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,

 

 

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???)

Peaks and Valleys

One of the toughest aspects of being Virginia's mother is that I never know what's just around the corner. Obviously this is the case for all of us, but the frequency with which we come crashing down from a mountainous high is what puts us in a pretty unique category of people. One minute we are doing great. Enjoying our family, grateful for our three children, and feeling like everything is going to be ok. The next minute we are in the ER having a chest x-ray to see if Sissy has pneumonia. One minute starting out on a walk, the next minute doing CPR because she quit breathing during a seizure.

The contrast isn't always so extreme, but the constant roller coaster ride leaves us feeling pretty spent.

Yesterday we went to the botanical gardens for two hours while prospective buyers were looking at our house. Obviously I took drinks for the little two because it was warm and I knew they would get thirsty. I took a drink for Virginia, too, but every sip she took made her cough violently. We went to get her a milkshake when we left, but that wasn't any better. She is aspirating and I honestly shouldn't be giving her anything by mouth, but what hell is that?

Life is pure and simple for Wills and Eliza. Ice cream is a treat, not a danger. They can drink water until their thirst is fully quenched. But there is nothing we can do to make those things a possibility for Virginia and that is sad.

Last night she had lots of trouble going to sleep. We tried everything, but she essentially screamed for two hours. We repositioned her about ten times after she fell asleep and she still woke up at five, coughing like crazy and in immediate need of a breathing treatment. She screamed and coughed until about 7 because her throat hurt and all the gunk she is struggling to cough up obviously frustrates her.

The ulcer under her tongue is huge again. Her tongue thrust is almost constant and about twenty times a day she jumps in pain because her teeth hit the ulcer. It bled three times yesterday.

I woke up this morning feeling defeated and like I couldn't take one more minute of this. Virginia struggles so much I can't even comprehend all that is wrong at any given moment. Her body even struggles in her sleep. By the time she quit yelling at 7, I felt hopeless. I mean, how can she go on like this?

I knew it was supposed to rain this afternoon, so about 10 I took Virginia and Eliza on a walk. Eliza walks and I push Sissy, so we don't usually get too far. Today we made it all the way to the creek and they lasted two hours, throwing rocks, chasing a blue heron, and we were all just happy to be together.

In those moments today by the creek, I couldn't have imagined anything better. My life couldn't have been more perfect.

See?

The moments of happiness give Virginia and me enough strength to get through the next valley. Right now she is coughing in her bed, struggling to get to sleep. May God bless her and may He give us more moments of simple joy tomorrow.

Christmas List

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

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

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

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

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

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

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

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

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

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

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

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

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

Too blurry...

Almost, but not looking the same direction...

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

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

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

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

Laid back Sissy!

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

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

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

Who, me?

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

Merry Christmas!

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.

What does Hope look like?

I frequently write about the challenge of choosing life in the midst of suffering.

Sometimes I have tangible options for living out this concept.

Sometimes I don't.

Choosing life means taking Virginia to a birthday party even when I know it will be a challenge.

Choosing life means going out to dinner with Findley even when neither one of us can hold our eyes open.

Choosing life means taking Virginia for a milkshake at Gilchrist even when I know people will stare at her.

But what does it look like on days when leaving the house isn't an option? When I have been up all night for weeks on end? When every feeding lasts an hour and is accompanied by horrific coughing?

For those of us who are caretakers, there are times when keeping someone alive is an all-consuming task.

Almost every minute, there is hard work to be done.

The intensity seems too much to bear.

So in those moments of watching your baby suffer intensely, what does 'choosing life' look like?

I think it means settling on hope and not despair.

Even when all earthly hope for a happy outcome is gone, refusing to let despair sneak into your heart.

It's more about attitude than action.

A gift of the Holy Spirit, not an intellectual accomplishment.

I am praying to be awash in the gift of Hope.

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Virginia has been sick again this week. Her cough seems a little better on the steroids, but they are keeping her up at night. We are weaning off them now, so hopefully she will be sleeping again soon. If her fever's not gone by Friday, we will start a second round of antibiotics. Her feeding tube is scheduled for October 12. More on that later...

Thanks for caring about Virginia and keeping her in your prayers.

And by the way, if you have a special needs child and haven't read this, you should. My friend Kelly sent it to me last week. I have a lot to say about it, but that will have to wait for later. God Bless this woman and her precious daughter.

Mania

The day after our failed trip to Highlands for the July 4th weekend, Findley said something very poignant.

"I feel like I am manic," he said. "One minute, we're driving down the interstate, looking forward to a weekend in the mountains with family and counting the blessing of three happy kids in the back of the car. The next minute, we're on the side of the road, holding Virginia and counting the seconds in between breaths as she seizes."

This is not the first time I have written about this theme. About the struggle to live in the tension between joy and sorrow, life and loss, celebration and suffering.

A friend of mine is in the middle of a very painful situation. She and her family have come face to face with intense hatred. In an email last week, she wrote, "Things are so terrible you wouldn't believe...but we feel every blessing hundred fold."

The darkness makes the light appear even brighter, but often the tension between the two is intense. The struggle leaves me feeling tired, confused, or Findley's word, manic.

Wills started kindergarten last week and loves it. I am so proud of him and full of gratitude that he is thriving.

Virginia started second grade, but there are constant reminders that we are taking a square peg and trying to fit her into a round hole. It hurts to consider the depth of Virginia's school experience in light of Wills', but maybe I am looking at it the wrong way?

It is tough for me to go from heavy news at the pulmonologist to celebrating the completion of Wills' first soccer practice. (And believe me, if you saw him play last year, you would understand that 'celebrate' is indeed the correct word.)

I am looking for harmony in the midst of an intense range of emotions.

The constant physical suffering that Virginia endures causes me to cling tightly to simple, happy moments I might otherwise have missed. Eliza holding Virginia's hand the entire way home from school. The way Virginia's face lights up when she hears Wills come in the front door and yell, "Where are you, Sissy? How was your day?"

Suffering gives a clarity to life that is truly beautiful, but sometimes I have to look at things just the right way in order to be able to see it.

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Wills really gets into Halloween. He's been asking for his costume since May, so I finally gave in. The only problem is that Eliza is scared to death of him, which makes him like it even more.

Has to lose the mask to eat...

Virginia's first day started at 7:45. Kindergarten didn't start until 9:00 the first week. I needed that hour and 15 minutes to get out of my pajamas in time to take Wills, but Daddy and Virginia were ready bright and early.

Funny girl. The only sad part about Wills starting school has been how much Eliza has missed him. She asks for him all day long. But she does take advantage of his cowboy hat while he's away.

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!!

Tears of Gratitdue

Thanksgiving 2003 Nana went home from the hospital yesterday, but on hospice. I haven't counted her out yet by any means, and the doctor did tell me that if Nana isn't worse in ninety days, hospice will kick her out.

Or she'll kick you out way before then, I thought. That's when we'll know she's on the mend.

But when I talked to her tonight, she seemed really tired. She sounded as old as every one of her ninety-three years. I started wrapping my mind around the possibility that this time she won't rally.

I have cried a lot today.

Most of the tears I expected.

Tears of longing because I will miss her.

Tears of pain because death is unavoidably hard.

Tears of sorrow because she is suffering.

But some of the tears surprised me. I wasn't sure at first, but the longer I cried, the more I knew for sure. Quite a few of my tears were tears of gratitude. I have been overwhelmed today by all the blessings in my life, especially Nana.

Nana has had the same address and phone number my entire life. Her area code changed when I was in college, but eventually I got over it. Like me, she is a both a talker and a night owl. I used to call her at midnight because I knew she would be awake and ready for a marathon chat.

I always knew who to turn to when Dad said that $300 was too much for a tenth grade prom dress or when I wanted to go on a cruise over Christmas break. (Yes, Nana and I went on a cruise together. It was a riot!)

I also knew who to call on October 3, 2003, when my world came crashing down around me. I had been inducted into the sisterhood of suffering, an organization of which Nana was a lifetime member.

I hope that one day I will able to console people in the same way that Nana consoled me. She didn't try to tell me it would go away or that Virginia would get better. She didn't quote scripture about the difficulties of this life. She cried with me. She held me. She told me how sorry she was.

Then she jumped in with both feet. She sat up at night and rocked Virginia so we could sleep. She gave us money for a down payment on our house in Birmingham when we needed to move for Virginia's care. She made herself available to me in every possible way.

But in the midst of it all, she kept telling me not to lose my faith. She encouraged me to keep praying and to remain open to Jesus.

"He will give you what you need, baby," she said. "He will give you what you need."

It is an incredible blessing for me to have Nana in my life. Even tonight, the first thing she asked me was, "How are the babies?"

Even now, she is still thinking of me.

But the most remarkable thing Nana did for me wasn't a gift or a piece of advice. It was a choice she had to make, time and time again. She chose to step out of her own pain because I needed her to continue living.

After my mother died, she and Poppy would still come to Memphis for long visits several times a year. I know it was hard for her. The house was full of ghosts. It was the house her daughter bought, anticipating a lifetime of happy memories. But instead it became the house she suffered in during a painful, two-year battle with cancer.

I know it was hard for her to embrace Mom, a woman who had in some ways taken her daughter's place. But she did it. For me.

My heart is also filled with gratitude that Mom embraced Nana like she did, which was not always an easy task.

"Ginger, where are Susan's living room lamps?" I can still hear Nana asking. (After Mom and Dad had been married a decade and there was no telling where the lamps were.)

"You mean the ugly brown ones with the monkeys on them?" Mom should have responded. "I threw them out."

But she never responded that way and it never offended her. In-law issues are tough enough, but my mom handled her husband's dead wife's difficult opinionated mother with love and grace. Because she was my grandmother.

On a particularly rough visit (I think Nana had just told Mom the reason I didn't eat much of her rice was because it was so dry) I asked Mom how she did it.

"Easy," she said. "I love Nana. And I just try to imagine how I would want my own mother to be treated if the circumstances were reversed."

And so tonight, my heart is both heavy and full. Heavy with sorrow at the prospect of losing someone who has been at the center of my life for thirty-one years, and full of love and gratitude, both for Nana and the pillar she continues to be for me, but also for Mom, who welcomed Nana with open arms.

Nana with baby Virginia, October 2003

Mom with baby Virginia, October 2003

(On a side note, if anyone reading this {Dad?} thinks the quality of the pictures is poor, it is because I am taking a picture of a picture. Perhaps a better alternative would be a photo-scanner? Maybe the perfect choice for an upcoming big event? Just a thought...)