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Ups and Downs

Posted Aug 12 2010 12:00am

We’ve been through a few ecstatic weeks that I had hoped would not end.   As the parent of a child with special needs, specifically sensory processing disorder that requires us to feed her through a gastrostomy tube, I always hope that any progress we make will be permanent!  Like playing a video game, running, annual salary, I want (expect?) each score to be better than the last.

Real life doesn’t operate that way, at least not that I’ve discovered! That seems to be especially true with my daughter, Little Miss, who has been fed by g-tube for 10 years now and has battled different health issues throughout her life thus far.

Three years ago we had a major health crisis to weather and after 18 months, the cause was finally determined, surgically repaired and cured.  Now that three years have gone by, I try, TRY, to not wait for the other shoe to drop.  Her health has been quite stable and for that I am SO grateful.  I hope it continues this way!  But I know better than to count on it. I try to just live in today and enjoy what today is, rather than hoping or fearing what tomorrow will bring.

In recent weeks Little Miss has been, HAD been, eating more and more by mouth.  I was generally skipping a g-tube feeding each day.  What fun!  I didn’t get so crazy as to think there was an end in sight, but I was hoping the progress would continue.

Alas, perhaps all growth is cyclical. Picture a tire with a bright red mark on one spot.  As the tire moves forward the red mark goes up, over, down, around, over and over.  So while there is always movement, sometimes the red mark is up and sometimes it is down.  Sometimes the mark is DOWN while the tire moves forward and sometimes it is UP while the tire moves forward. Ups and Downs.

Seems like an awkward picture of growth – or change – or time. In my experience it really goes that way.  Sometimes when I think things are at their worst we get over a bump in the road and it is clear we were moving forward all along.

Little Miss used to have seizures. The seizures were horrible to witness, but they came to an end and she slept afterward. A really strange effect of the seizures was that something in her brain would work BETTER after each seizure. Ups and Downs.

This is true with reading as well.  She can startle me at times, picking out words that I would never have guessed she could read.  But. She cannot read an entire sentence and she cannot write legibly. Ups and Downs.

Little Miss still asks for food, still says she is hungry, but she is much less likely, this week, to eat enough to skip a feeding. Sometimes she can only look at the food and not eat a bite. Maybe we’re just at the bottom of the cycle and we’ll be back on the uphill side soon. Or not.  I don’t know.

I do know that the tire hasn’t gone off the road and into the ditch: she is healthy, curious, growing, funny and sweet. I am determined to enjoy this journey with her, for however long it lasts, and not count on the highs staying high or fearing that the lows will stay low.

Easier said than done. I couldn’t do it alone. Fortunately I have my Companion with me every day to help me on this journey.  He has changed me so much through this and surprisingly, I have discovered that this journey is much more of a blessing than a “curse”.  I would never have guessed I could ever say that.  Today I can.  With His help, tomorrow I will be able to as well.

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