Mean Anne

Anne’s turned mean. And it’s breaking my heart.

My rational mind knows that she’s almost 13 with rushing hormones. She’s angry that she can’t walk. She’s angry that she can’t get herself water when she’s thirsty. She’s just angry. There’s no parenting manual for shepherding a brain-injured child through the tumultuous teen years! Anne’s new school schedule is making it worse. Again, I understand. Change isn’t easy. But every time Anne spews angry words my heart twists.

Why? Why am I so broken by Anne’s anger? 

Because I’ve told myself that God is redeeming Anne’s brain injury by shining his character through her life. Her simple child-like faith, her kindness, her joy – they all point to Jesus. So when her beautiful spirit is spoiled by anger, my heart fills with doubt.

Is God still good? Is he still working through Anne? Will he continue to use our family to reveal his redemptive ways? Is he still faithful?

Oh, how faith crumbles when we look to temporary circumstances instead of his eternal Word. I read Psalm 84 this morning and was struck by the imagery of God’s goodness pouring down on his people. I wept. And prayed for eyes to see God’s goodness pour down.

Psalm 27:13-14
I remain confident of this:
I will see the goodness of the Lord
in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord.

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Warning: Patience Required

Patience. I need more of it. Don’t we all? I

Four years ago, after Anne finished a fantastic round of her three-week intensive therapy, I had grand visions of Anne practicing her walking in the pool. I imagined us happy and carefree, using the pool’s buoyancy to help support her as she exercised her muscles in a fun, relaxing way.

Ha!

Our first trip to the pool, I confidently held her on my hip and started to carry her into the water. As soon as Anne’s toes hit the water, she screamed, “The water is too cold. Get me out. Get me OUT!!” That summer, I forced her to walk a few “laps” in the pool before I got her out. She has refused to enter the pool for the last three summers. Until…TODAY!

As I was sitting next to Anne on the side of the pool (she likes to fill and empty a solo cup with pool water) she looked up at me and said, “Mom, I want to get in the pool.”

I’ve heard this before. I go to pick her up, and she screams, so I put her back on the side of the pool, and she goes back to contently playing with her solo cup. But not today. She let me carry her into the pool, slip her body down into the water, and most amazingly, allowed her big brother to teach her how to use a float.

Anne kicked, walked, floated and played all over the pool today. It took four years, but my grand visions have come to life. Anne was telling everyone in the pool, “It’s a miracle!” (We got some strange looks!)

 

 

God works in His own time. Our job is to wait. And in the waiting… to not lose hope.

 

Rest for the Caretaker

I’ve spent the last three days at a retreat in New York State for Latin enthusiasts. Let me make a disclaimer: I am not a Latin enthusiast. I am a Latin teacher. I can even say that I enjoy teaching and studying Latin, but it would not be my life-long dream to attend a conference for Latin enthusiasts!

So why did I go? One word: Rest. 

As a caregiver, I need regular bouts of rest. Teaching Latin is restful for me. I teach in a supportive, Christian environment surrounded by competent co-workers who inspire me both academically and spiritually. Most days I leave my job refreshed and energized to do my real job which is to take care of my family.

But there is a deeper reason why teaching and attending a Latin retreat is restful to me. By engaging with language, I am immersed in truth, goodness, and beauty. Latin is a beautiful language. It is the beauty of language which causes me to marvel at both Shakespeare and the Broadway musical, Hamilton. It is my love of language which compels me to read classics like A Tale of Two Cities and also appreciate a good story like Harry Potter. Interacting with language through writing inspires me to observe the world more closely – to look for evidence of God’s truth, goodness, and beauty in my everyday world and through my daily, tenuous circumstances. And ultimately, it is my love of truth that compels me to study and write about God’s word. Seeing the themes of God’s redemption woven through the pages of Scripture is good and beautiful!

Truth, goodness, and beauty.

It is easy to notice goodness when surrounded by Latin enthusiasts chattering about their love for Latin grammar.


It is easy to enjoy beauty when surrounded by lush, green gardens on a clear summer day.

It is easy to appreciate truth when given uninterrupted time to study God’s word. But how easy is it to find truth, goodness, and beauty within the confines of the relentless monotony of caregiving – or any other difficult circumstance? (Hint: It’s not very easy.)

Allowing space to recharge and re-notice God’s truth, goodness, and beauty heightens my awareness of God’s constant presence when thrown back into the fast-paced noise of everyday life… For example, when I’m exhausted from caregiving, there is nothing beautiful about playing Candyland with Anne. But if I’m patient and have the energy to stop complaining, God reveals the deeper beauty of a child’s unhindered joy. On the surface, there is not much good in having to regularly help Anne to the bathroom. But undergirding this mundane task is the goodness that Anne trusts me implicitly. And if I’m rested, it’s easier to believe the truth that there is a hope beyond this world.

I’m so grateful for rest.

Matthew 11:29 (ESV)
Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.

 

Exhaustion, Worry, and Joy.

Things I find myself saying…

I don’t want to play Candyland.

Ok, I’ll play Candyland.

No more Candyland!

Anne, please don’t throw that.

Anne, get my hair out of your mouth.

I love you too, Anne.

Sound it out…good reading!

Anne, be kind to your sister.

Yes, I’ll read you one more book.

Summers stretch me. I constantly have to put my own wants and desires aside. It’s a consistent “dying to self.”

I also find myself vacillating between discouragement and joy. Spending so much time with Anne puts me face to face with all of her delays and challenges. She is dependent for every bath and every meal. She can’t dress herself, brush her own teeth, or get herself to the bathroom. Caring for her is exhausting, and I worry that I won’t be able to outlive her. Worrying about the future is just as exhausting as caring for her in the present. I’m constantly having to pray for God to help me lay aside the anxiety.

There is also joy in caring for Anne. I love her crooked smiles, her simple faith, and the freedom she has to express her heart. God fills me as I spend time with Anne. It’s a paradox. Die to self and God fills you up. I don’t understand it. But occasionally, I get to live it.

Anne goes to a new overnight camp in a few days. Again, I’m struggling with worry. Will they care for her well? Will she have angry outbursts? Will they respond to her with kindness? What if? What if? What if?

I’m not a worrier by nature, so anxiety feels like an unwelcome guest. I pray for God to give me his peace. He is sovereign. He is good. That is enough. It has to be.

Summer Moments

Anne finishing a book!

Playing with Snapchat

Another silly Snapchat pic :)

 

Time is Different with Disability

This morning was Anne’s first day of summer. She woke at 7:30. I gave her a bath. She loves baths! After dressing, taking her medicine, and eating breakfast, it was almost 9:00 am. Time. It slips away like water. Everything takes longer with disability.

After breakfast, Anne watched the Wiggles while I finished report cards (summer break for teachers is a myth). Then we read a book together.

For the last seven years, my prayers for Anne have been for her to walk and read. God answers prayer. Sometimes he answers quickly and dramatically. Other times, his answer is a slow work – shifting subtlety over time – molding character through patience and perseverance. It is true that Anne can walk and read better than she could seven years ago. This is something to be celebrated. She read the whole Little Bear story, all eleven pages. She read three lines completely independently. I’ve never seen her do that before. She was highly distractable but she had a great attitude as I redirected her attention back to the story. She read with comprehension – often re-reading lines with more emotion to emphasize the meaning.

It took approximately 45 minutes to read the entire story. We were interrupted by a telemarketing call. After I hung up, Anne said, “That was awkward.” We laughed so hard together. The left side of her mouth used to droop when she smiled. Now her smile is almost even – and it’s perfect when she laughs. I love her laugh.

Anne’s almost-even smile

 

We finished the story at 10:30 am. Time. It slips like water. But it’s summer, and there is time to give. Anne is my treasure – a gift to be savored!

Saturday Extracurriculars

Most of my friends spend Saturdays with their families…soccer games in the fall, baseball games in the spring. Some swim all year long or attend gymnastics meets every weekend.

My typical daughter, Kate, would love to play soccer in the fall and spring, go to dance-lessons 3 nights a week AND be a competitive gymnast. Her energy and drive amaze me. But our family isn’t able to live at the same pace as typical families.

We are able to participate in one extra-curricular activity per season. Kate was in gymnastics in the fall. Canon played basketball in the winter. And Anne is in robotics therapy this spring. This is how I spend my Saturday mornings – watching Anne in CHOA’s multi-million dollar robotics lab!

This is not the typical “extra-curricular activity,” but it is for our family! Even though I know this is what is best for Anne, I still struggle with guilt. I worry that I’m cheating Kate out of opportunities that would develop her natural athletic ability.

All families struggle – our struggles are just different than the typical family. But the joys far outweigh the struggles. I just hope Kate feels the same way.

Valentine’s Rant

Valentine’s Day is not at the top of my list of favorite holidays. Its saccharine commercialism turns my cynical stomach. Besides, I’m a middle school teacher, and we middle school teachers KNOW that it is best to avoid all references to romantic love of any kind!

So. I forgot all about Valentine’s Day. Which is not good when you have kids in elementary school. In case you didn’t know, there is an unwritten rule that says that all elementary school-aged children must bring every classmate a special valentine – preferably with candy attached.

This day started as usual – with me waking Anne up early to get ready to catch the bus. Anne’s first words to me were, “Happy Valentine’s Day, Mommy!” This is from the girl who struggles with memory and knowing the days of the week. She confuses “yesterday” and “tomorrow” on a regular basis. But she knew it was Valentine’s Day. She then asked to wear her “love” shirt to school. “You know the one, Mommy – the blue shirt with L-O-V-E spelled out with arrows!!” Really? Who knew Anne loved Valentine’s Day so much?!

I felt like a total mom-failure when I realized that I would be sending my Valentine-loving-Anne to school with NO VALENTINES. How does this happen? How do I forget a MAJOR HOLIDAY?! Anne’s sister, Kate, was not happy with me when she realized that she would be hand-writing each Valentine on note cards on the way to school. No fancy-schmancy store-bought cards for the Jackson girls. It’s hand-written or nothing!

Oh… In case I forget,  Happy Valentine’s Day ;)

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Silly Jackson Girls

Epiphysiodesis

Anne is having surgery today…google: Epiphysiodesis! Her right leg is 1 1/2 inches longer than her left. Doc is inhibiting her right growth plate at the bottom of her femur (thigh bone) so that hopefully her left leg can catch up a little.

2017-01-17-07-31-02

Please pray for a successful surgery and a smooth recovery. Anne and I plan to chill at home for the next few days. This is how Anne and I pass the time – being silly :)

Update: Anne is out of surgery, and it went very well. The doctor said that based on the amount of growth left in her shorter leg, that Anne’s legs may even up after a few years. Thank you for praying!

Reminding Myself…God is in Control

The other night I dreamed that Anne could walk. I woke up that morning overwhelmed with joy which was quickly replaced with disappointment, but in the end, I decided to land on “hopeful.” In my half-awake state, I heard Anne calling from her bedroom, “Mommmm! I need to go to the bathroom!!!” Bleary eyed, I walked to Anne’s room, only to find her – not in her bed – but in the hall, right outside the bathroom. She can scoot to the bathroom, but she has never done it in such a purposeful way before.

I’m a firm believer in the sovereignty of God. If I look at the seemingly random events of my life through the lens of God’s sovereignty, sometimes I see patterns. That morning, Anne’s purposeful scooting to the bathroom immediately after my dreaming of her walking – seemed like a pattern. I would never go so far as to think it was a promise that Anne would walk! (The Bible doesn’t promise that!!) But…I do think it was a loving reminder that God sees the longing of my heart and cares. I was encouraged as I reflected on God’s sovereignty and could feel myself relax as I thought…God is in control.

I’ve also been encouraged by Anne’s progress in therapy. Her walking has dramatically improved. She is standing much straighter and crouching much less. Her endurance has also improved. The first day, she was able to stand for only 2-3 minutes. Today, she stood for 15 minutes. She also walked for 20 minutes (with support) on the treadmill. Her step size has increased as well as the speed of her walking. Also, she is propelling and steering her new walker independently. We typically see these kinds of dramatic improvements a few months after therapy. To see so much drastic improvement during therapy is very encouraging! See…God is in control!

2016-12-20-14-11-57

Anne with her new walker

Anne’s last day of intensive therapy is Friday. This session has flown by and seemed much easier to manage than in years past. That’s due in part to good friends who have offered to drive Anne for me a few times each week. I have been lifted and sustained by the body of Christ. Another reminder that God is in control!!

Looking forward, Anne will start three months of therapy in CHOA’s multi-million dollar robotics lab in February. She responded very well to their Physical Therapy program 1 1/2 years ago. So, I’m excited to see Anne continue to gain strength and stability this spring. I’m thankful that I can trust God to provide all that Anne will need exactly when she will need it. Afterall, He is in control ;)