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!)


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.


(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!