Overnight Camp for Anne

We dropped Anne off at Camp TBI this afternoon. I can’t believe I actually left my precious Anne at camp. One part of me is desperately sad, and the other part of me is beyond excited.

She’s in a cabin with four other girls and their counselors. She’ll get to do activities like horseback riding, swimming, biking, arts & crafts, music – just normal camp stuff – but all made accessible to kids with disabilities. It’s a fantastic facility. I think Anne will have a great week!!

Please pray for Anne to have FUN and to not miss us too much. I don’t want her to be sad. I just want her to make new friends, feel loved and have fun. Thank you!

Bye Anne! We’ll see you on Friday!!!

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.

The Power of Words

Lately I’ve been finding myself especially grateful for Anne’s words.

A friend of mine graciously stayed with our kids recently so Eric and I could go out to celebrate my birthday (yes, Happy Birthday to me :). When we got home, my friend said, “I had no idea Anne talked herself to sleep!” It’s true. I actually have never considered how strange this is!

Sometimes she talks to Kate; sometimes she talks to herself, but every night she giggles and sighs and in the quiet darkness, she is lulled to sleep by the sound of her own voice. It reminds me that her voice is a gift.

It was the first part of her brain to switch back “on” after the accident. She barely had the ability to move her right index finger, but she could talk. Her eyes were fixed, un-moving, but she could talk. Even now, her vocabulary, sentence structure, reasoning and conversation skills are her strength and she daily uses this gift to bless others.

Lately, Anne has been even more discouraged about her physical disability. She wants independence so badly. She also struggles with watching her independent family carry on their independent lives around her. She complains, “Why can’t I walk? I’m tired of this stupid brain injury. When will it go away, Mama? Why doesn’t anyone pay attention to me? Nobody loves me.”

I’m so grateful that Anne is able to communicate her deepest needs and longings to us. The beauty of Anne’s ability to utter words is that she is also able to absorb words. And she absorbs them deeply, so my answers to her, the words I speak to her, have power. So before I answer her, I pray. I need God’s words, not my words.

Anne. Listen to me. God has given you a gift. A very important gift. He has given you the gift of words. Everyday I watch you bring joy to others through your words. You will have to fight to overcome your brain injury for a very long time. But God uses your brain injury to bring joy to others. You are a treasure.

The word, “treasure,” was the word Anne needed to hear. She repeats it daily. “I am a treasure, mama. God thinks I’m treasure.”

Words. They are so important. Lately, I’ve been praying for God to show me how to use my words more effectively for Him. I recently shared Anne’s story with Kat Lee, the founder of the Inspired to Action podcast. If you’ve never heard me talk about the gory details of the accident, I share that story along with how God’s presence was so palpable both during and after the accident. I also talk about Anne’s gift of words and ways to help moms of special needs kids. It’s so easy for me to be careless with my words! But I pray that my words in this podcast reflect God’s goodness and faithfulness.

Anne’s victory

Anne won!

No, seriously, she won, for real. The family went bowling, and she beat us all, badly, fair and square.

Bowling with Anne

Now, it’s true that we are all terrible bowlers, but that doesn’t diminish the fact that Anne legitimately beat all of us.

Anne was excited that she won, but I think she found more joy in just being… She loved the sounds of the bowling alley, she anticipated her every turn. She loved the ceremony of walking up to the lane and pushing her ball down the slide. She loved watching us cheer when her straight and true ball knocked down pin after pin. She loved the hugs. She loved the love.

Anne is free to enjoy the deeper layers of life. Once again, God uses Anne to reveal His joy!

A hope deferred

Hope deferred makes the heart sick,
but a desire fulfilled is a tree of life (Proverbs 13:12).

Lately my heart has felt sick. Not necessarily sad or mad…just “sick.” It hit me today that I’ve been placing my hope in the wrong things…

Now before I continue, I need to clarify the word “hope.” Hope means to expect with confidence. It’s not just wishful thinking – or dreaming of what you want to come true. It’s expecting it to happen. The book of Hebrews calls hope, “a sure and steadfast anchor of the soul” (Heb. 6:19).

So… when I place my hope in things that aren’t sure and steadfast, my heart becomes sick…

I’ve been hoping for Anne to improve. I’ve been hoping for Anne to break through that invisible barrier and start reading. I’ve been hoping for Anne to walk. Now those are wonderful desires and worthy goals to work toward, but I can’t place my hope in Anne walking! Anne walking is not a sure and steadfast anchor of my soul!!! And when I make it so, my heart gets pulled under by the counterfeit anchor.

What should be the only sure and steadfast anchor of my soul??? (I shouldn’t even have to write this, but I will) … Jesus. His life, His death, His resurrection, His promises, His forgiveness, His grace, His mercy, His, His, His!

Anne is in His hands. And He has His purposes for her life. I need to hope in Him, not in Anne’s improvement.

Not that we won’t keep working toward the goals of reading and walking!! We will most definitely persevere!!! But it’s much easier to work toward those goals when I take my hope off of the 9-year-old-disabled-girl and put my hope on The God of the Universe!

Yes, I think God is the safer bet. Don’t you? ;)

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 :)

Anne’s first day of 2nd grade

After waiting 20 minutes just to turn into the school’s parking area, we were forced by the flow of traffic to park a long distance away from the front door. So, as I was quickly trying to wheel Anne through the parking lot, across the side walks and into the school doors, I think we were stopped 4 times by teachers and/or staff yelling, “Hey Anne!!” to which Anne would reach out her arms and receive a warm hug. The hugs didn’t stop when we entered the building… oh no. Everyone seems to know Anne and Anne welcomes everyone with a hug.

This is the joy of having a special needs child. Anne isn’t fluent in the norms of society. She shows love unashamedly, and amazingly, she receives the same sort of un-filtered affection in return.

I had to pick up Anne early from her first day of school for a Doctor’s appointment. This was a follow-up visit after a Botox treatment. (Anne receives Botox treatments in her spastic muscles to help increase her range of motion.)

This particular doctor and nursing staff have followed Anne since her days in the hospital. So… as you can imagine, Anne is just as well-loved at this doctor’s office as she is at school. Always making jokes, Anne keeps everyone laughing. Today she said…

“Why are you talking about Botox? You wanna know about Botox??? Well, I’m a girl and I always wear Botox in my hair.”

And that is why everyone loves Anne so much! She brings us so much joy!

Quick Prayer Request:
Anne’s favorite para-pro, Mrs. Bush, is not able to work with Anne because of under-staffing. Anne’s teacher is requesting an additional para-pro which hopefully will free up Mrs. Bush to work with her. That decision is under review at a meeting on August 14th. We’re praying for the best scenario to work out for Anne (and everyone else in Anne’s special needs class – including the other students and her teacher and para-pro’s).

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.

A new perspective

My last post was a little depressing… Sometimes I just get overwhelmed with the weight of responsibility… But a few days later, I was reading through Mark in preparation for bible:365 (my daily bible blog).

God hit me between the eyes.

It was a familiar scripture… one I’ve even taught before. But this time, God had something He wanted me to hear…

And he sat down and called the twelve. And he said to them, “If anyone would be first, he must be last of all and servant of all.” And he took a child and put him in the midst of them, and taking him in his arms, he said to them, “Whoever receives one such child in my name receives me, and whoever receives me, receives not me but him who sent me” (Mark 9:35-37).

The part about the child intrigued me, so I turned to my study bible to read the commentary. Listen to this:

The attitude of heart Jesus is teaching does not even overlook a lowly child (at times marginalized in ancient societies) but receives, and thereby cares for, such a little one in Christ’s name. In contrast to the status-seeking of the disciples (v. 34), Jesus is showing them they should willingly take on lowly, often unnoticed tasks and care for those who have little status in the world …Humbly caring for people of lowly status out of obedience to Christ (“in my name”) will be rewarded by rich personal fellowship with both the Son and the Father. (ESV Study Bible, Crossway)

Wow. The very circumstance that I was complaining about (caring for Anne) is the very circumstance that can lead to “rich personal fellowship” with God. After I read this, I just sat and cried.

I cried because I was convicted. I was complaining about God’s good gift.

I cried because God considers my work with Anne valuable – and He’s the one who gave me the work.

I cried because He loves me, and I don’t deserve it.

I’m sure I’ll occasionally fall back into grumbling. But, now I have this piece of Scripture that reminds me of the privilege I have been given – to care for the lowly in status – because in essence, it’s like I am caring for Jesus, himself. It’s amazing what a new perspective can do for your peace of mind – especially when the perspective is God’s :)

Crayons In My Water

An Unpredictable Special Needs Blog

disability