The Kristen Chronicles: The Key

How often do we want a quick fix, miracle cure, or the key to the treasure? We want to fix our relationships, we want to get well quick, and we want 3 steps to a happy life. Bam! Done. Onto the next thing.

But what if it’s a quick fix for your son’s reading delay? Or a miracle cure for your beloved’s cancer. Or, as it was in my case, the key to reversing my daughter’s developmental delay. No bam, done, onto the next thing. No — these are the things that stop us in our tracks.

The first year Kristen was in therapy at Easter Seals, we spent all morning at the center. We drove home for lunch, nap, then I’d have my own “therapy” session with her in the afternoon. Intentional play with Kristen was top priority. I was happy if she had fun, but it wasn’t fun for me. It was stressful. I felt driven to catch her up with where she should be developmentally. I thought if I could only double up the therapy, she would catch up.

I knew about child development. I was a teacher. I had taught children to read. Shouldn’t I be able to teach my own child to recognize a square, a triangle, or the color blue? If my determination could come close to matching her reality, she would surely excel. As it turned out, though, my determination was no match for reality. The developmental markers came and went, leaving my child behind.

My spirits plummeted. I desperately needed God’s comfort. Tuberous sclerosis was taking Kristen, and our family, on a course into the unknown and unwanted realm of mental retardation. I didn’t want to face it.

But just when I was at my lowest, God reached out to me. As I was flipping aimlessly through my Bible, a passage grabbed my attention:

A man of sorrows, and acquainted with grief

Surely our griefs He Himself bore, 

And our sorrows He carried.

Isaiah 53:3,4

Since my heart was so heavy, the word grief stood out. Acquainted with grief? Who?

I scanned back in the passage. Jesus. Jesus was acquainted with grief. This was a foreshadowing of what He would go through when He gave His life for our salvation on the cross.

I stared at the verse. Jesus was a man of sorrows, like I was a woman of sorrows. He was acquainted with grief, like I was acquainted with grief. He carried my grief and sorrow.

Jesus, you really know how I feel?

I had so much knowledge about Jesus, the Bible, even verses I knew by heart, yet I was amazed that Jesus Christ himself would know exactly how I was feeling because He had felt pain Himself.

I felt like He was saying, “I know exactly what you’re feeling.”

My prayers changed. When I prayed, it was easy to imagine Jesus waiting for me, arms outstretched. I poured my heart out to Him, knowing that He knew my pain and would provide comfort and hope. He was no longer a distant, remote Savior. He was one who knew sorrow and how important it was to press through the pain towards joy. It was a turning point for me. My stress began to fall away, replaced by hope.

I saw that God could, and would, do something good with Kristen’s tuberous sclerosis. If not now, then someday.

20 Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, 21 to Him be the glory in the church and in Christ Jesus to all generations [n]forever and ever. Amen.

Ephesians 3:20,21 

The Kristen Chronicles:Autism

Today I’m getting away from the chronological nature of my stories to celebrate a newly published book. I’ve downloaded it on my Kindle and I can’t wait to dive in.

In a Different Key: The Story of Autism, by John Donvan and Caren Zucker.

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I’m excited that a highly-rated, well-publicized book centers around a topic many of us are struggling to understand and live with.

I haven’t written much about autism and how it’s changed our family. When Kristen was diagnosed with tuberous sclerosis at 6 months of age, we were told about tumors, mental retardation, seizures and other daunting symptoms. But not autism. Never autism. I guess that’s not surprising — not a lot was known about autism in the eighties.

Yet her behavior has been the most significant struggle for her, and for us. As we studied tuberous sclerosis, we found that behavioral issues were something that many kids with TS had in common: obsessive compulsive tendencies, screaming, tantrums, perseveration, etc. We, like others, blamed the behavior we saw on tuberous sclerosis. Somehow this didn’t feel right, but it was all we knew.

Then came our liberation.  IMG_4419

When Kristen was 22 she met with a psychiatrist who gave her an official diagnosis of autism.

Rick and I were flummoxed. For years, we’d been told by doctors that Kristen had tendencies toward autism, but she didn’t have the required number of characteristics. But now, this doctor didn’t waiver: she had autism, no question about it.

Why had she not fit the autism checklist before, and now she did? The short answer: because now we understand that autism is complex and doesn’t fit neatly on a checklist.

Much like our daughter. Strengths and weaknesses that defy easy explanation.

Autism. The more we learned about this vast subject, the more this word made sense of behaviors that had annoyed us, perplexed us, delighted us, and guilted us. Now it freed us.

There’s power in knowledge.

Once we could attach a valid cause for the behaviors, Kristen wasn’t simply a grumpy girl who was screaming that her ears hurt. She was a person with autism who had hypersensitivity issues. For the grumpy girl, we were irritated parents. For the person with autism, we’re compassionate and helpful to shield her hearing when necessary.

When you have the right research terms, you know where to go for help. A few years ago, we had an amazing behavioral therapist who taught us how to recognize patterns of behavior and how to prevent triggers for tantrums. She taught us how to help Kristen de-escalate from a meltdown. Nothing is foolproof, but life is much better after her intervention.

There’s a wealth of forgiveness knowing you, as a parent, didn’t cause the behaviors that aren’t socially acceptable, though you feel that way when your child is throwing a 2-year old tantrum in her 30-year old body in the middle of Target. In the midst of calming her down, ignoring the dirty looks, and walking her out of the now-quiet store, it’s nice to be able to breathe deeply and tell yourself, “It’s ok, it’s just autism.”

It’s even nicer to think people might know what autism is and understand she’s not a monster, she’s just having a hard time processing. Hence my thankfulness for celebrated new books on autism.

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The Kristen Chronicles: The Ladies of the Lobby

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            One bright morning I packed my newborn Katy and 19 month-old Kristen into my little white Pinto and nervously made the 18-mile trip across Dallas to the Easter Seals Society. There we would find therapy and friendship. I had signed up for one; the other was a wonderful surprise.

 

On our tour a month earlier, the staff had told me I’d meet lots of other moms in the lobby. It was a lively, fun place. But when I arrived, the lobby was enormous and empty.

 

This is not my idea of fun, I thought as I got baby Katy situated next to me.

 

Then, as if released by floodgates, the lobby crowded with women, kids, overflowing bags and chaos. “Oh, hey! Are you new? What a cute baby!”

 

And with those words, my new life began.

 

Within minutes, women of all shapes and sizes were knitting, chasing toddlers, feeding babies, even sorting socks. Hysterical stories, shopping tips, and family updates passed back and forth between them. These women had lived together day in, day out, for months, even years. They were family.

 

Yet they were so different. They were from every level of society, education, ethnicity, family background, marital status, religion, parenting style — you name it.

 

But they had one thing in common: they were all special needs moms.

 

And I was one of their group now: The Ladies of the Lobby.

 

It was a bond that made us sisters. It said, “I get you.”

 

That kinship made me feel comfortable enough, over the coming weeks, months, and years, to lay down my burdens, bit by bit, in the same way these women did with me. We all had burdens that we closely guarded and shared with few. We knew all too well the wounds that came from sharing with those who trivialized our suffering, or worse, made our blessings their melodrama. But because we had walked in similar shoes, sharing within our group felt safe.

 

Too soon, our children graduated from this Shangri-La. Most of our kids continued their therapies and education in the public school system within our suburban cities. We lost track of each other. That wonderful group was never replaced.

 

Many wounds healed those short years at Easter Seals. What I learned was this:

 

 

When you allow someone to see your pain,

you are giving them the opportunity

to reveal their pain.

 

When we allow people to reveal their troubles, we can be there for them.

II Corinthians 1:3,4:  “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

 

I’ve seen this lived out in the group I’m part of now. Though it’s not a group for special needs parents, it’s a small group from our church that Rick and I have grown to love. In some ways, we’re still forging bonds of trust. In other respects, the trust is firmly in place.

 

This kind of close, authentic relationship is worth seeking out. God never intended us to live solitary lives. Instead, He intended for us to be in fellowship with each other, to bear each others’ burdens (Galatians 6:2), to laugh and cry together, to pick each other up when we fall (Ecclesiastes 4:9-12). Many churches have groups like this, with names such as “community group”, “small group”, “home group”, or “life group”.

 

I encourage you to find a group that you can be a part of, a group that will “get you”. You might have to try several before settling on one that feels just right. And even if you are told, “we’re full”, keep trying until you find one you think will work. It’s worth it.

 

All these years later, I’m so glad for the Ladies of the Lobby. They taught me the value of belonging to a group and the benefit of sharing burdens. I never want to live without a close-knit community again.

 

 

 

 

The Kristen Chronicles:Turning from Why

 

I never would’ve thought a quick trip for milk would change me forever.

It all began with a woman and her two daughters, standing beside me in the checkout line. The girls’ clothes were soiled, hair messy, and faces dirty. The mother, on the other hand, was neat and clean. Though it seemed she didn’t care how they looked, she had little patience for how they acted at the checkout stand.

Watching her out of the corner of my eye, I thought, Why is she entitled to healthy children? She couldn’t care less about her kids. And here it’s killing me that my child isn’t healthy.

When I got home I told Rick about the mom.”I just don’t get it. A woman like that doesn’t even care. Why us? We’re good people.”

Rick said, “Instead of saying ‘Why us’, maybe we should say, ‘Why not us’.”

My response was a surly, “What are you talking about?”

“Do you think you deserve a better life than anybody else?”

I just looked at my husband.  Words formed in my brain — ugly words about how that woman didn’t deserve those girls — but nothing came out of my mouth. Rick was right.

There’s very little in this life that we deserve, either good or bad.  Our precious daughter was a wonderful blessing that we’d never live up to. But the disease she had was a burden, and we didn’t do anything to bring it on. “Deserve” had nothing to do with either the blessing or the curse.

When I think about the various burdens I have to bear, whether it’s a child with tuberous sclerosis, an ailing parent, a devastating tornado, or simply never-ending laundry, I can’t ask “Why me” without also asking “Why NOT me?”

Why would I be exempt from the burdens of this life when they are just as much a part of the blessings of life, also.

I’m not. You’re not. No one is.

These days, when I get down and start asking why, I try to remember to add that one little word — not — and that brings my feet back to solid ground.

Why NOT me?

 

New Year, New Reading Goal!

I love to read. If only I could lose myself in a book all day, every day! Paradise! (…ok, maybe not literally, but you get it…)

Because there are only so many hours in the day (24 but not — you know), I do two things: listen to books as I do the daily drudgeries (i.e., laundry) through audible.com (no kickback here, folks —  I just knew you’d ask), and second, I go to  Goodreads.com to get ideas for my next read (again, no $$ for praise — I just love this site).

On Goodreads, I can set a goal for how many books I want to read in a year. Now, when I was an elementary librarian, my goal was absurdly high because I included picture books. Hey –don’t judge me. It was my job to read quality picture books to children. And I loved it.

Because I’m not a school librarian now, my goal number on Goodreads is quite a bit lower (50 for 2016) and it won’t have a ton of picture books (though I’ll always be reading to my grandkids!). But the books I’ve chosen, I can’t wait to dig in and start. So I had to share my excitement with you!

First, though, I can’t ignore my favorites from 2015:

  • The Nightingale, by Kristin Hannah
  • A Fall of Marigolds, by Susan Meissner
  • Secrets of a Charmed Life, by Susan Meissner
  • The Girl You Left Behind, by JoJo Moyes
  • The Sound of Glass, by Karen White
  • After You, by JoJo Moyes
  • The Best Yes, by Lysa TerKeurst
  • Fervent, by Priscilla Shirer
  • Unglued, by Lysa TerKeurst
  • More Than Just a Good Bible Study Girl, by Lysa TerKeurst
  • Water from My Heart, by Charles Martin

Here are the books I’m looking forward to reading in 2016:

  • For the Love, by Jen Hatmaker (currently listening to this; SO GOOD!!!)
  • Made to Crave, by Lysa TerKeurst
  • Restless, by Jenny Allen
  • Savor, by Shauna Niequist
  • Audacious, by Beth Moore
  • The Gifting Trilogy, by Katie Ganshert
  • Love the Home You Have, by Melissa Michaels
  • On Writing Well, by William Zinsser (re-reading this!)
  • Bird by Bird: Some Instructions on Writing and Life, by Anne Lamott
  • The Good Lord Bird, by James McBride
  • It’s Not What You Think: Why Christianity is About So Much More Than Going to Heaven When You Die, by Jefferson Bethke
  • 7 Women, by Eric Metaxas
  • I Used to be Organized, by Glynnis Whitwer
  • The Art of Losing Yourself, by Katie Ganshert

 

There will be others, of course, but these are on my radar today. I’m excited to begin! How about you? What will you be reading this year? And how do you read? Kindle? Hardcover/paperback? Audible? I’d love to hear! Post a comment about how and what you’ll be reading!

Yay for books!!!!

Teresa