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 :)
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!
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!
This fall has been hard. It’s just grief. We’re old friends.
I think I’ve come through the other side – at least for this season. An old counselor described grief as a tunnel – it’s dark in there – but it will end. This fall’s grief tunnel was relatively short with brief holes of light – but I’m through, and I’m grateful.
Author and special needs mom, Sandra Peoples, describes three seasons of grief for a special needs parent. The first is immediately after diagnosis; the second is around puberty, and the third is after the child ages out of school – around 22.
Anne is 14 and at the end of puberty. She’s developed into a beautiful young lady, yet she still loves Daniel Tiger’s neighborhood and Candyland. She continues to read at a 1st-grade level, and her walking is increasingly laborious causing her to be confined mostly to her wheelchair. I don’t think you realize you have expectations until you arrive and life is – well – different than you expected.
I thought Anne might be more grown up. walking a bit more – maybe even reading a bit more. I expected her interests to be more age-appropriate. Actually, I don’t know what I expected, but I know those expectations have not been met.
Instead, I have a delightful daughter who loves boundlessly, connects effortlessly, and brings me a tremendous amount of joy. She’s exactly who God willed her to be. As she snuggles in my lap watching another episode of Daniel Tiger, I savor her presence. As my other children grow up and out – Anne will always be close. She’s mine, and I’m grateful :)
Note: I wrote this in June of 2018 – but forgot to post it…
Yesterday was the 18th of 20 days of Anne’s intensive therapy. She’s doing amazing!
When I picked her up, Anne’s therapist greeted me with the usual, “Anne worked so hard today. She walked longer and further than the other day,” and other good newsy items. But then she said, “But… Anne got angry and screamed at us. To distract her, I asked Anne if she ever screamed at you. She said, ‘I never scream at my mom. EVER.'”
As her therapist shared this story, we both laughed as I described how Anne unleashes her anger on me via screams, bites, hits. Then her therapist made a wise observation – ALL children save the worst for their moms. No matter the diagnosis or lack there-of – it’s the privilege of moms to love their children at their worst.
But it’s also the privilege of moms to enter into the deepest part of their children’s lives, linger with a hug, wipe away a tear, stay up late with when they’re teens, watch them fail, and coach them into adulthood. In other words, we know our kids best – ALL of who they are – the best and the worst – and we love them anyway :)
Anne’s brain injury leaves with her little ability to filter her thoughts and emotions. She’s slowly improving in filtering around others, but when she is with me, I get ALL of her. ALL of her needs, ALL of her emotions, ALL of her love. It’s a little overwhelming. Anne’s anger is IN-TENSE. But on the other hand, her love is intense too. My day is filled with spontaneous, unsolicited declarations of love.
I love my time with you, mom.
You make me feel comfy, mom.
I love you, mom.
As much as I love her, I swear she loves me more. Not many moms can say that. I’m blessed :)
In John Piper’s devotional this morning, he argued that if we long for heaven then God “will not be ashamed to be called your God.”
I long for heaven – but not as much as Anne. Anne’s simple child-like faith challenges me. This morning on our long drive to therapy she talked about her longing for heaven.
Mom, I can’t wait to go to heaven! I will be able to walk in heaven! When will God let me go? I want to go now.
Then, Steven Curtis Chapman’s song See You In A Little While came on the radio. Chapman wrote this song about his daughter who died tragically and finding comfort in the fact that she is in heaven with the Father. Anne asked to listen to this song over and over. After every line, she would ask me to stop the song to ask me questions…
The song begins:
I hold your hand and watch as the sun slowly fades
Far in the distance the Father is calling your name
Anne asks: Mama, Is the Father really God? Whose name is He calling? Is the person singing this song a daddy?
The song continues
And it’s time for you to go home
Anne asks more questions: Where is home, Mama. Is that heaven? Why does God want to call her to heaven? Why doesn’t God call me to heaven? I want to go to heaven.
And on it went. So many questions. What an encouragement to me!
After this conversation, I read John Piper’s devotional – encouraging his readers to long for heaven. He writes:
When we desire this heavenly city — this dwelling place of God — more than we desire all that this world can give, God is not ashamed to be called our God. When we make much of all that he promises to be for us, he is proud to be our God. This is good news.
I love the paradox of God’s kingdom. Anne has nothing to offer God – nothing except a heart that longs to be with Him. And He is not ashamed of her!
I am currently sitting at a therapy clinic in Villa Rica, GA. Sometimes great things are done in obscure places ;)
Anne will be here every day for the next month undergoing her traditional summer session of intensive Thera-suit therapy. Everything about this therapy session is good for Anne. It stretches her in every way – physically, cognitively, emotionally, even spiritually.
Here’s a progress report on Anne:
- She’s grown to almost 5 feet and weighs 89 lbs.
- 2 years ago (before puberty), she was walking with a cane. Now at 13, she struggles to support her weight when standing. Walking more than a few steps tires her out.
- Anne still does not use her left hand, but her right arm is so strong that she can beat everyone in our family at arm wrestling (well, maybe not Eric – but she comes close!)
- In the last month, Anne has started having convulsive seizures. They have probably emerged because she has outgrown her current dosage of seizure medication. We’ve increased her medication, so hopefully, we’ll see these seizures diminish.
- Anne’s reading has improved tremendously this last year. She can track and read short sentences without assistance. She can read long stories with assistance in tracking. She reads with more emotion and fluency. She still only reads 1st/2nd-grade level readers, but her improvement is so encouraging!
- Anne’s attention has improved slightly, but she still struggles with focus, attention, and impulsivity.
- Her middle school teachers really pushed Anne so that she was able to do 5 minutes of work independently. This is a huge step for Anne!
- Anne’s hormones are irregular causing her to be emotionally volatile. Her anger outbursts are sudden and intense. This is our biggest challenge with Anne currently. It’s difficult to know how to prevent the anger outbursts, how to handle them when they happen, and what consequences to enforce after the outburst passes. It’s hard to know what Anne can control and what she can’t. I need wisdom to discipline her appropriately when her anger spills out to hurt others.
- Anne also struggles with restlessness – causing her to make mischief to get attention. Hopefully, intensive therapy will help with this!
As with any child, Anne has struggles and triumphs. I am reminded daily of my own inadequacy to care for all of my children. I desperately need God’s wisdom and direction as I work to parent, shepherd, and train my kiddos. I’m thankful for Anne’s a-typical challenges. They force me to lean more deeply into Jesus – trusting him moment by moment.
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!
I just put Anne on the bus to go to middle school. In a few hours, I’ll pick her up early and drive her an hour to therapy. She’s doing intensive therapy again. It’s so good for her.
Earlier, I dropped my oldest son at the bus which will take him to high school, and then I drove my youngest daughter to her carpool. My friend at carpool asked me, “So will Anne’s therapy end this week?” “No,” I responded, “she has therapy every day over Christmas break…except for Christmas day.” My friend just shook her head and hugged me.
At my worst moments, I feel sorry for myself. I compare our family to all the families I see on the front of their picture-perfect Christmas cards. Instagram is full of family vacation pictures. Those hurt the worst.
I’ve always dreamed of traveling together as a family. I love the idea of building life-long memories as we hike through Yellowstone, ride the waves in the ocean or eat our way through NYC. But Anne’s disabilities make those adventures impossible (not to mention the cost!)
Over Thanksgiving, I thought maybe we could have a small, indoor adventure. We found a group-on and visited the College Football Hall of Fame in the big city. It was a disaster. Anne quickly became overstimulated and grumpy. And my other kids became bored with the inactivity.
We left the museum and played frisbee in the park. Anne was happy sitting in the sun, and my other kids loved running and playing together. God showed me that we don’t have to have a grand adventure to create insta-worthy-memories. We just have to find joy in the ordinary moments of life.
Besides, every family is broken. Every family struggles. Every family has heart-ache. No family is perfect.
So I’m trying to let God redesign my dream of what creating memories as a family looks like. I haven’t quite figured it out, but I think it starts with letting go of my ideal and taking a more simple approach. Find God and his joy in each moment. Pray that my children will look back on their growing up years as special. Follow the hand of Jesus. That’s all I know right now. Maybe one day, I’ll figure it all out ;)
Yesterday, I took Anne to the Orthopedic Surgeon. “How’s she doing,” he asked. I found myself replying calmly, “Her hips are tight. Her windswept gait is exaggerated. The ligaments in her knees are less stable. And she needs an additional brace on her left leg to provide support.”
Two years ago, Anne began growing, her body began changing, and all of the physical progress she had made in therapy began dwindling away. I also started panicking. I blamed myself, took on guilt and retreated into sadness. Two years later, I now know that it was all the effects of puberty. It had nothing to do with me or Anne’s effort. I want to go back to my past self and tell that girl to calm down and stop over-reacting!
Wouldn’t it be nice to get a visit from our future selves every now and then? I would go back just a few months and tell myself not to worry so much over Anne’s “meanness.” Now I know that it was just her response to the HUGE change of starting a new school. She’s back to her old self – sometimes mean but mostly sweet.
I think if we got regular visits from our future selves, the message would consistently be to stop worrying so much and enjoy the life God has given us to live right now. Especially in the wake of such horrible tragedies – this present might be the last present we enjoy this side of heaven.
So as I rambled off Anne’s list of regressions to her orthopedic surgeon, I chose not to freak out. It’s just a phase. Puberty will end. Growth spurts will cease. There will be an opportunity to rebuild strength. …Maybe my future self just came for a visit ;)