the Reality

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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.

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2 responses to “the Reality

  • Pat Westmoreland

    It brings back memories of me as a grandmother watching my little grandson die for 31 days. He was born and died in 31 days.
    This wasn’t a child that I watched grow. I watched him live his life in pain for 31 days until my daughter said “no more”! Take him off life support! All I remember was it was like holding my breath for 31 days. My heart hurt all the time it seemed. A hurt that was always there. Then there are families like you with children that you have watched grow and you have been holding your breath a lot longer than 31 days. Yet you get up everyday and put one foot in front of the other. Yet I know the pain I felt but can’t imagine the pain of 11 yrs. of not knowing what the future will bring. God has given you this gift of being able to put your pain into words. Yet there is even more pain beyond what words can describe. My prayers are with you.

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