The Lighter Side

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Some people think special needs families are always intense: either frustrated, sad, stressed, or super-sweet. Let me tell you, if my life were even 60% of any one of these things, I’d be nuts. We need humor, delivered up in big slices. Daily, please.

Special needs families see things differently. Situations we find ourselves in are a little wacky, and sometimes our humor matches.

 

Thankfully, the Lord gave our family an appreciation for the funny side of life. It really doesn’t take much to make us laugh: dry humor, sarcastic humor, jokes (even though I can’t tell a joke to save my life, I’m a great audience for others), riddles. But for us, the best kind of humor is when Kristen generates it.

 

I mean, does the term “mad arms” mean anything to you? Kristen defined it. Her tightly crossed arms mean, “This is one mad Kristen.”

But it’s really funny when you’re waiting and waiting and waiting in line somewhere, you sigh, and cross your arms. Kristen grins knowingly and says, “Why do you have mad arms, Mom?”

Heads swivel. I turn red. My arms drop to my side.

What? I’m not mad.

 

And there was the time she was about nine, and we were in the restroom at the movie theater. I was trying to help her button her jeans in the stall and accidentally bumped her. In response, she yelled, “Ow! You hit me!”

Oh. My. Gosh.

Maybe it was my imagination, but it sure seemed to get quiet in that bathroom.

I didn’t see the humor until hours later, when I told my family and they burst out laughing.

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When Kristen was a teenager, we were sitting in a Sunday morning service. She was quietly scribbling on the program.The pastor was preaching on parenting, and made a statement about parents needing to be honest with their children. Kristen looked at me with a big smile on her face.  Then she said (none too quietly), “Mommy!”

Of course, that turned some heads. I felt like saying, “I’m honest, I am!” I could feel my face getting red hot. The people nearest us laughed. This fueled Kristen, who loved the attention and laughed, too. A lot. As the pastor continued preaching, I leaned in close to her and whispered, “It’s time to be quiet, ok?”

Instantly, Kristen reared back, covering her nose, her face a mask of revulsion. “Uuuuugh, your breath smells like poo poo!” she said in the quiet sanctuary.

Floor. Please swallow me.

There are those magical phrases that don’t mean what they say:

  • a lot is really a little
  • a little is really a lot
  • “a long time ago” is scary
  • “I didn’t sing” really means “I want to sing”… the song on the radio, so we do. Together. Having no idea what the words are, but we fake it.

…and laugh when we get it wrong. Which is every other word, but that’s not the point. The point is, we have fun. Because life as a special needs family is full of fun moments.

 

 

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The Kristen Chronicles:Trust

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Brain Surgery, Part 3 of 3

Brain surgery isn’t the worst thing that can happen to your child. But it was the worst thing that had happened to my child.

 

I had tried to deal with our reality in a variety of ways: denial, pleading, logic, crying, stoicism. But when everything was said and done, it was time to face reality. It was going to happen, whether or not I faced it. I wanted to summon whatever courage I could muster and be brave.

 

However, there was very little of my own courage to summon forth. Every time the words brain surgery flitted through my mind, my knees buckled. My hands shook, my mouth felt like cotton, my stomach churned. However, I looked calm. People mislabeled me as “strong.” I wasn’t — I was holding all my emotions inside, trying to get through each day and carry on a somewhat routine schedule as a mom of three girls who badly needed normal.

 

Naptime was my fall-apart time. I could pour my heart out to the Lord unhindered. And that time was my saving grace. During that time I was free to think, pray, read and talk to God without worry — my tears could flow.

 

During one of those fall-apart private times, I remembered the words from years earlier that our pastor had told us about contentment. When I’d heard it, it was incomprehensible to me. But now I was staring that message in the face: could I be truly happy if I lost everything, but had Jesus? I felt God was pressing me to answer this, and the image of Abraham sacrificing Isaac played in and out of my mind as I was considering my answer. I pictured Jesus as He labored in prayer before facing the cross.

 

Luke 22:39-46

39 Jesus went out as usual to the Mount of Olives, and his disciples followed him.40 On reaching the place, he said to them, “Pray that you will not fall into temptation.” 41 He withdrew about a stone’s throw beyond them, knelt down and prayed, 42 “Father, if you are willing, take this cup from me; yet not my will, but yours be done.” 43 An angel from heaven appeared to him and strengthened him.44 And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.[c]

45 When he rose from prayer and went back to the disciples, he found them asleep, exhausted from sorrow. 46 “Why are you sleeping?” he asked them. “Get up and pray so that you will not fall into temptation.”

 

How many years had I read this same passage and never realized that Jesus didn’t have to go to the cross? It was a decision, a submission of His will. An act of obedience to His Father.

He was in anguish.

He prayed in earnest.

An angel came and strengthened Him — that’s how weak He was in His human form.

 

This Jesus — this was someone I could relate to.

This was a God I could trust.

 

So why was it so hard for me to give my daughter over to a brain surgeon who could save her life?

 

Because I wanted to think I had control.

But I didn’t. God had all the control over that operating room. And I knew I needed to give Him control over my happiness. With or without my happiness, the surgery was happening. I’d rather it be with my blessing and willing spirit. What I needed to do was give my control to God.

 

I gave God little pieces of my life: it started with the car I was driving. As I picked up my girls from school one day, their little voices chattering behind me, I whispered, “Lord, if I didn’t have this car, but I still had you, I’d be happy.”

 

It felt good to say that.

When we parked in the driveway of our too-small duplex, I turned off the ignition and sat looking at the back of that house. How often I’d begged God to be rid of this place that we’d purchased in a booming real estate market, months before the bottom had dropped out. Yet, if this house was taken away and we had nowhere to go … Suddenly that house looked pretty good.

 

But if I was going to give everything to God, it couldn’t just be the easy stuff. I took a deep breath and said, “If I didn’t have a home, but I had Jesus, I’d be content.”

 

As I helped the girls out of the car, I marveled at what I’d said. As we made our way to the back door, I realized there was more I needed to do. I made a beeline for my bed and knelt beside it. I knew it was now or maybe never.

 

One by one, I committed my family to God, acknowledging that my husband and my children were never mine to begin with, but I’d held them tightly, with a closed-fisted selfishness. I’d been fearful of trusting the One who created them. Now I was actively giving them back to the One they belonged to in the first place. The One who loved them even more than I did. The One who knew how many hairs were on each head. The One who knew how many breaths they took. The One who had big plans for them. The One who knew the moment they would arrive in this world and the moment they would leave this world.

They were not mine. They were His, to do with as He wanted.

Including my sweet Kristen.

I had to be okay if He chose to take her February 18,

during brain surgery, or any other day.

 

He did not choose to take her that day. The surgery was successful. Her recovery was so swift and smooth it surprised me.

 

But the biggest surprise for me was the deep peace I felt during her surgery. I almost expected not to see her again, because of the thorough preparation God had done within me. That’s not to say I was unemotional — when the surgical team took Kristen, Rick and I clung to each other and wept. But throughout the hours in the waiting room, and the next days in the hospital, I was filled with peace. God loved her and was fully in control.

 

He is always in control.

 

 

–Teresa

 

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The Kristen Chronicles: Surrender

Brain Surgery, Part 2 of 3

When I first heard the story of Abraham placing his son Isaac on the altar (Genesis 22:1-19), I was young and it blended together with all the other Bible stories – bigger than life, remote, far off in time.

 

When I read it as an adult, I was slightly horrified. Why would anyone put his child on an altar as a sacrifice? Then I reminded myself: this is Father Abraham. He knew everything would work out in the end, surely. He was a Bible character. They had tons more faith than the rest of us.

 

“Your daughter needs brain surgery.”

 

When these words were said to us, the image of Abraham and Isaac floated through my mind. But it was different: Abraham ceased being holy-of-holy Father Abraham and was instead just Abraham, the dad.

 

Abraham, the dad, breaking into a cold sweat at the thought of lifting his cherished only son onto an altar as a sacrifice to the God he loved. He had to be confused – was this to be the end of the son he and Sarah had prayed so long for?

 

Yet Abraham didn’t plant his feet and curse God. He didn’t question. He obeyed.

 

His story was my inspiration. When the neurosurgeon met with us, it was clear there weren’t choices to be made. Without the surgery, death was imminent. But surgery itself held the risk of death.

 

Between a rock and a hard place, as the saying goes.

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Every time I thought about Kristen’s surgery, my hands shook.

 

I wonder if Abraham’s hands shook as he placed his only son on the altar?

 

Every time I prayed, I pleaded: “Lord!” Cohesive thoughts would not form, not at first. I clung to Romans 8:26’s promise that I didn’t have to say the exact right words for God to know my heart.

 

I wonder if Abraham could pray clearly, or if he just pleaded silently, over and over?

 

Scripture doesn’t tell us Abraham’s thoughts or his emotions, but I could make a pretty good guess. He was just as emotional as the rest of us would’ve been. He wasn’t superhuman.

 

But Abraham obeyed.

He trusted God.

That’s what I know.

 

 

But I also know I don’t always like God’s outcomes.

 

I have a feeling Abraham didn’t like the outcome he saw as inevitable. He put his son on a wood altar and had raised his hand to slay him before God stopped him.

 

1“Do not lay a hand on the boy,” he said. “Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son.”

 

This had been a test for Abraham. If God was going to descend millions from this one man, he should be up to the job.

 

I don’t think Kristen’s brain surgery was the same kind of test for us that surrendering Isaac was for Abraham. Yet this story was one of two from the pages of Scripture that inspired me to totally give Kristen up to the Lord before her surgery. The other was the story of Christ praying at the Garden of Gethsemane (Matthew 26:36-44;Mark 14:32-36;Luke 22:39-44).

 

Both times, God asked the unimaginable. In Abraham’s story, we can feel his torment as he answers Isaac’s questions. In the Garden, we get to actually read the words of Christ’s prayer and witness his agony. Yet in both situations, bleak as the outcome looked to be, they surrendered their own will, to instead do what Father God wanted.

 

 

In both cases, where would we be if Abraham and Jesus hadn’t surrendered to Him?

 

As I dwelled on these stories in light of Kristen’s impending brain surgery, letting them sink deep into my soul, words from earlier years rose to the surface: if everything was taken away from you except Jesus, could you be truly happy?

 

If everything was taken away…or if Kristen was taken away…

 

Could I be happy?

 

Could I totally surrender her to God, no matter the outcome?

 

It was time to answer this question.10

 

 

 

The Kristen Chronicles:Not fine

Brain Surgery: Part 1 of 3

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Have you ever felt that life couldn’t get much crazier?

 

That was how I felt when I heard the words, “Kristen has a brain tumor.”

 

Kristen was about to turn seven years old. She’d had a few headaches, and she’d had a mild seizure. Even though these symptoms don’t sound significant, they were alarming to us because they were different. And “different” in a child with special needs signals a call to the doctor. A CT scan showed there was a brain tumor. Not cancer, but just as deadly. It was in a bad place and growing fast.

 

My head was spinning. Rick and I talked through logistics–surgery dates, plans for our other girls during Kristen’s hospitalization, his leave from work, etc– and to outsiders we might have looked calm and collected. But on the inside I was like a bowl of jelly, trembling with all the unknowns.

 

How could this be? She looked so healthy. Should we get a second opinion? Did they just say she had to have . . . brain surgery? Brain surgery? Oh my gosh. Brain surgery.

 

If I closed my eyes and thought about it, my hands shook. My whole body shook.

 

So I planned her birthday party instead of thinking about brain surgery. 2

 

Her 7th birthday was two weeks before her surgery. It was my saving grace. I needed to take her brain surgery in tiny sips, not a big gulp. So I put all my energy into planning the biggest party I’d ever given.

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The only thing is, we were on a strict budget (in other words, we were pretty broke).

 

But God is good. He knows our needs before we even voice them.

 

A local church rented their gym to us for a reasonable price. We invited all Kristen’s first grade class, all her close friends, and our family. And they showed up! 6

 

Everyone knew about Kristen’s upcoming surgery. Her friends, and their parents, showered her with love. People I didn’t know hugged me and Rick and told us they were praying for Kristen. They told us again and again they would do anything we needed, just let them know.

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I felt like my heart would explode. I was overwhelmed by the love and grace these people lavished on us. I almost couldn’t handle it.

Here’s what it showed me:

Friends want to walk beside you in the pain as well as the joy.

 

If it had been up to me, only a few people would have known about Kristen’s surgery — I’m uncomfortable in the spotlight unless I’m hamming it up. But word had gotten out, and news spread like wildfire. However, if people hadn’t known about her surgery, we never would have realized they cared.

God is still trying to teach me this lesson.    7

 

I’m not good about sharing my pain when I’m in the middle of it. I’d rather say, “I’m fine” than hint that I’m hurting. And I have a feeling a lot of you can relate.

 

Why is that?

 

Why is it we’d rather act like we’re fine, when the end result (i.e.,getting love and support) is beyond-words-wonderful?

  • it could be our pride (I’m raising my hand)
  • it could be we’re fearful we won’t get love and support (ok, I’m raising my hand on that one, too)
  • it could be we’re just not accustomed to letting the barriers down (yep, that one too)

 

Regardless of all these reasons, I’m looking back on my story today and trying to trust. To be more vulnerable in the moment. To remember that God is in control, and He wants us to love each other (John 13:34). Part of loving my friends means I’m going to be honest when I’m having a hard time instead of saying “I’m fine.” It’s hard to change lifelong habits, but the end result is worth it.

 

I’ll always treasure the love and support showered on us at that birthday party. But the only reason we had support is everyone knew our crisis. It wasn’t a secret. It’s my goal to be more vulnerable and real, not fake fine. I don’t want to miss the sweeter side of life because I’m too fearful.

How about you?

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I’m linking to Cisneros Cafe on Open Mic Monday

The Kristen Chronicles:Worth the Wait

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Nobody enjoys potty training. Nobody.

I marvel at the little ones who successfully leave the diaper scene at the tender age of 2. I mean, I just don’t get that. Call me lazy, but my girls were looking 3 in the face before I even thought about the potty. Once we started, though, it was a quick and painless process.

With one exception.

Kristen.

Obviously, there were major differences between Kristen and my other two girls. Cognitive differences, sensory differences (although in the eighties, sensory wasn’t a “thing”). And autism. But Kristen wasn’t diagnosed with autism until she was an adult. Back then, autism wasn’t as much a spectrum as it was a standardized checklist. The fact that Kristen was compelled to perseverate behaviors (like throwing her Barbies back and forth across the room dozens of times a day), went ballistic when asked to change her routine, and obsessed over certain toys, went unrecognized.

So, consequently, my big girl of three, four, and then — yes, five — wanted nothing to do with that white porcelain chair. Her littlest sister Sarah almost won the race to permanently shed the diapers. But at the last possible moment, when I thought it would never happen and maybe we’d have to buy stock in Pampers, Kristen decided to surprise us all and presto! She was done with diapers. And only when she was good and ready, thank you very much.

Glory hallelujah!

At one time during this 2 1/2 year process, I’d lost all hope. I thought my girl would be running and playing in those pink diapers at the age of 30. And you know, maybe all our kids would be if we didn’t push, beg and cajole them to leave those mega expensive accoutrements behind.

It seems so silly now, 25 years later, to think how exasperated I got, and how I thought it would never be a reality. Part of me wonders, what was the big deal? Why wasn’t I more patient?

But then I remember how I felt. And I think about how I feel now,  when I’m waiting. Could it be that in 5 years I’ll look back and think, What’s the big deal? Be patient! It’ll happen!7

It’s good for me to remember how faithful God has been in the waiting. I can look back at our family’s timeline. Not so many years ago, we were five people crammed tight in a 2 bedroom, 980 square foot duplex, praying hard for God to provide another house. God allowed us to move to a four bedroom, 2000 square foot house, after 14 years of living in close quarters. We were so appreciative when the waiting was over! It was a sweet gift from God.

Maybe that’s why waiting is not such a bad thing.  We’re so much more thankful than if we’d had our desires instantly filled. Kristen’s potty training was long in coming, but oh how sweet it was!

One of the sweetest endings to a long time of waiting happened this past Sunday. We had communion at church. Even though Kristen loves Jesus and has been baptized (another sweet story of waiting), she has always refused to take communion. She’s a picky eater, and she didn’t understand that the symbolism of communion outweighed the texture/taste of the elements. That’s always been fine with us — we get it. But Sunday was different. For the first time ever, Kristen took communion with us. She was so sweet as she bowed her head and prayed with us and took each element as we did. It brings tears to my eyes now, as it did then. That special moment was worth all the years of waiting. It reminds me, again, that God’s timing is perfect.

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