Tag Archives: global developmental disorder

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.


Deep Breaths of Laughter

This next week is the moment of truth. In theory, this next week will bring us the test results for NPC. It means I will have to register my Skype account.

It all seems so far away. As much as I didn’t want to leave the Mayo Clinic, it now seems distant. It seems like a hazy dream from another life. A few weeks ago, John was giving Savannah a piggyback. They rounded the banister at the bottom of the stairs. For a moment, a brief moment, they paused. Savannah looked at me. Her smile was massive and her laughter vivacious. The words flittered through my mind before I could stop them. “This is not the smile of a dying child. It is not the laugh of one. It can’t be.” By the time the words had left me, John and Savannah had vanished up the stairs.

Two test results have come in that open wider the possibility that we are not looking at NCP. If the NCP test comes back negative, then Mayo-grown DNA will be sent to Baylor for advanced mitochondrial testing. The various types of mitochondrial diseases are expansive.

While test results were flooding in negative, we were settling back into normalcy: church, speech camp, sprinklers. We’ve played and fought and tickled. Normal family life. The difference is in the hugs. I hug her more. I hug her tighter. I inhale deeper. I want to breathe her in. I want to keep her inside me: her breath, her scent, her skin, her laughter.

It took two weeks for me to find the nerve to download Skype to my phone. Now that time has run out, I will have to create an account and wait for Dr. R’s message to set up a time to virtually meet and receive what news she brings.

a Summer Specialty

A few years ago the local college had a wonderful program, Kid Swim. Graduate students from the speech-language program, and sometimes from the physical therapy program, would volunteer their time and help special needs kids swim at the university pool for one hour each week. Of course, I use the term “swim” loosely. Some kids splashed, some floated, some swam but most played. All enjoyed. Graduate students helped kids with socialization, movement, word-prompting, but none of the kids realized it was work. They were too busy having fun.

Unfortunately, graduate students graduate, and after a few years the volunteers were too low for the program to continue. Today, however, there was Kid Swim. A summer speciality.

Savannah was hesitant to get in. The water was predictably too cold, and the ladder too confusing. After a few attempts to figure out the ladder, we gave up and sat on the side of the pool. She kicked her feet and splashed and squealed. Little by little, she lowered herself in, tugging me in after her. She jumped and splashed and yelled and laughed and splashed and jumped. I tried to help her float on her back, but she wrapped her arms around my neck and giggled. I tried to get her to lean against me and kick her feet, but the kicks were sloppy and weak, not strong and concentrated like years before.

Over and over, with her arms around my neck, she would jump at me giggling. I thought she wanted to pull me under. After all, she had pulled me in. Eventually, she succeeded, and I realized I was wrong. She wanted me to hold her. I haven’t been able to carry Savannah in over two years, when her medication increased her weight more than my strength. It is an impossible concept to explain to 115 pound, eleven year old little girl, who considers herself to still be a small girl. But today, in the pool, she wrapped her arms and legs around me, and I carried my little giggling girl with bright blue eyes around the pool.

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.


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