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.

Compassion, Not Pity

Somebody who shall remain nameless went back to school today after a week of sickness. Her teacher called me to say that she was miserable- crying big tears. Her sweet teacher was worried that she was still feeling bad. I went to get her, and let's just say Miss Smarty Pants beat the system. She's not looking so sick to me! My friend Sarah's three year old daughter, Katie, has down syndrome. Sarah and I were talking yesterday and she reiterated something I have heard her say on numerous occasions.

"I hate it when people stare at our family. I hate that sweet look they get on their faces when they look at Katie. Like, Awwww. Look at that disabled girl. Isn't she cute? It's a look of pity. I don't want people to feel sorry for her or for us. This is our life, and it's a great one."

Sarah went on. "At church on Sunday, a friend came up to me and said, 'Your life must be so hard.' What? Yes, there are hard things, but surely her life isn't perfect either. I am just so tired of the sympathy!"

Sarah and I are close enough friends that I can laugh at her. And yesterday I did. Why? Because just two weeks ago, Sarah was telling me about how none of her friends understand what she goes through. That even her own sister will call her up and complain about something ridiculously unimportant, like the fact that her teenage daughter wants two hundred dollar jeans for Christmas. "I just get so frustrated listening to her complain about stupid stuff," Sarah vented. "I mean, doesn't she realize how good she has it? That I would give anything in the world for that to be my worry?"

As I pointed out the inconsistencies to her in how she wanted to be treated, she started laughing, too. But, all joking aside, I realized a long time ago that I do not have a playbook for how I want friends, or strangers for that matter, to respond to my own situation with Virginia. I am just as inconsistent as my friend Sarah. Do I want people to view me as just another mother of small children? Or do I want them to walk on eggshells around me, always aware of the fact that I hold the trump card for pain? (Just kidding- that last question is obviously hyperbolic!)

In general, Sarah does not like for people to acknowledge her daughter's disabilities. She wants strangers to look at Katie just like they would any three year old little girl. On this point we differ, and we have talked about this difference a lot. I don't mind when strangers acknowledge that Virginia is "special" and that we need a little extra help to function in the community. Just yesterday, I was struggling to maneuver her wheelchair through the door at the pediatrician's office. A man I do not know jumped up from across the waiting room and literally ran to hold the door for us.

It isn't that I wanted his pity. Pity parties can be fun for a while, but then they leave you feeling empty and alone. I am also well aware that everyone has pain in their life. Some is obvious, some is expertly hidden from view. The man from the pediatrician's office could be dealing with something far tougher than I am. But what he offered me was compassion and I was more than willing to accept it.

I don't want my friends to hide things, happy or sad, because they think my pain makes me unapproachable. My friend Laura has shared every grief I have had for the last seven years and she is very a compassionate person. It used to be hard for her to tell me when her daughter (who is roughly Virginia's age) learned a new skill, like walking or talking. She was afraid it would be like pouring salt in my wounds. Laura also used to hesitate before telling me when there was something hard in her life. "How can I complain to you about something as trivial as my child not obeying when you have so much more on your plate?" she would ask.

But I told Laura that if she really wanted to be my friend, she would have to share her joys and sorrows with me, too. Pain is pain, and there really is no way to compare it. I want my friends to be honest with me about what is going on in their lives, just like I try to be to them.

Not to complicate things, but I do have to admit that I have different standards for different people. Laura has been intrenched in loving Virginia since she was born. She has shown empathy at every turn. Laura could cry to me about her highlights being too dark and I would have to reach for a kleenex for myself. But there are other people who have been privy to Virginia's suffering, who have had the opportunity to help carry our burdens, and have responded by looking the other way. When those people complain to me that their baby isn't sleeping at night or that their daughter didn't get the part she wanted in the ballet performance, it makes me angry.

But it shouldn't because I have learned something over the years. Some people do not get it. No matter how many times you tell them. No matter how many times they witness a little bit of what our lives look like. They just do not get it and they never will. The best thing is for me to let my anger and frustration go. To have compassion on them even when they do not offer it to me. But at certain times, with people who should know better, forgiveness is a tall order.

The fact that Sarah and I are so inconsistent in how we want to be treated and in how we want our daughters to be viewed is funny to me, and not very helpful at all in coming up with a standard answer on how to reach out to other mothers of special needs children. But I think the truth is that there is no standard answer. People deal with pain differently, and every situation is unique. Obviously compassion and sensitivity are key, but beyond that, you just have to ask.

I have learned that the vast majority of people don't mean to be rude or insensitive. They don't know what to do and so they do nothing. For this mother, there is no such thing as too much compassion. And when in doubt about what compassion looks like, just ask. I promise to do the same to you.

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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There Are No Words

When she can't sit in her swing, we just sit in Wills' togetherThere are no words for her joy, either. Or for how much I love her.)
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There are no words to describe what Virginia goes through on a daily basis, no way to make people really understand what our life is like.

Sometimes I share a lot, sometimes I don't. Among my closest few friends, I hate to be the prayer hog. The one who is always in the midst of a crisis. But in caring for Virginia, I feel like I am constantly struggling to keep my head above water.

I can't tell you what it is like to rarely sleep more than two hours at a time for over six years.

I can't tell you what it is like to spend at least thirty minutes, five times a day, painstakingly feeding your child.

I can't tell you what it is like to be stuck in Groundhog Day, reliving the same few activities over and over again because they are the only ones she can do.

I don't show pictures of the ten minutes it takes to get her in the swing, all the bending, flexing, and repositioning. I also don't show pictures of all the times it doesn't work- when her body won't cooperate enough to be in her special swing for even a minute because her head keeps getting stuck back. On those occasions, all the effort of positioning is for naught and we try something else.

I can't tell you what it is like to watch life be so easy and full of fun for Wills and Eliza while Virginia struggles through every single minute. In them I see what childhood is meant to be like and it is hard not to grieve what was taken from Virginia.

I can't tell you what it is like to watch your child cry numerous times a day, and most of the time not know why. Tired? Frustrated? Scared? In pain? Feeling left out? The emotional ramifications of a brain injury? Or just being six years old? Either way, incredibly hard to watch.

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Ok, before you think I am having a total meltdown or getting carried away in a tidal wave of self-pity, I am going somewhere with this.

Even my closest friends, the ones who have saturated themselves in everything Virginia, don't know what it is really like. AND I don't know what their life is really like, either.

I have a friend who is almost a year into being a single parent to her four children after her husband left her for a more, shall we say, glamorous life. She can tell me about the hurt of a failed marriage, about the pain of infidelity. She can tell me about the loneliness and about how tired she is from doing everything for her four kids by herself. She can explain how hard it is to make a major decision for your children without having a father's input. But I don't really get it. I can listen, but I haven't been there.

I have another friend who has two kids with special needs. Her oldest has significant autism. I can ask her how she's doing, and occasionally I feel like I get a semi-honest answer. I can listen to her talk about the struggles with school, the way people look at their family in public, the sorrow she has over what she sees every day in her son. But I can't imagine the constant stress in her life because I haven't been there.

I have another friend whose family has been through some rocky financial times. I can listen, I can pray for a good job to come their way, but I don't know the stress of having three kids and not knowing where the mortgage check is going to come from.

I have another friend who never felt loved or accepted by her father and now she is dealing with a huge, painful void in her life. Again, I can have sympathy for her, but her suffering is something I can't fully grasp.

I have single friends who long to be married and have children. They probably look at my full plate and think- gosh, why is she complaining? She has all the love in the world. As much as I try to empathize and imagine what it would feel like to be thirty-one and not have Findley or my children, I can't because I haven't walked that road.

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A little closer to home, I am always trying to put myself in Virginia's shoes, to read her mind to try to figure out what she wants. Unfortunately, I can't. I don't know what it is like not to be able to communicate. I don't know what it is like not to able to brush away the hairs that tickle my nose or scratch a bug bite on my arm. I don't know what it feels like not to be able to move where I want to go or to create the things I want to create. I don't know it feels like to be so tired and yet have a body that refuses to relax.

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Virginia's suffering and the suffering of our family are pretty easy to see. I broke my arm five times as a child and my leg twice. If my father hadn't been an orthopedic surgeon, he couldn't have afforded me. He kept cast materials in the pantry because he just never knew when I would break another bone. Having a cast is an obvious marker of a wound. It's like publicly shouting, "I am hurt." So is having a daughter in a wheelchair. Our pain is right there for the world to see. (Hopefully our joy is, too, but that's not what this post is about!)

There are many injuries that go much deeper that are not visible for the world to see. Injuries to the heart and to the soul that will never be healed. We can never know what other people are going through. We all have our pain, some obvious and some not-so-obvious, but it all hurts. I have learned that even when we think we know what someone else is going through, we do not. It is better to err on the side of compassion. It is better not to judge and not to assume that we could handle someone else's trials better than they are handling them.

I know there are a lot of people who have gone through things I could never imagine. Violent things. Intentional abuse and neglect. To them, my little world may seem like a paradise. To some, Virginia's world might even seem like a reprieve from whatever horror they have to endure on a regular basis because at least she is surrounded by love. But to me, what we have been through is very difficult and I have learned that everyone else has their difficulties as well.

As my grandmother Tot used to say, "Unless you have walked a mile in someone's shoes, you have no idea what they are really going through." It is a just another way of saying that there is no such thing as too much compassion for those who are suffering. And let's be honest, isn't that all of us?

(Ginny and me at the zoo. I was, of course, sporting my most frequent accessory, a cast!)

Happy Easter!

We had a great weekend with family. We celebrated Wills' birthday and Easter jointly. I have to say, there is nothing like family!
Ok, confession. I took the next several pictures the Tuesday before Easter. I knew Easter Sunday would be too busy and I am glad I did because Wills cut his own hair on Wednesday!
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We missed you, Ginny!
Only our family lets you shoot rockets at the table
Kate and Wills aren't quite sure what to make of the player piano.

Choices?

Writing the piece below has brought back some sad memories, so I am going to start with some happy pictures from what was a great Saturday today. Findley and I took the kids to the mountains of North Alabama for a picnic and to prowl around some old cabins. We had a great time! It always helps me to see the joy that Virginia has now.

Obviously, Eliza is too heavy for Findley or me to carry for long periods of time. Virginia is kind enough to let her ride on her wheelchair to give us a break!

Choices?

When Virginia was six months old, we were in a particularly dark period. It was becoming increasingly obvious that not only would she have cerebral palsy, but that it would be significant. She was also having a type of seizure called infantile spasms upwards of fifty times a day. It was hard to imagine anyone suffering like Virginia did during that period, and knowing that someone had caused it was unbearable.

Remembering what those seizures were like is incredibly painful. The seizures happened all day long, and Virginia would violently bob her head forward over and over again, sometimes as many as sixteen times in a row. It scared her and there was nothing we could do to stop them; we just held her and cried. Sleep was almost impossible during this time. We were desperate for her to get rest, but the brain's most irritable time (for anyone) is the brief period between wake and sleep.  So as much as she needed to rest, there was nothing innocent about our angel falling asleep. That was when the seizures were most likely to occur.

Most children who are diagnosed with infantile spasms never quit having almost constant seizures. They also have some degree of mental retardation. Both of those facts weighed heavily on my mind during this dark period, but in two of the more tangible miracles of Virginia's life, her seizures ceased on day four of the treatment and she has no cognitive deficits. Neither one of those things should have been the case.

There was a several day lag in between when Virginia started having the seizures and when we left to go to Birmingham to start the treatment for them. The ACTH treatment is so dangerous for an infant's body that she had to be hospitalized for the first few days. Once we got home, I had to give her three shots a day of the medicine.  A nurse came to our several times a week to make sure Virginia wasn't suffering any of the ominous side effects of the treatment.

The day before we left to go to Children's Hospital and begin the ACTH protocol, a good friend of mine, someone I think is very wise, insisted that I leave the house for a few minutes to get some fresh air. I left Virginia with my mom while my friend and I walked around the block. She told me about two women whom she knew well.

The first woman she told me about had a very similar story to mine- due to gross medical negligence, her fourth son had severe cerebral palsy. According to my friend, she had not carried her burdens well. She was ignoring her other three children, her marriage was in turmoil, and she was filled with anger.

The other woman she told me about had lost her teenage daughter in a car wreck on the way home from a youth group hayride. The very next week, she hosted a pre-prom dinner at her house for her daughter's classmates, including the girl who was driving the car when her daughter was killed.

There was obviously a stark contrast in how these individuals handled the trials in their lives, but the next thing my friend said shocked me. She said that I was becoming bitter and angry. She wanted me to understand that I had a choice about how I responded to the pain in my life.

Time seemed to stand still as I let her words sink in. Honestly, I should have walked back in my house and slammed the door. But I didn't because I was too polite and I had too much respect for her, a smart woman with at least a decade's more life experience than I had.

At the time she said those words to me, I did not have a choice about how to respond to the tragedy in my life. The pain was far too great for me to begin to embrace my suffering. It wasn't my suffering that bothered me anyway- it was sweet Sissy's. Even at that early point, Findley and I realized we would be permanently changed because of what we were going through, but it felt like Virginia was the sacrificial lamb. We felt like nothing we learned, no increase in our faith, could ever outweigh her suffering.

Six years down the road, I certainly see the wisdom in my friend's words. She is right- we do have a choice in how we handle what comes our way. But her timing in delivering that message was off. What I needed at that moment was a shoulder to cry on and a friend who would weep with me. I know now (and I knew then) that she meant well. She could see that a bitter root had been planted in my heart and she was afraid that it would grow with time. She wanted to warn me of where I might be headed.

It takes a long time to get over the shock of tragedy. It was at least three years before Findley and I ever had even one moment that wasn't tainted by Virginia's suffering. Even if we had a minute without her, what had happened to her was all we could think of. Every smiling baby was like a dagger to the soul because it was a reminder of what had been taken from her.

There are times when thinking about those early days feels like getting sucked under by a current of the most painful emotions you can imagine. Just last week when I pulled up the pictures of six week old Sissy eating black bottom pie, Findley and I both had a rough night. Neither one of us anticipated that reaction, but just seeing that picture opened a floodgate of old emotions because that period of time was devastating.

God will use the passage of time to help heal if we allow Him into a situation. Slowly, the pain of Virginia's violent loss has begun to lessen. But it has taken years for that healing to begin and I am sure it will not be completed this side of heaven. My family and friends who have been the most beneficial in that process are the ones who let me grieve, who let me be angry, who let me question prayer and who let me be mad at God. I know I have said some scary things and been in some very hard places, but they trusted that I was God's child and that He would bring me back around in due time. They offered a shoulder to cry on and they helped carry my rage. And then they did the only thing they could do- they prayed for me and they waited on the Lord.

I am a lot like my friend who I went on a walk with that day. I am a "fixer." If you a share a problem with me, I want to come up with a solution. Many women in our Christian circles are like this. Have you seen this counselor, they ask? Have you tried this anti-depressant? Have you tried just getting away, making time for yourself? Have you read this book? We don't like for our friends to suffer and we want to remove their burdens quickly and painlessly.

Unfortunately, there are no quick fixes for true suffering. There is nothing we can say or do to take away the pain of this world. I have learned that there is no such thing as too much compassion for those who are hurting. We need to learn to listen without attempting to interpret each other's response to suffering. When our friends are in the valley of the shadow, we need to weep with them, and then trust that the Lord will carry them through to the other side.

Note: My friend apologized to me several months later. She felt like she had been harsh in her delivery and premature in her timing. Her words were obviously powerful because I have carried them with me all these years, but I did agree with her that they weren't the right thing at the time. Healing is a slow process and we have to trust the timing of the only One who is capable of doing it.