Hitting the Pause button*

After writing every day in 2013, I decided to give myself a break. What was supposed to be a break from writing has come dangerously close to a break from living. I’ve found that as I’ve detached myself from the daily discipline of writing – that I’ve retreated into a mind-numbing world of escapism. Netflix, Facebook, Roku – whatever its name – I’ve sought solace there. And of course, now that the month is over, I’m left feeling empty.

But I think that’s okay. Because I’ve learned some valuable lessons…

I’ve realized that one benefit of my daily bible blog was a constant supply of short-term goals. As I’ve hit the pause button on writing, I’ve also hit the pause button on accomplishing any goals. And without goals, I begin to feel overwhelmed by the future and the sheer scope of caring for Anne. I need short-term goals to keep me grounded in the present and help me stay dependent on God.

I’ve also accepted that loving Anne requires a boat-load of perseverance. Thankfully, Anne continues to make progress, but it is oh. so. slow. The amount of patience required to persevere with therapy and school work seems impossibly infinite. I fall so short of what Anne needs. My inadequacy keeps me tethered to God.

Bottomline: I need to live a life characterized by ENDURANCE.

I know a little bit about endurance from my running. I’m a very slow runner, but I can run a long way :) When I run a longer race – I LOVE the water stations. I always walk through them – savoring every drop of that icy liquid – and when I come to the end, I throw my cup down and start running (slowly) toward the next break.

We all need breaks. The difficulty with life with a disability (or for me as the caretaker) is that there really are no breaks. Everyday is a fight – a fight to carry out normal life…toileting, bathing, grooming, eating – so we have to look for respite in different ways.

I’m still figuring this out. I need to learn how to give myself a break without checking out of life and then resenting the gift of caring for Anne. And I think Anne needs breaks too.

Hmmmm…. I’m going to start thinking more deeply about this idea of living with endurance. I’ll let you know if I figure anything out ;)

*I stole the idea for today’s title from my friend, Josh…

Happy 2014!

What a blessed year 2013 was – not because of anything wonderful or terrible – just because of God’s grace to our family.

Everyone seems to have grown so much in the last year.

Eric’s faithfulness in prayer has increased. He’s been amazed at God’s consistent work through his humble prayers.
I finished my goal of blogging through the Bible. I still can’t believe I was able to write 365 straight posts. You can read what I learned from the endeavor here.
Canon (11) just grew. Man, he’s big.
Anne (9) has shown immense improvement – both physically and mentally. Her seizures are under control, she can walk with a walker and she is able to focus for longer periods of time.
Kate (7) has grown up in every way. She’s responsible and kind-hearted. I’m so thankful for God’s work in Kate this year.

God is always faithful to work in all of us! We are most thankful for 2013 and look forward to God’s adventures for 2014!

God’s Amazing Answer to Prayer!!!

Well friends… those of you who have prayed so faithfully and those of you who have prayed once or those of you who just think of Anne occasionally… today is the today to rejoice and thank God for his amazing and wonderful gifts!!

I’m so excited. Can you tell I’m excited??!!!

Anne is now walking with a walker, independently. She can propel and steer the walker independently. She has never been able to propel any assistive walking device by herself before last week. I can’t emphasize how amazing this is… Just watch :)

(Note: Anne’s Physical Therapist is holding Anne’s gait belt which is around her waist for safety only. She is not assisting Anne. Anne is walking, balancing, propelling and steering all on her own!)

In this 2nd video, Anne’s walking improves as she walks past a group of her peers… just watch how proud she looks :)

Here’s a cool twist to this amazing answer to prayer. Three years ago, when Anne was discharged from CHOA’s Day Rehab program, I asked the PT if Anne was ready to try walking with a walker. Her truthful answer of “No,” was very discouraging at the time. Wouldn’t you know that this very same PT accepted a position within the school system last year. And on her first day of work, she walked into Anne’s class and Anne recognized her. Anne, her former patient from Day Rehab, was her first patient in the school system. And it was this same PT (who told me, “No,” to a walker three years ago) who worked to find the perfect walker for Anne. This is Lavonda, Anne’s PT, walking with her today. I am so grateful for her expertise!!

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 →

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!

Desire & Determination

My last post was all about how I had been placing my hope in the wrong stuff… like Anne walking (for instance). Well, wouldn’t you know it – all of a sudden Anne has made a major improvement in her walking??!!! Just goes to show you that God really does love to give good gifts to his children!!

Yesterday, we gathered with Eric’s family for a casual Sunday afternoon get-together. Check out this video of her walking to Papa and Nana’s front door.

As I took this video on my phone, I thought to myself that her walking seemed especially good, but I wasn’t prepared for how Anne would surprise us throughout the day…

Papa rented a boat and we cruised around in the sunshine!

Anne & her Papa

At one point, Anne was sitting on a bench – sort of away from everybody, and decided she wanted to be closer to her Aunt Krista, so she tried to stand up and walk.

Now, Anne struggles with the skill, “sit-to-stand.” We take this skill for granted, but for Anne, it’s very difficult… so as she tried to stand over and over again, she got herself crooked on her bench. She recognized this and scooted herself back to the middle of the bench with her legs straight in front of her. I almost fell out of my seat when I saw her do this. Again, something very simple, but very difficult for Anne. And then that little girl stood up and tried to walk by herself over to where her Aunt Krista was sitting. Thank goodness her sister, Kate, was there, because Anne would have fallen!

And that was our day. Watching Anne stand up and try to walk to one family member after another – on a moving boat!! We would always grab her by the hand so she wouldn’t fall – but I’ve never seen Anne with such determination!

This is a huge step forward for Anne. We’ve been praying that Anne would desire to put forth effort. Thank you God for hearing and answering our prayers!!! She is attempting to move in ways she never has before. We have to keep an extra close eye on her now, but we’ll take it!

Our new determined girl!

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).

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