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 ;)

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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 goodBut 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

 

 

It’s Go Time.

Anne’s legs continue to weaken. As her legs grow, her hamstrings tighten, which make it hard for her knees to straighten. Her knee ligaments are stretched so that they no longer give her stability.

We visited the orthopedic surgeon today. This visit has started a snowball of action to help Anne get stronger. The orthopedic surgeon wrote a prescription for KFO’s (Knee-Foot-Orthotics) to give stability to her knees. We will visit the orthotist on Thursday who will make her KFO’s and deliver them to us in about a month. Then, Anne will do another round of the three-week intensive therapy in December to strengthen her quadriceps and hips. In January, her orthopedic surgeon will give Anne botox injections to loosen her hamstring muscles. And finally, I have a call into CHOA’s multi-million dollar robotics lab to start Anne on a 3-month session of intense physical therapy beginning in January. And then we will repeat the whole process this summer.

Our goal: to regain the strength Anne had before her growth spurt and to maintain strength throughout puberty. It will be an uphill climb. We are resolved to fight.

Please pray:

  1. For an opening in CHOA’s robotics lab that fits my work schedule. Logistically, it will be difficult to fit in two, therapy appointments a week into my full-time teaching job.
  2. For Anne to not hate wearing her KFO’s. It’s important for Anne to tolerate her KFO so that she can walk more often at school and at home to build strength before her December Intensive Therapy session.
  3. For discipline and energy for Anne, me and our family.

Anne’s story is a good story – a story of a big God saving a little girl who gives God lots of glory. The story has a good ending. We are just in a hard chapter. We continue to pray Hebrews 12:12-13 over Anne daily. Thank you for fighting along side us!!!

Therefore lift your drooping hands and strengthen your weak knees, and make straight paths for your feet, so that what is lame may not be put out of joint but rather be healed.

 

 

Anne Unfiltered

Anne has very little ability to filter her own thoughts. This results in her complimenting strangers and interrupting conversations. Most of the time, she is delightful, but then there are episodes like today…

This morning, I started a new adventure in our new church – teaching a 5th grade leadership/discipleship class. My experienced co-leader warned me that this year’s class could be the biggest EVER. Kate and Anne – both being 5th graders – get to have me as their teacher. Lucky them ;)

Anne, Kate and I arrived early to church to welcome the 5th graders to class. Imagine my surprise when TWENTY NINE crazy kids showed up. Consequently, I decided to begin the year with a serious talk about behavior expectations ;) As I began my spiel, literally, as if she had planned it, Anne began SCREAMING at me. Seriously. Screaming. “Stupid, mom! I want a snack!!” Kate tried to calm her down which only made Anne madder…”KATE, STOP. I HATE YOU KATE!”

There I was – with 29 pairs of eyes staring at me – right in the middle of me trying to act all strict when my own daughter started yelling. This is what “No Filters” looks like sometimes.

I made a silly quip about how Anne was demonstrating how “Not To Behave” and gave her one of my mean “mom” looks. Miraculously, Anne calmed down. Just a few minutes later, Anne raised her hand when I asked why we needed to show respect to others. She said, “Because if you disrespect others, you are not obeying the Holy Spirit which lives inside of you and helps you to follow God.” Wow. Good Answer. This is also what “No Filters” looks like sometimes.

We survived church and had a relatively quiet Sunday. But tonight, as I was getting her ready for a bath, Anne said,

“Jesus has a good plan for my brain injury. When things are at their darkest that’s when I have to believe the most.”

This profound thought was sandwiched between excitement over new bath toys and wondering whether she had to go to school the next day. Just another thought in an unfiltered day.

I wonder what I would look like “unfiltered.” That is a very scary thought! Most of my thoughts center around myself or are critical of others. I have small moments of thankfulness and/or God-focused thoughts – but not as many as Anne.

In some ways, I believe Anne’s brain injury is an asset. She’s not self-absorbed or bound by the fear of what others will think of her. In other words, she is not encumbered by self-consciousness.

I think Anne’s secret to an unfiltered life is that there’s less of herself to get in God’s way. He works through her more powerfully, because she surrenders herself so effortlessly. I get to see ALL of her joy, sadness, anger, wonder, disappointment and excitement. It is beautiful to me – because she is wrapped in the fragrance of Jesus.

Level paths for Weak Knees

Let me be real for a moment…I’m struggling to trust. I’m struggling to look past the visual evidence. All I see are Anne’s weak knees. Her body is outgrowing the strength of her muscles. She struggles to straighten her legs when she walks. It makes me sad.

I’m also worried about the future – specifically where Anne will go to middle school. She just entered the 5th grade at the same school she’s attended since the accident. Next year brings major change – which makes me anxious.

Sadness, anxiety, worry. These are not the emotions of faith. I find myself crying out to God for help to trust.

This morning, God led me to this passage:

Therefore, strengthen your feeble arms and weak knees. “Make level paths for your feet,” so that the lame may not be disabled, but rather healed. Hebrews 12:12

Stumbling across this verse reminds me that God knows my anxious thoughts. He is not far off. Anne’s healing may not come until heaven, but it will come. Eric and I will continue to pray for God to strengthen Anne’s weak knees and level her path to middle school. He is faithful when I am faithless. Thank God.

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Walking on…

Summer…oh Jesus. I need help during the summers!
I’m not wired to play Candy Land and Chutes and Ladders with Anne for HOURS upon HOURS. Lord, help me!

This is my prayer of desperation! God hears ALL prayers. He’s sent me so much help for this summer. The help comes in a variety of shapes and sizes – but it’s help. Anne has camps, siblings, paid helpers, intensive therapy, the beach and the pool. We’re on Day 2 of 65. It’s all good.

After transitioning from part-time to a full-time teaching position this January…I’m tired. So tired of school – that I’m actually looking forward to summer. My two days with Anne have been such a welcome change of pace. She continues to grow, change and recover. She’s doing so well.

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Unbelievably, Anne turns twelve this fall. Her hormones are making her moods swing more wildly – her bursts of anger and frustration are more intense. I need wisdom to navigate how to appropriately discipline a hormonal, almost-12 year old tween with a brain injury! God has a sense of humor.

In all circumstances, God leads Eric and me to lean more deeply into Him – looking to God for strength, energy, wisdom, guidance and faith. As the pastor preached last Sunday, “Don’t give up. We’re not home yet!” By His grace, we continue down this road – the road God has planned for our family. Whether good or bad, easy or hard – it is God’s plan – so we walk on…

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Thank you, Sarah Figaretti, who played with Anne so I might have the time to write this post!

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Some of Anne’s more recent adventures…

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Six Years

On this day, six years ago, Anne survived. She has now lived more years with a Traumatic Brain Injury than without. It still hurts to think that my beautiful daughter will live the rest of her life battling disability.

But life goes on ;) We, like most every family, battle the mundane. There’s still laundry and lunches to prepare. Meal planning and carpooling. Now that I am teaching, I have additional grading and lesson planning responsibilities.  We also have “special” mundane tasks…like today, on my day off, I made a visit to the chiropractor because carrying Anne down the stairs ain’t no joke! I also just completed a seizure action plan for Anne to attend overnight camp this summer. Ordinary tasks for an ordinary day.

But it’s not an ordinary day! I now share this painful anniversary with a friend whose mother passed away this morning. I will reach out to her on April 13th for years to come…just as friends have reached out to me. I just received this text, “Love you today, sweet friend! Grateful for all God has done.”

Grateful. This is the right word. For even though we still experience sadness when we look into Anne’s forever-different eyes, most of all, we feel gratitude. I believe her unconditional love is the closest to God’s love I’ll see this side of heaven. We are grateful for our Anne!

To celebrate Anne’s life on this day…we are sharing a video our oldest son, Canon, created as part of a scholarship application. We love you, Anne!!!

Eating out with Anne

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Friday afternoon, after an unusually hard week at work, I pulled into Anne’s school. Thankfully, the handicap spot was open so I parked easily and went inside to pick up Anne from the after school program. As soon as I walked into the lobby, the ASP worker called on her walkie-talkie, “Anne Jackson, Mr. J., we need Annnnnne Jackson.” Anne loves hearing her name on the walkie talkie. I heard her jabbering with Mr. J. as he pushed her forward toward me and Kate. As soon as Anne saw us, she blurted out the same questions she asks everyday, “I’m hungry!! Do you have anything for me to eat in the van?” I usually respond, “Anne, we’ll eat when we get home,” but I was tired, and it was Friday, so I answered,”We’re going to a restaurant! Daddy is meeting us there!” Anne was so excited she tried to stand up out of her wheelchair but was pulled down by her seat belt. “Really?? Kate!!! We’re going to a restaurant. Are we going to go IN? Really, we’re going to go IN!!!”

We don’t go to restaurants very often. As excited as Anne gets about going to a restaurant, once she gets there, she becomes highly frustrated. Friday’s trip was no different.

We walked into the casual Mexican restaurant and I was relieved that we had arrived before the Friday night crowds. Practically empty, we seated ourselves next to the fountain – a novel distraction for Anne. As Kate searched for pennies in my purse, I asked the waitress if she could immediately put in an order of chicken fingers. Motioning to Anne I said, “She gets very impatient waiting for her food. Could you bring it as soon as possible?” With kind and understanding eyes, the waitress walked to the kitchen and then returned to get our drink order. Meanwhile, Kate was helping Anne throw pennies into the fountain. Again, thankful for the empty restaurant, I watched Anne hurl pennies across the room. Patiently, Kate would retrieve them while Anne laughed.

Before the waitress returned with our drinks, Anne lost interest in the fountain and began her impatient screams for food. “Where is my food?! I HATE this restaurant!! Why don’t they bring me my food??!!!!!” This is the reason why we rarely go to restaurants. Eric was running a little late and I was grateful he was missing Anne’s predictable tantrums. Canon and I took turns trying to reason with Anne, “Anne, your food is coming soon. Just a little bit more time. Be patient, Anne. You’re getting your food first.”

The waitress returned with our drinks and placed a large glass in front of Anne. Anne immediately grabbed for the glass and spilling water on her pants, she screamed again, “It’s cold!! I HATE this restaurant. When is my food coming?!!” The waitress met my eyes and responded, “I’ll get a cup with a lid.” Relieved, I started cleaning Anne up.

The waitress brought Anne a new drink (and extra napkins) and finally began to take the rest of our orders. In Anne’s typical playful way, she reached into the waitress’s pockets retrieving her phone and playing with her pens. Amazingly patient, the waitress tolerated Anne’s social miscues, looked into her eyes, and said, “I think your food is almost ready.” Anne had made a new friend! She responded enthusiastically, “Ranch dressing! Would you please bring me ranch dressing with my chicken fingers?”

A few minutes later, the waitress (who was now a super hero in Anne’s eyes) placed the plate of chicken fingers in front of Anne with a huge bowl of ranch dressing. Heaven. Anne was in heaven. And the whole table breathed a sigh of relief. We had made it. Anne had her food, and all was well. Just then, Eric arrived. Seeing Anne’s plate of food, he smiled with understanding, “Perfect timing.”

After Anne was happily full and we had all finished our meals, the waitress brought the check. She smiled at Anne who was giggling and playing with Canon. I turned to Eric, “Leave her a large tip.” Without hesitation, he responded, “Yes ma’am.” And we left, feeling triumphant that we had survived (a typical activity for most families) – eating out with our sweet and sassy Anne ;)

Marriage is hard

Today’s sermon at church was on marriage. It was so good! Before Anne’s accident, Eric and I sailed through marriage relatively easily…after the accident, however, marriage has been tough. If not for the powerful work of God in our hearts, I don’t know that we would have made it. But 5+ years later, I’m humbled and thankful for God’s gracious restorative work in our marriage. We laugh together again. That’s huge!

A few years ago, I wrote a guest post about marriage on a friend’s blog. I’m re-posting it today to celebrate God’s work in our individual lives to grieve, forgive, sacrifice and re-connect after Anne’s tragedy. Hope you enjoy it :)


What Makes Marriage So Hard?

Originally posted on Renee-Robinson.com on July 22, 2014

I’m sitting on a balcony, listening to waves crash against the sand, and I breathe in gratefulness. My husband of 17 years is beside me. We left one kid at camp and the other two with grandparents. Alone. We are finally alone at the beach.

17 years ago we were naive best friends starting a new life together. Life was simple. Now we are battle-worn best friends struggling to raise our little family. We’re weary, but we’re together.

Marriage. Who knew it could be so hard?

It got harder when our daughter was almost killed in a car accident. And marriage remains hard as we deal with the strain of caring for a daughter with a traumatic brain injury.

But yesterday, I almost ruined this trip. This trip that we’ve been looking forward to for months. This trip that took three spreadsheets to outline the caretaking schedule for our disabled daughter. We so need this trip.

What did I almost do? I almost let my anger force me to start a fight with my husband that would have taken days to recover from. But thankfully, God intervened.

It all started when my husband made a simple comment at lunch in which he defended an old family friend. I’m ashamed to say that I struggle to show kindness to this person. In many ways, I’m jealous of her seemingly easier life. My husband’s words picked at a sinful scab in my heart. Jealousy, covetousness, ungraciousness. Those are my ugly sins.

Instead of shining the light on my dark heart, I turned my critical spotlight on my husband. It’s easy to make up lies in your head when you don’t want to face your own sin. “How could he defend her?” I thought. “He should defend me! He just doesn’t understand how hard my life is compared to hers.” Ugly. My heart can be so ugly.

I retreated to my room and felt the anger well up through my stomach past my hard heart and clench its fists around my throat. I had turned fiercely angry.

“Oh God,” I prayed. “Please don’t let me ruin this trip. Please don’t let me lash out and hurt my husband. Please make the anger GO AWAY.” I tried to carry on as if nothing was wrong, but the anger only intensified and threatened to come out in a wave of poisoned words.

I retreated again. “Oh God. Please, please, please take this anger away. Please God. Please.” And I crumpled helpless to my knees and waited. And the change began.

God graciously, with such tenderness and compassion, opened my eyes to my jealous heart. The problem was me. Not my husband.

God’s tender conviction led me to my deep need for grace. “Oh God – please change me. Help me to be gracious toward this woman whom I envy. Give me your love for her. She’s just a mom – trying her best – just like me.”

Just like me. She’s just like me. A mom, struggling with sin – but trying her best – just like me.

And waves of forgiveness washed my anger away. I was free. His Grace had filled the crevices that just minutes ago were simmering with anger.

My husband came to me later, embracing me and whispering how he was sorry for being insensitive. God had worked in him too – separately – apart from me. God didn’t need me to change him. God is big enough for the both of us.

God saved our trip. Just as He’s saved our marriage over and over again as we fight to stay connected since our daughter’s accident.

He works in us in spite of our tragedy, in spite of our weariness. He makes us more humble, more dependent, more in love with Himself and with each other.

Who knew marriage could be so hard? And painful? And beautiful.

Anne’s Future

It’s been a while since I’ve written specifically about Anne and her recovery. Frankly, it’s because writing requires thinking and thinking about Anne’s recovery is painful.

Don’t get me wrong…our lives with Anne are filled with joy. She’s a precious jewel, and we are so thankful for her. But the joy doesn’t alleviate the pain. Rather, the joy and pain mingle together – coexisting in this relentless “life after brain injury.”

Sometimes it’s hard for me to see the oh-so-slow changes in Anne, but they’re there! She’s getting stronger. As her muscles get stronger, they also have to re-learn how to move with other muscles in order to do the simplest task – such as standing up from a sitting position. Anne still can’t do this consistently. One day she will!

I think the biggest change has been because of a drug we started giving Anne in August. It’s not really a drug. It’s labeled a “medical food.” Vayarin‘s website calls it: “an innovative non-drug clinical dietary therapy for managing ADHD symptoms.” Anne did not have ADHD before the accident – it’s just one of the many effects of her extensive brain damage. She is unable to take traditional ADHD medication, so we’re trying the nutritional “medical food” route…

We’ve definitely seen a positive change in Anne over the last few months. She still has an extremely poor attention span and impulse control, but interestingly, her awareness of time has increased. Let me explain.

One of the effects of Anne’s brain injury was that she constantly lived in the present. For Anne, the future was too abstract to grasp and everything that happened in the “past” she thought happened “yesterday.” But now, Anne has a broader awareness of both the future and the past. She can describe with detail everything that happened earlier in the day and understands that some things happened that morning and other things happened the day before. She is also aware that she isn’t stuck in her present – and she can plan to change her present situation. For example, if she is in the living room by herself and doesn’t like it…instead of thinking, “I don’t like this, and I’m very upset,” she can think, “I don’t like this and how can I change this? I can get down off of my chair and scoot around the house on my bottom and go find my mom.” Which is exactly what she does!

This is all very wonderful but awareness of the future also has its downfalls… Now Anne is asking hard questions like, “Mom, I thought this brain injury would be ok, but it’s not. When will it get better?” And…”I pray for God to let me walk again. Why doesn’t God hear my prayers?” In other words, she’s starting to wrestle with a future which is unknown – and forced to trust a God she can’t see. Seeing Anne wrestle with her faith is both heart-wrenching and heart-warming. Much like the mixture of joy and pain I experience every time I look at her. Joy for what she is…Pain for what she’ll never become.

God, I pray for you to reveal yourself to Anne in a way that is unique and meaningful to her. I pray for your comfort for her when she is discouraged and your grace for her when she is angry with you. Please God, use Anne to bring joy to others – redeem her pain and suffering with a divine purpose. Give her joy. Amen.