The Kristen Chronicles, Part 3

Photo from Countdown to Christmas 2010

Merry Christmas! This is a wonderful and unique time of year. Hustle, bustle and stress mingles with promise, hope, and holiday greetings. There’s a sweet undercurrent of anticipation.

It could be due to the bright lights or gift giving. But to me, it’s because we’re celebrating the birth of Jesus. His birth and the life He gave so that I could live, make all the tinsel and glitter pale in comparison.

Kristen’s first Christmas, in 1985, I wasn’t thinking of what He’d given. I was thinking more of what had been taken from me: my dreams of having a child with normal life expectancy, normal intelligence, normal routines, normal medical needs.

That Christmas, I had lots of hard questions for God.

Starting with, Why do we have to have Christmas in the hospital?

It was supposed to be a routine visit to adjust her seizure medications.The last thing I expected to do was be admitted into the hospital. But her neurologist said they wanted to observe her around the clock.

In the hospital. In December.

As I filled out the admission forms with shaking fingers, realizing my husband didn’t even know, random thoughts raced inside my head: This isn’t a big deal! Come on, this is Texas Scottish Rite! For Pete’s Sake, it’s the happiest place on earth! What is up with you? Don’t you dare cry!

And for what it’s worth, I didn’t cry. Not until we were in the ward,  next to our silver metal crib, alongside another silver metal crib, across the white tiled room from three other silver metal cribs. I gathered my sweet girl from her stroller and sat. Tears coursed silently down my face.

When I heard sniffles from the next metal crib over, I was surprised to see another mother wiping her eyes. We made friends over a tissue box and shared misery.

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My mother taught me, When life gives you lemons, make lemonade. This is our Christmas lemonade.

But what started out as misery to me was great fun to Kristen. Over the last few months, her seizures had been controlled, so her smile was perpetual. However, the medication was a form of steroid, and not only made her huge, but it was a temporary fix. It provided a foundation of seizure control to build upon; that’s why we were inpatients now, to see which medications would replace it. As long as she was happy and seizure-free, I would be happy.

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It was so hard for Rick to go to work day in, day out, knowing Kristen was in the hospital. Her smile to greet him at the end of the day was just what he needed.

It broke my heart to be anywhere but home at Christmas, but Kristen was charming everyone with her smile and laugh. And she was the only baby who would actually wear reindeer antlers.

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There was one thing that continued to plague me, and that was my body. My normal cycles hadn’t gotten into the swing of things since Kristen’s birth, and I’d already seen my gynecologist once, in September.  He’d given me a shot to get things moving along, and I thought everything was good.  But now I was in the same rut again, with my body shutting down.

“I’m going to see Dr. Cutrer tomorrow,” I told Rick. At his worried look, I waved my hand. “Last time he said my body’s reacting to the stress of all this. . . I guess he’ll just have to give me another shot. Oh my gosh, what’s it gonna take to just be normal?”

So the next day, leaving my mother-in-law playing with Kristen at the hospital, I drove to see Dr. Cutrer, giving my stupid body a good talking to along the way.

I knew better than to stuff all my emotions inside, but what was I going to do, vomit bitterness, anger, and resentment all over my friends and family? No way.  There’d been one time I’d really let loose, but I was alone. That evening, everything had overwhelmed me. I screamed out at God. I’d screamed, punched the air  — then ducked. I thought for sure I’d be struck down. I told myself never to do that again.

Sometimes I stuff, sometimes I lash. When I was a teenager, my dad asked me if I had gotten a part in a play. Puzzled, I said no. “Oh, I just thought you were practicing a part. I heard all that yelling and slamming doors.”

But my coping mechanism, most of the time, was to pretend I was fine. I didn’t want to face the questions I had, deep questions that shook my faith. Questions I had no answers for.

Unfortunately, all that pretending wasn’t so fine on my body. Or the check I was about to write for another one of those shots to get things going again.

“What’s going on?” Dr. Cutrer said. His smile said I had his attention and time. This was the man who had rejoiced with us when the impossible became possible in the eighth week of my pregnancy, and on the day of Kristen’s birth, he had sat at my bedside, watching the fetal monitor out of the corner of his eye while he made light conversation with us. In my naivete, I thought all good doctors did this. I realized the depth of his concern when he stood and told us we needed to do a c-section, and for Rick to scrub up, now.

So this doctor knew lots. He also knew about Kristen’s diagnosis of tuberous sclerosis. I fumed about my current situation.

“I just need to get back to normal. Or at least to know what the problem is,” I said as I laid back on the table for the exam to begin.

In half a minute, Dr. Cutrer laughed.  “Well, here’s the ‘problem’.  You’re pregnant!”

I felt like my body turned to ice. “You’re kidding, right?”

He wasn’t kidding.

I couldn’t breathe.

For the next few hours, all I could feel or think was, Why? Why? Why?

There were a million reasons why this was all wrong.

  • genetically — what about that? what if we have tuberous sclerosis? oh my gosh, we haven’t been tested yet! we weren’t going to have other kids until we’d been tested!
  • how — we were so careful, how in the world . . .?
  • financially — one band director’s income, two kids, are you kidding me? and all those hospital bills we still were paying off?
  • what if — Kristen was in the hospital a lot? what was I supposed to do with another child?
  • how — could I ever love another like I loved her?
  • what if — this baby had tuberous sclerosis?

Why, Lord?

Why do You always do things I don’t want to do.

That day, I wondered. I questioned.

But it didn’t take long to find out the answers. The big answers are in the pictures below: God knew what we needed, when we needed it. He knew it then, He knows it now. I could only see the little picture of my life, but He saw the forever picture. He wove all the fibers together to make a beautiful tapestry.

The photos below aren’t God’s complete picture of our family. My story isn’t complete, either.

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We came home December 20,1985. Christmas at home!

 

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Kristen, her little sister Katy, & Katy’s husband Austin

God is good, all the time. He writes our stories.

He is the best Author.

More to come Wednesday, January 5, 2016. The Kristen Chronicles, Part 4.

 

 

 

 

The Kristen Chronicles, Part 2

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(August, 1985) After spending a week at Children’s Medical Center to find the reason for Kristen’s infantile spasms, it took one crucial day — one moment, really — to completely upend our lives. After those words, tuberous sclerosis, everything changed.

Suddenly we had a new vocabulary. Infantile spasms. Angiofibroma. Genetic counseling. CT scans. Pediatric neurologist. Chronic. Incurable.

My head was spinning. I was dazed. Just a week before, we’d been young, carefree, concerned but optimistic parents. So positive that everything would turn out okay. Because it always had been. But now . . .

Now, I felt dried up. Like every bit of joy had seeped out of my body.

How were we supposed to deal with this? Our sweet angel had a disease we could barely pronounce, let alone understand. When the doctor told us the long list of things that were characteristic of tuberous sclerosis, there were only two things I heard: “We really can’t predict how these will show up in Kristen. We’ll just have to wait and see.”

I didn’t want to hear that. I wanted guarantees.

But there was something else I couldn’t get past, the thing that dwarfed all other symptoms of this dreadful disease — “Most children with tuberous sclerosis are developmentally delayed to some degree.”

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Developmentally delayed? My child? My Kristen?

No.

No. No. No.

See, I had made a deal with God.

And when Kristen was born, I thought God agreed with me — I’d be lousy as a special needs mom. I didn’t have what it t00k.

I’d made a deal with God in the second trimester of my pregnancy.  Everything was great, until dream after dream revolved around a baby with special needs.  It upset me so much I became obsessed with finding what caused disabilities in utero. I would do whatever I could to have a healthy baby. But after all my research, I felt helpless — everything I could do, I’d been doing all along.

Finally, I had to face it: I wasn’t in control. I got on my knees and prayed. I pleaded with God not to give me a child with special needs. I listed all the ways I didn’t measure up.  No way would I qualify for that job. I wouldn’t be able to handle it.

After praying, I felt a sense of peace. I told Rick, “I don’t think God will give me what I can’t handle.”

When Kristen was born whole and seemingly healthy, my rejoicing went deeper than the average person’s. My dreams hadn’t become my reality. God hadn’t given me a situation I couldn’t handle.

But lo and behold, here I was, six months later. My dreams had become my reality. And I couldn’t handle it.

And here’s where I want to step out of the story and address something:

“God won’t give you more than what you can handle.”

People say this a lot. And there’s a certain amount of comfort in those words. But I don’t believe them. Here’s why.

I think those words put all the focus on us, when the focus should be on God.

In my situation, I was more prepared to be a teacher than a special needs mom.  I had extensive training for my profession. But for my lifetime assignment, I had no training, no knowledge of special services, no huge doses of patience or mercy — all I brought to the table was mommy-love. 

God was the one who came to the table armed with all the special stuff: goodness, mercy, extra-large doses of love and patience and kindness, wisdom, strength . . . all the things He knew I’d need in the coming days to parent this child.

And I’m still going to Him to fill my cup, because it needs filling all the time. Life as a special needs mom is rough, beautiful, hard, tender, and always surprising.

Like my next surprise: being mad at God.

 

 

The Kristen Chronicles, Part 3, posts on Wednesday, December 23, 2015

The Kristen Chronicles, pt 1

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For the next few Wednesdays, I’d like to share a story very dear to my heart: the story of my sweet Kristen.

Actually, it’s more the story of how the gift of Kristen changed my life in every conceivable way. My daughter has brought reality to Romans 8:28, “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” This has been a journey I never imagined or wanted, but I’m so grateful for it. I would never choose another kind of life over the one God has graciously given.

This journey began when I was pregnant with Kristen.  Early in the pregnancy, we were told there were no signs of life and to prepare for a miscarriage.  We were devastated.  She was our first.  The beautiful long-stemmed rose of celebration Rick had given me when we learned we were having a baby was still vibrant and blooming in its vase, a stinging reminder of how quickly things can change.

And then the phone rang. Dr. Cutrer’s voice had a slight tremor. “I think I’ve seen this maybe one other time in years of practice — your blood test showed that you’re still pregnant. Praise God.”

My blood showed what my body and the sonogram hadn’t — there was hope.

After nine nervous months, I gave birth to a healthy baby girl.

Praise God! She had all her toes, fingers, limbs . . . oh, the relief!

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Rick and I were young, proud, attentive, doting, educated parents. Was there any more beautiful baby than our little angel? Of course not. Was there any more precious gift from God than this? No.  And to prove it, I measured her progress in photos and jotted notes in her book. I read all I could about current baby-raising philosophy and read picture books to her. I made sure this little one was doing everything on time: smiling at two months, check.  Holding her head up at three months, check.  Turning over at four months, check.  Holding objects, check. Sitting up at six months, check.

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And that’s where this story slows down. Way down.

When I was dutifully/dotingly helping Kristen sit up on her own one evening, suddenly she took a nosedive. Then she was up again.

“Woopsy!” That was weird, I thought.

Then, nosedive again. Up again.

“Oh, honey — what’s goin’ on?” Taking her little hand, I noticed she was trembling. Her blue eyes were filled with tears.

But as soon as I saw them, she was taking a dive again — and up again.

“Oh my gosh — baby!” I wrapped her in my arms, but I could feel her body convulse forward every few seconds.  After about five minutes, the whole thing was over, and she began fussing.  Her fussing had been constant over the past month, making me feel like I was doing something wrong.  What that was, I had no idea.  Spoiling her maybe? I didn’t know. But fuss, fuss, fuss. Everywhere, anytime. The only time she didn’t fuss was when she was asleep.  So when I didn’t hear the fussing a few minutes later, I took a peek at the lolling head on my shoulder and was surprised that at 6:30 pm, she was asleep.  Weird.

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Two weeks later, after a failed doctor’s visit and days filled with four “spells” a day, we were with Rick’s sister and her husband, a pediatrician, for the weekend. We described these spells: predictable, 9.5 seconds apart, same down/up, hands out movement w trembling, lasting 5 minutes, goes to sleep afterward.  After hearing that, then witnessing one of Kristen’s spells, Scott thought they were infantile spasms, and referred us to a neurologist friend at Children’s Medical Center.

And I want to just take a moment to say this: my eyes fill with tears every time I think about the role our family has played in this journey. God has used every member of our family to encourage us at some time along the way. And at this particular time, having Scott at this place and time was so … God.

Our own pediatrician, two weeks earlier, had blown off the same description: “I think it’s just her way of going to sleep.” Over the years I’ve had to work through a mountain of anger with that doctor’s name on it, and it threatens to roil up within me now as I remember the quick way we were dismissed. But it was my first lesson in advocacy (which I failed). Parents, spouses, family members are the ones who are there, day in, day out, knowing the history and the norm. If we don’t speak out and say, “But I don’t think this is right,” who will? Advocacy doesn’t mean rudeness (the Southern girl speaks!); advocacy means speaking on behalf of those who can’t. If I could do it all over again, I’d return to the doctor and say, “Could you just check her again? I’m not comfortable with what’s going on.”

In the coming days, I would continue to learn how to speak on behalf of my child after checking in at Children’s Medical Center in Dallas. There, we would find the infantile spasms were not only a type of seizure, but a sign of something much more devastating to our family’s future.

 

 

Part 2 of The Kristen Chronicles, Wednesday, 12/16/15

 

 

Tender Mercy — YES!

I’m a why person. Always have been, ever shall be.

So when I’m reading and the word “because” comes into view, I straighten up, my brain comes to full alert, and I pick up my pen.

So here’s what I was reading this morning.

“And you, my child, will be called a prophet of the Most High; for you will go on before the Lord to prepare the way for Him, to give His people the knowledge of salvation through the forgiveness of their sins, because of the tender mercy of our God, by which the rising sun will come to us from heaven to shine on those living in darkness and in the shadow of death, to guide our feet into the path of peace.”  Luke 1:76-79

These were the words of a father, Zechariah, for his newly born son, John, in a spine-tingling prophecy of John’s life purpose.

Can you imagine any of your friends picking up their newborn and proclaiming that baby’s huge path on this earth?

My first thought: “Crazy!” And some of Zechariah’s friends might have said that, too. But this man had been told by an angel that God had a special plan for his son and no matter how outlandish it seemed, it would happen. In fact, Zechariah doubted and suffered for it (read that story in the Bible in Luke 1:-23; 57-80).

So back to those verses — did you see the “because” I was excited about?

“And you, my child, will be called a prophet of the Most High; for you will go on before the Lord to prepare the way for Him, to give His people the knowledge of salvation through the forgiveness of their sins, because of the tender mercy of our God, by which the rising sun will come to us from heaven to shine on those living in darkness and in the shadow of death, to guide our feet into the path of peace.”  Luke 1:76-79

So here’s how my brain works:

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And those words — “tender mercy” — are the because this why girl needed.

How expressive those two words are! What more do we need?

In this time of seeking hope in all the wrong places, it’s right in front of our faces. It’s in the tender mercy of our God. And by His tender mercy, He makes the sun rise and shine on those living in darkness. His light shines on those living in the shadow of death.  Why? To guide us to the path of peace.

To guide us to Jesus.

Jesus gives peace. For-real peace, not temporary serenity that I have to work hard for.

With Jesus, all that’s required is belief. He did the hard stuff.

Why would I turn this down? Living in the light instead of living in dark? Um, yes.

Peace instead of turmoil? Yes!

True, down-deep joy traded for despair? Yes!

Yes! By all means, yes!

Tender mercy wins, every time.

 

When Plans Change

 

If you’re like me, you’re full of plans.

  • for your day
  • for your groceries
  • for your meals
  • for your kids
  • for your life

But if you’re like me, my plans often don’t play out. In fact, days I’m muttering, “The best-laid plans of mice and men…” to soothe my ambitious soul.

But on harder days, I’m not muttering. I’m frustrated. I’m resentful. And some days I’m afraid.

And I’m thinking you’re just like me on those days.

So when a monkey wrench crashes into our plans, how do we deal with it?

That was my question years ago. My life turned upside down with my infant daughter’s diagnosis.  The one that took our lives from normal to abnormal.  From golden to rotten.

Or so it seemed.

I was so raw, so hurt . . . and numb. Just getting through the day, giving her injections that cost a fortune we didn’t have . . . that was our new normal.

But I couldn’t stand the pain. Numbness was unacceptable. I had to find happiness and joy again.

Proverbs 15:13 says,”A joyful heart makes a cheerful face, but when the heart is sad, the spirit is broken.”

I had to turn my river.

But saying it and doing it are two different things, right?

When the heart is sad, the spirit is broken.  Broken spirits take awhile to mend. Mine took awhile, too.

I had a family that was incredibly supportive, and friends who reached out, although I was prideful and acted like I needed nothing — “I’m good.” I wasn’t!

But I had to reason things out. I had a lot of questions for God that needed answers. I went to the Bible to get those answers, my disillusionment not set but getting there fast.  I was mainly hurt: why had God afflicted our sweet baby? We’d served Him. We’d been good people. Why us?

It wasn’t long before I got my answer.

One thing I know — when you go looking for answers from God, He will answer.