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.

So I encourage you to go where it’s easy to see God’s truth, goodness, and beauty! Whether that’s a day at the beach or a conference for Latin enthusiasts, find time 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!

Seven Years

This morning, Kate woke up and said, “Mom, it’s the 13th and I’m sad.” This is the first time she’s acknowledged the anniversary of the car accident. This is good progress for Kate as she continues to grow in grief.

Anne before the accident

Anne after the accident

As Kate was crying, Canon offered these words of comfort…

When blacksmiths crafted swords thousands of years ago, when the sword was first made, the metal was very brittle. The blacksmith would dip the sword in fire and then in cold water over and over again until the metal was strong. It says in the Bible that God is with us in the fire. This is your fire, Kate. God is with you and he will use it to make you stronger.

God is with us in the fire. He is sovereign and good! We are thankful for God’s faithfulness to Anne and our family over the last seven years. We look forward to seeing how God’s goodness is revealed over the next seven years!

We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

 

A Three-Year-Old’s Journey through Grief

This is a story that needs to be told. It’s intricate, subtle and beautiful. And hard to write. Bear with me…

The story starts with sadness. I opened the results to Anne’s neuropsychological evaluation which reported her IQ. I refuse to type the number, but in the out-dated standards, she would be labeled as an imbecile which would be one step below a moron. Words. They are so powerful. In this case, I purposed to put the number and its hurtful words aside. They do not define Anne. But the sadness lingered.

Reading Anne’s irrelevant IQ score helped crystallize a thought I had been struggling to grasp. I realized that behind Anne’s sharp-witted tongue is a little girl who, despite her changing body, will always be a little girl. Some parts of her brain have changed – but the innocent child remains. Anne will never stop saying, “I love you, Mommy,” in her sweet, sing-song way. This is my greatest joy and my deepest sadness.

This is the backdrop for the typical Sunday evening when I was kissing my two girls good-night. My 10-yr-old daughter, Kate, shares a bedroom with Anne. Kate’s journey through grief has been complicated and incomplete. As a three-year-old, her tiny mind struggled to reconcile the truth of Anne’s condition. Kate went through a stage believing that Anne would recover completely. A few years ago, this lie exploded into many healthy tears as she accepted that Anne would always be physically disabled. But Kate wasn’t ready to accept that Anne would be cognitively different. So for years, Kate coped with her brain-injured sister by thinking that she was the same in every way as her – except that she couldn’t walk.

Imagine the hurt that piled into Kate’s heart as I, her mom, comforted Anne first in every sisterly argument. I didn’t know. I had no idea the stories Kate weaved in her mind to cope with her loss.

Until that Sunday evening.

Kate and Anne had argued. I comforted Anne first. I always do. Kate should know better, right?

This night, God gave Kate the words that opened my eyes. She said, “Mom, it hurts me when you comfort Anne first.” And then I understood. I saw the tangled stories in Kate’s heart. God used my sadness over Anne’s IQ report to speak truth to Kate.

Kate, if you were a mom and you had two daughters – a five-year-old and a ten-year-old – and both were crying, who would you comfort first?

Kate, not understanding the implication, simply answered, “The five-year-old.” Then I delivered the hard news, “Anne is like the five-year-old. She always will be.”

The truth is painful, but it is freeing. Kate’s heart burst and all the years of tangled stories to cope with her sister’s injury came tumbling out as gut-wrenching, grief-filled sobs. She doubled over in tears as her whole body convulsed. The loss was so palpable. So painful. She cried out in broken speech, “I want a regular sister. I miss my regular sister.” And she sobbed – healthy, cleansing tears.

This is what the bottom of grief looks like for a three-year-old girl who lost her typical sister. Seven years later, she accepted the truth. Her sister is like a five-year-old child with a teenager’s sharp wit. Anne is complicated- just like Kate’s grief.

Now begins the hard work of back-filling Kate’s heart with the truth that I love her just as much as Anne – even when I comfort Anne first. It will be a slow, complicated work, but it is based on the solid ground of truth. No more stories. No more three-year-old coping strategies. Kate can peel away her three-year-old self and walk forward on the bare, stone ground of truth. We’ll rebuild her heart – one warm word and hug at a time.

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.

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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!

Ordinary Moments

This morning, I was reading in my bedroom and I could hear Kate and Anne talking in the living room. Anne was confiding in Kate the way typical sisters do.

“Kate, my friend at school can walk. She doesn’t have a wheelchair like me. I don’t want this brain injury anymore.”

“I’m sorry Anne.”

“Please don’t ever leave me, Kate.”

Then I heard giggles, whispering and Kate’s footfalls approaching my bedroom. “Mom, can I make pancakes for me and Anne?”

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This is my view…Anne in her chair watching Kate work in the kitchen. An ordinary moment between sisters.

The ordinary moments are beautiful. They aren’t frenzied, anxious or forced. They remind me of God’s grace – often overlooked in these ordinary moments of life.

God’s mercies are new every morning!