Christmas List

I have been scouring catalogs and the internet for months trying to find a Christmas present for Virginia. Wills has asked for a hundred different things, and I could easily think of a hundred additional things he would love. But it is hard to buy for someone with Virginia's physical disabilities. Virginia has UGG boots and an iPod. She has an only-one-of-its-kind motorized, swinging bed to help her sleep at night. (Thanks, Dad and Uncle Moose.) Her clothes are cuter than mine and good luck finding a Disney stuffed animal or movie she doesn't own.

The truth is, what Virginia really needs, I can't give her.

It's a hard lesson for a mother to learn- having to turn over your children to someone who loves them even more.

She is facing things that are physically tougher than anything I have ever had to endure. She has had nothing to eat by mouth since last Tuesday, yet lives in a house where food is prepared and eaten on a regular basis. We are doing our best to be sensitive, but let's be honest. It's a pain I can't take away from her and one whose sting I can't imagine.

Virginia is going to have to rely on spiritual food more than the rest of us do. Even though that is my prayer for my children, I wouldn't have envisioned it this way. Not all this suffering. Not at age 8.

More than any of the rest of our family, Virginia understands why Christmas is so glorious. She really needs a Savior. She really needs to know that God loves her so much, He allowed his son to suffer the ultimate misery. She needs to know that one day, she will live without pain.

We are truly celebrating Christmas at our house this year, maybe more than ever.

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Our good news is that the cough is better! A million 'hallelujahs' to that!

I feel like we are finally getting to the bottom of things. I think (Findley and I have an MD in Virginia Frazer, in case you were wondering) that the cough is primarily from aspirating, but not aspirating food. It's mainly her own secretions over the course of the night. So we are turning on the old humidifier, elevating her bed, and relying on the tube as much as possible without making her miserable. Nana would be so happy Virginia's off "all those damn medicines!" The other main issue is that she keeps getting colds, so we are going to continue to stay home from school for a while.

I think if we can let her lungs rest and heal, we might just get back to where we were six months ago.

Apart from turning the corner with the cough, It's been a trying week. The latest Virginia has slept is 3 am. I guess it's the steroids? On Tuesday she scared us by becoming pretty unresponsive- I have never seen her so sedated. Findley figured out it was the allergy medicine she started last Tuesday, and after 36 hours without it, she is back to herself. She's tired, but not zoned out.

I really don't know how to thank all of you who regularly pray for our family. Many of you have lots of time invested in our family. What a gift! Thank you, thank you, thank you.

And now, for laughs, here are some of the Christmas card pictures I didn't use...stay tuned for the winner. I have to get them in the mail first. It would be anticlimactic for my friends to see it on the blog first! (as if anyone really cares except for me!)

Too blurry...

Almost, but not looking the same direction...

Mommy was screaming at Eliza. Sissy was laughing at Mommy...

Mommy bribed Eliza with smarties, but it backfired when she wouldn't put them down for the picture.

This is cute, if we were a family of rappers...

Funny...Wills was hot in his sweater, sandwiched between two girls, and past ready to call it a day.

Laid back Sissy!

In other news, I have been wearing my glasses a lot. For two reasons. The first is that they make me look smarter and I need that- my sleep deprivation has taken 'spacey' to a new level. The other is that it's hard to get contacts in on two hours sleep.

Someone decided to copy me. She found my college glasses and wore them for hours yesterday. Sort of has me worried that she has vision problems because I am blind as a bat! I would think she couldn't see a thing with them on, but she is serious as a heart attack when she wears them.

That same someone loves having Virginia home from school. Maybe a little too much. Eliza, get out of Sissy's face...

Who, me?

And you know you live in Alabama when this is how your son spells 'The A-merican Flag.'

Merry Christmas!

Two Long Nights

The morning of Wednesday, April 27, we got the kids out of their beds around 5 a.m. No big deal for Virginia- she'd been up since 3. We headed to the basement because the tornado sirens were sounding. We lost power, but not before Findley managed to secure the only cup of coffee to be had in the house that morning.  We had no damage from those storms, but the weatherman warned the worst was yet to come. The kids were let out of school at lunchtime in anticipation of 'violent, long track' tornadoes. Findley came home around 5 and we turned on the local news to see what was headed our way. We watched in horror as the live feed showed the mile and a half wide tornado ravage Tuscaloosa. I felt so guilty watching- knowing that people were losing their lives as I sat there with my mouth hanging open- but it was riveting. I couldn't turn away.

At 5:50 the station flashed up the projected path and arrival times for the tornado. It was forecast to be within a mile of our house at 6:02, so we headed to the basement and put helmets on the kids. Thankfully for us, it jumped a few miles north of the projected path and we escaped without any real damage.

Findley and I stayed up late watching news reports from Tuscaloosa, Alberta City, Pleasant Grove, and Hackleburg. I could not stop crying watching the devastation as it was revealed, block by block, home by home, life by life.

The victims of last week's storms woke up the morning of April 27th, expecting to live a normal day. Instead, they found death and destruction waiting at their doorstep.

Obviously our tragedy is very different. It was manmade, it was preventable, and it only injured one person. But the feeling of loss is the same.

I was talking to a mother last week who lost her son in a car wreck a few years ago. She echoed all those feelings I was having as a result of the tornadoes. 'It's been a really hard week,' she said. 'Watching the survivors weep for their lost loved ones is almost more than I can bear. It brings back so much.'

So that was our Wednesday- it started early and went late, but thankfully, we were not directly impacted by the storms.

Virginia woke up very early Thursday morning. Amy took her on a walk in the afternoon so she could get in a little cat nap. When they were about a block away from our house, someone turned on a leaf blower. Virginia completely fell apart. She cannot handle certain loud noises if she is tired. She was crying so hard and arching back with such intensity that Amy had to take her out of the stroller and carry her home.

I met them at the back gate and tried to get her to stop crying, but she was too far gone. She threw up several times, then passed out in my arms from sheer exhaustion. When she started to stir, she began having a seizure. Findley walked in the door just in time. Virginia quit breathing (a first for her), he started breathing for her, and I called 911. The paramedics were here in under 2 minutes. We went to Children's via ambulance, fairly confident she had just had a seizure, but wanting her checked out.

They sent us home a few hours later, but Virginia had four more seizure between 11 and 11:30 pm. We went back to the hospital to get something to knock her out so she would quit seizing. Of course, even a whopping dose of ativan doesn't make Virginia go to sleep, but it did stop the seizures.

It was after 3 am by the time we got to a room, so I got to watcg the Royal wedding live. (How's that for looking on the bright side of things??) Really I was staying awake to keep an eye on Virginia, but I figured I would watch anyway. Findley wasn't really that interested!

We have had very few acute medical crises since Virginia was born. This was only her third hospitalization. But every time it happens, I get a new understanding of what happened to her, something I try not to think about in my daily life.

I don't see Virginia the way the doctors do. I wouldn't describe her condition in the same terms a text book would use. I see her as a happy little girl in a wheelchair. Yes, things are different for her and for us, but we have each other and we have built a great life. We have looked at the horror of what happened on October 3, 2003, and we have triumphed over it in the best way we know how. It isn't that I haven't dealt with what happened. Believe me, I have. I have just realized that dwelling on it doesn't make anything better. In fact, it often makes it worse.

But when I have to go to the hospital with Virginia, some of the lies I tell myself are exposed. I see how fragile she is. I come face to face with the extent of her brain injury.

It is easy to think I have forgiven those responsible for Virginia's injury and suffering, but when she is sick and struggling, I realize all my anger is still there. It is extremely intense and I honestly wonder if it has a permanent place in my heart. I hope not, but watching Virginia suffer seems to render me helpless against it.

When we arrived home on Friday, April 29, I was close to being pulled into a pit of despair.

So what did I do about it? I vented a little a lot to Findley, Laura, and Molly. I shed some real tears. Mom and Dad came so Findley and I could catch up on some much needed sleep. I watched Tangled with Virginia about ten times. I held her a lot, and told her even more than usual how much I love her and how proud I am of her. She and I went on a lot of walks so she could rest, but we stayed on the trails- far away from noisy yard equipment of all types.

And after a few days of sorrow, I began to see the sun again.

For what seems like the millionth time, I made the conscious decision to embrace life and all its depth. It seems like I have already made that choice, but I guess I am a slow learner. When Virginia's suffering reaches new levels, I have to revisit some of the lessons I thought I had already mastered.

There are days when that decision is easy to live out, and there are days when I feel like I have to tell myself over and over again to choose joy and not succumb to the darkness.

None of us know what lies ahead on any given day. There is no way to secure shelter from most of the tornadoes in our lives. But we can do our best to serve God by loving those around us and seeking joy in the midst of our storms. It's not an easy thing to do, at least for me. Often I fail far more than I succeed.

I am grateful that God gives this slow learner multiple opportunities to master what is important in this life. And I am especially grateful that none of Virginia's suffering will be in vain for we serve a God who has already won the final battle.

Ok- if you are still with me- sorry for the rambling post! Here are a few catch-up pics.

Easter egg hunt at Findley's parents

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Passed out on the way home after Easter egg hunt

In basement, preparing for approaching tornado

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Perking up in first trip to ER

Feeling even better, still first trip

Human pillow, hospital, round #2

watching Tangled, one of probably fifteen times that weekend

Walking

Hazardous Working Conditions

We have pretty much been in our pjs for two weekends in a row. Ms. Amy called me this morning and said she was sick. Again.

"I never used to get sick," she said, sounding a little perplexed at her recent bouts with illness.

I was not as perplexed.

"Hah," I said. "You didn't used to have such hazardous working conditions either!"

Poor Amy. We tend to do a number on our helpers. Sally even ended up with meningitis. Never sure that we gave it to her, but it was pretty suspicious.

The kids have basically been sick for two straight weeks. This was our second weekend in a row to stay in our pajamas. Virginia has a nasty cough and congestion. Wills tested positive for flu and strep today. Never had that one happen before. And poor Eliza just has strep.

So...prayers for sleep. Prayers for healing. And prayers that Virginia doesn't get the flu. She won't be able to participate in her Valentine surprise if she has the flu. And it would be nice if I could come and go from Nana's without having to leave a sick kid (or three) and without having to worry about giving Nana the flu!

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When I started my six-hour drive home from Nana's on Tuesday, I was sad.

Really sad.

It didn't help that it happened to be the gloomiest day on record. I didn't see the sun one time as I followed the Appalachians all the way to their foothills. Mist was falling the entire trip- not enough rain to actually turn the windshield wipers on, but enough to need a sporadic swipe.

Obviously, the process of losing someone I love as much as Nana is painful, but I knew there were some other demons lurking around as well.

At first I tried not to think about what was weighing on me. I pulled out a cd case that I honestly don't think I have opened since high school. Abba Gold. Abba More Gold. The soundtrack to Mermaids. Toad the Wet Sprocket. (I think that one is from eighth grade). A four disc collection titled Hitsville USA. Is anyone else embarrassed for me?

After about an hour, I realized I couldn't sing away what was tugging at me.

The truth is that sometimes new suffering opens up old wounds.

As I was standing at her bedside, it was hard not to be aware of the missing generation between Nana and me.

As I spoon fed Nana her yogurt, I thought of Virginia waiting back at home. It was sad to have to be feeding Nana, but also somewhat expected. She is ninety-three years old, and whether she lives 2 more weeks or 2 more years, she is approaching the end of her life. Virginia is supposed to be in the prime of hers.

As I sat there with Nana, I wished Virginia could be with me. Nothing would have made Nana happier. But it's just not possible under the circumstances. It's too long a drive and caring for Virginia on the road is more than a one woman job.

I was grieving for myself. And what I lost. But realizing fully that my loss is only a shadow of Virginia's loss.

All milestones, good and bad, make us look at where we are in life verses where we thought we would be. We come face to face with crumpled expectations. Shattered dreams.

I never thought that at thirty-two, my life would look like this. I thought it would be easier, much easier. I never imagined myself as the primary caregiver to my severely disabled little girl. In all the places my imaginative mind went as a child, it never happened upon this place of suffering.

So what do you do with all those expectations? When you realize they are what hold you back and keep you from embracing joy?

You have to let them go.

You have to embrace new life and new traditions. New dreams and new ambitions.

When you can't move on from the old expectations, they become the burden.

It is not the actual struggle that is so hard. It's grieving the loss of what might have been.

I have to believe that almost all of us do this. We all dwell on the bumps in the road.

And those bumps in the road give us an excuse not to be happy.

If only...

Virginia hadn't been hurt.

If only...

(you fill in the blank)

I admitted long ago that I don't like change. I am very much rooted in tradition. Thinking about Wills staying at school two hours longer next year is enough to bring me to tears.

Apparently, it is even hard for me to accept that I need to create some new dreams.

Thankful for Saturday's sunshine, I made sick Wills take a nap on the trampoline. He slept two hours.

I tried the same thing with Sissy, but she laughs in the face of all sleep!

Battle Scars

Molly and me at Virginia's birthday My best friend, Molly, now lives about a mile from my parents. When we were visiting in October, she insisted that Findley and I go out for a nice dinner with her, her husband, and another friend from college who was in town. Molly also wanted to invite another couple, one that I don't know as well.

"Have you already asked them?" I questioned over the phone.

"No. Why?" she responded.

"Because I am too tired to make small talk and get to know new people. I can hardly get up the energy to eat dinner with y'all. Please don't make me socialize with virtual strangers."

"Aren't they sort of your cousins?" Molly quipped.

"Sort of," I said. "But that's beside the point."

"No problem," Molly replied, "It'll just be us." But I could tell she was holding back a chuckle.

"Are you laughing at me? I know. I'm pathetic. I just can't expend any extra energy," I justified.

"I know, I know," she laughed. "I was just thinking about how much what you have been through has changed you. You used to be the party planner, the event organizer. And now I can hardly get you to go out to dinner. But I understand, Ab. I really do."

And Molly does understand because she has spent a lot of time with Virginia. She used to drive to Montgomery on her day off  just so I wouldn't be alone listening to the crying. But her comment caused me to think about how these last seven years have changed me. Not just in the big ways, which I write about all the time, but in the little, less noticeable ways.

Part of the differences are practical. I still love being with people just as much as I ever did, but I don't have the time to pursue relationships outside of these four walls right now. (And I know lots of parents with small kids would say the exact same thing.) The same goes for hobbies. Philosophically, Findley still likes to spend time at the farm and hunt, but he hasn't done it in seven years because taking care of Virginia comes first.

I used to give a lot of parties. There were always people around our home and I loved it. But for me to entertain now means that Virginia gets ignored. It's one thing to stick a grilled cheese in front of Eliza and get on with my chocolate volcano cakes, but if I don't take forty minutes to sit down and feed Virginia, she doesn't eat.

Not to beat a dead horse, but we also don't sleep on a regular basis. Imagine having a newborn for seven years. I tried to get Findley to go to Arizona for the big Auburn game, but he reminded me that our physical reserves are very low. He didn't think he could afford to waste his energy on something non-essential and I think he was probably right.

But when I am honest, I will admit that most of the differences in me are due to real change in the way I see the world. My spirit is not as light-hearted as it used to be, and I am beginning to see that as a gift. A strange gift, one I have to be careful to keep in check, but a gift nonetheless.

Once you are aware of true suffering, your load becomes heavier. It is harder for me to be in a big group of people and just relax. It feels wrong to have a celebratory spirit when Virginia is home, unable to sleep. Or when I know that first thing in the morning, I will wake up to the same hardships I faced the day before.

Those are the times I have to let my mind win the battle over my newly-burdened heart. I know that we are called to celebrate life. To rejoice with those who are rejoicing. So even though it is impossible to 'check my suffering at the door,' there are many times when that is exactly what I need to do.

But having an acute awareness of the pain in the world gives me much greater empathy for those around me. Hopefully it causes me to look outwardly, not inwardly, and try to be there for those in my life who are suffering. And I have found in my old age that that includes everyone. I am certainly not the only one at the party whose mind struggles to engage in frivolities.

Yes, I do feel that in most ways Findley and I have emerged safely on the other side of this storm, but we are very different people than we were before. If an old college friend saw us out at dinner, we probably wouldn't seem any different than we did hanging out in the Branscomb Munchy Mart thirteen years ago. (Except for a few extra pounds on me and a little less hair on Findley!) You couldn't see the scars of what we have been through these last seven years or the sorrows we will always carry with us. But they are there.

Hopefully as time moves on, those scars and burdens will become more and more integrated into our lives and we will be better able to function in a world that continues to move around us. But I pray that we never lose our hard earned empathy or newly discovered perspective on the world.

Sometimes Love Is Messy

Eliza, after enjoying her first chocolate chip cookie I have been wanting to write about this for months, but haven't been able to find the words. This is an emotional topic for me, so I am just going to jump right in...

One of the hardest things about the first year of Virginia's life was the lack of anger other people had about what had happened to her.

There were common catch phrases that I heard frequently.

God's plan is hard to understand, isn't it?

The sun will come out eventually. It always does.

God is always in control.

It's a blessing that God trusts you and Findley enough to be Virginia's parents.

Looking back, there is nothing wrong with any of those comments.

What I take issue with is that very few people wanted to understand what had actually happened to Virginia. No one wanted to believe that something so grievous could occur in modern America, much less in their own home town. Acknowledging how it happened meant realizing that it could have happened to their baby, too.

Southern culture dictates to some extent that we don't talk about hard things. All of our doctors are dedicated, smart men. All of our hospitals are worthy of our trust. God doesn't give you more than you can handle. Well, what happened to us wasn't a good thing. It was a grievous crime. And unfortunately it happened at the hands of someone who was a pillar of the community, further complicating people's emotions.

What Findley and I felt was righteous anger, a very Biblical emotion. And what we needed were friends who were angry and outraged with us, just as if Virginia were their own daughter.

I am the daughter of two doctors. I am the daughter-in-law of a doctor. Malpractice used to be a dirty word in my mind, too. I thought plaintiff lawyers were ambulance chasers, people who sued McDonald's because their client was too stupid to gage the temperature of their coffee before taking a gulp.

This road would have been much easier if Virginia's injuries had not been preventable. So much of our pain is because someone's actions caused her suffering. She was denied the chance to live a healthy life before she ever entered the world.

The hardest moment for Findley and me was not at the twelve hour mark when they told us she might not make it, but at the thirty-six hour mark when my OB (who was not on call the night Virginia was born) entered the room with tears in his eyes to tell us what had happened.

That at 11:05 pm her heart strip started to look troubling. She was getting tired.

That at 11:45 pm her heart strip became 'non-reassuring.'

That by 11:45, he would have delivered Virginia had simple interventions (like putting me on oxygen, turning me on my side) not improved her heart tracings

That around 1:00 am, things went from bad to worse

And that after 2:15 am, she went into a 'terminal bradycardia' (a very slow heart rate that would have killed her had she not been delivered). She wasn't delivered until 3:08 am.

He went on to say that there was almost nothing written in my chart and that he had no idea where my nurse had been during all this or why no one had intervened.

At the moment we learned all these details, the world seemed to crash around me. I felt like I had let her down. She had been struggling for hours and no one had been watching. Bless her heart, she had held on as long as she could.

All these 'details' matter very much to a mother and father living out a true nightmare. What happened to Virginia was like being hit by a drunk driver or being struck by a stray bullet because she was in the wrong place at the wrong time. A tragedy in every sense of the word.

But very few people wanted to talk about these things. They wanted to hand me a chicken casserole, assure me that they thought Virginia seemed totally fine, and head back to their car.

In February of 2004, I went to see one of the pastors at our church because I was really struggling. He spent the first fifteen minutes telling me how worried he was about a very trivial issue with one of his children. I could tell he was very distraught over it.

As the conversation turned to me, I told him what the doctors were saying about Virginia. That she would probably never walk. That she would probably never talk. That she would have seizures the rest of her life.

"Hmmmmmm. That's hard," he said. "But the Bible never promises that life will be easy."

I went on to tell him how it had happened. (And to be honest, it hurt that he didn't already know. But that's the culture. No one talks about messy things.)

"Hmmmmmm. That's hard, " he said again. "But God is in control of all situations."

All this from a man who had just spent fifteen minutes confiding in me that he was worried about how one of his small children would acclimate to high school. I should have walked out because it certainly wasn't helpful counseling, but I was too polite back then. Too intimidated by this figure of authority. Too meek to ask him for what I really needed, which was for someone to share my outrage. For someone to want to do something about it.

We have a good friend who just went through a divorce. She confided in me a lot about all the things her husband had been up to, and to be honest, part of me didn't want to hear it. It was heavy stuff and there was a time when Findley and I both really looked up to her husband. We thought they had the perfect life, the perfect marriage. We didn't want to admit that if her marriage could fail, then ours was vulnerable, too.

We didn't want to choose sides or get our hands dirty. But you know what? We did. Because we love her. And loving her meant embracing all that she has been through and weeping over all the injustices she has faced.

Findley and I have lots of friends who understand that sometimes love is messy. They have been more than willing to help carry the burden of our anger, no matter what that looked like. Our minister was afraid that by acknowledging my anger, he would give it roots and it would take over. He was too afraid to let me be mad at what had happened. But I have realized that the opposite is true. The more people who help carry the load of our suffering, including the righteous anger, the lighter that load will become. So to all my load carriers out there, thank you from the bottom of my {messy} heart!

Worry Is My Middle Name

The hardest period of my life was definitely the first three years following Virginia’s birth. I was still in shock, the wound was fresh, and Virginia’s brain injury left her completely miserable. But the most difficult aspect was the uncertainty over her future. I agonized constantly about how smart she was going to be. About whether she would eventually learn to sit up, walk, or talk. Every appointment with one of our therapists or doctors was like an emotional roller coaster because I was desperate for information. I hung on every word they said, good or bad, and would replay the conversations over and over again in my mind. It was very difficult to see other babies out in public because I compared them to Virginia. One Saturday when Virginia was about five months old, I ran into the pool store to buy chlorine. I saw a baby in his car seat carrier and he was lifting his head up off the back of the seat.

“How old is your baby?” I asked the mother, anxiety slowly taking hold of my heart in anticipation of her answer.

“About three months,” she said.

“He’s really cute,” I somehow managed to blurt out before walking away, devastated and on the verge of tears.

I left the store without the chlorine and ran back to the car where Findley and Virginia waited. Virginia wasn’t holding her head up yet- not even close. Even once my mother’s heart realized something was definitely wrong (when she was only six weeks old), I was still hopeful that the effects of her injury would be mild. Every time I saw a child who was developing normally, fear would rise up inside of me and own the day.

From a physical standpoint, Virginia’s outcome is about as bad as it could have been. We are just weeks from her seventh birthday and many of my fears have been realized. Virginia can’t talk, walk, chew, or use her hands at all. We went to Pittsburgh in 2006 to see a neurosurgeon who is an expert in the field of dystonia and he said, “I have never seen a patient with so much involvement in her mouth and arms. She is one of the most severe cases I have ever treated.”

The irony is that I am in a much better place now than I was during the first three years of her life. It doesn’t make sense to me because at least then, I had hope. I had hope that Virginia’s cerebral palsy wasn’t going to be this debilitating. Now I face the reality of its severity every single day.

But what I have now that I didn’t have then is the knowledge that God will give us the strength to handle whatever comes our way. Over the last six years, we have been through trials I never dreamed possible and what I have realized is that fear of the unknown is much worse than the reality. I don’t compare Virginia to children her age anymore. I know the differences are vast. But I am free to love her for who she is and I now know with certainty that our family will have joy regardless.

As much as I theoretically embrace the need to quit worrying, I am clearly a slow learner. I struggle greatly with the application of what I have learned. My biggest hope for Virginia’s future is communication. I desperately want her to be able to tell me how she feels and what she needs. I want her to be able to tell her own story one day. When things aren’t progressing well with speech therapy (which focuses on learning to use a speech device), I tend to get overcome with anxiety.

“Findley, what if she can never communicate? What if things don’t ever progress past this point?” I whine.

“Well, even if things don’t ever get any better, she has a great life,” he reminds me. “Ninety-nine times out of a hundred, we can figure out what she wants. Even if things stay exactly the same, we are ok. We really are.”

It is hard to admit that the toughest part of my life is still the anxiety I have over my children’s lives, but it is. And that anxiety is not just isolated to Virginia. Do I pay enough attention to Wills? Am I too hard on him? Will Eliza feel like she has to take care of Virginia? Will she feel guilty participating in things Virginia can’t be a part of? And, the monster question always lurking in my mind, will my children love the Lord all the days of their lives or will something cause them to turn their backs on Him?

The amazing thing is- and I really do believe this is true- I have the power to get rid of the toughest thing in my life. No, I can’t heal Virginia or trade places with her, but I can learn to let go of all the fears in my life. Most of my them won’t materialize, but even if they do, God will give me the strength I need to handle them, just like He has with Virginia. Whatever hardships lie ahead for my family can’t possibly be as bad as I imagine them to be. Can you imagine what your life would feel like free from worry? Honestly, I really can’t, but I am going to try to move in that direction.

*None of these pictures are related to the post. Just thought they were worth sharing!

Findley and Wills have spent the last 2 weekends installing a basketball goal. It was a little harder than anticipated, but lots of fun now that it's completed.

Eliza is into everything!

Virginia had her annual fun run at school. I spy a very tall first grader. He didn't look this happy after 35 laps!

Wills had his first soccer game this week. Here he is with his favorite coach.

All ready for the game.

Perspective

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Findley and I were some of the first parents to arrive at Virginia's kindergarten musical last fall. We wanted to get a good seat so that she would be able to see us from the stage. As we waited for the play to begin, I realized I was really nervous. I had a tremendous pit in my stomach. All the other parents around us seemed awash in excitement- cameras poised to capture their child's big day. But not me. Honestly, I could think of a million places I would rather have been.

All the other children filed in from the left and Virginia's aid pushed her in from the right. In the picture at the top, you can only see about one-fifth of the children. As I sat there and watched seventy five (seemingly) healthy children fill the bleachers, my heart hurt. Why had Virginia been singled out for so much pain? She was the only one who couldn't sing, couldn't dance, and couldn't even wear the hat her peers wore because her headrest kept knocking it off.

Watching that performance was very difficult for me. Are people staring at her, I wondered? Do they realize how smart she is? That she is so much more than a smiling face in a wheelchair?

After the performance was over, the children remained on the stage so that overeager parents (my husband included) had plenty of opportunity to snap the perfect picture. One of the hardest things about Virginia's dystonia is that the harder she tries, the harder it is for her body to do what she wants. So every time a mother said, "Virginia, look this way" or "Smile, Virginia" or "VIRGINIA, can you look over here?" I just wanted to crawl in a hole. Because when she is excited and trying to look a certain direction and smile, she can't. Her body arches back and she is forced to look over her right shoulder.

In moments like that I want to explain to all the parents that she does hear them. She certainly understands that they need her to look straight ahead for the picture. But she is unable to. I want to say, Just take the picture and move on, ok? But I don't say anything because it's not the place. Big crowds of her peers are overwhelming to me because her disability leaps out from the crowd and people stare. People are curious. People make the wrong assumptions.

I learned something about my own heart that day. As we walked home after the performance, I was fighting back tears. "It's just so hard, honey, " I said to Findley. "I feel like we are taking a square peg and trying to force it into a round hole. It hurts so badly to see her up there."

He paused a minute, as if to prepare me for the bullet he was about to fire my way. "Did you just see the same musical I did?" he asked me. "Did you see the smile on her face? Honey, she's choosing joy. You better get on board."

He was right. Virginia had a great time being a part of that show. She felt proud of her own contribution and proud of her classmates for their special roles. She smiled and laughed almost the whole time. I realized that on that day, in that moment, I was the one having a hard time. I was the one embarrassed by her disability. I was the one who wanted my child to look like everyone else's.

I was looking at things with my worldly glasses, the ones in which I long to fit in, not stand out. To be comforted, not challenged. Yes, obviously anytime I have a new realization of what was taken from Virginia, it is painful. But sometimes I need to do a better job of shifting my perspective and looking at all that she has rather than all that is lost. I know I am a little biased, but Virginia contributed more to that performance with her joyful presence than she would have if she had sung the lead solo. And I was so caught up in how I want things to be, I almost missed the blessing of how they actually are.

"Now we see but a poor reflection as in a mirror; but then we shall see face to face." 1 Corinthians 13:12

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Night's Grip

This was the only way Virginia could sleep for the first two and a half years of her life.

I don't do well at night. I never have. Any perspective or rationality I have seem to set with the sun. Fear rises up from deep within me and reigns until the sun's rays banish it at dawn. I have been this way for as long as I can remember. My parents warned Findley early on never to discuss anything emotional with me at night because I couldn't handle it. I am pretty sure he would say this is the best advice anyone ever gave him. My nighttime fears cause me to long for the familiarity of home because at least home offers some illusion of security. I was in sixth grade before I ever spent the night out. Up until that point, the same scenario would play out most Friday nights. I would decide I wanted to spend the night at my friend Ashley's house and I would happily pack my bag and head over. But I never made it past nine o'clock. I was so predictable that one night when I went downstairs to ask Ashley's mom to call my parents to come get me, Dad was already there. He was sitting at the kitchen table with Ashley's father, having a beer and waiting for me to appear. He knew me better than I knew myself. I am sure this fear stemmed from losing my mother at an early age. I never would have been able to articulate that at the time, and it is still strange to me to admit that a tragedy I don't remember clearly has impacted me to such a degree. But it has. I have always been aware that life is short. That tremendous pain is hiding just around the corner. That my perfect little world could be shattered in an instant. Virginia was born very early on a Friday morning. I went home the following Tuesday, but she obviously wasn't ready to come with me. I cried myself to sleep that night because I knew my haven was gone. I no longer had a place where I could pretend to be safe from the pain of this world because my fears had been realized. The impermanence of my happy existence had been exposed and I knew it. I do a decent job of holding it together during the daylight in spite of my fears, but when night comes, I am fighting a real battle. Unfortunately, night is also the hardest time for Virginia. Like mother, like daughter. When she is screaming, it feels like the pain will last forever and that the two of us will be swallowed up by sorrow. I forget so easily that daybreak will bring relief, that she and I will both regain our strength to continue this fight when the darkness is banished. The sun will rise in the morning. It always does. We are in the middle of a rough patch with Virginia and we are facing some big decisions. It feels like we have been in this place for a long time, but I am clinging to the lessons I have learned in the night. That dawn will always break. That hard times don't last forever. That we have not been abandoned in the darkness before and this time won't be any different. One of the most unexpected consequences of the events of Virginia's birth is that I don't live in fear anymore. (Well, not nearly as much as I used to anyway.) You would think that now I would be more afraid because I know what's out there, but instead I have realized that in spite of true devastation, I am ok. I still have joy and it is even greater than I ever imagined. I have just had to look for somewhere more permanent to store my treasures. "And the light shines in the darkness and the darkness will not overcome it." John 1:5

Nap time in the early days.

Lessons from Nana

I have never lost a child. It is one of the hardest roads a mother can walk and I have never walked it. But someone I love very much, someone who has been one of the most influential people in my life, has walked that road not once, but twice.

Nana, my maternal grandmother, lost her oldest daughter to leukemia when she was just ten years old and she lost my mother* to colon cancer when she was thirty-three. Nana, who had gone above and beyond to create the loving, nurturing home for her girls that had been denied her as a child; Nana, who had spent months learning how to care for polio patients only to have both her children fall victim to cancer; Nana, who had worked two nursing jobs to send my mother to medical school, only to watch as she finished first in her class, but then died before she ever had the opportunity to practice. Nana, who has given so much of herself to caring for others, has suffered the most unspeakable loss.
I have to say that Nana has many qualities I have always wished to emulate. She is smart, she is stubborn as only a true mountain woman can be, she is an incredible cook, she is an amazing nurse (attention to detail like no one I have ever met), and she is one of the most compassionate souls I know. I have always longed to be like her in many ways, but I did not long for her share of suffering.
Nana was a neonatal nurse. She actually started the neonatal wing at her hospital in Johnson City, Tennessee. Most women love babies, but I have never seen anyone love a baby like Nana does. You can only begin to imagine how excited she was when I told her I was pregnant with Virginia. Not only was this baby going to be her great-grandchild, this baby would be my mother's legacy.
When I called her to tell her that Virginia had arrived and that the doctors didn't think she would make it, do you know what the first thing Nana said to me was? She told me not to let what had happened shake my faith. I can still hear her pleading with me over the phone, because she had walked this road before. She knew where my heart was likely to go in the months ahead. "Please, angel," she begged me. "Don't let this shake your faith."

Nana is ninety-three years old and, until fairly recently, healthy as a horse. She spends most all of her time reading her Bible and listening to Christian radio. In spite of all she has been through, Jesus is still her greatest comfort.

Through loving Nana, I have seen the toll that sorrow can take on a person's life. With the exception of loving me and my children, Nana's life ended in October of 1981. She has not lost her faith, but she is held captive by the past. Fifty-five years later, she still remembers every detail of her first daughter's death. Twenty-nine years later, she can still recount every single aspect of my mother's cancer. She relives the same scenes multiple times a day. And those are heavy memories. Crushingly heavy.

For the first three years after Virginia was born, I did the same thing. I relived the night she was born over and over and over again. In the quiet of the shower or my daily walk, I imagined it being played out differently. I imagined sending for the doctor at 11:40. I imagined a healthy delivery. I imagined what I would say to the nurse responsible, what I would do to her, if ever given the opportunity. I could recall every conversation that took place in the days and weeks after her birth, as the reality of her situation came to light and the glaring horror of the acts that had caused it were revealed.

Every time I relived those moments (which was all the time), I was thrown back into the pit of despair. I, too, was held hostage by the events of the past. It didn't help that Virginia cried all the time; her misery was most certainly an instigator for my sorrow and it still is. When Virginia struggles, I still have a hard time escaping those early, oppressing memories.

Minute by minute, day by day, those memories have started to loosen their grip on me. I think the main reason for that is that they have been replaced by new, happy memories that have risen from the destruction of our dreams. Since the beginning of this journey, praise the Lord I have had a reason to seek joy staring me in the face every morning and that reason is Virginia. Nana had no such reason. Like I said, I have never lost a child, but I can only imagine that if I did, my heart would reside in the same place of pain that Nana's has all these years.

Since Virginia's birth, I have seen new light in Nana because she knows I need her. She spent six weeks with us in the immediate aftermath of Sissy's birth and came back frequently. When Wills was born, she came for three months. She even spent four months with us when I was pregnant with Eliza. It takes a lot for an older person to leave their home, their routine. For Nana, it takes even more because she is leaving some of her memories as well. She has been willing to let go of her grief to serve me and to love my children.

I have tremendous guilt over the things I can do that I know Virginia will never be able to. I think Nana feels guilty that she is enjoying her daughter's grandchildren when her daughter cannot. I can only imagine the emptiness that she has inside of her, the way it must feel to be torn away from your children. But Nana is one stubborn lady and when she promised my mother she would take care of me, she meant it.

Whenever I am sad or depressed about my situation, I call my mom to complain. She always has the same answer. "Why don't you just go do something for someone else? That'll take the focus off your own hurt and you'll feel better." That is exactly what Nana has done these last six years. Not many children can say that they really know their great-grandmother, but mine can. Because Nana loved me so much that she was willing to let go of her sorrow and create new memories. If I live to be an old lady, I pray that I will be able to let go of the pain of my past, however predominant it might be, and serve those around me with the same faith and love that Nana has.

*I am sure those of you who don't know me are a little confused. My biological mother died of cancer when I was a baby, but Dad remarried Mom when I was not quite four. Mom is my mother in every way except she did not birth me. (although sometimes she forgets this and says things like, 'When I was pregnant with you...' and we have to remind her that she has only been pregnant twice even though she has three kids.) Mom has always encouraged me not to forget my biological mother and has looked after Nana like she was her own mother. She is amazing and Virginia is her namesake. Mom always says that if she is too hard on me or loves me too much, it is just because she is doing the job of two people. I truly am richly blessed!

Nana's bed buddy when she broke her hip.

I had to take Eliza to her, but it was a special meeting.

Healing

Every now and then someone I know (and occasionally someone I don't) will approach me and ask to pray for Virginia's healing. Usually they want to lay hands on her, anoint her with oil, and ask the Lord to make her walk and talk. I grabbed onto every one of these opportunities at the beginning of Sissy's life. I eagerly watched her for signs of change as different individuals laid hands on her and pleaded with God for her complete and total restoration.

I always appreciate it when anyone feels led to pray for Virginia. It is good for my soul when God puts her on another's heart. But it has been a long time since I have prayed for her complete and total healing. Don't get me wrong- I believe beyond a shadow of a doubt the God is capable of such an act, but I also believe that that is not his typical modus operandi on this earth. If I am totally honest, I will even admit that I don't know anyone who has been miraculously healed from catastrophic injury. I know people who have done better than they should have or lived longer than predicted, but I personally have never witnessed a miracle in that sense.

Obviously, my heart still longs for Virginia's earthly healing, but God has brought me to a place where I long for something even greater. I have realized that even if God healed Virginia's body today, tomorrow would present with troubles of its own, and I would be back on my knees, begging for another miracle.

There are countless times each day when my heart cries out for mercy for Virginia- when her jaw gets stuck open and she winces in pain, when her body won't hold still and she screams for hours trying to fall asleep, when she is sick and struggling to cough with the vigor the rest of us possess. I am her mother and I will never be immune to even an ounce of her suffering. Yet without articulating those requests for mercy, without even thinking them in an organized fashion, I know that the holy spirit hears and interprets them and carries them to the Father.

Gradually over the last six years, God has taught me that I have to long for something greater than earthly perfection. I have to long for something that isn't temporary, for something that can't be annihilated by the consequences of the fall. What I have to long for is Him.

When Virginia was not quite six months old, a woman in Montgomery approached me about praying for Virginia. She was someone I knew socially and was friends with several older women in our church. She was a little eccentric, but I liked her, and several people said that she had the gift of healing. I believe in spiritual gifts and I also knew that this woman's faith was sincere, so I agreed to take Sissy to her house for prayer.

The day before we went, Sissy had her first episode of infantile spasms. They are not like any seizure I had ever seen or read about, and I wasn't sure what I had witnessed the first time it happened. We were standing in the back yard of my neighbor's house, and Virginia bobbed her head forward three times, with about two seconds in between each bob. If it hadn't been for the rhythm of the movements, I probably wouldn't have noticed. I immediately went home and called the neurologist who told me to let her know immediately if it happened again. When infantile spasms start out they are fairly infrequent, but by the end of the first week, they can happen hundreds of times a day.

The neurologist didn't tell me what she feared, but assured me if anything were truly going on, she felt confident it would declare itself pretty quickly. I tried not to think about what I had seen and the next morning loaded Virginia into my car and drove to the woman's house so she could pray for her. There were five women there, all mature in their faith and ready to ask the Lord for a miracle. They laid hands on Virginia, anointed her with oil and boldly approached the throne.

We had been praying for about five minutes when Virginia had her second episode of infantile spasms. This one was much worse than the first- she bobbed her head forward at least twenty times and she began crying out in fear. I left and went straight to the neurologist's office and received the diagnosis of infantile spasms that afternoon.

I have thought a lot about the timing of that day. In a moment when my hopes were raised for healing because a team of women I trusted had assembled to pray for Virginia, another blow to her future came crashing down. It was ironic at best. Now please read this carefully- I don't for a minute think that God caused Virginia to have those seizures at precisely that moment so that my perception of prayer would be challenged. God doesn't cause cancer, He doesn't orchestrate car wrecks, and He doesn't send seizures to little six month old babies. Those things are the result of the fall and of the sin that entered the world; God is not the author of sin and scripture is very clear that He weeps along with us.

On that day God began the long (and not yet complete) process of teaching me what true healing looks like. I began to gradually let go of my laundry list of requests for Virginia (Lord, heal her brain, take away her seizures, let her walk, let her talk, let her sleep at night, etc) and started to seek the one thing we are truly in need of. We don't see the picture clearly and we forget how fleeting this life is. Virginia may be more perfect with all her injuries than an Olympic athlete decked out in all his medals.

If people ask me, I will admit that I don't feel called to pray for Virginia's total healing any more. I feel like the Lord has lead me down a different path. For starters, I don't want her to think she is anything less than perfect. I don't want Sissy to always be hearing people ask God to change her, to make her better; I want her to know she is absolutely beautiful just the way she is. When I pray for Virginia, I ask God to draw her closer to Him all the days of her life and to help her begin to see things with eternal perspective. The fact that I have gotten to the place where I no longer seek total physical healing for Virginia is a true miracle and evidence of what God can do in our hearts in the midst of suffering.

(Note: Clearly the issue of prayer is tough to address in just one post, especially when the writer of the post hasn't slept more than 3 consecutive hours since a week ago Thursday. I would imagine that prayer will be a frequent topic on absgab. Check back for more coherent musings and comments are welcome.)