The communications/worship team at our church, Cumberland Community Church, produced this video of me telling the story of Anne. I’m thankful for their amazing editing work, and I pray the story is an encouragement and blessing :)
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.
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!
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!
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 ;)
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.
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.
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…
Thank you, Sarah Figaretti, who played with Anne so I might have the time to write this post!
Some of Anne’s more recent adventures…
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.
“What doesn’t tear you apart will make you stronger.” I think I’ve read something like that once…
There’s nothing quite so sublime as to share suffering with another. Eric is the only person this side of heaven who understands the pain of the last 5+years. It is a shared suffering.
There was a time that the pain of Anne’s brain injury was so intense that it could not be shared but only endured. But now, as time and experience have numbed the sharp pain of loss, we have regained the capacity to carry one another’s burdens. This sharing of burdens is a door into deeper “oneness.” For Eric is the only one who knows the depth of loss and indescribable joy.
If shared suffering is our glue, then God is our rock. We stand on his sovereignty. We trust that all that led us to this present – the accident, the suffering, Anne’s recovery, and her new life – are all part of God’s perfect plan, not just for Anne, but for our whole family.
Somehow, we believe the accident saved us from ourselves – that God is using Anne’s brain injury and recovery to change the course of our lives for the better – even Anne’s life! For as hard as it is for her to live with a brain injury, for all the ridicule that she receives from her peers or the frustration she endures at not being able to control her own body, we trust that she is closer to Jesus because of it. And so are we – Eric, me, Canon and Kate – we are closer to Jesus. And we are grateful.
Years from now when Canon and Kate are gone, Eric and I will still have Anne. Sweet Anne. She is our glue. But we stand on our rock. Thank you Jesus.
The End of Summer
It’s hard to believe Anne goes back to school tomorrow. Part of me is sad that I won’t have as much time with her. But Anne thrives in the school setting. She’s excited, and I’m happy for her :)
Anne had a fantastic week at Camp TBI… For one week, she gets to be a regular kid going to camp. What a gift!!
A Daughter’s love and A Daddy’s heart
We dropped Anne off at overnight camp yesterday. It’s an amazing camp for kids with TBI. They provide a one-to-one counselor to camper ratio so that kids with disabilities can experience the independence and fun of a typical camp. Anne loves it.
As much as we cherish a break from caring for her, we miss her person while she’s gone. Kate struggled to go to sleep last night without her sister, “She talks me to sleep, Momma. I miss Anne.” So we send Anne letters and pray for God’s protection.
Eric wrote Anne the most beautiful letter. Here’s an excerpt…
…God has always taken care of you and he always will. He took care of you when you were in the hospital and could not speak or move, and He is with you now. God healed you because He has giant-sized plans for you. We are so thankful that you can talk to us and bless us with your kindness, love and even your wit.
Anne, you are such a blessing to our family because you love us so unconditionally. You are quick to forgive, have a short memory for wrongs, never hold grudges, and are quick to show us love. God gave you a special joy in your heart, and it is infectious. Keep sharing that joy you feel with others….
Eric beautifully summarized what I have been feeling all summer. Even though it is physically difficult to care for Anne – and will only get harder as we both get older – to be loved by Anne is other-worldly. It’s a taste of heaven – a holy encounter. Her love is lavish and unfiltered, uninhibited and free. The sheer weight of her love is staggering. Words can’t describe it.
I thank God for every squeal of delight and unsolicited, “I love you, Momma.” This is God’s special gift for me and Eric. God supplies our every need in this difficult but joy-filled journey. Thank you, Jesus, for our little Anne :)
Summer fun and Summer challenges
This morning marks the first time ever (for our “new Anne”) that she has gotten out of her bed all by herself! She was bored and impatient waiting for me to come up to get her – so she got out of bed, scooted herself over to her bookshelf and started to play. This is what I found when I came upstairs this morning!
I was THRILLED! This mess represents desire, determination, motor planning, independent thinking, and courage with a bit of mischievousness. These are new qualities that we are seeing in Anne this summer. She seems to be restless – like her brain is craving new challenges and stimuli. This is a good sign of growth and progress – but it is also challenging for the whole family! We feel like we’re cleaning up after Anne ALL. THE. TIME.
Fifteen minutes later, Anne’s room looked like this:
I’m happy to clean up after Anne if it means she’s making progress… But she does keep us busy!
Next week, Anne begins three weeks of intensive TheraSuit therapy. This could not come at a better time as she is ready to be challenged! If you think of us, please pray for energy for both me and Anne as we tackle the taxing schedule of intensive therapy. Thank you for your support and prayers and for sharing in the joy of Anne’s long-term recovery!