Like A Child

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

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

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

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

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

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

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

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

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

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

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

Who will shed the last tear?

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

He doesn't have to see to believe.

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

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

This one is giving me fits,

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

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

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

Happy weekend!

Quick Story

Wills and Virginia don't see each other at school very often. Today when I picked up Wills, he told me that he saw Sissy.

"I got to sit next to Sissy at the assembly in the gym," he told me excitedly. "She didn't talk that much- I was proud of her."

I laughed- Sissy isn't very good at being quiet when she is supposed to be. (like in church)

"But then, I heard two boys making fun of her from all the way down the aisle. It made me sad, and I didn't want Sissy to hear, so I started whispering in her ear to cover it up"

Wow. I was so proud of Wills, and so devastated for Virginia, all in one moment.

I didn't know what to say to him.

"You did the right thing, buddy. And it is sad when people say mean things."

Later, I could tell he was still thinking about the assembly.

"Do you want to talk about it some more?" I asked.

"No," he said. "But when I am as tall as Daddy, I am going to squash those mean boys like bugs."

Look out, mean boys of the world. I think Wills is going to be one tall guy!

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Wills and Eliza have both been extra sensitive to Virginia since she got her tube. Eliza gives her a rice krispy treat every morning and says, "Sissy feel better." Yes, Eliza eats rice krispy treats for breakfast (only sometimes!)

The tube is ok. There are still lots of things to figure out. We have only gone down on the seizure medicine 15 mg (the goal is to go down 30-60 mg), and her cough is definitely better. However, she isn't sleeping, so I am trying to figure out what to do. It makes sense though- the medicine makes her so zoned out at night that she doesn't swallow, thus all this junk builds up and leads to the cough. She didn't seemed zoned out to me at the higher dose during the day, but she must have been if she was only swallowing twice in an hour.

Thanks for your continued prayers as we continue to struggle through the tube.

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Yes, I have tried (once) to get our Christmas card picture. Every year the company that prints ours has a 40% sale for one day only and it's coming up soon. I am never ready, but this year, I am going to try! Eliza, my strong-willed child, refuses to get in the picture. I can make her, but she screams, so what's the point? So it may just be these two this year.

Rain, rain, go away

Have I mentioned that this one is tough stuff? And funny, too.

Findley and I got to go to the Children's Hospital 100 year Gala on Saturday night. Wills got in on our picture. Please notice what he is holding. He was in the process of making his own tuxedo out of a paper bag when we left.

Now I am going backwards, but here are a few Halloween shots.

Virginia and friends...

Wills and friends...

Wills and Virginia...

Virginia was Daphne from Scooby Doo, but the wig wouldn't stay on and it was so cold, she needed a sweater over her dress. Oh, well, she looked cute regardless.

Eliza (stubborn) wouldn't wear her costume, but she did eat her candy.

We went to Disney on Ice the weekend before last. It was great.

I wasn't trying to make light of what happened in the assembly today with my story, but one day it will probably be okay with me if Wills defends Virginia with a punch or two. I cannot hide Virginia away, nor would I want to. We are called to be a part of the world. And just look at the Halloween picture with her friends- she gets a lot of love. But I do try to protect her from as much as I can, and obviously Wills is picking up on my techniques. God bless that boy!

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

Five

IMG_0621 Wills turned 5 on Sunday. It is hard to believe! Last night after the girls were in bed, Findley, Wills and I looked through some pictures of Wills' first few days of life.

Wills was born 4 weeks early on a Monday afternoon. Needless to say, I was a nervous wreck at the end of my pregnancy. I wasn't worried about what happened to Virginia repeating itself, but once you realize life isn't a fairy tale, your mind begins to rest on every possible problem out there.

I had called my OB on Sunday to say I didn't feel like myself. (I am sure she appreciated my descriptiveness.) She said I was welcome to go to the hospital if I wanted, but she was sure I was fine and she would see me at my Tuesday check-up. Then I called my mother who was on the road to Augusta, Georgia, to watch the Masters.

"Just don't have the baby tomorrow," she said. "I can't take my phone into the Masters, so I won't be able to make it no matter what."

"Don't worry,"  I said. "It's too early." But I think my body had already decided otherwise. My brain knew that my 36  week baby would be fine if he came now, and that it wanted to see his face. Let's end the worrying, my brain dictated. No surprise, last minute, middle of the night labor. Someone just hand me a healthy baby, please.

I scrubbed out the cabinet under the kitchen trash can Sunday night (for the only time ever) and went to bed early.

On Monday morning I woke up and had gained seven pounds overnight. Hmmmm. I knew this wasn't right, but I had eaten a lot of Mexican food over the weekend, so I let it go.

Virginia and I went on a walk, showered, went to the paint store, and started painting the window box Findley had built that weekend. It was the last thing on the to-do list before baby arrived.

Around lunch, my dad called. I mentioned the seven pounds.

"You did not eat seven pounds worth of food this weekend, honey. It's not possible. You need to go have your blood pressure taken. Now."

I hung up the phone and relayed the message from Dr. Dad to Findley, who was home for lunch.

"Ok," he said, "Let's go to the Rite Aid and see what your pressure is. But can I finish my lunch first?"

As I have surely mentioned in the past, Findley is an easy going guy with one exception. Food. He doesn't eat cold lunches. He says if he does, he's hungry five minutes later. At the moment I got off the phone with Dad, he was in the process of heating a brownie in the oven (not the microwave- that makes it too tough) to be the core of his ice cream sundae dessert. So I waited for him to finish his brownie** and then the three of us went to the Rite Aid to check my pressure.

It was astronomical. I called my OB. She said, "Take Virginia home. Make sure you have someone who can keep her. And then I'll meet you in labor and delivery. Drug store machines are notoriously high, but that is very high. If we can't get it down, you're having a baby today."

My friend Laura came immediately to keep Virginia and Findley and I were on the way to the hospital.

I called Dad back, and he was getting ready to go into surgery.

"Am I going to be ok?" I asked.

"Yes," he said. "But I think you are going to have a baby today. Have you called your mother?"

"Yes," I replied. "Twice. Her phone must be off."

"Well, I'll keep trying. As soon as I get through with my case, I'll hit the road. I love you. Be brave. It's going to be just fine."

Dad and I both need Mom in a crisis situation. But not only was her phone off, it was in her hotel room. Apparently, if you even have a cell phone on your presence at the Masters, they pull your passes. Poor Mom. When she got back to her room that night, she had 57 missed calls. All but 2 were from Dad.

"I knew that I either had a new grandson or someone had died. I was hoping for the former," she laughed later.

When Findley and I got to the hospital, Dr. Brown spent about thirty minutes trying to get my pressure down, but to no avail.

"If this were earlier in your pregnancy, I would admit you, give you some meds, and try to make it to thirty-seven weeks. But at this point, you are four days from thirty-seven weeks and I am afraid if I asked you to spend the night at the hospital while that baby is still inside you, you might have a stroke from the stress. So let's go."

Findley piped up at this point.

"Dr. Brown, Friday is my birthday. It would be really special if my son were born on my birthday. Can it wait four days?"

I don't know who shot him stronger death rays, Dr. Brown or me. But she responded first.

"No. Your wife needs to see the whites of that baby's eyes, and she needs to see them now. Understand?"

To this day Findley maintains that he was kidding, but I'm not so sure and neither is Dr. B. Thank the Lord for Dr. Brown. She understood my obvious mistrust of doctors and hospital staff after what had happened to Virginia. She knew the tremendous pain that was still so fresh and she knew having another baby was tough enough for me without anything unexpected happening.

"Abby, I want you to hear me on this," she said. "Once that baby gets here, you've got ninety seconds to drop your pressure. If it doesn't come down to normal, I'm going to have to start you on mag sulfate, which means it'll be three days longer until you get to go home to Virginia. Understand?"

"Yes, ma'am," I said.

"Get her ready for her c-section," Dr. Brown said.

Wills was born thirty minutes later and he was absolutely perfect. I took one look at him and my pressure returned to normal.

Hospitals, particularly labor and delivery floors, bring back lots of hard memories for me, so Dr. Brown let me go home the next day. Wills followed about four days later.

He has been a tremendous gift to our family. Oh, how we love that precious kid!

(**for the record, Findley's version of the story is not that he finished his brownie, but that I made him put another coat of paint on the window box before we left for the hospital. Who do you believe?)

One of two favorite birthday gifts. Only took Findley 6 hours to put together!

Birthday cruising and snacking

Day of cake

Birthday volcano eruption

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Joint Lego Party with his best friend

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We had to stop this when other kids wanted to be thrown.

Catch me if you can...

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Findley's parents came up for the party

Virginia was sick and had to miss the party, but she here she is with her Granddaddy and her ice cream smile!

On the way to the playground earlier today

And just to tempt you...we have made a tremendous breakthrough with Virginia's communication in the last two weeks. I can't wait to share it all. It is an amazing story. I just haven't been able to process it enough to share yet, but hopefully this week. It will take time, but for the first time ever, I know we are on the right path to 'unlocking' Virginia. As you can tell, she is proud and excited. Praise the Lord, Praise the Lord!

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!

A Mother's Guilt

IMG_7387 For the past few months, I have been in a funk in the afternoons. Really ever since Virginia and Wills started back to school. It has taken a little while to put my finger on what's going on, but I think I finally have.

I am overwhelmed by my inability to take care of my children on my own.

Let me clarify. There are plenty of times when I am alone with my kids and we do fine. Their basic needs are met and sometimes we even have a little fun, too. The problem is that I can't hold Virginia and Eliza simultaneously. If I get Sissy out of her chair, immediately Eliza starts crawling up the stairs or trying to swallow a penny. Virginia needs a certain level of quiet so she can concentrate to eat or do school work. She doesn't get that if I am chasing Eliza at the same time.

Wills deserves my full attention sometimes, too. He needs to be able to rough house without being told, "Be careful. I'm holding Virginia," one hundred times. He needs me to help him learn how to ride his bike and throw a football. Occasionally, he needs to be free to be four.

Leaving the house with all three also poses a serious challenge. I can't push a wheelchair and a stroller, so if I have all three, I have to carry Eliza and push Virginia. It is not so simple to push a heavy wheelchair and hold a very heavy fourteen-month-old. Now try carrying a bag of groceries or retrieving your credit card from your back pocket while holding Eliza and keeping one hand on Sissy. Not simple at all.

Ever since Wills was twelve weeks old, I have had help with my kids. Right now, that help looks like 12:15 to 6:15, Monday- Friday and a date night once a week. I love Amy, Virginia's current helper, very much. I am very aware that my life, all of our lives, depend on her service to our family. And yet having her here causes me to face the reality that I can't do it on my own.

At twelve-thirty, Eliza and I walk to school to pick up Virginia and Wills. When we get back, Amy has Virginia's lunch ready and she sits down to feed her. Two days a week, Virginia has some type of therapy. On the other three days, Amy (a veteran teacher) works with Virginia on her homework, academic goals, speech device usage, and wheelchair driving. After that, we have a snack and all of us find something to do together- we go to the zoo, jump on the trampoline, or read books on the gymnastics mat.

Sounds simple, right? It should be, but of course for me, it's not. The problem is I want to be in two places at the same time. If Wills and I are drawing with chalk on the patio as Virginia and Amy leave for therapy, I have a pit in my stomach. I should be going with her, I think. She just got home from school and she's already leaving. The reverse is true as well. On days when I take Sissy to therapy, I feel sad about leaving Eliza, my baby, with someone else to be put down for her nap or about not being the one to make turkey pinecones with Wills.

I used to try to make myself feel better by comparing our situation to other families with three children about the same ages as mine. How much one on one time does Laura actually get with Miller, I wondered? For a typical mother of a first grader, probably not much. Virginia's first grade friends are at school until 3, and then most days they have ballet, tap, tennis, piano, art... and we don't have any of those things.

I am sure that Laura has a certain level of sadness about the fact that Miller isn't a baby anymore and that they don't spend as much time together reading books or taking walks. There is a real sadness in watching children grow up, even healthy ones. But Miller has moved on to be able to make friends and entertain herself. To read a book on her own or play a game with her brother. Virginia still needs me just as much as she ever did.

Several months ago, friends and family started encouraging me to let my helper actually help. Let Amy do most of the feeding while she is there, I heard from more than a few wise friends. (who were probably just tired of hearing how overwhelmed I feel). You have to give up control a little, Abby. Let go of the reins.

So for a while, I let Amy do most of the feedings that occurred while she was here. Feeding Virginia isn't my favorite thing anyway- it is slow, tedious, and frustrating. It is certainly not the most fun time with her, and so I decided it was ok to save my energy for more special moments and let Amy feed her.

But then this previously mentioned sadness began to creep into my soul in the afternoons and I have been struggling to identify its point of origin.

In the last few weeks I have had an epiphany of sorts. I think a lot of my sadness is due to the fact that I miss Virginia.

I have realized that physically taking care of Virginia is one of the biggest ways I show her my love and one of the biggest ways we communicate. Wills and I communicate even when we are working on different tasks because he can talk. He tells me about his day, and I listen and respond. It is different with Virginia. Opening her hand to keep her thumb from digging into her other fingers, brushing her hair out of her face, feeding her dinner, holding her, and even getting up to reposition her ten times every night are all ways that we connect. As hard as some of these tasks are, giving them up robs me of great joy. I am her mother. I want to be the one who takes care of her. I miss her when I'm not.

The natural order of life has been gravely impacted by Virginia's injury. My seven-year-old needs me more than my one-year-old, and that hurts. It creates an unnatural, extremely difficult situation that I am blindly struggling through. I feel pulled in many different directions. I know that I am not the only mother who struggles with balance, but as with almost everything else, Virginia's suffering raises the issue to new levels.

And so here I am. Wishing Virginia could help entertain Eliza. Wishing I could watch my oldest two run around the park while pushing my baby in the swing. But accepting that I can't change what happened and seeking to find some level of balance.

Learning selflessness is one of the best parts of being a family and I don't mind that my kids have to suffer on account of each other. I just have to make sure that no one suffers too much or gets lost in the shuffle. Even me.

(I realize that this post is way too long. I am too tired to edit and sometimes work through things as I write about them. Also, I thought some of the detail might be helpful to my special-needs mom readers.)

Silly Willsy

IMG_6466 Wills has been sick since last Wednesday night. It seemed like just a regular fever virus, but early Sunday morning, it took a turn for the worse and I have never seen him as sick.

It has been a quiet house without my chatterbox chattering away, but thankfully he finally seems to be heading in the right direction.

People often comment on how Wills seems wise beyond his years. And, in some ways, he is. But in most ways, he is just a sweet, silly, four-year-old boy. I thought I would share some of his recent antics just in case you need a laugh on this rainy Tuesday afternoon.

*Last week, Wills and I were at the park. I struck up a conversation with a very pregnant lady who shared that she was nervous about her upcoming scheduled c-section. I reassured her that I had had three and found the recovery to be simple. We talked for a while and I didn't think anything else about the exchange until later that night.

"Mommy, " Wills said, "You told that lady we met that you have had 3 c-sections. So how were Huck and Sawyer born?"

Wow. I am not sure how he knows what a c-section is, but the most concerning part to me is that he thinks I gave birth to two labrador retrievers!

(and, by the way, don't forget, if anyone is looking for a dog....)

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*On Saturday, when Wills was laid out on the couch, he told me that he was so sick he "didn't even want to look at his Wizard of Oz Pez Dispensers." That is the definition of sick for Wills!

*On Sunday, in an effort to cheer him up, we looked at our scrap book from Disney World. We talked about our next trip (not until February) and I told him we were staying in the same place we had before, a Polynesian inspired hotel.

"That worries me a little bit," he said. (That is exactly how he worded it- it just cracks me up.)

"Why?" I asked.

"Because, that thing in the pool, you know, the volcano. Is it real?"

"No, buddy," I explained. "That is not a real volcano in the pool. It's pretend."

"Good," he said, visibly relieved. "I was thinking that if we were in the pool and the volcano spit fire on us, it could really ruin our trip." Yes, I would say a fire-spitting volcano would be a definite trip-buster!

* Wills is still too sick for school and I haven't been able to get much done around the house. Eliza's birthday is Thursday, so while she was asleep this morning, Wills came with me to the attic to find some gifts for her. (I am a definite recycler when it comes to my kids' toys.) I asked him to help me find something he used to play with that he thought we could wrap up for Eliza. He thought this was a great idea. We actually found four toys that I know she will love. (and the price was right!)

We were downstairs wrapping the finds and Wills all of sudden looked at me, like a lightbulb had just gone off.

"Mommy, this is a great idea for Eliza because she is a baby. But you wouldn't do this for my birthday, would you?"

Starting celebrating a little early. Maybe by Thursday she won't be as timid with her cake.

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Somewhere in the Middle

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

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

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

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

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

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

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

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

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

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

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

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

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

and I also really like the New Living Translation:

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

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Celebrate Today

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When we were in Memphis last week, I voiced some frustration to my dad over how hard daily living activities are for Virginia. When I watch her suffer through so many simple things, I wonder how we are going to keep her spirit from breaking under the weight of what she endures every day. I was also complaining about how much time and energy it takes just to maintain the status quo.

"Dad, how am I ever going to get anything accomplished?" I wondered out loud. "When is the pace of caring for her going to slow down? When I am going to have time to write my book?"

Dad has a gift of being able to zero in on the truth instantaneously.

"You might not ever write that book, Ab. For all of us on this earth, but particularly you and Findley, it's not about what we've accomplished at the end of our life. It's about how we live every day and celebrate every moment. It doesn't matter where we end up in terms of graduate degrees or number of books published. What matters is how we embrace life along the way. It's the journey that counts, not the destination."

(I want to clarify that Dad meant that our earthly destination doesn't matter, not our heavenly one. Clearly we know our ultimate destination- heaven. And knowing that final destination gives supernatural meaning to what we go through on our earthly journey and should help give us the right perspective on suffering. Knowing what awaits us at the end of our lives should free us from worrying about 'the small stuff,' even when 'the small stuff' is as big as what happened to Virginia. But, unfortunately, my heart and mind don't always work that way.)

Dad eloquently spoke one of the most important lessons Virginia has taught me. To celebrate every moment. I used to be a planner, someone who always waited for the perfect moment to let loose. When Virginia was little, I was so crushed it was hard to smile. I wanted to wait until things got better, until I knew she was going to be okay.

But I have learned that it is my job to seek out every moment of joy Virginia can have. Right now is Virginia's moment and I need to string together as many memorable ones as I can. Today is my best opportunity to make her smile and to seek out her infectious laugh.

My best friend invited us to her family's beach house for a few days last week and I almost said no. We were tired from visiting my parents and the beach is not simple for Virginia. Just getting her down to the ocean is a challenge. But no one loves playing in the waves more than she does. Look at my pictures- Wills is happy, but Virginia is elated. She would play in the waves all day if we were strong enough to hold her for that long.

We eat a lot of ice cream at our house and we have a lot of dance parties. We never pass up a trip to the beach and I am pretty sure that Findley, Virginia and I will retire to Disney World one day. We do all those things because they are things Virginia loves, things she can enjoy. But the truth is that we are all called to live that way. Each day is a gift- make the most of it.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Matthew 6:34

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She had been up since 11 pm, but was ready for an adventure. (W and E are asleep in the back.)

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