Tag Archives: church

Let the Joy Begin

Joy 2015

It has started, and this year it is already so much more. More joy.  More dresses.  More excitment.  Joy Prom is seven weeks away.

Our church, the creator and host of Joy Prom, has dresses and tuxes at no cost for the honored guests. So, on a joyful Tuesday evening, Savannah and I met up with Ms B and Ms D.  Ms B is the large-hearted woman who co-ordinates not only Joy Prom but the special needs ministry at our church, and Ms D is Savannah’s personal angel who makes personalized lessons every Sunday just for Savannah to learn the greatness of God. They are our blessings.

We arrived at the church for Savannah’s personal fitting. Like some upscale store catering to a movie star, dresses were brought in and shoes were laid out and accessories were bountiful and pop-tarts and VeggieTales were there on demand.

For over an hour, Savannah was Joan Crawford, Grace Kelly, Betty Davis. She tried on purple dresses, black dresses, pink dresses of one shade and then another, Dresses with sequences. Dresses with layers. Dresses with many colours. The child with sensory issues wore bracelettes and rings. Eventually, she settled on an off-red, one-strapped dress with flowing scarf, accented by silver sparkly three-inch heels. Her first pair of heels. She chose, out of all of the shoes showered at her feet, her first pair of heels. I took my little girl to try on dresses and an hour later left with a beautiful excited young lady.

Savannah left that evening with a new dress, a purse, jewelry and of course shoes. More importantly, she left happy, confident and feeling both beautiful and loved.

Seven weeks before prom: let the Joy begin.


the Reality


It’s funny how life back in the real world brings reality with it. Sunday, we went to church. My parents had gone back to Texas. The fireworks had ended. We were back to everyday life. But how do you go on living with the threat of Death so close?

It happened with a friend’s sincere question. I wondered when it would happen. I knew it would happen, but I wasn’t prepared. At church a new friend asked, “How did it go at Mayo?” I didn’t have an answer. After all the blogs and texts, I had to find the words. They seemed to be lost in the growing emptiness within me. I searched the darkness before answering. “Not well,” the words were hallow and fragile, like the bones of birds released into the air, abandoned to fly without feathers or pixie dust. I explained that we were looking at either a degenerative disorder or an auto immune brain disease, but had just found out the auto immune brain disease tests had all come back negative. All that’s left is degenerative. Now we wait to see which one. I didn’t say anything I hadn’t already reported back to family or written about or discussed with multiple doctors, but this time was different. This time it wasn’t logical or factual. It was a sincere inquiry, provoking a sincere answer. I wasn’t prepared for sincerity. I wasn’t ready for the emotion.

I could feel the fire-water burning my eyes throughout the service. Desperately, I wanted to slip out and go see Savannah. I felt quite justified leaving during the last song, all about God’s mighty power. Needless-to-say, the last thing I wanted to be reminded of was his power, when I knew the darkness hanging over my child. His power that could remove it but hadn’t.

Savannah had fun in church. Again, we are quite fortunate to be apart of a church with a special needs program. It is, in fact, why I chose our church. Savannah’s amazing “special friend,” Miss Debbie, creats a lessons just for her, with crafts and stories and games tailored to Savannah’s fluctuating capabilities. Sunday, they did none of those things. Sunday, they played. There was no lesson or story or craft. They giggled and played and ate muffins. I understood where Miss Debbie was coming from. Of course all she wanted to do was Savannah-happy activities. How do you tell a dying child “no,” even if Death may be a decade away, it changes everything. Although, being a parent, “no” still has to litter my vocabulary. I am so grateful for Miss Debbie to fill in and spoil where I can’t.

All I wanted to do was spend the day with Savannah. Even though, at eleven, she wants time to herself, I still want to be near her. I don’t want to miss anything. I regret the things I have missed. Despite the wonderful bosses I had, I regret not spending that time with her. I regret missing her bravery at school, showing the other preschoolers how to sit on a pony. I regret all those early mornings, at two or three, wishing she’d go back to sleep instead of being grateful for the time with her. Now I don’t care, I just want to be with her. Even if she’s upstairs in her room, and I’m downstairs in the kitchen, I want to be close.

I know I’m not the only one. When my parents were here, my father was the same way. Grandaddy spent hours with Savannah up in her room. He would sit in the floor and wait for her to want to play with him. Then there would be giggling and laughing, until she wanted to play alone again. Then he would sit and wait some more.

But I have two children, and as the day wore on, the time came to leave with Joseph. Joseph enjoys acting. It’s our thing. I take him to rehearsals, run lines, practice choreography (and now music), help with makeup and costuming, and sit nervously in the Green Room during performances. Sunday was his first rehearsal for the Music Man. I can’t deny Joseph his childhood. I had to leave her, even if only for a few hours, it had to be done. I must’ve returned a thousand times for one kiss before I actually made it out the door. It was an incredibly long three hours, but it ended, and I returned home to her. I had made it through the first day immersed back in the routine of our lives. Off and on the whole day, there was a fire in my eyes, ringing the whites with a vibrant red, creeping in at unexpected blinks throughout the day. I can’t help wonder, as the glitter falls through the hourglass, as it all comes closer, if the whites of my eyes will turn permanently crimson. Stained with sorrow.


Bethany, the Baby

Sweet Sixteen.  What an understatement.  It’s not just the driving, even though that is so cool.  It’s that there are so many things to do.  School, parties, football games, basketball games, baseball games, church, youth group, retreats.  Addie, Julie and I always have somewhere to go, something to do and someone to see.  Oh and camp.  I can’t forget camp.  That’s where I met Sam.  He must be one of my best friends.  He was a councilor and like twenty or twenty-one or something, but we just hit it off.  We email and IM pretty much every day.  He’s stationed in the Middle East.  Army or Marine.  Something like that.  Addie thinks it’s weird, him being so old and all, but really it’s not like that.  I’m already in love with someone else, and wow, is he a good reason to go to church.


It’s not so much that I’m running from my past.  I just need a clean break.  The drugs were taking their toll.  I’m trying the church thing.  High on Christ, isn’t that what they say.  So far, I’m not feeling it.  What I am feeling are the cold evenings.  I’m not feeling the warmth of H filling my throbbing veins.  I’m not feeling my lungs relax after deeply inhaling a potent smoke.  I’m not feeling the heat of a naked woman, hours after she happened to snort beside me.  But the trembling, the lost memories, the doubting myself. Something had to give. So now, I keep my nicotine close.  I go to church each time the doors open.  I pray for release, and I rub my aching veins.

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