Why I’m Proud to Wear My Superman Shirt

Photo Credit: Klobetime (Creative Commons)

It was a hot summer Arizona day. The smell of barbecue burgers was making everyone wish it was lunchtime already. The joyful screams of children playing in the swimming pool filled the air as the adults lounged twenty feet away, enjoying the respite and the shade. Out of the corner of my eye, I saw my daughter Cynthia jumping into the water. Then her body went limp in mid-air as she started into an absent seizure.

I threw my sandals aside, dashed to the pool and jumped in after her. I saw her body face-down, lifelessly floating downward in the pool. I grabbed her and rose to the surface fast as I could. As we neared the edge, Cynthia remained in her seizure. I pulled her out of the pool with me and cradled her in my arms for about three minutes, as she stared off into space.

As quickly as it had started, the seizure was over. She looked up at me, completely confused. “Poor girl,” I thought. “She has moved into her postictal state, and is probably done swimming today.”

Not exactly….she smiled and said, “Dad? Thanks for hugging me, and I love you too. Can I go back to swimming now?”

I let her go swim with her friends, and stayed on the side of the pool, silently weeping prayers of gratitude.

What would have happened if I had turned my head to the left instead of the right and missed her jump? What if nobody noticed and my daughter slowly sunk to the bottom of the pool?

There is a possibility that my daughter may have died if things had been different.

It’s not very often that we have true life-or-death moments in parenting, but this was one of those rare moments in time.

Every day I don my Superman shirt, I think of that warm summer day, and thank God that I had the chance to play a superhero for an afternoon.

Even now, just thinking of that causes all the emotions to flood back into my mind though. The panic. The fear. The relief. The gratitude. I would be lying if I didn’t tell you that a tear is running down my cheek as I write this.

When have you been a superhero?

 

Originally posted as Fear, Trust & Parenting 1 of 4…

There is No Plan Q, Not Even a Plan B

I have been dealing with epilepsy for 4 months, averaging 2 seizures a day. I expend energy every day trying to find the imaginary pattern to my seizures.

 Do I have a seizure when I sleep less?

Does it happen when I sleep in too late?

What if I drink too much milk?

What about coffee in the afternoon?

Does stress produce seizures?

How about flashing lights?

 The list goes on indefinitely.  Each day I come to the same conclusion – there is no discernible pattern right now. My epilepsy is a part of who I am and is not going away. I can stay up late. I can sleep in. I can drink coffee. I can be stressed. I can watch flashing lights. Or I can avoid all of these things, and it won’t matter.

Until we find the right medication mix there will be seizures. This goes against my natural inclination to be the fixer. I want to solve the problems that are placed before me. My personality is to identify multiple solutions to a scenario and plot the best way forward.

Photo Credit: Pfly(http://flic.kr/p/hELVX)

Most people have a Plan B. I have a Plan Q for everything. But not with my epilepsy. There is not even a Plan A. I just survive, relying upon my God to get me through each day. Relying upon my family to keep me safe. Relying upon my friends to give me encouragement when I need it.

There is no Plan Q. I am learning each day to be more okay with that. I am growing to understand what it means to trust my God more. I am learning how to lean upon my family and friends more deeply. I am learning this is a good place to be.

2013 – The Year to Overcome

Wish I could tell you that I am big into New Year’s resolutions, but I am not.

Wish I could tell you that I choose I key word or phrase to define what I want to accomplish for the coming year, but that would be a lie.

I usually view life more as a continuum, and see each moment as a chance to become someone better (or worse) than I was. But this year is different.

This year, my diagnosis of epilepsy in November has put me and my family in a bit of a crisis mode. The normal way of doing business just is not going to cut it. Something has to give.

I am not foolish enough to sit here and tell you that 2013 will be the year that I conquer my epilepsy, because that is not up to me. There is too much guesswork. The right medication. The right dosage. The right timing. The right positioning of Saturn in comparison to Venus.

I can decide how to respond to my epilepsy though, and starting today, I am not going to be overcome by it. I may continue to have 3 seizures every day for the rest of 2013 (God, I pray it’s not so). These seizures will not rule me.

I will not be overcome by this circumstance, no matter how much it just plain sucks.

Many years ago, God used Romans 8:31-39 to draw me into a saving knowledge of His Son Jesus Christ, and tonight He is using it to draw me back into a full assurance of His good intentions toward me. It’s a long passage, so here is just a snippet of it:

If God is for us, who is against us?…But in all these things we overwhelmingly conquer through Him who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.

Won’t you join me? What do you need to overcome this year?

What is NORMAL?

I’ve been giving a lot of thought lately to the word normal, for a few reasons.

I have well-meaning individuals in my life who keep asking me, “When will you stop having seizures and get back to normal?” I have to remind them that I am an epileptic, and this IS normal for me. To them, normal seems to mean not having seizures, so both me and my daughter are abnormal. I know I am sounding mean-spirited, and playing word games a bit here, but the insinuation unfortunately hangs in the air every time sometimes ask me when I will get back to normal.

One of my oldest friends is a future television screenwriting star – I know you will all know her name someday, and I will be able to say, “She watched my kids when she was 12, but I didn’t know she was 12, because she didn’t look 12 and certainly didn’t act 12” and people will be jealous – and she is just brilliant. Truthfully, she is one of the most well-spoken and thoughtful people I know, and also happens to be African-American. Regularly, people she comes across of all races and genders are SHOCKED at how intelligent and thoughtful she is FOR A BLACK WOMAN! So, apparently to many people it is normal for a young black woman to be ignorant, or uninformed, or not inarticulate. Again, the unintended consequences of others’ expectations produces frustration.

So, what should normal look like in the church, and what if anything does the Bible have to say about this? Believe or not, there were racial and societal tensions in the first century too, and the Apostle Paul had to instruct the early churches on how to deal with them in a God-honoring way. Most of the epistles have a verse or two on the topic, so let’s just pick one. Galatians 3:26-28 says:

So in Christ Jesus you are all children of God through faith, for all of you who were baptized into Christ have clothed yourselves with Christ. There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.

Said differently, in Jesus there is no racial differentiation, no social status, no gender break…just lovers of God. Oh that we would learn to walk in that today! When we see the teenager sucking her thumb in the Sunday service, might our heart be filled with joy that she’s worshiping God by raising her hands during worship, instead of our minds being filled with judgment that her parents let her act that way. When we see the autistic girl struggling to find her way in the raucous junior high ministry, might we befriend her and encourage our children to do the same, no matter how uncomfortable it is.

Truth is this – whether we are in Christ or not, we are all abnormal. We are all broken. Sin has touched us all, messed us all up, warped our minds, distorted our emotions, blinded us from the best in ourselves and others. So really, we are all in process, and either moving toward God or away from Him. Let’s decide together to stop defining normal and just encourage one another along the path toward Christ, day by day, moment by moment.

Epilepsy brings out the mean in people sometimes

I don’t generally direct my irritation toward individuals or specific sites in this blog, but I came across something today that is just grossly upsetting.

It comes from this site: http://illogicopedia.org/wiki/Advertising_Epilepsy, which might be one of the meanest things I’ve come across in years on the Internet. I wish this site was the exception, and in a certain sense it is, because it is so rude as to be obnoxious, but I’ve learned people are afraid of epileptics.

When people are afraid, they say and act weird, or cruel, or just plain avoid you altogether. Unfortunately, this is what we’ve experienced in my family, especially now that we have TWO epileptics rather than just one. It’s like we are creatures from another planet. Some people struggle to see my daughter as anything more than this:

but that’s not the whole truth. Truth is, she took this picture when she was trying to figure out her iPod, and it came out pretty funny. It makes her smile, so she kept it. But she not just some weird face with a creepy eye – she is also this:

She just a precious girl, made in the image of God, who happens to have seizures for some unknown reason. Her smile can light up a room. Her laughter is contagious. Her innocence is something we could all learn a bit from in this dark world. But some people can’t see past the seizures, and she becomes a label with skin on, a statistic with bones, an anomaly without feelings….but that’s just not true. And now that I am also officially diagnosed with epilepsy, I worry that I will be minimized in the same way. Even worse, that my whole family will be ignored, shoved to the side, mocked, feared, and belittled, like the website above.

My prayer is that we will find those will are not just tolerant of our epilepsy, but go beyond that; friends who understand the difficulties our seizures can create, but don’t judge us for them; individuals who see us as more than the sum of our diagnoses.

I am sure that at least one of you reading this has to deal with labels that seem to define you to the outside world. How do you deal with that? Overcome it? Rise above it? Teach those around you to see more than the problem and find the real you? Any thoughts on how I can help my daughter deal with the mean bigots of the world?

Returning to the Scene of the…Seizure

Last summer we got season passes to the local waterslide park. It was loads of fun, and everyone really enjoyed being able to go once or twice a week, until Cynthia had a seizure about two stories up on the stairs to a large waterslide. Then things got weird for me. Every time I got to the landing where she started seizing, I unexpectedly found fear gripping my heart.

What if she has another seizure? What if she is not leaning against me this time? What if she falls down the stairs and has a concussion? Oh my God, she could die if she fell from this height!

It’s amazing how irrational fear can be. I know that height isn’t a trigger for her seizures, but it didn’t matter. My emotions wouldn’t respond to these facts, and every time I walked up to that landing on those stairs, my heart rate quickened. I was able every time to just let it pass, but the emotion of that seizure returned to me afresh every time.

Parents of epileptics, do you have this same thing happen to you?

Fear, Trust and Parenting – Part 1 of 4

I will never forget the day I got to be Superman for my daughter.

Our family was at a friend’s house two summers ago, just chilling out and swimming. All the kids were in the pool have a great time, while the adults were relaxing about twenty feet away under the porch. As is often the case, we were half-paying attention to kids, while also secretly enjoying the ability to finish conversations without interruption. Out of the corner of my eye, I saw my daughter Cynthia jumping into the water…and go limp in mid-air as she went into an absent seizure!

In a moment I slipped off my sandals, ran to the pool and jumped in after her. I saw her face-down, body limply floating downward in the pool. I grabbed her and rose quickly to the surface. As we got to the pool’s edge, Cynthia was still out of it. I pulled her out of the pool with me and held her in my arms for about three minutes before she came out of her seizure. She looked up at me, completely confused. “Poor girl,” I thought. “She is moved into her postictal state, and is probably done swimming today.” Not exactly….she smiled and said, “Dad? Thanks for hugging me, and I love you too. Can I go back to swimming now?”

I let her go swim with her friends, and stayed on the side of the pool, silently weeping prayers of gratitude. She had been in the deep end playing by herself. What would have happened if I had turned my head to the left instead of the right and missed her jump? What if nobody noticed and my daughter slowly sunk to the bottom of the pool? What if…what if…what if. Even now – over two years later – as I tell you this story, I am starting to tear up. There is actually a possibility that my daughter may have died if things had been only a little different.

It’s not every day that we have true life-or-death moments in parenting (thank God – I wouldn’t make it as a parent!). But we do have choices as parents about the freedoms we give our children, and this is always in contrast with trust – trust in our children, and trust with God. The next four posts are going to be focused on this contrast, and the struggles that I continue to work through in this context.

This was one of those moments that changed the way we parent Cynthia. As you might imagine, Cynthia never swims alone anymore. We also came face to face, really for the first time, with how dangerous this world can be for an epileptic like my daughter. This paradigm shift has impacted our parenting in some really significant ways, some pretty frustrating for our daughter. Our tendency now is to hold our daughter close, maybe closer than we should, and maybe closer than she wants.

Recently, Cynthia has been frustrated, because she sees these safety concerns through the lens of mistrust. I realize that we will need to pull back and give her some chances to experience life outside our watchful eye. I want her to know that we love her, we trust her, that it’s not really about her per se; it’s her epilepsy we don’t “trust.” Yet the fear, the what if’s grounded in perhaps the most emotional moment of my life two summers ago, won’t go away.

I’d love to hear from you – how do you figure out the balance between fear and trust? I’d especially like to hear from you if you have a special needs child, as I think the answers might be a bit different.