The gravity of our reality

I (Chip) still remember the phone call.  It was a Friday afternoon, April 23^rd, 2010, when the doctor called and told me Kaitlyn had a disease with a name I had never heard. I remember hearing “Niemann Pick Type A” and saying ok so what do we need to do for her. The answer was as soft and to the point as possible “it is incurable and unfortunately fatal, so just love her.” Just like that a weight unlike any other set in.

Nothing like a mother's love for comfort

When caring for a terminally ill child the gravity of the reality that they are destined to pass before you is there, but at some point you learn to function and put it out of your mind. Sometimes it’s for hours and sometimes for days. It’s not that you forget, I think it’s just how you cope. An attempt to resume normal, even if it’s only for a while, but just like gravity, you can’t escape the fact that it’s there.

Resting peacefully this morning

I have always explained our journey like a descending staircase rather than a downward sloping arrow.  Each step along the way preceded by a reminder of our reality. First it was Kaitlyn losing the ability to drink and needing thickened liquids. We adjusted and thickening became our normal. Then loss of drinking all together with surgery for a g-tube and nissen.  We adjusted and tube feeding was our new normal. Then gradual loss of muscle control. Adaptive equipment and floor mats were our new normal.  Then apneic episodes and turning blue. Oxygen and seizure meds became our new normal. Then gurgling in her throat and bubbling sounds in her lungs. We were pretty sure that was it, but she fought- so suctioning, adjusting liquid intake, and pain meds became our new normal.  Now jaundice and liver failure.  I’m not sure we will have a chance to adjust to a new normal as this one seems to come with a finite result.

Getting her morning bath

This morning while giving Kailtyn a bath, I looked at the half full bottle of baby wash and thought “I wonder if this will be the last bottle” then while drying her “I wonder if this will be the last bath” and every night the past few days “what if tonight is the night.” We’ve been through feeling like it’s the end now four times along our journey and every time, thoughts you don’t want pop in your head and everything just feels heavy. I think it’s just little ways your brain begins to grapple with the inevitable reality.

Cole offering his drink to help her feel better

Kailtyn is still holding on and we are loving her, spending time with her, trying to keep her as comfortable as possible and trying to do what our normal is, but her orange skin and yellow eyes are a constant reminder of our reality. Please pray that Kaitlyn be pain free and that when the time comes it is peaceful and quick.  That she feel God wrap her in his loving arms, spread her wings, and be free of this gravity.

Pretty in pink

Her new girly bow