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 when 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!

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!

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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 ;)

A “Thankful” Post

Sometimes I sit down to write and just feel empty. Paul’s words, “Poured out like a drink offering,” come to mind – but I don’t pretend to be that godly ;)

I do know this (in the wake of Thanksgiving)… I am deeply grateful for my life and the many jobs God has given me.

I’m thankful to be Eric’s wife. He’s away on business and I miss him. It’s nice to miss someone you love.

I’m thankful to be a mom – to a growing teenage boy, a spunky tween girl and to my Anne. The other day I was looking into Anne’s face and realized that I can’t imagine Anne without her brain injury. The injury has seeped into the deeper places of her person. I can’t see the “old Anne” anymore. It’s just Anne. I think this is good. Not the injury. The injury will never be good. But God’s work in our lives – helping us to accept his goodness in spite of Anne’s injury – that is good.

I’m also thankful for my teaching gig. I like teaching Latin to middle schoolers. But what I like most is just being with the kids. I love watching them grow and hopefully playing a small role in nudging them toward the Savior.

So my empty feeling is a false alarm. I’m not empty. Only tired! And it’s the good sort of tired that comes after meaningful work.

Speaking of work, Anne starts another round of intensive therapy next week. Fifteen, four-hour therapy sessions will be spread out over the next month. My prayer is that she will begin to get stronger. She needs more strength to keep up with her growing body. I’ll post a few updates on her progress.

Lastly, I’m thankful for your prayers and all the encouraging words you have given me over the years. If you’re reading this, know that this journey is lighter because of you. I’m so grateful! -K