An Old Story

A family Findley has known his entire life lost their only child in a car wreck in 2005. A drunk driver crossed the median on the interstate and hit her. The magnitude of that loss for her parents will never be measured.

A few months later, Findley and I were at a wedding party for the nephew of the couple who lost their daughter. We had Virginia with us because no one else was able to keep her. We were still devastated beyond words, and in those days, Virginia basically cried nonstop.

I am sure it was obvious that we were struggling. As we made our early exit from the party, the father who lost his only child approached Findley and gave him a hug. I will never forget what he said.

"Just hold that baby girl, Findley. Just hold her."

We were caught up in what had been lost. We were overwhelmed because we could not heal our daughter. But that father was able to look past all that had gone wrong and all Virginia's injuries and see a baby who needed to be loved. He wasn't minimizing what had happened, but he was able to see that at the end of day, it didn't really matter. We just needed to hold her.

I have thought about his words a lot lately.

As Virginia gets bigger, she will have a lot more physical issues. Her scoliosis has progressed (her muscles are not strong enough to keep her spine properly aligned) and we are going to see the pediatric orthopedic surgeon on Wednesday. I am scared. If it needs to be straightened, it is beyond a huge surgery, especially for our little lamb.

I know lots of you pray for her, and I guess I am posting this in hopes of prayer for Wednesday and for medical issues that will arise down the road. I pray that Virginia will have as little pain as possible in her life and that we can somehow avoid some of what could lie ahead.

I would trade places with her in a nanosecond. I would give my life so that she could be healed and be able to eat and talk and run. But I can't.

All I can do is hold her.

 

 

 

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? :)

 

 

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.

***************************************************************************

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!

*******************************************************************

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.

Nothing Is Ever Simple!

Sorry for such a long hiatus. I know it is time for an update when I start receiving numerous facebook and email inquiries!

The feeding tube transition has not been simple, but that is par for the course with Virginia.

There are so many questions right now with her, but I am going to keep this as simple as I can. The bottom line is that the feeding tube has not helped Virginia's cough. This is a tremendous disappointment, but I do have hope that we will get to the bottom of it yet. (and I'm not just saying that!)

We were able to go a few days giving Virginia very little by mouth, and her cough was just as bad, especially in the morning. We have spent hours with lots of different doctors over the last seven days, and they have collectively come up with a new theory. It's not a new one to us- but not one that we gave as much weight to before we did the feeding tube.

Since last April (about when the cough started), Virginia seems to have more drool. She has always drooled a little more than my other two kids, but now I have to change her shirt several times a day. I took her to the dentist and oral surgeon last summer to see if they could explain her excess secretions, but they could not.

When we were sitting in Dr. Mary's office on Wednesday, I was pretty close to despair over the cough. It is deep, wet, and jars her little body all day long, but especially in the morning. Mary sat in the office with us for an hour and just watched Virginia. She decided she isn't aspirating/coughing because of eating, but what's happening is she's not swallowing, so all the secretions build up, and when she does swallow, she is coughing a ton. Maybe there are more secretions than there were a year ago, maybe there aren't, but the bottom line is, Virginia only swallowed twice in that hour.

She obviously swallows when she eats and it doesn't seem to hurt her. Why isn't she swallowing the rest of the time? It's a mystery.

Ok, remember in April when she had seven seizures in one day? We ultimately decided those seizures were triggered by an allergy medicine she shouldn't have been on, but not before we increased her seizure medicine dose. The doctors think that maybe this change is sedating Virginia to the point that she's not swallowing, or has caused a subtle change in the amount or thickness of her secretions. She doesn't seem sedated to me, but they said that could still be the case.

I asked the neurologist about this in June (because Findley and I had already been tossing this theory around), but he said no way. He has tons of kids on this drug, V isn't on a very high dose, and he doesn't think it has anything to do with the cough. But he did say we could go down on the medicine if we wanted to, but he would say 'I told you so' if she has another one. (I really like our neurologist, by the way. I have teams of doctors, and he easily makes the A Team).

So when our pulmonologist (who along with Dr. Mary is Captain of the A Team) suggested in August that Virginia was aspirating and the swallow test confirmed it (to a degree), we went ahead and scheduled the g-tube in order to protect her lungs, attributing the entire cough to the aspirations.

Apparently it isn't that simple.

I am not sad we did the tube. She would have needed it eventually, there is no doubt she is aspirating a little bit, and it will definitely be safer to be able to give her most of her nutrition via tube. Thinking she was aspirating all the time may have forced us to do something we might never have had a peace about otherwise.

But what to do about the cough?

Starting tomorrow, we are going to go down on her seizure med by two-thirds over the next four weeks. That is a lot! I am a little scared, but feel like we have no choice. Please pray that this helps her cough dramatically and that she doesn't have any seizures.

If that doesn't work, we are going to add a drug called robinul which helps dry up secretions. This isn't my first choice, but it is potentially a very helpful option for us. We have also put her mattress on an incline to see if that helps with the secretions during the night. I don't think she swallows at all at night- her pillowcase is soaked in the morning and it takes her almost three hours of constant coughing to clear her nighttime build-up.

As far as getting nutrition in her via tube, it is proving next to impossible. She can't take more than about four ounces of pediasure without feeling sick (can you blame her?), so I am back to feeding her mostly by mouth and putting her liquid in the tube. It means most of what we do around here is still feed, but I think eventually it will get easier. I honestly don't care if we can just shake the cough!

Thank you for your prayers. Honestly, Virginia should have struggled with lung issues her whole life, but she hasn't. We are hoping to get back to that point.

********************************************************************************

On another note, my mom was here for the fourth time in five weeks last weekend and Findley and I went to our ten year Vandy reunion. There were two minor Virginia mishaps while we were gone, but I will let mom tell you about that!:)  She is pretty incredible to be able to step into the current chaos and take care of Virginia. Thanks, Mom.

I loved my college experience more than I can say. I would go back in a second.

While I miss the days when my toughest decision was what flavor of frozen yogurt to eat, I am just as happy now as I was then. Findley and I agree that our life doesn't look like what we thought it would ten years ago, but it is richer and deeper than we ever imagined. It's not easy or free of heartbreak, but no one's is.

And, last but not least,

WE MISSED YOU, TAY-TAY!!

Party Girl

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

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

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

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

**************************************************************************************

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

We started the night off with cake.

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

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

A few brave souls got up to dance...

So obviously Virginia wanted to dance, too

Eliza has her own moves

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

Followed by an old family favorite, the car wash.

Spent the rest of a beautiful afternoon at the botanical gardens

Virginia fielded many calls of birthday love today

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

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

Her favorite gift was from Eliza

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

Virginia's Cough (and Happy Birthday to Eliza!)

(I really hope that Eliza and Wills don't feel like a subtitle to Virginia!)

So, to catch you up on our medical issues, Virginia's cough is no better. Actually, I would almost say it is worse. We all  (Findley, me, her doctors) agree that she is aspirating, but we also agree that this doesn't totally explain the cough. It is a horrible, wet, body-shaking cough and it wears her out and makes eating next to impossible. It is the worst in the morning- it takes her about 2 hours to clear the stuff out of her lungs. She hasn't slept well in three nights, and I am so tired I feel like an unfit mother.

As you may remember, Virginia had a bad day in April where she had six seizures in one day. (Her first seizures in six years.) We doubled her seizure medicine from an almost nonexistent dose to a still-relatively-small dose. Then on July 2 she had another one. At that point, we doubled her medicine again. She is still on the low end of what is considered an effective dose, but realize she is taking 200% more topamax than she was in early April.

That being said, when she had the July seizure, the nurse at neurology suggested that her new allergy medicine could be triggering her recent seizures. When I looked back, she had started the allergy med ten days before that awful day in April when she had six seizures. So we took her off of it after the July seizure and she hasn't had another one.

But maybe she hasn't had another one because of her new level of topamax?

Here's why it matters. Her cough started around the time when we went up on her medicine. I am guessing it is somehow to blame- it is thickening her secretions, or making her so tired she's not swallowing as much. I don't know, but it's all I can come up with. The pulmonologist agrees with me, but not the neurologist. We see the neurologist on Wednesday and hopefully we can agree to go back down on the seizure medicine and see if this helps the cough. But obviously we don't want any more seizures either.

We are also going to try steroids this week to see if that helps with the cough. And maybe reflux meds, too. (But you can't try it all at once or you won't know what's helping.)

Virginia seems more frail to me than she ever has. I feel like most of what I do is take care of her. But in some ways, I think it is amazing how much our family does in spite of all the care taking. I know why, too- Virginia loves life. She loves people. She loves to be on the move. But I think we are entering a phase when she is going to need lots of holding. Which is fine by me- will someone just come entertain my other two?

We meet the GI surgeon who is going to put in her feeding tube next Tuesday, September 20th. I feel like he will schedule her surgery within a week or two of that date. Her birthday is October 3, so I think I will try to push for a date after that.

On a happier note, someone else in our family just had a birthday. Eliza turned two last Friday. My dad was in Baltimore for a meeting, so mom came to celebrate. You know the third child doesn't really get a party, but she didn't care. She got a Mickey balloon and a Scooby-Doo stuffed animal.

And just for comparison, here is someone else with his Mickey balloon on his 2nd birthday...

Eliza had a Mickey cake, too

You can tell that once I have a plan that works, I don't tend to change too much

Eliza got a baby and a baby stroller for her birthday. She didn't care a thing about the baby and instead put "Doo" in the stroller. I stuck the baby in a closet for Christmas.

Geegee and Daddo gave Eliza a sand and water table for her birthday. It is a big hit...

They like the table almost as much as the box it came in.

We had a surprise visitor yesterday. My dad was driving through on the way home from Atlanta. He had gone to a meeting of the Civil War Historical Railroad Society. (or something like that). For some reason, my mom doesn't usually go with him on these trips, but hopefully Eliza will be joining him soon.

But this is still Daddo's biggest fan...

I always hesitate before putting pics like these on my blog, but I want people to know it's not all gloom and doom over here. On Friday I hosted a surprise party for my friend Laura. She has wisdom beyond her years and has been there with us every step of the way since Virginia was born. It was so much fun to have her closest friends to dinner and celebrate every one of her 29 years!:) I even think she was genuinely surprised, too!

Thanks for making it to the end of a long post, authored by a sleep deprived woman. Please pray that Virginia's cough subsides and that she gets stronger. I also really want her off most of her seizure med- I think it is taking us in the wrong direction. One thing leads to another and I am trying to put the brakes on a downward spiral!

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.

***********************************************************************************************

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.

******************************************************************************************************

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!!

Brotherly Love

Hope everyone is having a great week. Thank you for all your comments about Virginia's speech progress. It means a lot to me. She has now had two PODD sessions with Lynn and done great. Lynn is so excited she can hardly stand it- which means I am excited, too. If you have 54 seconds, this is a funny video. I'll be back soon with a more traditional post, but I'll have a hard time topping this video with words.

Dancing to CCR