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.'”

Ha!

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.

You’re beautiful.

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:

• Physically
  • 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.
• Cognitively
  • 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!
• Emotionally
  • 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.

Thanks for caring enough about Anne to track her progress over these last 8 years! Your prayers and support mean the world to our family. Thank you! -kathryn

 

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 ;)

Anne’s turned mean. And it’s breaking my heart.

My rational mind knows that she’s almost 13 with rushing hormones. She’s angry that she can’t walk. She’s angry that she can’t get herself water when she’s thirsty. She’s just angry. There’s no parenting manual for shepherding a brain-injured child through the tumultuous teen years! Anne’s new school schedule is making it worse. Again, I understand. Change isn’t easy. But every time Anne spews angry words my heart twists.

Why? Why am I so broken by Anne’s anger? 

Because I’ve told myself that God is redeeming Anne’s brain injury by shining his character through her life. Her simple child-like faith, her kindness, her joy – they all point to Jesus. So when her beautiful spirit is spoiled by anger, my heart fills with doubt.

Is God still good? Is he still working through Anne? Will he continue to use our family to reveal his redemptive ways? Is he still faithful?

Oh, how faith crumbles when we look to temporary circumstances instead of his eternal Word. I read Psalm 84 this morning and was struck by the imagery of God’s goodness pouring down on his people. I wept. And prayed for eyes to see God’s goodness pour down.

Psalm 27:13-14
I remain confident of this:
I will see the goodness of the Lord
in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord.