Strange Companions

My goals for my children are pretty simple. I want to have a happy home, full of love, learning, and fun, with plenty of room for all of us to make mistakes and experience forgiveness. I want them to love God, love those around them, and learn to be hard workers. Easy, right?

All three of my children are in very different phases. Their needs seem to conflict all the time, leaving me feeling like I am spinning in circles and not really doing a good job taking care of anyone.

Part of these feelings are typical for a mom with 9, 6 and 3 year old children. But Virginia's limitations and the time and attention to detail needed to care for her put a different stress on our family (and me). What Virginia needs to thrive and what Wills and Eliza need to thrive are vastly different.

But I have started to see that all these different directions I feel pulled in aren't as conflicting as I once thought. The intermingling of:

pain and mercy

complexity and simplicity

light and darkness

anxiety and peace

needs and gifts

in our family works together in a way that is a pretty clear picture of the Gospel.

I used to see joy and suffering as two separate, vastly different entities. Your life was either full of one or full of the other. The presence of one essentially eliminated the possibility of the other. For a long time I felt like I wouldn't be able to experience happiness again unless Virginia was healed.

It is embarrassing to me that I used to be so naive as to think that anyone's life was entirely coming up roses, but I have read enough responses to tragedy to know this view is normal until one experiences great loss. I felt like surely what had happened to Virginia was terrible enough that we would live the rest of our lives under a dark cloud.

The most important lesson I have learned on this journey is that you have to seize the laughter and the sunlight when you have the chance. I love the James Taylor, Yo-Yo Ma recording of 'Hard Times Come Again No More.' (from the album Appalachian Journey, all of which is beautiful). But let's be honest. In this life, hard times are going to keep on coming. Some will be surmountable and fade with time, others will be unconquerable, at least in an earthly sense, and stay with you for the remainder of your days.

The key for me has been to realize that these moments of victory and tragedy are going to mingle for the rest of my life, and that one couldn't exist without the other. Sometimes it is as simple as rejoicing with Eliza when she learns to ride her bike even though Virginia never will. Or celebrating at dinner with friends in spite of the fact that Virginia had a bad day.

Sometimes the intermingling is more complex.

I had some beautiful moments with Nana at the end of her life, and by the grace of God, the reality of impending death made this time richer. As crazy as it sounds, even death adds depth and beauty to our lives when we embrace it for what it is- a transition to the life we were really meant to live. But we have to be open to God's mysterious gifts, including the undeniable presence of the Holy Spirit, in the midst of such vivid, suffocating darkness.

I am not naive enough to think that if unspeakable tragedy came calling again today, I would walk out of the hospital and say, "Wow, look at the beautiful fall leaves." Pain hurts and I know that fresh wounds still have the ability to knock me down and take my breath away.

For a little while.

But...

While joy and suffering at first encounter seem to be strange companions, the reality is that one could not exist without the other. Instead of being irreconcilable to one another, joy and suffering actually hone one another in an inexplicable way. If you keep your eyes (and your heart) open, a life rich with trials may be equally rich with happiness.

(and one day soon, I promise to write on a topic other than suffering!!)

(and I apologize for a completely unedited post. Sorry for the run-on sentences, most of which I am aware of. Sorry for repeating the same point multiple times, I am sure. Time is one thing I don't have a lot of right now!)

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First things first. Virginia's cough is almost non-existent right now! She will literally go all day and not cough. Our new GI guy started her on a small dose of erythromycin (old school antibiotic) before each feed. He said it helps with stomach motility and that most of her reflux (and hence most of her cough) was due to the fact that her stomach emptied so slowly. It has really seemed to help. I only feed her enough by mouth to make her happy- a few sips of chocolate milk (or- terrible mom- coffee!), banana pudding instead of birthday cake, pudding, yogurt, etc. There are still times I can tell she wants what we are eating, and it's heart breaking, but most of the time, our system seems to be working pretty well.

She also got a vest which fills with air (think blood pressure cuff) and vibrates, loosening up all the stuff in her chest and encouraging her to cough. We use it 20 minutes twice a day after breathing treatments. Most of the time she thinks it's funny and doesn't mind,

In other news, Eliza celebrated her third birthday,

She rode her bike around the house for a month,

With Virginia chasing close behind,

Findley built a swing on one of our magnolias,

 We have been cooped up in the house for FIVE weeks with pneumonia. Before you panic, let me tell you that Virginia has been 100% healthy. It is Wills and Eliza who have been sick, sick, sick with a nasty bacterial pneumonia. Eliza had a relapse on Sunday, but after a shot and a new oral antibiotic, seems to finally be on the mend.

We have done every craft project possible,

We also celebrated V's birthday in the midst of the sickness. My parents, sister and I took her to the Botanic Gardens to escape the plague and make her feel special on her big day,

She got a few presents, too,

Virginia's Birmingham friends sent her a package of gifts. I cried while we opened them. She misses being surrounded by those special girls. Here she is in her shirt from Lauren,

We have actually spent quite a bit of time at the Botanic Gardens lately,

And we had some special visitors this past weekend,

And Findley figured out that the suspension bridge at the Botanic Gardens is sort of like a roller coaster,

 

 

Party Girl

It's hard to believe V is eight years old today.

It is safe to say that Findley and I experience a wide range of emotions on October 3. I think everyone who loves Virginia does.

But for Virginia, there was only one emotion: joy.

Thanks to all who helped us celebrate. For once, I will let the pictures do the talking. (or most of it, anyway!)

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On Friday night, the second grade girls joined us to watch the first High School Musical on the big screen.

We started the night off with cake.

Someone was very excited about the cake (and no, that is not her beverage)

Can you see her smile in the middle of all the mayhem?

A few brave souls got up to dance...

So obviously Virginia wanted to dance, too

Eliza has her own moves

It was a challenge to live up to Friday night, but the 'birthday weekend' continued Saturday morning with a few early presents from Geegee, who came to help with the party. V's favorite: Nancy Drew books on CD. She is my child, I tell you!

Followed by an old family favorite, the car wash.

Spent the rest of a beautiful afternoon at the botanical gardens

Virginia fielded many calls of birthday love today

It was hard to break away from the phone, but we finally did. I took my princess to see the real royal family.

If you haven't seen the FIVE lion cubs, you should. They are mesmerizing.

Her favorite gift was from Eliza

She had a great day, even though someone stole her new Missoni for Target rain boots.

No Strings Attached

Sometimes I dream about what Virginia's life would be like if she didn't have cerebral palsy. I imagine her talking, running, and playing. I wonder what it would feel like to her to be able to roll down the hill in our front yard with Wills- or just to be able to roll over and go to sleep.

Invariably, my thoughts turn to myself. What would it be like to sleep through the night on a regular basis? What if I didn't have to spend all of my time feeding and caring for Virginia?

When Findley and I were on our trip, there were two families there with three children essentially the same ages as ours. It hurt to watch the seven-year-old little girl as she swam in the ocean and played in the sand.

Wow. Virginia's life is so hard, I always think in such situations. Look how carefree life is for that little girl. Look how easy that family's life is.

We had a great time on our trip. We went to the same place we went on our honeymoon, so it was natural to compare our current situation to our life as newlyweds, almost ten years ago. If you had asked me then what I wanted for our life, I wouldn't have come right out and used the adjective 'easy', but that's ultimately what I had in mind. Healthy children, lots of time to spend with friends and family, and plenty of money to do all the things we wanted. Maybe I wouldn't have been quite that shallow, but I am pretty sure that is the gist of what I was expecting.

A life with no strings attached.

Last Tuesday Findley and I made a last minute decision to take the kids to Highlands, North Carolina, for the Fourth of July weekend. It was predicted to be over 100 degrees every day in Birmingham- that was reason enough for us to head for the mountains.

I spent Wednesday and Thursday cooking, pureeing, and freezing all of Virginia's food for the trip. We were exhausted on Friday morning because Virginia had been awake since midnight, but I figured she would sleep in the car. We strapped her wheelchair in place and hit the road.

Virginia fell asleep after about thirty minutes, but then Eliza let out a little yell and startled her. She went straight into a seizure.

Findley pulled the car over on the side of the interstate and I just held her in the passenger seat. Her lips got a little blue at times, but she never quit breathing. It lasted about four minutes.

When it was over, we turned around and headed home, not wanting to be stuck in Atlanta traffic or in the middle of nowhere North Carolina if Virginia had a cluster of seizures like she did a few months ago.

The truth is that there are many strings attached to Virginia's life. She struggles with the basics- breathing, eating and sleeping- not to mention all the added extras that give flavor to life. I long for her to be able to communicate with her friends or chase her brother around the yard. I can't imagine what it would be like if we could just take our family to Davenport's Pizza to meet friends like everyone else.

But what I couldn't have known on our honeymoon is that there is meaning to suffering. If we seek God in the midst of it, it is not fruitless. There is depth and beauty in our lives that would not be there if it weren't for Virginia's injury. Don't misread that- any one of us would lay our life down in a second if it meant she could be healed. I would never choose this for my baby. But in the midst of tremendous pain, I have seen God in ways I never imagined possible.

All the strings of Virginia's suffering keep us tethered to the Truth in ways I am only beginning to understand.

There are still times when I long for 'the easy life.' I crave the ability to take all three of my kids to the park by myself and watch them play.

I long to be doing something different and exciting with my time, not sitting down for the fifth, forty-minute feeding of the day. But if I listen to the Holy Spirit and not to the world, what could be more beautiful than serving the Lord through serving my child? Perhaps all of these strings keep me exactly where He wants me to be.

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We have done absolutely nothing this weekend. Virginia has been recuperating and we have been trying to make her happy. I put the kids in their July 4th clothes today to take a picture. Just figured I would confess that they didn't really wear them anywhere. Wills told me on Friday night that he wished he could have the seizures, not Virginia. Then he said he wanted God to look in the future and take all of Sissy's seizures and dump them into a bucket of water and pour them down the toilet.

I went to rest on the couch yesterday afternoon by myself. That lasted about thirty seconds.

Wills had a dance party with Virginia in the living room. He took her in there all by himself while I was in the shower. Yes, I let my five year old watch my twenty-two month old.

Wills actually watches Eliza better than I do. I couldn't find her on Saturday night and she was on top of the couch.

Just cute...

While we were on our trip, a tree fell in the yard. It has been there for almost three weeks now, but they finally started removing it today. Our poor neighbors. Right now in our yard, there is a huge, dead tree, an overgrown garden with corn (I don't think you can have corn in the city- oops), a crushed trampoline, and a gigantic tent. (more on the tent later).

Findley's garden has done really well. I get none of the credit, but we have tons of squash, tomatoes, okra, and peppers.

Happy Fourth of July to everyone! God Bless You!!

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!

She Gets It

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Last Monday and Tuesday were cold and rainy days. I don't think the sun even poked through the clouds once.

At that point I had not started my Christmas shopping or decorating. My house was covered with scaffolding, not twinkle lights. The yard had a nice dusting of sheetrock, not snow. And if any of my holiday party clothes are still in style, I wouldn't know it because my closet doors have been taped shut for over a month. {If you see me out and about, now you know why I have been wearing the same pair of jeans and gray sweater for weeks now.}

Last Tuesday afternoon, as I wheeled Virginia through the front doors of school to head home, I was overcome with a feeling of dread just at the thought of facing the rest of the day.

I struggled to get my large umbrella open and properly angled so that Virginia wouldn't get soaking wet. Wills jumped onto the side of her wheelchair and hung on tight, leaning his face in towards hers to keep his head out of the rain.

I was trying, unsuccessfully I might add, to hold the umbrella, push the wheelchair, and run to get the kids out of the rain. It wasn't fun and I was just not in a good mood.

But when I leaned around the umbrella to see if Virginia was staying dry, I realized that she was laughing hysterically. She literally could not get her breath because she was laughing so hard.

She didn't care if she got a little wet or if her hands were cold. Running through the rain with her brother was exhilarating and it was certainly more exciting for her than our usual trek home.

Wills went from complaining that I forgot his frog umbrella to squealing right along with Virginia and I quickly followed suite. Her laughter highlighted the foolishness of all that I had been stewing over.

I was reminded of something very important last Tuesday. Virginia is better at finding the joy in life than I am. Her circumstances are much harder than I could ever comprehend, and yet she is the first to celebrate.

She's not worried about what comes next. She's not preoccupied with mourning how hard her life is. She always laughs at the first opportunity.

I know that part of Virginia's joy is because she is a child, but I think part of it is one of the gifts God gave her. It is one of the saving graces of this otherwise impossible situation.

I also know that Virginia feels secure and loved in our family. She trusts us. This frees her up to let go of her worry because she knows we will take care of her. She knew on Tuesday that if she got wet, I would have a warm blanket and dry clothes waiting.

Well, Someone who loves me very much has my back, too. When I reflect on the low points of the last seven years {and there are a lot}, He was always present. Always ready to pick me up and dry me off.

I should feel safe in His presence, free to let go of my worries and more willing to laugh in the face of a cold, driving rain. But I struggle with opening my eyes to the joys of the present because I am so focused on the storms that may lay ahead.

No one would choose to have Virginia's struggles and there is obviously something sad about her forced dependence on us for her every need. But there is also something beautiful about letting go and trusting that you will be loved and protected.

Last Friday night Virginia was invited to a Christmas dance for all the girls in first grade. They had their make-up done, ran around the ballet studio, and then settled in to learn the steps to a short dance. I struggled with taking her because she can't dance. It would look weird for me to hold her the whole time, but her wheelchair is a little awkward in a conga line.

But I asked her if she wanted to go, and she did. I pushed her chair along with the other dancers for as long as I could, and when it got too complicated, we watched from the sidelines. She couldn't have been any happier.

Her attitude humbles me.

I went from worrying that the other mothers had noticed my love handles in one of the numerous floor to ceiling mirrors in the studio to having a wonderful time with my precious daughter.

She, who has everything in the world to be self-conscious about, is able to let it all go and celebrate life.

Virginia will never have most of what this world says is important, but she shows us that we really don't need it anyway.

"So the last will be first, and the first will be last." Matthew 20:16

Windows into Eternity

IMG_4620 There is a certain feeling I get that can only be described as timeless joy, bubbling up from somewhere deep inside of me. It has a twinge of nostalgia mixed in, and is accompanied by an overwhelming sense of security.

As a child, I can remember the feeling often came when my whole family was assembled at my grandparents' house, playing cork ball in the front yard and just enjoying being together. We would laugh as my grandfather "got his mojo working" and pitched a strike, and cheer when Nana finally emerged from the kitchen to take her turn at bat.

I can remember specifically feeling that way one snowy Saturday when I was in eighth grade. I had on my favorite Ole Miss sweatshirt, my first pair of GAP jeans, and some huge, gray wool socks I had stolen from my Dad. I had nowhere to go and nothing to do. It was a day to be with my family and through my fourteen-year-old eyes, it looked like all was right with the world.

Findley and I used to drive around Nashville on Sunday afternoons when we were in college. We would get on the Natchez Trace Parkway and just drive. We weren't in a hurry and we certainly didn't have a destination. We were in love and it was enough just to be together. Driving along, holding Findley's hand and looking at rolling green farm land, the sense of timelessness would hit me. This is it, I would think. I don't want this moment to pass.

The sense of nostalgia that is mixed in with my happiest moments comes from the fact that part of me acknowledges they are fleeting. In my grandparents' yard, I was aware that we wouldn't be kids forever. That 671 East Drive wouldn't always be the center of my universe. That one day in the not-so-distant future, I would have to grow up. Driving around the countryside south of Nashville, I knew Findley and I were enjoying stolen moments. That one day soon we would have to face new responsibilities and obligations.

In these perfect moments, I wish I had a freeze button for my life. In that split second when the feeling washes over me, I want to hit 'pause' and bask in it forever.

Even as a child, I realized there was an eternal component to these moments. What I was able to be a part of was too precious to be a fleeting afternoon, lived out, but then lost forever. I think God gives us glimpses, teeny-tiny glimpses of course, but true glimpses of the joy we will experience in heaven. Our soul knows that the joy and security we feel in special moments with loved ones are gifts from God, and are too extraordinary to be temporary.

After Virginia was born, I was afraid I would never know that feeling of true contentment again. That the feeling of looking at shooting stars with my cousin on the deck of our beach house or that of watching a storm roll in on my parents' back porch would be tainted by the sorrow that had invaded my life.

My fears (as usual) were unfounded. Often when Findley and I are making the rounds at night to check on our three sleeping angels before we head to bed, that feeling washes over me and causes my heart to overflow with gratitude and joy. Sometimes it sneaks up on me, like last week when all five of us were on a walk on the trail. I was pushing Virginia, Findley was pushing Eliza, and Wills was running along next to us. I tried to take a picture in my mind because when they are grown, I know I will return to it often.

I sense that Virginia feels these moments of timeless joy, too. Yesterday we were on a walk and she was in her baby jogger. The trail was quiet and cool and we were just enjoying being together. She tilted her head back, looked me in the eyes, and smiled her most radiant smile.

"I know," I said. "I love you, too."

In those moments I get great clarity. I don't see Virginia's disability. I don't think about the messy house I left behind or the two fussy little ones I will return to. I feel a tremendous connection with my first born, a deep love which has no limits. I feel a true communion with the Almighty and get a glimpse of what is to come.

When I look at the times in my life when I have had that sense of nostalgia, joy and security all packed into one incredible instant, they were never times of great personal success. They were moments shared with a loved one or times when the natural beauty of the world gave me a glimpse of God's glory. I would have felt those moments just the same even if I had been in a wheelchair. I was never good at cork ball anyway. What I loved was the security of being surrounded by my family, and Virginia has that, too.

My hope is that Virginia will recognize these moments of timeless joy for what they are- windows into eternity. And that she will cling to the promise that it is pain and suffering that are fleeting. The joy and love she feels will remain forever.

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Note: The best book on suffering I have read is Joni Eareckson Tada's When God Weeps. It is incredible. Joni talks about this same thing, but says it far more lyrically than I do.

"The delight I experience with my husband Ken is merely a hint, a whisper- a bite of chocolate- compared to the resounding joy that, in heaven, will sweep me away in a deluge of ecstasy... Every good pleasure on earth is but a shadow of its fulfillment in heaven." (p. 206-207)

"Heaven will not only be more than we can imagine, the "more" will go on forever. It will be timeless. It has to be; joy flows from God, God is eternal; therefore, so is joy. You instinctively know this when you are gripped by a timeless moment, an experience so precious, so perfect you wish it would last forever... Moments like these remind us of some other time or place... It's a yearning to pass through and reach the other side, as C.S. Lewis said. These moments- whether having tea on a spring afternoon or licking Popsicles and feeling safe- are whispering, 'One day you will bathe in peace like this... satisfaction will shower you... this joy will last forever.' This is what we as children feel. It's another hint of heaven, like choosing the happiest point in your life and having time stand still." (p. 208-209)

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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Somewhere in the Middle

(All the pics in this post are completely unrelated to the topic. But they are recent, cute and I wanted to share!)

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Finding the middle ground has always been a hard thing for me. If I let myself eat two oreos, I am likely to finish the whole sleeve in short order. If I start cleaning out dresser drawers, the entire house will be spic-n-span in a matter of hours. I tend to be either overcome with gratitude for the love in our family or absolutely grief-stricken at what Virginia endures. (I guess if you've been reading my blog for a while this isn't news to you.) Slowly I am beginning to live in the tension between these two extreme emotions.

Last night is a perfect example. Our downstairs air conditioner was broken, so we were all going to sleep upstairs. Wills was thrilled that Virginia was going to sleep in his room. I had taken the mattress off his spare twin bed and put it on the floor for Virginia so that if she fell off, she wouldn't have far to go. Wills was having fun jumping from his bed to the mattress on the floor, over and over again. Eliza was sitting on the mattress and she could not stop squealing at his antics.

In the meantime, Virginia was having a total come apart. It had started with whining and by bedtime, she was all out screaming. Findley was home from work, but try as we might, neither one of us could comfort her. She was tired; she had been up since 3 a.m., but I never really know why she screams. The last few times she has gotten this upset, she has thrown up, so we took her in the bathroom in the hope that another rug wouldn't be ruined.

So, there you have the two parallel universes of the Frazer house. Findley was sitting on the edge of the bathtub holding Virginia, gently rocking her, desperate for her to quit screaming. I sat on the floor holding her jaw so that it wouldn't get stuck as she screamed. Every now and then, I would peer around the corner to check on the little two and I just had to smile. Wills was having a great time jumping from the bed to the mattress and Eliza couldn't have been happier watching him.

I am called to find joy in the midst of suffering and to create a balance between the two. Somehow I have to share in Wills' and Eliza's joy as they play even though a part of me is weeping because I want Virginia to be included. I want her to be excited about a slumber party when instead she is struggling to live.

These situations present themselves all the time. Virginia lasts about twenty minutes on the beach because it is just too hard on her body. She ends up in the house watching a movie while Wills builds castles and looks for shells. It's not fair, but there is no way around it. Wills and Eliza shouldn't have to miss out because of Virginia, but it hurts when our family isn't whole.

My all or nothing personality makes it very difficult to strike an emotional balance, but I must do it because the health of my marriage and the happiness of my children depend on it. The middle ground is the honest place to be because there I am dealing with both the sorrow of the fall and the joy of the redemption. To leave out either one would be to miss an essential variable in the equation.

When Virginia is screaming, I want to bury my head in the sand and pretend I don't hear it, but that's not a choice. It would not be tenderhearted toward Virginia or respectful of my own broken heart to stick in earplugs and skip down the hall and ask Findley what he wants for dinner. Nor can I get in bed and start crying and never get up again. That's not a choice either.

So there I find myself, struggling to live life in the middle. At times experiencing pure joy, yet at other times allowing the sorrow to find a place to stay for a while. I used to think that eventually the pain of what happened to Virginia would go away. That if I prayed enough and sought enough wise counsel on how to best handle things, one day my heart wouldn't break with the crying. But sometimes it still does and I have realized that is ok.

To be fully engaged in this world means that we all experience both deep hurt and incredible joy every day. We must strive to live in the tension between the two instead of barricade ourselves in one direction or the other.

A very wise friend introduced me to this verse yesterday and I love it:

"I am sorrowful, yet always rejoicing."  2 Corinthians 6:10 (NIV)

and I also really like the New Living Translation:

"Our hearts ache, but we always have joy."  2 Corinithians 6:10

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Which Words Would You Choose?

I am a talker. Always have been. I have no idea how many words come out of my mouth in a day, but it is a lot. My impulsivity to speak has gotten me in trouble on numerous occasions and it is always at the top of my list of things I need to work on.

I am also slightly picky in how I like things to be done. The combination of these two things means that I spend a lot of time giving directions barking orders.

"It's too hot in here. Will you please turn the air up?"

"Do you think Virginia looks comfortable in her chair? I don't."

"The only thing I want for dinner is a Billy's Sante Fe salad."

Since Virginia is unable to utter even one word, we have lots of what her speech therapist calls 'conversation boards.' Imagine a large, hollow square sitting on the tray of Virginia's wheelchair. Her conversation partner sits opposite Virginia with her face in the hole in the middle of the square. Around the left, top, and right sides of the square are words. Virginia uses her eyes to look at the word she wants to say or she might even look at three words consecutively to say a phrase.

Each board has thirteen words. On most all of them, the words 'more', 'want', and 'finished' are three of the words across the top. We have boards on many different topics, including the weather, Disney World, movie watching, book reading, craft making, and eating. You get the idea. Each conversation board has the thirteen words on it we think Virginia would be most likely to want to use in conversing about that certain activity.

I want to create a board for use at all times. In other words, one that she can always have in front of her if there is something she wants to tell me. This one won't be activity centered. So what thirteen words should I put on it? If I could only say thirteen words, what would I want them to be? What would I need them to be?

Our family went on a long walk yesterday. I probably said ten thousand words over the course of that hour walk. (Wills said a million words, but that's beside the point.) I asked Findley to stop so I could straighten a sock that was bunching up in my shoe. I asked him to stop so I could drink some water. I gave directions about which way I wanted to walk and on what I wanted to eat for dinner when we got home. I pointed out that my wrist was hurting, the my knee was a little swollen. (I know, I'm high maintenance. But don't feel sorry for him. We dated long enough that he already knew this when we got married.)

My point is, I need lots of things to go my way in order for me to be content. Virginia was yesterday and is in general just along for the ride. She can fuss to express her displeasure and we can play twenty questions to try to find out what is troubling her, but she has to let a lot of things go. She can't tell me that her shoes are too small or that she has a headache. I have no idea if she's hungry, much less what she wants to eat for dinner. And yet she is usually happy. So very happy.

I need to let a lot of things go, too. I need to relax more and just be along for the ride. Thinking about Virginia's conversation board has made me wonder if I had to get by on just thirteen words, would I still feel like smiling as much as she does? In choosing thirteen words, you have to get right down to the heart of the matter. To what's really important in life. But with no words at all, Virginia still speaks volumes about her attitude towards life with her megawatt smile.

I have never asked a question at the end of a post, but know that this one is not rhetorical. I really want an answer. What would your thirteen words be??