Come to the dark side

I run tech for community theater. You know, turning lights and microphones on and off, playing sound cues, and such. I am in “tech week” for a show that opens Friday. This means rehearsal every day putting all the technical details together. Lights, sound, costumes, musicians, sets, props…anything and everything. By Thursday we need to be ready for a preview audience (what some people would call the dress rehearsal.)

I was at the theater before last night’s rehearsal chatting with the light and sound designers. I am operating the sound board, which for this show means 7 body mics, some sound effects and a few monitors. I asked the lighting designer who was running his board, and he said he didn’t have anyone yet. Starting tech week without a board operator is nerve wracking at best.

I knew a friend of mine is interested in getting involved in community theater, so I called her. She was at the theater a half hour later. She hasn’t actually run a show yet, but the light designer and I could tell just from her writing down cues that she will be more than capable of handling her 300-some cues. I’m excited to work with her, since we get along so well and she is taking a break from handbell choir.

One more person caught in the addicting creative process of the theater…

What just happened?

My son is at church. Preaching. I just can’t wrap my head around this. My baby boy is sharing words that God put on his heart. In public.

He seemed to have a special connection with my dad, but I thought is was just because they shared the same chronic illness. I couldn’t have imagined years ago that he would be following in Grandpa’s footsteps. I know this may not be a vocational choice, but I am convinced God gave him the gift of spoken word.

He has been working on this all week. He asked me enough questions I know he was trying to be accurate in his Biblical references. I got to hear him practice a couple times, and I have to say I was impressed. Not only with the message, but with his improvement in a couple days. I admire his openness. I don’t know too many young men with that kind of insight, let alone the nerve to say it to a room full of people.

I don’t know exactly what God has planned for him, but I know it is something special.

A Community in Anguish

Human society is built around communities. Most communities consist of either family, neighbors, or colleagues, or acquaintances who share a similar journey. One of my communities was rocked yesterday when we learned of the passing of an eight-year-old girl from complications of systemic juvenile arthritis.

Yes, that’s right. Arthritis killed a little girl.  Let that sink in for a moment.

My heart goes out to the family of that girl who had to make the agonizing decision to discontinue life support for their precious child. I have friends who have come close to losing a child, some on multiple occasions. I have watched fathers in tears describing the struggles their child has faced. I have held in my arms mothers remembering their battle with this horrible illness. I have nodded in sad recognition of the difficulties of other families. I, too have cried in unbelieving grief.

When I hear stories of other parents that have struggled to find a diagnosis for inflammation of the spleen or liver, fluid in the lining of the heart or lungs, high spiking fevers, strange rashes, joint aches, morning stiffness, or swollen lymph nodes, I realize how fortunate my family is. We have not had to deal with joint replacement surgery, eye inflammation that can lead to blindness, ridicule and judgment from family and friends who don’t believe the diagnosis, intolerant educators blinded by their ignorance, unavailability of trained pediatric rheumatologists, and a medical system that can make it almost impossible to obtain expensive life changing treatments.

Yes, we are fortunate. In spite of the loss of innocence of both my children, in spite of the dozens of medications my son has had to take in the last seven years, in spite of the hundreds of hours we have spent in doctors’ offices and hospitals, in spite of the thousands of dollars in lost wages, we are blessed. I have never wondered, although partially from denial, whether my son would live to see his next birthday. I have never had to choose between paying rent and buying medication. I have never lain awake nights wondering why doctors can’t figure out what is wrong with my child. I have never feared for my job because of too many medical appointments. Unfortunately, I have heard numerous stories of exactly these concerns.

There are other, less tangible ways we are fortunate. We have made lifelong friends in an instant. We have become stronger and more compassionate. Our family has become closer and more resilient. We appreciate the little things more. We don’t take our health for granted. Our faith has been strengthened.

Many people who learn of our situation feel sorry for us. While I appreciate the sympathy, it is unnecessary. I do not look at this as a curse. Yes, there are painful moments, such as this week. I and thousands of parents like me will never stop fighting for our children. But most arthritis parents have not lost a child. It profoundly wounds all of us when one does.

Somber day

I am, along with the rest of the nation, remembering the terrible events 14 years ago today. Like every American over the age of 20, I remember exactly where I was, what I was doing, and who I was with when I heard the news. I wasn’t personally affected at the time, but I remember realizing that the world my children know will never be the same as the one I knew as a child.

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When life was simple

I am in a quiet mood for other reasons today. My work has been particularly challenging lately, and with all the time I have to take off for medical appointments I have had some long days. I’m getting to old to put in 12-14 hour days all week. Lack of sleep makes me grumpy and makes it harder to deal with my melancholy brain.

Also, The Boy is struggling with his medical condition. This week has been particularly hard on him also. He hasn’t felt good enough to leave the house for 2 days. I wish I could help him, but short of making sure he has things like medicine and water there isn’t much I can do to help. I’m not even home enough right now to give him any moral support.

Today is one of those days I wish we could turn back the clock and fix mistakes we made years ago. There are so many unpleasant things in my life stemming from my poor choices that it just adds to the guilt. I have messed up and my kids are paying for it. Yes, I know every mother thinks that, but my kids really are suffering in some ways. They are too wise and experienced for their ages. They know things teens shouldn’t have to know.

Why can’t life be simple like it was when I was a child?

Healthy is all relative

Are you healthy? Is your family? Do you know what healthy really means?

I wish I had appreciated the health our family has lost. My son used to be an excellent athlete whose biggest worry was whether his uniform and water jug were clean. My daughter used to be a dancer whose toughest decision was whether to take jazz or hip hop. I used to enjoy the American dream of a husband, 2 kids and a house in the suburbs. All this was before my neurological differences caught up with me. Before my daughter developed crippling anxiety. Before my son was attacked by his own immune system.

Now we see healthy as a day when he doesn’t need pain medicine to get moving. When she can go to school without a panic attack. When I can talk myself into going to work, then stay focused enough to get there. Healthy is a week when I spend more time at work than in a doctor’s office.

To some, poor health might be having a sore throat for several days, spraining an ankle, getting the flu, or being fatigued from too many short nights. I don’t want to minimize those challenges, especially if you aren’t used to anything less than perfect health. If the worst you know is a broken leg, then a broken leg is pretty serious. I wish the worst I knew was a broken leg.

Whatever your circumstance, take the time to appreciate the abilities you do have. I am grateful that we function as well as we do. That we have proper medical care. That we have insurance to pay for necessary medications. That I have friends and family I can count on. I know it could be much worse, and I thank God it isn’t.

Fire in the hole

A lot of my friends and family know that a family in my neighborhood had a house fire Monday night. OK, technically it was eeeeaaarly Tuesday morning.  But I hadn’t slept yet, so it was still Monday.

We are friends with this family. We go to the same church, our kids are friends, and we see each other sometimes at community events. We know each other well enough to trust each other with our kids, so naturally they knocked on our door at 1:00 in their pajamas. (Don’t your friends do that?) Little brother was actually wearing just his Spiderman undies, carrying his blanket. The kids ended up spending the night with us, and I was glad to do it. This family didn’t know what condition their home would be in, the least I could do was take in the kids. Fortunately the damage was minimal and should be repairable.

Growing up my biggest fear was a house fire. Maybe because of the stupid movies they always played during fire prevention week. Apparently they were designed to scare you into making an escape plan and other preparations. This was before too many people had smoke detectors. Monday was the closest I have actually come to a house fire, and it was close enough. Even after taking a shower and changing clothes, I still smelled like smoke on Tuesday. It’s no surprise the firefighters told my friend that simply washing their clothes wouldn’t get out the smell.

When you are in crisis mode, most people don’t do a lot of deep philosophical meditation, so it wasn’t until Tuesday that I stopped to think about how God laid things in place well before Monday. My kids are teenagers, but we happened to have a pint-sized tshirt in our “give away” area so Little Brother had something besides Spidey to wear. Not that it bothered him. We had considered moving over the summer, but didn’t. This meant we were close enough that mom didn’t have to worry about the kids. My son and I were both having trouble going to sleep, so we heard the knock on the door. My kids only attend school in the afternoons, so getting to bed a 3 am wasn’t a big problem. Our kids all knew each other, so Little Brother hardly knew anything was wrong. A few more examples came to mind, but my memory has a slow leak, so they are long gone.

I asked my friend what they need, and she didn’t know yet. I’ve been there, and it seems like I always think of something a half hour later. Fortunately she has lots of people willing and eager to help when she figures it out. And me? I’m thankful nobody was hurt and the damage wasn’t worse. And that most of the 2-3 dozen firemen were standing around with nothing to do.

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Some of you immediately recognize the reference in my intro page. Others are scratching your heads. I get it. I don’t understand every cultural reference someone throws my way. But it seems I am the master of obscure connections. Sometimes I feel like Freddy Mercury when he combined John Wayne, Star Wars, politics and illegal drugs in the same song. Except that when he wrote those lyrics they somehow made sense.

I’m not so eloquent. Every day I say something that, in my mind, makes perfect sense, but falls flat when it comes out of my mouth. My poor daughter can only shake her head and laugh when we are talking about what to have for supper and suddenly I’m commenting on the song my brother sang from the basement of the house we lived in when I was in 4th grade.

If I am ever having a conversation with you and I say something that seems to come from left field, just smile and remember that is one of my quirks and why I’m so adorable.

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Oh, and a song in Les Miserables, ends with Jean Valjean singing, “Who am I? 24601!”