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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Battle Scars

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

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

"No. Why?" she responded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lots to Ponder

Passed out in the car while looking at Christmas lights Wide awake and ready for more. This girls LOVES looking at lights!

Thank you so much to everyone who has emailed me. You have certainly answered my question about whether or not anyone actually reads my blog. It has been overwhelming, so much so that I haven't been able to respond to most of your emails yet. But I will. It has been really special to hear from people (surprisingly, most of whom I don't know) about how much they have been impacted by Miss Virginia's smile.

Thank you for being brave enough to tell me who you are. I guess I'll have to keep writing! I am going to wait until after New Year's to put up the password because I want to make sure everyone has a chance to see that I am going private. (Now if I could just figure out a way for some of you readers to actually comment, I would be really happy!)

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Virginia hasn't been sleeping much. Not that she ever sleeps well, but lately, her nighttime cry has changed. It sounds to me like something is hurting her. And every now and then during the day, she will jump, like she was in pain for just a second.

We took her to see our dream team of doctors yesterday, wondering if anyone could help her sleep better and hoping they could figure out what was hurting her.

It turns our her hip is 60% displaced. This isn't causing her great pain right now, but as the hip continues to come out, it will likely bother her more and more. The surgery to put her hip back in place is a huge one. It makes all of us physically ill to think about Virginia enduring such a painful procedure with a difficult recovery. We don't have to decide today, but the window is about the next year. After that, we have lost the best option for how to fix it and if it does really bother her down the road, we'll have to go with Plan B.

We also did a scoliosis study. Right now, it's not so bad, but the curvature in her back is progressing, too.

When we begin to discuss all these issues and look at ways to manage the havoc that Virginia's abnormal muscle tone wreaks on her body, I get very sad.

None of what I heard yesterday was a surprise. I just didn't think we would have to start thinking about it this soon.

So, I came home, fed Virginia her lunch, and then went into Wills' closet and had a good cry. (Wills' closet is the only private place in our house right now because of all the construction. It is also where I hide when I am eating something I don't want the kids to know I have, like chocolate.)

I cried for what was taken from Virginia. I cried for the pain she suffers every day, and for all the pain that undoubtedly waits just down the road. But most of all, I cried because I am afraid her body cannot hold up for as long as I want it to.

Sometimes new realizations of Virginia's suffering level me. They suck out all my energy and render me lifeless. But this was not the case yesterday.

When I think that I am going to have to run the race I am running indefinitely, it seems like too much. I am paralyzed. But the truth is, for every single one of us, we have no idea how long we will be running. I hope I am caring for Virginia for the rest of my life, but I have no guarantee of that. Yesterday, instead of being devastated by that fact, I was encouraged to make the most of every day because life is fragile. For each of us.

My Dad also reminded me yesterday that there are no set goals in this race we are running. The winner isn't even necessarily the one who is here for the most days. Sure, we want as many days as we can have, but that really isn't the point of life, either.

The point is in how we love those around us in the day to day. In the mundane.

Dad pointed out that there are lots of accounts in the New Testament of Jesus eating. (When he said this, I had no idea where he was headed. At first I thought it was going to be an excuse to order barbeque, but I underestimated him.)

"When Jesus was here, Ab, he wasn't seeking glory. He wasn't trying to be the Nobel Laureate in Physics. He was eating with people, listening to people. Being a part of their lives in simple, daily tasks. That is all you are called to do with Virginia. You can't take this burden away. You just have to meet her with true joy and compassion in the every day."

So today, Virginia and I worked on our Christmas card list and delivered a few gifts. I let her wear a green, sparkly tutu and a red shirt just to get in the spirit. We danced to "Let's Go Fly a Kite" and we laughed at Eliza as she tried to walk in her squeaky shoes. It was an ordinary day, but because I was able to spend it with her, it felt extraordinary.

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(I left out one piece of the what happened yesterday. In case anyone wants the whole truth...

When we got to the hospital yesterday, the nurse told us Virginia was running a fever. 100.7 Hmmmm....I knew she had a pretty yucky cough, but it sounded upper airway to me, so I wasn't really worried.

We saw doctor #1, who said he wanted to get a chest x-ray. He coupled it with the scoliosis study, but he really wanted to make sure she didn't have pneumonia.

He saw a spot he wasn't sure about (I still wasn't worried), so he told us to go see our regular pediatrician that afternoon.

No problem. I was already taking Eliza because I thought she had an ear infection. (which she did.)

So, after being at the hospital for three hours, I came home, fed Virginia, cried my eyes out, and loaded two sick girls into the car.

When I got to the pediatrician's office, someone without a tag was parked in the handicapped space. Well, not actually in the space, but in the diagonal striping next to the space, inhibiting me from letting our ramp out.

Poor woman. She had messed with me on the wrong day.

I went in and asked if they could find the owner of the car and ask her to move.

"Ma'am, we don't have a PA system. We can't go in every exam room and find her."

"Fine," I said, clearly very annoyed, and fighting back tears that had nothing to do with the improperly parked car. "I'm calling the police."

And so I did. On this poor woman who crossed me on the wrong day. I almost let my heavy metal ramp slam into the side of her car, but settled for letting her get a ticket.

I was out there when she finally came to move her car.

She shrugged her shoulders at me and said, "I'm a new mom. I'm tired."

"Sorry," I quipped, "but you picked the wrong person to complain about tired to. Merry Christmas."

And so, somehow, I felt better. Some small justice was performed yesterday. But all my 'TAWANDA' moments tend to come back and bite me. That woman will probably be my Bible study teacher next year!

In a Flash

In a flash, he's gone from this:

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To this:

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Virginia has to be at school forty-five minutes before Wills, so four days a week I get to walk him to preschool by himself. (Well, with Eliza, but she doesn't say much in her stroller.)

It only takes about five minutes (for those of you who know me, we have to walk around to the way back of the building), but it is one of my favorite parts of the day. He holds my hand as we cross the street and usually through the entire schoolyard.

We talk the whole time and there is usually no rhyme or reason to what's on his mind.

I obviously know that when we get to his classroom door, I will have to say goodbye. I am preparing for this the whole walk. Getting Wills to school is the purpose of our walk.

But I am never ready to get there.

We cross the courtyard, deep in conversation. And all of a sudden, his teacher opens the door, reaches out her hand for him, and he steps into the classroom. I watch as he takes off his backpack and jacket and hangs them in his cubby.

"Have a good day, buddy," I call out. "I love you."

"Love you, too, Mommy," he replies.

And in the blink of an eye, he is gone.

I am never ready for the finality of the goodbye or for how quickly it occurs. One second, we were enjoying being together and talking about how Santa Claus will be able to fit through our chimney. The next second he's not there anymore.

Even though I am prepared for what is coming, even though I know school is good for him and he loves it, I still have a hard time leaving him at the door.

I started thinking today- are we ever really ready to say goodbye? Aren't there always things that we anticipate for a long time and yet their arrival still seems painfully quick? Here one second, gone the next. How I miss my little buddy for those next four hours!

Findley and I cannot watch Toy Story III without crying. Not sniffling with the occasional tear escaping to roll down our faces, but absolutely bawling. We don't care that Andy gives Woody and the rest of the gang away, but we are devastated that Andy grows up. When his mother looks around his empty room, we feel sick to our stomachs. We are picturing Willsy, all grown up and ready to move on to the next phase.

Abby, you are thinking, he's not even in kindergarten yet.

I know, I know. But the day is coming, and much faster than I want it to. And even though I am already preparing for that moment, I know it, too, will seem sudden. Here one second, gone the next.

What is the point of giving you a glimpse into how my mind works, other than causing you to feel sorry for Findley? To remind those of you with small children to seize every moment. You won't be stuck at home changing diapers forever. Before you know it, you'll be wishing there was someone around to smear marker on your new pillows or eat every single Hershey kiss that you hid in the cabinet.

The challenge for me is to let my awareness of what's ahead empower me to love Wills more fully today, not paralyze me with anxiety over a day fourteen years from now. I am doing a pretty good job with that lately- I think Findley might have to start taking him to school because I can't be trusted to follow through on the task!

Here's wishing he would stay just like this forever!

The Mickey Mouse Clubhouse he build while playing hookie on Tuesday.

Still sucks his fingers and rubs his neck

Playing on the construction equipment with Eliza

What he's drawing these days...

A house decorated for Christmas

And, of course,

Sheriff Woody

Have a great weekend, everybody!

Perspective, Part II

I try my best to tell the whole story on absgab and not sugarcoat things. I have lots of moms with special needs kids who read (they never comment, but they do read) and I feel like I owe it to them to tell the truth. Being transparent about the pain in our lives is not easy for me. That may come as a surprise to you, but it really isn't. As a good Southerner, there are just some things I have a hard time revealing. As my grandmother, Tot, always said, "If you can't say anything nice, just don't say anything at all." Probably good advice to follow, but it doesn't make for very truthful writing.

I have a tendency to end all of my posts on a high note. Part of that tendency is due to the fact that I simply don't remember the hard moments as well as I remember the happy ones. The other part is because I truly believe all of Virginia's suffering will be made right one day. As I process what she goes through daily, I try to view things through the promise of eternity, the ultimate happy ending.

All of these factors working together lead me to omit things from my writing that seem too sad or messy to reveal. A good friend called me out on that the other day.

She pointed out that I did not tell the whole story about Virginia's class musical. She is correct. In the interest of not hurting feelings or ruffling feathers, I did not tell the whole story. But I think that was the wrong decision.

So... in the interest of honesty and for the sake of my readers who have special needs kids, I will tell the whole story. If integrating your child into school has not been simple, you are not alone.

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The week before Sissy's kindergarten musical, Findley and I were at school for a different class function. After it was over, we were standing next to Virginia and telling her what a good job she had done. We were in the presence of all of her peers and their parents.

A mother approached me and with no hesitation whatsoever, she asked, "What is wrong with her?"

Virginia absolutely heard every word, as did several of her friends.

For perhaps the first time in my life, I was at a total loss for words. As I stood there, stammering for some type of appropriate response, this mother went on.

"What is wrong with her neck? It turns funny. And why can't she talk?"

I was speechless, absolutely amazed that a human being could ask such questions in front of Virginia. Findley, however, was not. He stepped right in front of Virginia in order to protect her from the stares of this viper and looked the woman straight in the eyes.

"Nothing is wrong with her," he said, in a tone that clearly put an end to the conversation. The woman looked shocked and turned to walk away. "But something is clearly wrong with her," Findley mumbled to me under his breath. I hope she heard him.

That story has nothing to do with the kindergarten musical except that it created much anxiety in me about the possibility of Virginia's feelings being hurt when she was out in public. I knew this woman was the rare bird, but it was still extremely painful. I wanted to protect Virginia from the likes of her, not stick her on stage for everyone to mock. This incident was still fresh in my mind as Findley and I took our seats for the musical about a week later.

Now for the part that is hard for me to tell.

All of the students took their places on the risers, and Virginia was right next to them in her wheelchair. They sang six songs. During each one, roughly one-sixth of the children came forward for a special role while the rest stayed in the bleachers and continued singing. During one number, the kids who came forward played the xylophone. During another, they did a dance routine. Virginia was very happy during the songs when she was a member of the chorus. As I wrote in my earlier post, she was smiling and laughing the whole time.

The last song was 'Under the Sea' from the musical The Little Mermaid. Twelve kids came forward and all grabbed the edge of a blue parachute (think elementary school gym class) with lots of fish-shaped stuffed animals in the center of it. Virginia's aid wheeled her out to the center of the stage, and then left her. She was a good ten feet from her peers and the parachute.

As the chorus sang the familiar words, the children holding the parachute began walking in a circle, raising and lowering the parachute so that the fish in the middle jumped up and down like popcorn. I was watching Virginia the whole time, wondering how they were going to include her in all of this. I could tell she was anxious, as I would have been as a five year old, alone, in front of about three hundred people.

I was about to learn a hard lesson. This was their attempt at including her. I kept watching Virginia. She looked crestfallen, abandoned, and sad. Honestly, if Virginia hadn't cared that she was being left out, I wouldn't have either. But she did.

Virginia is a smart girl. To wheel her out in front of everyone only to have her not be a part was humiliating and wrong. It would have been much better if they had left her in the bleachers with the rest of her friends, happy and feeling like she was contributing. I am not naive. I know it is hard to make a place for her. But if you can't figure out a way for her to be included, don't drag her out in front of everyone with nothing to do just so you can say you tried.

As I sat there, anger boiling up inside of me (as it was in Findley, too, I might add), things got worse. The children got so excited with the parachute exercise that they accidentally launched some of the stuffed animals into the air and they hit Virginia in the face. It was almost too much for me to bear.

I hurt for her. I was putting my insecure, five-year-old self in her shoes and I wanted to die. I also realized at that moment that no one at school had put themselves in her shoes, or her role in the musical would have looked very different.

Somehow I made it to the end without running up on the stage and wrapping my arms around her, but it was hard. Aside from when Virginia was born, that school musical was the biggest injustice I have ever witnessed personally. My heart broke for her and I was angry that the individuals I had trusted to make her feel special at school had failed so miserably and embarrassed her in such a public setting.

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So now you know the whole story and can probably understand a little bit better why I cried the whole way home. But Findley was right- Virginia was happy for all of the performance except 'Under the Sea.' She forgave quickly afterwards and was smiling again during the pictures. But since she can't talk, it is hard for me to ever know exactly how something affects her.

I called the principal as soon as I got home, and before I could even tell her why I was calling, she apologized.

"That was totally inappropriate," she said. "I hadn't seen it until today and I am so sorry. It was hurtful to Virginia, we all saw that. I realize we have lost your trust and I am just so sorry."

I appreciated her apology very much, but in light of the humiliation Virginia had just been through, it didn't seem like enough. It just didn't seem like enough.

Coping Skills

IMG_6556 I have lots of different coping skills. My iPod is one of my favorites. This was taken about 6 p.m. on Saturday. Virginia was mad because Findley had turned off her movie in favor of the Auburn game. Wills sounded like a broken record, alternately asking when dinner would be ready and what he could snack on in the meantime. The dogs were barking- also hungry- and Eliza was literally sitting on my feet, fussing for me to pick her up. And Findley, you ask? Findley was calling for me, wanting to know where I was. Didn't I hear all the chaos?

No, actually, I didn't really hear it all. I was aware of it, but the specifics were a little muffled because they were competing with the likes of Otis Redding and the Rolling Stones. Sometimes music is the only way I can make it through the dinner hour.

Virginia used to scream constantly in the car. Well, she used to scream constantly, period. But the car was much worse because we had very limited options for how to attempt to soothe her. On one seemingly endless drive to see my parents, my mother suggested Findley and I stop and buy earplugs so we wouldn't have to listen to the crying.

I was horrified.

"Mom, how could you even suggest such a thing?" I shouted into my cellphone. "Don't you have any compassion? This is my baby and she is hurting. She doesn't have the choice to block out her pain, so why should I have the choice to tune out her expression of it? I need to be here for her."

"Yes," said Mom, ever the practical member of my family. "But you need to get here in one piece, too."

Over the last six years I have come a long way in my ability to function in the midst of Virginia's suffering. I know when she can't help her tears because of her brain injury or related pain and I also know when she is just a kid pitching a fit. There are times (like Saturday afternoon) when I do what I can to cope and reach for my mood enhancer of choice.

But there are other instances where there is nothing I can do to protect my heart from what she is going through. It doesn't matter how many closed doors separate us or what vacation I have to look forward to just around the corner. No amount of Pinot Grigio or items purchased from J.Crew.com can create a carefree mood when Virginia is in pain.

This has been a rough few days. We were planning to go out of town, but had to cancel for the second weekend in a row because of a sick child. I guess Wills is pretty good at sharing everything with his Sissy.

Virginia's fever virus has turned into a sinus infection with major nasal congestion. When she is trying to hold her mouth open to breathe, her jaw has a much greater tendency to get stuck open. It probably happened forty times yesterday, and each time is excruciatingly painful for her. It gets stuck open for about 15 seconds, her eyes tear up, she screams out in pain, and there is nothing I can do but try to force her jaw back in place as I mentally say every cuss word I know.

Watching her suffer is awful. If one of my other 2 kids had their jaw lock open, we would be in the car on the way to the ER. But poor Virginia. There is nothing anyone can do about it that isn't already happening, and she just has to live with it.

Findley and I had planned a special dinner last night. He grilled steak and veggies during the day while I made guacamole, salsa and margaritas. He dragged the hammock down from the top of the yard so we could enjoy the beautiful night air and be close enough to the house that the baby monitors would still work.

Well, after the day Virginia had yesterday, neither one of us felt like celebrating the arrival of fall. She screamed for over an hour going to sleep. (I just want to clarify that my other 2 kids do cry, but it's different. It doesn't affect us in the same way. There is a difference in a 'I am being stubborn and don't want to go to bed' cry and a soulful, sorrowful 'My body won't hold still so I can sleep and I am in pain' cry.)

I was trying to keep my spirits up while she was crying, but it is hard to see your child suffer. I knew Findley would be disappointed if I jumped ship on our plans, but I just didn't think I could shelve the heaviness in my heart last night.

I was in the kitchen, heating the food up, when he came out of Virginia's room after successfully helping her fall asleep. I looked at him, about to explain that I didn't have any coping skills strong enough to erase the past twelve hours from my memory.

But before I could say anything, he said, "It's ok, honey. I think there are times when sad is the only way to feel."

So we put the food back in the refrigerator and cleaned up the kitchen. We went to bed early in anticipation of another early, early morning awakening. No, it wasn't exactly the festive evening I had been trying to create, but as I fell asleep, I felt very grateful for the connection that Findley and I have. For the way that we have tackled this together. For the way it has made our marriage stronger instead of fragmented.

Last night we separately came to the same conclusion. That the best coping skill is knowing when not to try to cope at all. Last night we identified Virginia's pain as the monster that it is, all the while acknowledging that there will always be brighter days (and nights) ahead.

Make Your Moments

IMG_6515 Eliza turned one on Thursday and it is hard for me to believe that she has been a part of our family for a year. The jump from two kids to three has been tougher than I envisioned and it has made me take a hard look at some of the ways I operate.

I am a last minute girl. In college I never started a paper (at least not a good one, anyway) more than twelve hours before it was due. I start thinking about what's for dinner at five o'clock every afternoon, and I begin addressing my Christmas cards on December 23. There is a certain aspect of my laid back attitude that is beneficial around our house. However, having three kids requires me to be more purposeful in my planning and it has been a hard adjustment.

In addition to being more intentional in daily matters,  I am also going to have to do a better job of grabbing little moments with my children when they occur. Gone are the days of endless one on one time with Virginia. Gone are the daily trips to the Western with Virginia and Wills in the double stroller. We no longer go to the playground twice a day or the zoo on a weekly basis. I miss those huge chunks of time, but am learning to embrace special moments when they come along.

I hate to confess this, but I took a nap with Eliza almost every morning last fall that Virginia and Wills were both in school. I quit going to Bible Study and my other scheduled morning activities because I preferred cuddling up with my sleeping baby and I knew that opportunity would be short-lived. And last week when Wills was sick, he and I spent five straight mornings on the couch reading all of Stuart Little and Mrs. Piggle-Wiggle's Farm. I ignored my to-do list (which is pretty overwhelming because I also ignored it all summer) and embraced an unexpected windfall of time because one day he won't want me to read to him anymore.

As I have said before, finding a balance is a tall order for me. It is hard for me to know when to do the dishes and when to play hide-n-seek. Is it time to sweep when I can't see through all the dog hair swirling around the den? Is thirty-six hours the point at which food left on dishes in the sink permanently solidifies? My inclination is usually to tackle the household tasks so I can check them off my list. But, unfortunately, that list never ends. If I am waiting for everything else to disappear before I fully engage with my kids, I will be waiting forever.

Yes, more children equals less time. And the time I do have with Virginia and Wills looks different than it used to and that makes me sad. They are growing up. But with each passing day comes greater appreciation for the depth and possibility of each moment that does present itself. In both the extraordinary and the mundane, I long to make the most of every second we have together.

Favorite gift- Findley's old dog, formerly known as 'Brownie.' Now called 'Daw-gee.'

Balloons were the biggest hit.

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Stay away from my cupcake!

Hope

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These last several months have been tough and I have noticed that there are times when I seem to be shutting down. In the six and a half years of Virginia's life, I have been tired and overwhelmed, but in general I have been able to meet her needs on a daily basis.

I started noticing a subtle change in my ability to respond to some of her needs about six months ago. I had taken her to the dentist because of the pain she was having in her jaw. The dentist looked at her teeth and said that she needed major tooth work- I think "full mouth dental rehab" was her terminology. (The lack of oxygen at birth even wiped out the enamel on Virginia's baby teeth, so she until her adult teeth come in, she will have lots of tooth issues.) The dentist said Virginia would have to be put to sleep for this procedure and that we needed to schedule it for as soon as possible.

"I can't," I said, not believing the two words that had just come out of mouth. "She has had enough. I have had enough. And we just cannot handle one more thing right now, thank you very much!" We left without scheduling her surgery and I told her I'd call when I could handle it.

Virginia had multiple cavities and I had no idea if they were causing her pain. But it was three weeks before I could muster the strength to call the doctor and set up her surgery. "What's wrong with you?" I asked myself. "This is not a big deal. Just make the call. Get it over with." But I couldn't. I was tired and I had had enough of watching Virginia suffer.

Lately I find myself checking out mentally if Virginia is crying. I used to run into her room, scoop her up and try to soothe her. But I am tired. As hard as it is for me to admit this (and I mean really hard) there are times when I can't tend to her like I need to. Since I can't fix her suffering, I want to walk away from it. But I need to remember that I don't have to do it alone.

It isn't that I have changed over the last few months. I haven't. I am just as sympathetic toward Virginia as I have always been. I am just worn out. But when I am the weakest, I am able to see God's tremendous strength. The Holy Spirit comes along beside me and enables me to fulfill my earthly duties with supernatural graces. In those rough patches, God always gives me hope for tomorrow.

The sun has started to come up again for us in the last few weeks. Since I wrote the post on prayer requests, Virginia has started sleeping better, her cough is finally gone, her jaw is getting stuck a lot less, and I heard yesterday that Tobii is bringing the eye gaze system for her to try the second week of June. (It pays to have a squeaky wheel for a mother.)

I have found that my responsiveness, my ability to engage when Virginia is in a hard place, has returned. My energy has been restored and God has given me the strength I need to care for her today and the hope I need to face what will come tomorrow.

Hope can be found in several consecutive nights of sleep or in a five course dinner brought unexpectedly by a very busy friend. It can be found in the new medicine that is helping with her jaw and in the encouraging email I got yesterday. Today, Hope is taking the form of a visit from my little sister. Just when I am ready to throw in the towel, He reminds me that I am never alone in this battle.

"My grace is sufficient for you, for my power is made perfect in your weakness." 2 Corinthians 12:9

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Expectations of Motherhood

When Virginia was in the NICU, I must have asked the same two questions a thousand times. "Will she be able to talk? Will she be able to walk?"

I asked these questions of anyone who would listen as I was absolutely panic-stricken that what she had been through would have an ill-effect on her future. Finally, my father, tired of answering me for the thousandth time, said, "Ab, you can't have any expectations for your children."

"But, Dad," I pleaded. "I don't have extreme expectations for her. I'm not saying she has to go to Harvard or dance the part of Clara in The Nutcracker. I just want her to be able to move and communicate."

"But those are expectations nonetheless," he replied. "We are just going to have to wait and see, but don't worry. I know you. You will be able to meet her wherever she is."

I have thought a lot about Dad's words over the last six years. I absolutely did have expectations for what my child would be like. I had expectations for the level of care she and I would receive during her delivery. I had expectations for what motherhood itself would be like. And all of them were shattered within minutes of the start of Virginia's life.

I know I have unusual circumstances, but I don't know one mother who wouldn't join me in saying that motherhood is not what she expected. I pictured cookie baking and patti-cake playing. I imagined listening in awe as she learned to talk and laughing at all the adorable little questions she would ask me. In those, the frivolous details of motherhood, I can say that it has not lived up to my expectations. But in all the ways that matter, it has far exceeded them.

I love Virginia more than I ever imagined. When she smiles, my whole countenance is lifted. I never dreamed of the bond I would have with her or just how much my heart would be intertwined with hers. Sure, I didn't imagine the heartbreak of watching her suffer either, but it is part of the privilege of being Virginia's mother. It is part of learning to meet my daughter where she is.

The suffering she goes through teaches us to soak up every second of joy and we do.We don't overlook a minute of goodness- I can promise you that. What she goes through also reminds me that life is short. I won't always have these little ones at home. And one day, when I am sleeping through the night and brushing my teeth again on a regular basis, I know I will look back and long for these chaotic days. Sometimes when I am nursing Eliza, I look down at the top of her head and think it's Virginia- that's how fast these last six years have gone.

There are lots of things I dreamed of doing with Virginia that I won't be able to. The sorrow is not in what I lost, but in what has been taken from her. But the most important part of life, the relationships between loved ones (in this case, the bond between mother and daughter) have escaped this tragedy not only unscathed, but amplified.

Anyone who knows me at all can attest to the fact that my favorite thing to do has always been spending time with my family. It is Virginia's favorite thing, too, and the joy her presence adds to our family is immeasurable. We may not be baking cookies or smocking dresses together. We may not even be communicating in the traditional sense, but we have a communion. We are together. And for this mother, that is really all that matters.

Virginia has a lot of extra mothers in her life (because her actual mother needs all the help she can get!) So, to Geegee, Gogo, Ginny, Mary Frances, Lauren, Meagan, Sally, Molly, Marge, Laura, Hailey, Lisa S, and Nell, HAPPY MOTHER'S DAY and THANK YOU! This Mother's Day Weekend, we spent time in the swings...

Celebrated our 2 brown eyed girls...
Loved on world's chubbiest cheeks...
Played in the sprinkler...
Paused to smile for a picture...
Bounced...
And bounced some more...
And bounced more still...
Loved on our two littlest ones...
And gave thanks for the one who wasn't with us yet last Mother's Day!

Wills

Happy (almost) Birthday, Wills! The decision to have Willsy was an easy one- it made itself. But I will say that Findley and I had both always wanted a big family and we had already been robbed of so much, we weren't going to let what happened to Virginia shatter that dream as well. Besides, the more love Virginia has in her life, the better.

I definitely wasn't prepared for the emotions that came with my second pregnancy. Many people have told Findley and me over the years that we were brave to have other children after our first experience, but I don't think that is the case. We knew exactly what caused Virginia's injuries and weren't concerned about that reoccurring. What I struggled with during that pregnancy was to some degree the same as what all mothers struggle with when welcoming subsequent children- guilt over abandoning the first child. But for me, those feelings were stronger because my first child still needed me every bit as much as the day she was born and always would.

I felt guilty that I would be able to provide Wills with a healthy start, something I wasn't able to provide for Virginia. I knew it wasn't our fault, but I also knew that what we went through with Virginia would protect Wills from a similar occurrence. I felt guilty that Virginia would have to watch him succeed at things she could never do. How could I cheer for him as he took his first steps while she watched from her wheelchair?

I was afraid that after all I had been through with Virginia, there was no way I could ever love another child as much. How wrong I was! Wills is one of the biggest blessings in our life, and in Virginia's, too. From the moment I saw those big eyes, I was in love. He is better therapy for Virginia than any amount of time in her stander because he loves her so much.

Being Virginia's brother has created a heart of compassion in Wills that is unusual for a four year old. Findley took him to a birthday party about a month ago and the kids were playing 'Duck, Duck, Goose.' There was a little boy at the party who walks with canes and he tagged Wills. Wills could have easily beaten him around the circle to reclaim his spot, but he let the other boy win. Findley said that he had tears streaming down his cheeks as he watched from the sidelines because he realized the impact Virginia's suffering has had on Wills. When I asked him about his actions at the party, he only had one thing to say. "Mommy, I would have wanted someone to let Sissy win, too."

Wills does not want to go anywhere without Sissy. If he goes outside to play in the yard, he wants her to come, too. Wills only goes to school three mornings a week, but his preschool classroom is next door to Virginia's kindergarten class. If Virginia doesn't go to school, he won't go either. They are two peas in a pod. We are celebrating his birthday today, and when we were making the invitations for his party, the first one he made was for Virginia because "Sissy's my best friend."

Sometimes I worry about the future. I worry that Wills will get bored of playing with Virginia and she will be devastated when he doesn't want her company all the time anymore. But Virginia has a bigger heart than I do. There is nothing she likes more than watching Wills play. She wasn't sad to watch him take his first steps- she was cheering right along with me. She finds great joy in his accomplishments, just like he does in hers.

Wills will have to make sacrifices in his life because he is Virginia's brother, but she will have to make sacrifices for him, too. Learning to sacrifice for each other is one of the many blessings of being a family. I have worried a lot about finding the time to teach Wills how to play soccer or how to ride a bike because so much of our energy goes toward caring for Virginia. But I have realized that I can't possibly figure out all the ramifications Sissy's injuries will have on Wills. I have to let go of my worry and trust God that there will be redemption in the way Wills' heart is impacted.

There is an aspect to our tragedy that made me want to close up. I was so sad that it was hard to be open to the joys of life. There are still days when I want to sit on the couch with Virginia and cry, but Wills has forced me back into the world. He has been a very healing presence for all of us. If you force yourself to be open in the aftermath of sorrow, life will find a way to come creeping back. God has used Wills to teach me how to embrace the world again.

Wills will be different because of Virginia. He will have a hundred cavities when he grows up because taking a three year old to the dentist isn't on my radar when I already have a neurologist and pulmonologist on speed dial. He doesn't realize that you can sit down to eat in restaurants because since Virginia can't eat out, we usually don't. (Last week he asked me what the tables at Davenport's were for when we went to pick up a pizza.) Wills also thinks that all planes go to Disney World.

But for an almost four year old, he is already asking some tough questions about life. The other night, he asked me why God healed his eyes (he had conjunctivitis) but He didn't help Sissy walk. He practices  selflessness and service every day, but he doesn't even realize it because he loves Virginia so much. As we approach his birthday, I am overwhelmed with gratitude for his life and for all that he has taught me in his four years.

We had a party with his school friends today at one of our favorite places....

I forgot to mention that Wills cut his own hair yesterday.

But the bad haircut didn't keep him from having fun at his party!

Wills got a bike for his birthday. I know this post is long, but I have to tell a funny story about the bike. I wanted a plain, red bike. All the bikes at Target and Wal-Mart were painted with tacky slogans like "Road Rage" and "Major Damage." I finally found a beautiful bike at Cahaba Cycles, but it was $194. Crazy for a four year old. So, sadly, I went back to Target and bought the "Major Damage" bike. I was elated last night to find that all the wording was on stickers, so I just peeled them off, leaving a bright, cheery red bike. Findley accidentally threw away Virginia's jeans (another story), so this morning he was outside digging through the trash and Wills was riding his new bike in the driveway. Wills saw the tacky stickers I had thrown away and said, "Cool. Are those for my bike?" Thankfully he didn't find most of them, but his bike definitely now says "Major Damage" in more than a few places. Guess Target knows four year olds better than I do!

Spent the whole day outside