Tomorrow will be Five Years…

Tomorrow marks five years since the car accident which left Anne with a traumatic brain injury. Five years with our new Anne. Five years without the old Anne.

We’ve lived through so much heartache and pain. We’ve all grieved – each at our own pace and in our way – and we’ve come through to the other side.

We are a family marked by disability. We park in handicapped parking spaces and work together to lift Anne’s wheel chair in and out of our van. Each child can assist Anne in walking to and from the kitchen table and help her get comfortable in bed. Her little sister helps Anne bathe and brush her teeth. And Anne’s older brother carries her up the stairs and comforts her when she’s angry or scared.

We live at a different pace. Anne’s therapy schedule only allows one extracurricular activity per child per semester. Sometimes I feel like the world races by us like a time-lapse video – while we’re stuck in our slo-mo world. Each frame of our lives is affected by Anne’s brain injury.

Recently I was telling a friend that there will always be a part of me that will remain sad. Sad for the life that Anne will never live – sad for the milestones that she will never reach – sad that I will never see the old gleam in her eyes – sad for what we’ve lost. But our sadness does not minimize the gratitude we have for Anne’s life and progress.

We are thankful for her quick wit and crooked smile. Thankful for her simple faith and deep love of people. Sometimes I hold her in my lap and am overwhelmed with gratitude that I get to be her mom. I feel so privileged – so honored to be Anne’s mom. She is a jewel and she’s mine!

So tomorrow we will celebrate Anne’s five-year milestone. We will thank God for her life. We will thank God for her progress. We will cherish her day and push our worries for the future aside. Anne is alive! And that is something worth celebrating :)

Spring 2010 / Age 5 (one month before the accident)

Fall 2010 / Age 6

Fall 2012 / Age 8

Fall 2013 / Age 9

Spring 2015 / Age 10

Therapy Milestones

Right now, I am sitting in the waiting room of a therapy center located an hour away from my home. I’ve been here every day for the last three weeks. Anne is finishing up another round of TheraSuit Intensive Therapy. I’ve been juggling my job, Anne’s therapy and normal mom duties. I’m done.

Each day in this waiting room is full of adventure. I’m here for hours every day. Kids with walkers, canes and scooters move past me, and typically they are crying. The same therapists deal with screaming kids every day – patiently pushing them past their comfort zones. There’s something refreshing about being around special needs kids. There is no pretense. What you see is what you get…

They are kind and compassionate. They have grit and determination. When they’re mad, they yell. When they’re happy, they squeal. It’s so simple – and real.

Anne is doing fantastic during therapy. Her strength, energy and balance have all improved since the last session. She cries, yells and squeals just like every other kid in therapy. She’s a mess. But she’s a good mess :)

Therapy will end in another hour or so, and Anne and I will start the hour-plus commute home. Tomorrow is the last day, and I can’t wait!

Sometimes I wonder if all the therapy is worth it. I wonder how much to push – how much time to sacrifice. But then I look at the progress…

Look at the difference between these two videos. The first is of Anne last year. Look at how wobbly and weak Anne’s legs are. The therapist is giving maximum assistance, holding Anne with one hand and moving Anne’s cane with the other. The second video was taken today. Anne is with the same therapist, but she is so much stronger!! Anne is able to manage the cane independently and the therapist is holding her lightly for balance/safety. The difference is amazing.

2014

2015

I guess we’ll keep taking one day at a time – resting in God’s strength to get through today and trusting in His faithfulness to provide the strength for tomorrow :)

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.

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,

A good friday for Anne…

My sweet Anne.

She didn’t use her words. All she had to say was… “Please stop touching me.” But she stuck her pencil up the little girl’s nose instead. That poor sweet girl. Anne hurt her feelings – and then something remarkable happened.

Anne felt remorse.

She told me later, “I wish I hadn’t done it. I want to take it back. …And I want to give my brain injury back too.” Well, that last part wasn’t remorseful, but it was honest! …Sweet, precious Anne.

I’ve been struck by something powerful as I’ve been blogging through the bible… God always gives the sinner a chance to repent. And when true heart-repentance occurs, God is merciful.

Anne pleased God today. She was repentant. And that makes heaven rejoice!

In spite of her rash actions, it was a Good Friday for Anne. It has been for me too :)

Happy Good Friday, and Happy, Happy Easter!

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.

Brief Update

I’ve been a bit discouraged lately. I get so frustrated with myself when I’m discouraged – because it means that I’m relying more on my circumstances than on the word of God.

I think the main issue that has been discouraging me is Anne’s behavior. She’s just been rascally lately. Very contrary and sometimes… mean. There are a few reasons for this…

Anne has frontal lobe damage. The frontal lobe controls executive function of the brain. This is the area that helps you use good judgment, promotes impulse control and helps you organize and plan. A healthy frontal lobe is crucial for independence. Anne does not have a healthy frontal lobe. It’s just extra hard for her to have self-control and make good decisions.
Also, Anne’s self-awareness has improved. This is good. It is just more evidence that her brain is continuing to heal – but it also makes Anne sad and frustrated.

So, we keep plugging along day by day. When I get discouraged and overwhelmed, I have to force my eyes heavenward and focus on the present instead of worrying about the future.

Worry… I worry that I’m not doing enough to help her heal. I worry that I’m wasting precious opportunities to work with her because I’m tired. I worry. I worry.

What does Jesus say about worry? Oh yeah, it doesn’t help ;) And it’s also not of God. So, when I worry, I pray. That’s all I know to do right now!

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?

Crayons In My Water

An Unpredictable Special Needs Blog

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