I can’t imagine life with her any other way.

Anne and Mary Lou

I want to tell the story of my friend Mary Lou and how God has weaved her story together with Anne’s…in the most beautiful way.

To introduce you to her, I have to go back almost 9 years – to when Anne was an infant. Mary Lou was in charge of our church’s women’s retreat, and somehow I ended up helping her with many of the last-minute details. Because I was helping her, we rode down to the retreat site together, with Anne strapped in an infant car seat in the back of Mary Lou’s car.

Mary Lou was broken.

Continue reading →

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,

The fight for our marriage

I took this picture in church this morning (when I should have been listening to the prayer!) It absolutely melts my heart. Eric is the best of the best. I’m so thankful to be married to him… But our marriage has been severely tested since the accident…

I now understand why so many marriages crumble after tragedy – especially if the tragedy concerns your children. The grief is so heavy that it can take all of your energy just to get through the day. There is rarely emotional energy left over to connect with your spouse.

The problem is compounded by the fact that everyone grieves differently. Yes, I know most people go through the five stages of grief, but people go through the stages at different rates. The wife might be stuck in denial while the husband is in the anger phase. One spouse might get to acceptance quickly while the other stays in depression for years.

Meanwhile the marriage suffers because it just takes so much more effort than it used to – and who has that much energy? It’s definitely easier to give up than to fight to sustain the marriage.

But I married someone who refuses to give up. My grief after Anne’s accident was so thick at times that it would have been easy to give up, but Eric was committed to pursue me, and God gave us the grace to fight.

Now that we’ve been through our darkest days and come out on the other side together, I figured it was time to celebrate! So for Eric’s birthday, I gave him 12 pre-planned date nights* – one for each month of the next year. Every date is different. Some are extravagant and others are just simple nights at home – but every reservation has been pre-made and pre-paid, so we have no excuse… we must go!

Eric’s birthday present

Our first date was last night. We went to the Atlanta Fish Market and then to the Aquarium. Eric said afterwards that it was rejuvenating, and that was my hope…. that as we take time to have fun together, this will give us energy to manage our little family – because parenting is harder now. Well… Everything is harder now. But that just makes life richer :)

Here’s to a great year, and the fight for a great marriage!

*And by the way… I stole the “date-night” idea from a friend’s Pinterest Board. Here’s the original link :)

Questioning, Doubting and Honesty before the Throne

I’m halfway through with my year of blogging through the bible. I’m currently in Ezekiel, and I feel WAY over my head, but somehow God manages to give me something to write about every day. I’m really experiencing God’s strength through my weakness!

Something stood out to me yesterday as I was reading Ezekiel 8-11… These are the chapters describing Ezekiel’s first temple vision. At the end of this vision, God’s glory departs from the temple because of the enormous sin of the people.

In the middle of the vision, God sends angels out to execute judgment on all but the “remnant.” The judgment was so gruesome that it caused Ezekiel to cry out…

And while they were striking, and I was left alone, I fell upon my face, and cried, “Ah, Lord God! Will you destroy all the remnant of Israel in the outpouring of your wrath on Jerusalem?” (Ezekiel 9:8)

In the face of such wrath, could Ezekiel be doubting God’s goodness? I don’t know for sure… But I do resonate with the idea of questioning God’s goodness…

Sometimes we are surrounded by such dire circumstances, that we wonder how God could allow such suffering.

I’m familiar with all the theological answers to this age-old question. I get that suffering is a result of sin and that God uses suffering to bring about repentance, faith and sanctification. If you’ve read my blog, you know that I get that. I really do.

But sometimes, like Ezekiel, we are so overwhelmed that we cry out, “Enough is enough!” And whether or not this is an appropriate response or not… it still encourages me that Ezekiel had the guts to be honest. God is big enough to handle our honesty… it’s whether we are brave enough to be honest and vulnerable before God. I believe He meets us there. And I believe He loves us there…

A longing

I’m listening to the house… it’s quiet and I need to go to sleep. But I don’t want to, because something feels undone – unfinished… unsatisfied. I’m trying to write about Anne – but everything’s the same – she still has a brain injury.

When I pray for God to heal her – and I mean the “all-at-once” kind of healing… I know I’ve become desperate. God doesn’t work that way very often – because he cares more about our holiness than our happiness. There will be plenty of time for happiness in heaven – for now, it’s character building time.

But right now, in my unsettled, discontent heart… I just want to be happy. But the happiness is elusive.

When I feel this way – unsettled – like something’s unfinished, I know I’ve been grasping at distractions to fill the achiness. It’s a spiritual achiness – a longing… and silly entertaining distractions don’t cut it. I need the Savior. I need His touch. I need him to replace the discontent with contentment, the anxiety with peace.

I need to go to bed :) And pray, and wait, and hope that tomorrow will be better.

All things new

Eric was reading to Anne from the “The Jesus Storybook Bible” again. Tonight’s story was from Revelation and it described heaven…

Anne got real excited and said, “When I go to heaven I want to be a doctor because if anybody that’s sick goes to heaven, when they get there, I’ll make them well again. I will take their temperature and tell them that they’re okay and that will make them soooooo happy.”

And then she changed her mind… “No, I want to be a teacher in heaven.”

But then she said something profound… “But Daddy, what I really want to be when I get to heaven is… ‘me.’ I want to be the ‘old Anne’ when I get to heaven. Daddy, will I get to be the ‘old Anne’ when I get to heaven?”

Wow. What would you say? This is an interesting question. One that I’ve thought about often. Yes, Anne will have a new body in heaven, but her spirit – or soul – will have the effects of having to live with a disability on this earth. Her character will be refined and strengthened from the hardship of having a brain injury. She will be beautiful. Absolutely beautiful.

But I wasn’t with Anne when she asked this question… Eric was. And I think his answer was perfect. Eric said,

No, you won’t be the “old Anne” in heaven. God makes all things new. You will be made new!

I like that. Don’t you?

Resting in the moment

Life is made up of moments. In the midst of suffering, the only way to live is-

moment.
to.
moment.

Thinking of getting through the day or even through the next hour can be overwhelming. Living at the hospital following Anne’s accident taught me to live in the present, with my eyes fixed on the moment at hand.

Now that we have settled into our new normal, most of my moments tend to revolve around Anne. So in the middle of the relentless job of caring for a disabled child, if I happen to have a lighthearted, fun moment – well, I sit up and notice. It’s a gift. And I don’t take those rare, oh-so-good moments for granted.

I just had one with Kate. She’s fascinated with Olympic swimming. Have you seen the Swim Team’s “Call Me Maybe” video? We just watched it :-)

Another good moment from the summer… Playing in the pool with Kate and looking over to see Canon sitting under an umbrella with Anne, blowing bubbles – everyone had smiles. That was a good moment.

And I guess this is where I struggle, it’s hard to have those idyllic moments with the whole family. Anne rarely contends with being anything other than the center of everything. And as much as I love her, my moments with her require enormous amounts of patience. She’s been especially rotten and demanding today. And I’m out of patience. It’s gone, and I’m spent.

She’s up in her bed, hollering for me… “Mama!!!!! Mamaaaaaaaa!!!!!” I wish I could just sit here and watch the Olympics with my family and ignore her. But it’s hard. And I’m tired.

So that’s my moment. Tired mama, trying to ignore the cries of her little girl and longing to just sit and watch some Olympics. Where is God in moments like this? Right smack in the center – loving us and molding us into the people He wants us to be. In every moment, I have a choice… ignore God or acknowledge Him. Acknowledging Him- and His loving hand in every aspect of my life – lifts my eyes past my circumstances, past my tiredness and helps me to rest… even as I get up to see what in the world Anne is hollering about now ;-)

Life in the desert

I’ve been struggling lately.

Writing takes effort to connect with what God is doing in our lives. Sometimes, I don’t see His hand, and that is discouraging to me.

In an effort to find God, I started reading the book, A Praying Life, by Paul E. Miller. It’s been a while since a book has so deeply impacted me. This is mainly because Paul uses vignettes from his own family to illustrate his points, and he has a special needs daughter.

He’s put words to my longings. I now know I’m living in the desert. According to Miller, the desert is a place where there is a great divide between hope and reality. In my case, there is a great divide between my hope for Anne’s healing and the reality of Anne’s disability. And to add to the suffering, you have no idea how long you will be in the desert.

I’ve also learned that God can be close and intimate in the desert. I have experienced this. But typically, God remains on the edge, distant and elusive… Paul Miller says God stays on the edge in order to increase your faith. I get that. God has definitely been on the edge of my life lately, and it has been difficult to persevere in pursuing God. In other words, my faith needs a lot of increasing ;-)

When God seems silent and our prayers go unanswered, the over-whelming temptation is to leave the story – to walk out of the desert and attempt to create a normal life. But when we persist in a spiritual vacuum, when we hang in there during ambiguity, we get to know God (Miller, pg 192).

When we suffer, we long for God to speak clearly, to tell us the end of the story and, most of all, to show himself. But if he showed himself fully and immediately, if he answered all the questions, we’d never grow… No one works like Him. He is such a lover of souls (Miller, pg 193-194).

I am tempted to leave the story every day. Because frankly, Jesus’ demands on my life are painful. So I am left with a choice, the same choice that Jesus gave his disciples in John 6…

…many of his disciples turned back and no longer walked with him. So Jesus said to the Twelve, “Do you want to go away as well?” Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God” (John 6:66-69).

Everyday, when I am tempted to live life apart from God, I echo the words of Peter… Lord, to whom shall I go? You have the words of eternal life, and I have believed, and I know that you are the Holy One of God.

But it doesn’t make the journey any easier…

Crayons In My Water

An Unpredictable Special Needs Blog

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