Ten

Virginia turned ten almost two weeks ago. It is hard to believe. Ten was a harder birthday for Findley and me than most of the recent ones have been. For some reason, on that night of October 2, we feel like we can go back in time and protect her from harm, but we can't. And then dawn breaks on the third, and we are ok. Ready to press forward because what is done is done. Wow, we've made it ten years!  Or,  wow, we've been doing this for ten years...

Mom, Ginny, Eliza and I spent the day with Virginia at the Botanic Gardens and then we celebrated with family that night. Most of our other family birthday celebrations revolve around food, and it is tough to figure out how to celebrate with someone who can't safely swallow. We all ate banana pudding with her and watched Herbie the Love Bug.

I'm not usually one for a numbered post, but here are ten things I've been thinking about lately. Call it '10 for Virginia's Tenth.' Be advised, I have a feeling this is going to be all over the place.

1. Eliza and I were at the grocery Labor Day weekend and I ran into an old family friend. She has a daughter named Virginia who is only two months younger than our Virginia. I introduced Eliza to the other Virginia and her mother. Eliza smiled, we all chatted a minute, and then moved on with our shopping. A full ten minutes later, she looked up at me from the cart and I instantly knew what was coming.

"Mommy," her little voice quivered, "why can't my Virginia walk? I want my Sissy to walk."

Somehow she knew that the other Virginia was the same age as Sissy, even though I didn't tell her. And for the first time she realized that it was supposed to be different for Sissy.

It is strange to me that Wills and Eliza will grieve something that happened before they were even born, but they will.

All I did was stand there in the midst of the salad dressing aisle and cry with her. I told her that I wished our Virginia could walk too, but we love her no matter what and she's still the perfect Sissy.

It's sad. I can't take it away. So I don't try to explain it away either.

2. My sister got married and my brother passed the BAR exam. Lots of celebrating for our family.

3. Eliza turned 4 in September. I can't believe that my baby is so big!

4. I got to go to Colorado with my best friends from high school, minus one who was home with her sweet baby who has a dislocated hip. We missed you a ton, Anna, but if you had been on the hike, I don't think we would have made it back. It was a deceptively rigorous hike and we kept laughing hysterically and if you had been there cracking jokes, we seriously would have ended up down a gully somewhere.

Bev and I were a little afraid pregnant Clare was going to fall off a cliff,

Tripp, I think A needs one of these cars,

5. On the aforementioned trip, we talked about regrets. My biggest regret is that I didn't do a good job of figuring out who I was a little earlier in life. Here's a confession. As recently as a year ago, I decided I was going to go to medical school. I started taking classes so I could apply. Even seeing those words in writing seems ridiculous. I hired extra help, and decided to go for it. Six weeks into my classes, Virginia got pneumonia. I could have worked it out, but I remember sitting there, holding my coughing, feverish daughter, as the babysitter assured me she could take care of Virginia while I went to three hours of classes. And I realized. This is stupid, Abby. Are you really going to miss these moments in pursuit of your own dreams? Because having a family with Findley was one of your dreams, too. Actually it was your biggest dream.

Over the last year, I can finally say that I am at peace being a stay-at-home mom. I wish I had realized that in college (or shortly thereafter) and saved myself the burden and angst of feeling like something was missing or that I wasn't measuring up. I would love being a doctor. But when I think about my personality, there is no way (even if Virginia were healthy) that I could do both. Lots of my friends are great doctors and lots of Virginia's best doctors are women. There are women who can do both and do both well. But I would not have been one of them. I could never leave a child with a nanny or leave a patient in the hospital to go home to my family. Either would rip my heart out. So it is a good thing that I am right where I am.

Of course there are other things I would like to pursue- like writing a book or helping Memphis get a pediatric neuromuscular rehab center off the ground- and hopefully those things will happen in time. But if they don't, I will be fine.

6. I realize more every year that you only get to live each moment once. You get one chance and then that ship has sailed. I am trying to do a better job of being present for each one. Which leads me to my next point...

7. This is old news, but I think social media is doing terrible things for our society. I got off facebook over two years ago. I have not missed it at all. (Now when we were in Colorado, and friends posted pics on their FB page and people starting saying how young we looked, I definitely missed that...) For the past 3 months, I have hardly used my computer. I do not take my iPhone to bed or look at it first thing in the morning. Guess what? I have read 15 books. And I am happier and more peaceful. I swear these iPhones are going to be the death of us and our children. No one can concentrate. There is no work ethic or drive because everything is instantaneous. I am cutting back on my interaction with the outer circle so I can be completely present for my inner circle.

8. I will never be thankful for what happened to Virginia. I am, however, thankful for her life and for many things that have happened since.

9. In the last ten years, I have become a lot less judgmental and I follow a lot less rules. Findley and I believe much different doctrine than we did ten years ago, and, no pun intended, thank you, Jesus!

10. Like everything else in life, the grieving process is not black and white. You don't ever truly move past a tremendous loss. You learn to manage it, you learn not to think about it all the time, and you learn to focus on the things you do have control over. If you hand your suffering to God, it will not be wasted, but knowing that doesn't necessarily make certain situations easier or less painful. Suffering is a necessary and beautiful part of life, but nobody wants it, especially not for their child.

and a late-breaking number 11: Disney called and we are all set to go for our trip. They listened to our concerns, and then they waved their magic wand and made some special things happen for Miss Virginia and the rest of us who are lucky enough to be her escorts. They are the best!

So....there you go. Anybody hang in there for that whole thing? :)

 

 

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,

 

 

Like A Child

Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it." Mark 10:15

Wills does not grasp the permanence of Virginia's condition. Yesterday I overheard him asking her if she would drive him around when she got her driver's license because she would turn 16 before he did. He also frequently says things like "when Sissy doesn't have her feeding tube anymore" or "when Sissy learns to talk."

Wills, like most children, doesn't look too far in the future, thus allowing him to take things one day at a time. It's much easier to enjoy all that is set before us on any given day if we aren't weighted down by worry about what the next day holds.

It is how we are called to live. Childlike and free of burden.

Yet at the same time Wills is starting to ask questions for which there are no answers.

He was drawing at his little table in the kitchen last week and I was standing at the stove. {Although I haven't cooked a meal in about a month, so I don't know what I was doing at the stove. But I remember I was definitely standing there!} Out of the blue he asked, "Why doesn't God heal Sissy so she can get out of her wheelchair?"

Obviously I didn't have an answer for his question, but we talked for a long time about how much God hates sin and how He cries over Virginia's suffering more than we do. I assured him that ultimately God will triumph over all the pain in the world, in fact He already has, but I know it's hard for him to understand because it's hard for me to understand.

About three hours later as I was putting him in bed, he said, "Mom, I wonder what the final tear will be."

"What are you talking about?" I asked him.

"You know," he said. "I think God gets sad watching people on earth cry because their heart is broken. I think there will be one last tear and then He will say, 'Enough!' and send Jesus back to get us."

I know a lot of people who are suffering tremendously right now. A friend with two small children about to start her first of six chemo treatments for breast cancer. Another friend who also has two small children battling aggressive ovarian cancer. A friend whose second grade son was diagnosed with Asperger's syndrome this week. A friend whose 2 year old son is entering his sixteenth week in the hospital for complications from e coli.

Who will shed the last tear?

But what I love about Wills is that he can ask me that question one minute and the next minute be digging for worms again.  At this point in his life, he doesn't let all his questions overwhelm him. He is thinking hard, but still has a blind trust in God and His goodness.

He doesn't have to see to believe.

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Wills got ahead of me at the botanical gardens last week and this is where I found him,

He loves to climb trees right now, but we really don't have any great climbing trees in our yard. However our new house does. We took the kids to see it when we were in Memphis over Easter and this is as far as Wills made it,

This one is giving me fits,

She will pour her water all over her pjs and sheets so that I have to get her out of bed and change everything. Or she will call into the monitor, "Mommy, I am about to start ripping up my book. You better hurry up here." Yes, that is exactly how she says it and, yes, I am trying to figure out how to start calling the shots around here again, but not having much luck. Part of the problem is that she's so cute and so funny and she knows it!

And Virginia hasn't really been going to bed very easily lately. So we go get her and bring her back into the den with us,

Could you put that smiling face back into bed? Her daddy can't, that's for sure!

Happy weekend!

How We See Her

My dad's oldest brother, Jack, died on January 29th after a three month battle with cancer. I, along with two of my first cousins, had the privilege of driving my grandfather from the memorial service to the graveside because his knees kept him from being able to climb into the car in which my grandmother and their other three sons were riding.

There is one thing Poppy said during that car ride that I will never forget. He said that it felt just like yesterday when he was tucking his four boys into bed and kissing them all on the head.

I realize that I am 33 (gasp!) and not 89, but I understand how he feels. I cannot believe how quickly life is moving along, particularly that Virginia is already 8 years old.

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Findley and I were talking in the car on the way to Memphis for Easter about how we see Virginia differently than most other people see her.

People are always saying things to me like, "Oh, but she's so happy" or "I am so glad you are her parents."

Well, yes, she is usually pretty happy, and I am certainly grateful for that, but my other two children are happy also. And I am glad we are her parents, too, but we would have been her parents even if she had been spared such a devastating brain injury.

Please don't think I am offended by either of those comments, but Findley and I realized that they illustrate the gap between how we see Virginia and how everyone else sees her.

I think it is very easy to see our family walking down the street, with Wills and Eliza making Virginia laugh by hanging off either side of her wheelchair, and smile. Yes, sometimes it brings tears to my eyes that she is here and clearly very well loved by those of us around her. (And she loves us well, too, by the way.) But there are other times when Findley and I look at her and see what was taken.

See, we knew her before she was injured. Or, maybe I should say that we dreamed of her before she was injured. Most of you have never known her any other way, but we have, and sometimes it is hard to look at her and not acknowledge great loss.

We have 2nd Grade Girls' Bible Club at our house on Friday afternoons. I do nothing except open my front door. Other mothers do all the teaching. It's a pretty good deal, actually. Sometimes Virginia makes it through the entire lesson, most times she doesn't. It is hard to watch her peers sing praise songs, ask questions, make prayer requests, and recite their memory verses. It is hard to watch them run around my front yard afterward, and break off into little groups for Friday night slumber parties. I would be lying if I said I no longer mourned what was taken from Virginia.

Sometimes Findley and I look at Virginia and see the healthy little girl that should have been. The thriving second grader without a care in the world. We wonder if her voice would have sounded like Eliza's or if she would have been artistic like Wills. We wonder if she would have been calm like her daddy or high-strung like me. What would she tell us everyday when she bounded in the front door from school?

I am aware that we have to be careful. We can't let remembering what was lost keep us from embracing what is here. There are a million things that we love about Virginia, and in some ways, she and I are closer than we otherwise would have been. I am her arms, her legs, and her voice, and she is my heart. But how I wish that she had been spared all this suffering and not robbed of her autonomy!

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I know that as a mother I hang onto some of the best moments and hope I can still remember them when I am in the nursing home. Our minds have a way of clinging to the beauty of life, the glimpses of eternity, so to speak.

That's why Poppy remembers the 66 year old man he lovingly called #1 son* as a blond little boy waiting up for a story at bedtime. It is life in its simplest form, our children in their purest moments.

Findley and I will always remember the Virginia that we had dreamed of, a Virginia without limitations, a Virginia untouched by the suffering of this world.

Thankfully there is Someone else who sees her this way, too, and it gives us great peace to know that one day His glorious vision for her, and for all of us, will come to fruition.

*I am #1 grandchild, just in case there was ever any doubt!:)

(I apologize for the two grainy photos. Yes, I took a picture from a movie using my iPhone. We didn't have a digital camera when Virginia was born, and I have yet to scan most of them onto my computer. And even if I wanted to do it tonight, I couldn't because all my photo albums are stored in the basement so that my house looks spacious and lovely and someone will want to buy it. Anyone else notice that Findley had a lot of hair when Virginia was born and that I was wearing an athletic watch- I guess I must have exercised back then???)

Imperfection

I always write about 'embracing suffering', but it is obviously something we have to learn how to do. I will admit that often I don't know exactly what it looks like.

I had a rare (especially lately) moment of clarity over Thanksgiving weekend that I wanted to share.

I haven't written much about my childhood, but I will briefly say that it was pretty special. My dad is one of four boys, his mother is one of four girls, and we always had a house full of aunts, uncles, cousins, second cousins... no one ventured too far from the family compound. If I wasn't at my house, I was 'up the hill and around the corner' at my grandparents, either working a puzzle in the kitchen with Nana or doing physics experiments in the shop with Poppy.

I wasn't naive enough to think that life was perfect for our clan (don't worry, family- I am not about to throw out any skeletons!), but I certainly thought that the beauty around me was in the perfection. That 'wonderful' was an appropriate adjective for our lives only because everyone was healthy, happy and successful.

Until recently, I still felt that way.

When I looked at my own life, what jumped out at me was Virginia and her suffering. It was the piece of the puzzle that didn't fit, at least not as seamlessly as the other pieces. It was where my life changed course, got off track. To put it bluntly, it was the part of my life that couldn't be summed up with the adjective 'wonderful.' (and obviously I am talking about what happened to Virginia, not Virginia herself.)

As we all gathered at my parents' house this Thanksgiving, there was more visible suffering than there has been in the past. I now know more physics equations than Poppy does, and we had to make room for three wheelchairs around the table. As Dad asked the blessing, he prayed especially 'for all those who are suffering.' Foremost in all of our minds was my uncle who is in the midst of radiation treatment for cancer, but when I looked around the room of at least thirty people, I realized that Dad's description included each of us. Every single person in attendance was dealing with their own shattered dreams.

Suffering isn't the unexpected detour I used to think it was. It is woven throughout this entire journey.

And, quite miraculously, suffering is what makes this journey so beautiful.

I realized last Thursday that it is wrong for me to put the events of my life into two categories- before Virginia was hurt and after Virginia was hurt. The true delineations of joy and suffering are much more complex.

Obviously I would erase what happened to Virginia if I could, but 'embracing suffering' means beginning to see it as an integral part of the larger picture. Pain is not a brief interloper, coming in moments of tragedy to steal the beauty from life. If you open your eyes, suffering actually magnifies life's beauty in a way nothing else can.

Our Thanksgiving table wasn't beautiful because our family is perfect. It was beautiful because our family is imperfect.

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

A Day in the Life...

Several things over the last few weeks have just about done me in. The first was a play date I organized for Virginia. We invited two girls from her class over to play. They are the sweetest little girls and they love Virginia to death. You can tell that they are genuinely thrilled when she smiles or laughs with them. They talk to her as if it doesn't even bother them that Virginia can't respond.

But she can't.

I listened to these two first grade girls converse- true friends, sharing their day with each other- and felt such sorrow that Virginia couldn't be a part of it.

Then she got invited to a birthday party she logistically can't attend. I love our school friends and our community because they always include Virginia, even when they know she probably can't come. I love this mother for thinking of her. But I am so sad that she can't go.

Sometimes it all seems like too much for her, and for me. I don't want to struggle through one more hour long feeding. I can't bear to hear her cry at night anymore. I don't want to get out of bed in the morning and face getting her showered, dressed and fed.

I can only imagine how she feels.

I started thinking about what my day actually looks like, and, as vain as it sounds, decided to try to document it. I wasn't doing it for the blog. I just wanted to try to put my finger on what has been so hard for me lately.

In the process I realized something pretty incredible.

I could find whatever I was looking for- both the good and the bad.

I could go through, pick the awesome moments, snap a smiley picture, and pretend my life is perfect. Or I could take the bad pictures, focus on all of Virginia's struggles, and tell myself I should just throw in the towel and never get out of bed again.

Obviously, the reality, for all of us, is somewhere in the middle. All of our days lie somewhere in the tension between joy and sorrow. Clearly some days are better than others, but really it boils down to whether or not we choose to be thankful or we choose to be angry.

So here is my day...

5:10 Findley's alarm goes off.

5:38 Findley leaves for work (I did acknowledge him before he left, but he definitely made his own coffee)

6:20 Virginia wakes up (a miracle- this is the latest she has slept in months. Usually I see this sweet face between 3 and 4 am)

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I repositioned her and then showered and dressed.

Just as I was getting V dressed, Mr. Bed Head appeared in the doorway. (about 6:50)

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I fixed Virginia's cream of wheat, packed her snack and Wills' lunch, fixed V's medicine, and spent about thirty minutes feeding her.

7:45 Eliza wakes up.

8:00 Get Wills dressed, change V one last time, ready to leave

Eliza doesn't want to be left...

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Until she spots the chocolate chips on the counter and has an absolute meltdown and refuses to go one step further until I give her some. And, if you read the last post, you will know that I don't hesitate.

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8:15 Head to school (for the record, school starts at 7:45, but this is the best I can do when Findley leaves so early)

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Go by Starbucks (for the first time in a month) and get coffee for myself and a new friend. Go visit friend for two hours. Get to hold a very special baby.

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11:30 Home, time to get Eliza dressed for the day (and play "where's the baby?)

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Play outside with Eliza, water plants

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For the record, this is what the finished garden looks like

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Then I get the shovel out.

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Unfortunately, the shovel has to do with this:

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And not with the garden at all.

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12:15 Time to puree V's food so it will be ready for her when she comes home at 12:30. Yummy- leftover tenderloin and cheese grits.

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1:00 I send Amy and Virginia off to speech therapy in my car.

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I put Eliza down for a nap and leave her under Mary's watchful eye. I take Wills and his friend to a 'get ready for kindergarten' play date at the park for an hour.

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Wills and Eliza have a 3 o'clock doctor's appt, so we rush home, drop off the friend, and get Eliza.

She is waiting for us...

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We rush off, are about fifteen minutes late (typical), and they have to get 7 shots between them.

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Ring pops are great for pain.

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5:00 Arrive home to this sweet face

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I hand Wills and Eliza off to Amy and sit down to spend about an hour feeding Virginia her dinner, pureed chicken fingers and macaroni and cheese.

6:00 the best part of Eliza's day (and mine, too)

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6:15 Head outside to get some energy out before bed. So glad it is spring.

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Making up for the entire afternoon I missed with her today...

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The little two play while we get Virginia into her pjs and give her nighttime meds.

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7:35 Nurse Eliza to sleep (Yes, I still nurse her 3 times a day, but she sleeps twelve to thirteen hours, so why change anything?)

Winding down...

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7:50 Try to read Virginia and Wills a book. V gets mad (not sure why), so she has to go on to bed sans book reading.

8:15 Put Wills in bed, say prayers, sing exactly four (not too short) songs

8:20 reposition Virginia

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We heat plates of leftovers. Yes, it is always this late when we eat.

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Don't really want to eat b/c V is crying so hard. Settle for this instead.

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8:30 hold Virginia, try to calm her down

8:45 Findley puts V on her stomach instead of back

9:00 I put her on her side. Still can't hold still to fall asleep

9:30 After several more interventions, V asleep; time for me to wrap up world's most boring post

Oh, wait...get rest of tax stuff together for accountant. We are sure giving her plenty of time this year.

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Obviously, out of love for my child, I don't show the fussy times. I can't capture her feeding struggles or communication difficulties on my iphone, nor would I want to. I hate it when she cries more than anything in the world. But I do know this. I am one blessed mother who got to see a lot of smiles today. A lot.

Good night!

**This was not a typical day in four ways. 1) I showered because I was going to my friend's house to hopefully hold a new baby. 2) I did not go to the grocery store today. Usually I go at least twice. 3) Virginia slept until 6:20. If she does that again tomorrow, I will document my day again. 4) I did not talk to Molly or Laura on the phone. So sad!

Superhuman Dedication

IMG_0477 Thanks for all the inquiries about Virginia's new communication skills. I wasn't trying to be secretive. I was just putting it off because I knew it would be tough to explain. But I am going to try. I could write a novel on our experiences with therapy- speech, physical, and occupational. But for today, I am going to attempt to stick to the facts of our new communication plan. Let's see if I can stay on task!

First, a little background info. When we moved to Birmingham in December of 2004, the first thing I did was call Lynn Roebuck at UCP. She is a speech therapist who specializes in children who need augmentative communication- in other words, children who need to communicate with something other than their voice. Lynn was actually one of the reasons I wanted to move here.

Virginia and I went for our first meeting with Lynn in February of 2005. As all of you special needs parents know, I proceeded to answer a million questions about Virginia's delivery, which specialists we saw, and what her diagnosis was. Now I politely refuse to answer these questions most of the time because it doesn't really matter, but back then I painstakingly went through every detail of her apgar scores, days on a ventilator, seizure history, etc.

The main thing I wanted Lynn to know was that everyone thought Virginia was brilliant.

Lynn looked at me and said something like, "Usually motor skills and cognitive skills are related. It would be hard to have this many physical problems and not have some mental challenges as well."

And I said something like, "Tell me something I haven't heard before, fool." (Just kidding- I think I said, "Let's see what you think after you evaluate her.")

I am sure Lynn was laughing inside at this controlling mother, but I also know she immediately grasped both my devastation and my desperation.

Lynn proceeded to evaluate Virginia in the best way she could. She would make an animal noise, and then hold up two stuffed animals and ask her which animal made that noise. She did so well at that, we moved to four pictures taped to a piece of PVC pipe.

"Where's the chicken?" Lynn would ask.

Virginia would look right at the chicken.

Then Lynn got out a huge baby doll.

"Can you look at the doll's feet, Virginia?"

And Virginia would look at her feet and smile.

By the end of the hour long session, Virginia had won over the person who would become perhaps her biggest advocate, Lynn.

"She's smart," Lynn told me at the end. "In fact, I've never even had a 15-month-old typical child do so well with four picture choice making the first time around. I agree- I don't think she has any cognitive deficits."

For the next two and half years, Lynn worked with us on picture symbols, eye gaze frames, and big button talkers. (Button looking devices that you program a message in "come here, mom" or "more, please" and when Virginia would hit the button with her hand, it would say the message.)

But I am not going to lie- things were really hard. I don't think anyone, including me, has a clue about how difficult it is for Virginia to control her body. If you took away my voice, I could point or move in the direction of what I wanted. I could use my eyes. Virginia's motor skills are less than a three month old's. Even her eyes are not dependable.

Around the time Virginia turned four, Lynn quit for two years to have two babies in eighteen months. During that time, we went to Atlanta to Scottish Rite's Augmentative Communication clinic and their team decided Virginia could use a communication device called a Vanguard. It looks like a laptop and attaches to her wheelchair. Essentially there are picture symbols on a screen and Virginia operates the cursor with a metallic sticker on her forehead. If she allows the cursor to dwell on the picture for a set period of time (4 seconds), the device would say the name of the picture out loud. (For example, if she held the cursor on the picture of bubbles, it would say bubbles.)

Virginia with the Vanguard, age 3 1/2

We worked with the Vanguard for two years, but I never really felt like things got any better. Obviously, this was (and still is) a complicated situation. I am about to digress again, but I feel like this is an important piece of the narrative. For starters, Virginia is a child. Children are unpredictable and you can almost never expect one hundred percent accuracy from them. I know Wills can count to one hundred, but there are plenty of times he won't do it for me. We always want Virginia to give us a definitive answer. "Do you want to watch Bedknobs and Broomsticks or Davy Crockett?" But maybe she doesn't want to watch a movie at all. Or maybe (like her mother and generations of women before her) she can't really decide which movie she wants to watch. Until you get really good with a speech device, you are unfortunately faced with very limited choices.

Communication devices are very unnatural. They are hard to incorporate into the life of a family. Findley and I are also good at understanding what Virginia wants. We can almost always tell what she wants. Therefore, there is little motivation for us (or for her) to go to the trouble to deal with some of these devices. And as my dad always says, "There are only so many hours in the day."

Every day that Lynn was gone for those two years, I prayed she would come back. I tried not to call her too much because I felt like she deserved her time with her family, but we really missed her.

When Lynn called me in the fall of 2009 to say she was coming back, I was ecstatic. Honestly, over the time she was gone, we hadn't done very much to advance in the area of speech. We were using eye gaze to communicate at home and school. We could hold up ten words (around a frame) and ask Virginia to identify a certain word, and she always would get it right. In the same manner, we knew that she could even spell on an age appropriate level.

When Lynn came back, she really rocked the boat. "Abby, who cares if Virgina can spell 'there.' I want her to have power. I want her to have a voice. I want her to tell Wills to leave her alone. If you and the school keep quizzing her all the time, she's going to quit responding because she gets nothing out of it."

Lynn had hit the nail on the head. All of a sudden, I felt so guilty for the hours I had spent 'testing' Virginia on spelling and numbers. Didn't I care more that she could tell me how she felt or what her day had been like? Obviously we all did, but how would we get there?

Lynn spent several sessions with Virginia on the Vanguard and decided it was too frustrating for her. "Abby," she told me, "Everything else is so hard for Virginia. If communication is frustrating, too, she'll never do it. This thing is way too hard for her." Findley and I totally agreed.

Last summer, at Lynn's direction, we rented a device for a month that has an eye tracker. Instead of controlling the mouse with a sticker on your head, you control the mouse with your eyes. Well, it didn't work either. Lynn and I couldn't even get it to calibrate to our eyes effectively, much less Virginia's. I do think that if the technology gets better over the next ten years and Virginia matures a little bit, the eye tracker might word for us. But definitely not yet.

In the meantime Lynn has continued to work diligently on access. In other words, how can Virginia best control her world? About eight months ago, she finally started to have some success with a head switch. The head switch is a little button next to her head that can plug into all sorts of different things and give Virginia some power. She can click it to turn her ipod on. She can read a book on her computer and click it to turn the page. There are tons of games on her computer that help Virginia's timing with the switch. If she hits it within 4 seconds of being cued to do so, her favorite song will play or something funny will happen on the screen.

Well, she is now about eighty percent accurate with the switch. Yay.

Working on her computer

For the first time ever, Virginia can do something physically when she wants to- she can use her head switch. So Lynn attached a voice output device to her switch that says, "yes." Now Virginia can say 'yes' when she wants to. Not such a big deal because you can tell by her smile if she is saying yes, but still progress.

So then Lynn added a second switch, attached to a voice output box that says 'no.' So now Virginia can tell us 'yes' or 'no' whenever she wants. Sometimes she hits 'no' by accident because she naturally pushes to that side when she is happy or mad, but I think she will gradually get just as good with the right side as she is with the left.

The yes/no switches

(Let me just say that if you are still reading, you are either a speech therapist or deserve a medal. This is the longest post I have ever written and I am sure extremely boring.)

Now that Virginia has use of two switches, she can start to do two new things. The first is called step scanning. She can look at a series of words (or images) on the computer and use one switch to scroll through them, and the other switch to select what she wants. Step scanning is slow, but is a viable means of communication for some people.

The second door that has opened for Virginia is a system called PODD. Virginia needs a partner to communicate in this manner, but most people need someone else to talk with anyway. (Except for me, I always talk to myself. A sign of brilliance, they say, or insanity...) PODD was developed by Gayle Porter, a speech therapist in Australia for kids with multiple difficulties communicating. One of the first things she did was organize language to make any phrase accessible in as few options as possible.

We start by asking Virginia if she has something to say.

If she says 'yes', we move on to the next step.

"Is it a quick word?" her partner would ask.

If Virginia says yes, we move to the list of quick words.

We always say things in the same order, so Virginia can learn what's coming. There is also a book she can look at too, but if it's a day when she is having trouble with her eyes, it can be all auditory.

The list of quick words might be 'funny', 'hungry', 'potty', 'home', 'mom', 'movie', etc.... and as she gets better and better, we add more and more words.

If Virginia says no to 'is it a quick word?', we move on to 'is it a question?'

If she says yes, we move to the corresponding list of questions.

The system is organized in way that Virginia can pretty quickly- in as few responses as possible- get to the heart of what she wants to say. It's like that game (I can't remember what it is called) that in seven questions can guess what word you are thinking of, no matter what it is.

Lynn and I are going to Chicago in July for more training on PODD, but we are already getting started. It will take Virginia (and all of us who are her communication partners) a long time to get the hang of this system. We will all make mistakes, but for the first time ever, I feel like we are on the right track. I know that she can do her yes/no switches, and therefore I know she will eventually be able to communicate using the PODD system. There are videos of children even more severely involved than Virginia doing PODD effectively, and that gives me a lot of hope.

There are many, many times that I have been very down about all of Virginia's therapy, especially speech. Lynn and I have been through a lot together. We have chased a lot of rabbits. Sometimes it seemed like what we were working on had nothing to do with actual communicating. When I would complain to Lynn about this, she would say, "I am just filling the cup, Abby. Just filling the cup. Hopefully one day, it will all come flowing back out."

In fall of 2009 when Lynn started working with Virginia again, I had a total come apart with her one afternoon.

"Is it ever going to get better? Are we ever going to get anywhere?" I wanted to know. "We have been doing the same things for years. Years. And she still can't communicate any more directly than she could five years ago."

Lynn looked at me and made a promise I will never forget. "Abby, I will not leave you and I will not leave Virginia. I know how smart she is. I can only imagine how frustrating this is for her. But I promise you, I will figure out a way for her to communicate. I don't know how yet, but I will. I promise."

There have been times when I couldn't work on speech goals with Virginia because it was too hard for me to watch her struggle. I knew how badly she wanted it and yet her body wouldn't cooperate. There have been many times when Amy (or Meagan or Sally) had to take Virginia to see Lynn because I couldn't face the struggle and the failure anymore. But Lynn has loved Virginia and fought this battle for her for six years. She has been there through every frustrating moment with superhuman dedication.

I know that we are a long way from the goal but finally I feel like we are getting somewhere.

(Usually I reread my posts, but this one is too long, even for me!)

As a reward for those of you who read it, here is Eliza helping make cookies for Findley's birthday:

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IMG_0693 And this is what Wills has done to my refrigerator. Please note the pink and purple high heels on Virginia and me. Too funny!

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Silence

IMG_0313 Sorry for the long absence and thanks to all of you who have checked in on me. With the exception of the week in Disney World, one (or more) of the kids was sick all of February. Makes me really appreciate that we got to go on our trip at all.

Nana is about the same. Holding her own, but sleeping a lot. Virginia has gained 6 pounds in the last few months which is cause for celebration. She is now 37 pounds and I feel like we can put the feeding tube conversation off for a few more years.

I have written several posts, but hesitated about posting them. The reason is that I feel like I have said it all before.

I am struggling to live in the tension of this world in which sorrow and joy run parallel.

There have been a lot of hard days lately, days where I still can't believe the tremendous ramifications of what happened to Virginia. Emotionally, it gets easier. Physically, it gets harder. There are many days when all Findley and I do is keep Virginia alive.

There is a tremendous amount of stress in our lives. And it isn't going away. I am crazy if I think it doesn't impact Findley and me, much less Wills and Eliza.

Just when I feel like I am starting to reassemble some of my own dreams that fell apart when Virginia was born, she gets sick again and I spend two weeks just trying to keep my head above water.

I still struggle with putting value on the wrong things. I feel better about myself on days where I accomplish something. On days when all I do is care for Virginia, I don't feel fulfilled. The opposite should be true. To serve is the greatest blessing of all, and when I don't want to do it anymore (which I am ashamed to say is a lot lately), Jesus is right there, serving her with me.

When I look at Virginia, I realize how important it is that I wrap my mind about what really matters. She will never accomplish much in the world's eyes. She won't be first in her class or a state champion tennis player. She won't have her Ph.D by the time she's 24 or juggle a full-time medical practice with four children. Virginia serves all of us with her smile and her attitude. I am blessed to be her mother and am ashamed of how trapped I feel at times when she is truly the one inundated with suffering.

So, maybe I am having the 'seven year itch' of this situation, if that makes any sense. We are mentally, physically, and emotionally exhausted, but there are miles to go before we sleep.

Virginia had her first seizure in almost four years at 3 a.m. last night. It scared us to death. She has the stomach bug and any illness can increase her propensity for abnormal brain activity, but I wasn't prepared for it.

She is ok today. We will adjust her medicine and move forward one day at a time.

Tonight I am grateful for a pediatrician who lives next door and answers the phone at all hours for me. I am grateful for a husband who takes off work to accompany his anxious, exhausted wife and his precious daughter to the doctor. I am grateful for the friend who took Wills for the afternoon, another friend who took care of Eliza, went to the grocery, and ordered the balloons for Wills' birthday party tomorrow. I am also grateful for the friend who brought us enough chicken salad and pimento cheese to last a month. And I am grateful for my father who I have talked to four times today and my mother for calming both of us down.

(I guess I shouldn't have titled this post 'Silence.' Should have known I can always find something to say! I'll be back soon with something more structured and coherent.)

Eliza can't stand for someone else to be in my lap. Makes things interesting, that's for sure.

Eliza loves Wills, and Wills tolerates Eliza, most of the time.