The Great Reversal

I have been reading through the Bible using The Daily Bible – which arranges the Bible into 365 chronological readings. I’ve come to Leviticus which contains all the laws. God’s holiness is beyond my understanding and I struggle to reconcile his law with the compassion of Jesus.

Leviticus 21-22 are especially difficult passages for me as they refer to “without blemish.” No priest or animal could have a blemish. That meant no blind priests in the tabernacle. Hunchbacks were not tolerated. Even if your hand was injured, you were not allowed.  Where does Anne’s disability fit into God’s picture of holiness depicted through the Levitical law?

But I have an idea… What if God was painting a picture of his original design? What if he was pointing back to what should have been – before sin entered the world… Sin corrupted everything… even our physical bodies. Disability, sickness, and death were not part of God’s original plan. There was no “blemish” before sin. Taking this idea forward, what if God was also painting a picture of how he will restore all of creation at the end of the age? In the new heaven and new earth, there will be no blemish, no defect, and no disability!

Anne’s disability is just an outward picture of our inward brokenness. Apart from Christ, none of us can approach God’s throne because none of us are “without defect.”

In this difficult time of waiting for heaven, I can find hope in the resurrection of Christ – which undoes the effects of sin. It is the resurrection which begins the great reversal. What did C.S. Lewis write in The Lion, The Witch, and The Wardrobe?

Though the witch knew the Deep Magic, there is a magic deeper still which she did not know. But if she could have looked a little further back… she would have known that when a willing victim who had committed no treachery was killed in a traitor’s stead, the Table would crack and Death itself would start working backward.

Death is working backward. One day Anne will be whole and without defect. And so will I! Lord, hasten the day!

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Stairlifts and Basement floors

Seven years ago, our family moved. We were living in a three-story house (with a drive-under garage), and everyone assumed we were moving to a more accessible ranch home. After all, stairs are not practical with a disabled child. But no. We moved to another three-story house with a drive-under garage. Why would we do that?! We moved to a cul-de-sac where our closest friends lived – my kids have literally played in the street (and surrounding woods) with their best friends for the last seven years. It’s one of the best decisions we’ve ever made.

But as Anne has grown heavier, navigating not one – but TWO – flights of stairs has become too difficult. Eric and I have been wrestling with whether to move away from our coveted cul-de-sac or figure out how to make this house work for Anne. We have spent so much time and energy brainstorming out of the box ideas – from moving to a 900 sq. ft. ranch to pricing elevators!

Exasperated from dead-end solutions, we finally turned to God and asked for help. (Obviously – this should have been our first move.) God, in his mercy, gave me an idea…and it was such a simple and obvious solution! We have a partly-finished room in our basement – right off the garage – with an (unusually large) finished bathroom. Why couldn’t we convert that room into a bedroom for Anne?

Currently, I hear the banging of floors being installed in our basement!! Anne will have her own room right off the garage with an accessible bathroom. In the mornings, I can get her ready for school and not have to get her down two flights of stairs. She’ll already be down there! Also, the bathroom has a shower stall. No longer will I have to lift her in and out of a bathtub, but she can transfer from her wheelchair to a shower chair into the shower stall that has been in our basement (unused) for the last seven years. Even the sink in that bathroom is perfectly accessible by her wheelchair. We are also installing a stair lift from the basement to the main level of the house to help ease the burden of getting her up and down the stairs.

Once again, God has provided perfectly for our every need. Why am I surprised? Not only has God provided for Anne, but also for our other kids. They get to stay close to their friends, and Kate (for the first time in her life) will have her own bedroom :)

Being a special needs parent is hard. But seeing God provide – even in these material ways – is so encouraging. Jesus loves Anne. He loves me. He will not leave or forsake us. I’m so thankful!

Update: Anne has moved down to her new room and she LOVES it!!!

8 years

Today is the 8th anniversary of our accident.

I still remember the day so vividly. What strikes me most is how ordinary it all seemed. I didn’t wake up with any strange premonitions. It didn’t seem like the last morning that Anne would be able to get out of bed by herself. Walk herself to the bathroom. Brush her own teeth. Use her left hand. There were no shouts from above urging me to look close – that this was the last day I would see her bright, intelligent eyes – the last day she would jump, move, smile, create, and live as a typical child in a typical family.

A lot changes in 8 years. On the day of our accident, I had two preschoolers and one 2nd grader. Today I have one in high school and two in middle school. So much has changed. We’ve all grown.

Jackson family – 2010 – Bobbi Jo Brooks Photography

Jackson family – 2018

Yes, we’ve grown physically – but I think we’ve grown more spiritually and emotionally. We give more. We love more. We’re more grateful. A little more patient. Eric and I have grown into our roles of caregiver. Anne is such a delight. We both receive so much more from her than we give.

So yes, I still miss our typical Anne. But the loss of the five-year-old Anne makes me more grateful for our 13-year-old Anne. I savor her words. Gaze at her eyes. Marvel at her smile. I drink in her joy and share in her sadness. She makes my life richer – more worth living somehow. And I’m grateful!

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.

 

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.

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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!

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 ;)