Dee.

As the new year is quickly approaching, I am asking "How has another year gone by?"  Wow.  Another year.  So many things have been amazing for the girl this year.  She is doing things never imagined possible.  But I'll tell you, the past year and a half has been the hardest for me than any so far.  It's hard to imagine even saying it, especially admitting it, but this past couple of years have just about done me in.  For Ivey, they have been her best.

Once we had this amazing nurse.  Her name was Dee.  She was here in a time that I needed her more sometimes than even Ivey.  She used her experience to care not only for Ivey, but for our entire family.  The boys were tiny, as was Ivey, and like all nurses she took the night shift so that Matt and I could sleep.  I miss sleep.  I miss Dee even more.

Any who, one morning the boys (most likely around the ages of 3 and 4) had gotten up and Dee, like many other days, turned cartoons on for them and made them breakfast.  Two things that were definitely NOT in her nursing contract.  I woke up  in a panic because I knew I had slept past time for her to leave, yet no one had gotten me up.  When I got to the kitchen, Ivey's pump was already running her morning feeding, meds done,  the boys eating cereal, talking to Dee and watching cartoons.  I remember apologizing profusely for sleeping through the alarm.  I remember thanking her multiple times for taking care of the boys too.

Her reply - "You're gonna burnout at the rate you are going.  I've seen it too many times.  Let me help."

Letting her help was not easy.  Help never has been easy.

Years later I can still see Dee in my kitchen, loving my boys, and saying those words.  I miss her.

Years later there is no nurse here.  We are exhausted.  Mentally.  Physically.  And in many ways, emotionally.  Ivey is doing amazingly, both in her personal life and in school.  But the hard work to get her there has a price.  We are so exhausted.  Our girl sleeps in our room.  She is deafblind - so that means her sleep patterns are chaotic.  Feedings. Meds.  Seizures. Pain in a nonverbal child.  Medical trivia that never reveals its source.  My mind is tired.  I miss Dee. I miss our conversations late at night.  I miss the comfort of closing my eyes to sleep while she watched over my girl.   I miss her knowledge.   I miss her being within our walls to help navigate the minute to minute with Ivey.  I miss her talking me through my fears.   I miss her telling me "It's okay" even when we both knew it was not. I miss her laugh and smile in our greatest accomplishments.  Most of all, I miss her friendship.  Lately, I have needed her.  She saw from inside the glasshouse - and I need her guidance now more than ever.

Ten years with our girl and you would think things get easier mentally, emotionally and physically.  You might think we are used to certain things and that a threshold of tolerance has developed.  In some circumstances a threshold has been built.  In others, like seizures and pain determination, each time is as raw as the first - only experience provides a blanket of resilience that allows us to systematically move through the problem. I miss the person who saw the exhaustion build.  I miss the person who gave me strength to momma two very typical and wonderfully made boys.  I miss the woman who gave me wings to fly with my very special girl.  I miss the one with grit to stand beside me in the fog of the night loving my girl.  I miss the peace she gave me to truly rest.  I miss Dee.