Dee Spair

So one day Dee and I were sitting around moaning in this dank, dark, stinky well with the saddest songs playing in the background.  It was awful.  We felt hopeless that we would ever escape.  Wait.  Should I back up?  Are you familiar with Dee?  Dee Spair (aka Despair) is what I like to call her that not-so-good friend who comes for unexpected visits.  When she visits, I feel as if I am walking through mud, everything seems hazy and unclear.  After Ellie's hospital stays this summer, I most certainly felt Dee's presence.  (My mom very wisely suggested I not answer the door when she comes a knockin'). 

Previous experience has shown me that after a hospital stay is often the most challenging time.  When Ellie is in the hospital, we have loads of support--friends are stopping by, family is calling, packages are being sent, the check is in the mail.   Plus, we have the entire hospital staff at our disposal, performing and keeping track of all medical interventions.  Finally, each one of our children is being cared for individually (Ben likes buttons way too much to be in a hospital room for very long). 

Then, we are sent home and suddenly our not very fun hospital vacation, along with all that additional support, comes to an abrupt end.  I am taking care of both Ben & Ellie, at a time when Ellie may not be feeling so well.  At the end of our last hospital stay, our medical interventions were much more complicated.  When we first arrived home that meant feedings or medications through her gastric tube every hour to every other hour beginning at 6am, ending at 11pm.  Overwhelmed, exhausted, burned out, plain done is how I was feeling.   

The disappointment I felt following Ellie's surgery, was staggering.  This thought reminded me of the Zen Shorts(by Jon J. Moth) story where things keeping happening in a man's life and he keeps saying, "Maybe it's good, maybe it's bad, who knows??"  For example, when our neurosurgeon came and told Thom that he had removed 50-60% of the tumor, every one said, "HIP Hip Hurrah!!"  What great news.  Then a few weeks later, her sodium was way out of wack (higher than one doctor had ever seen sodium go), she wasn't producing steroids, her hypothalamus was no longer communicating with her Pituitary Gland which meant no thyroid function either. 

For awhile, I was so angry.    Here's where we all say, "Oh that is so bad."  I kept desperately wishing we could do a do-over for our choice of surgery.  Or at the very least call the neurosurgeon and ask if they kept the brain parts that were removed and could we please please have them back, because apparently we NEED those parts!!! 

What surprises me most now is how abruptly Dee's visits can arrive.   A few weeks ago I had a meeting at the school to discuss Ellie's educational needs.  At one point, the nurse, summerized all of the major surgeries and procedures Ellie has had in her 8 years.  Suddenly I was engulfed in sadness, thinking, "Holy cow, I can't believe she's been through all of that!"  It almost felt as if these events happened to someone else's family.  But then, I remembered how after her first surgery she told me in baby signs that she was "scared".  I recalled the nurse who thought Ellie was a table and started putting all of her equipment atop of little 20-month-old Ellie, until Crazy Momma (my alter ego) came out and requested a new nurse.  I recalled the ache in my arms to hold sweet Ellie after her surgery, but not wanting to hurt her.  I recalled when I did finally hold her and how I didn't want to put her down ever.  I recalled most recently how when Ellie was intubated she awoke enough from her sedation to begin to cry.  (Which I didn't recognize at first because with a tube down your throat it sounds not at all like crying.)   Fortunately, Ellie recalls none of these experiences that cause me to feel great sorrow. 

The flip side of all of those despairing hospital stories are all the amazing stories of wonderful doctors and nurses who go above and beyond.  The joy of seeing Ellie finally feeling better. 

Recently, one of our favorite babysitters, who is a special education teacher, let me know that she had been attacked by one of her students at school.   I could tell from her e-mail that she too was at the bottom of the well, wondering how in the world she would ever get out and carry on.  I so clearly remembered feeling that way.  My hope for our babysitter and friend is that her "future self" will call her forward, letting her know, as mine did, that she will survive this and at some point she will once again thrive.  I know that when you are in the well, however, it is hard to hear any words of hope or encouragement.  The well is a frightful place and mostly silent or filled with dreary thoughts.

Because now that I've caught up with that future self,  I can see that Ellie may actually be healthier than she ever has been before.  Ellie is walking every day.  She can walk 2 and half miles, whereas before she could barely walk a block and a half.   We are giving Ellie green food through her g-tube, providing her with a lot more vitamins and minerals than she's had in a long time.  She is sleeping better than she has in many years.  Things are coming out the way we like--she is throwing up hardly ever and pooping regularly.  She is going to school, learning new things, making wonderful friends, and charming everyone there.  If it hadn't been for all of the struggles this last summer these desires for something different would not have been born and might not have lead us to this moment.  

So, I suppose, I should thank Dee for her extended stay.  She allowed me to see what I wanted to change.   Without her, I would not have been so incredibly motivated to make changes.  I want to thank my future self for peeking around the corner and passing me a bit of hope when I felt hopeless.  I am so glad to be outta that well, caught up in this magnificent moment.  That was the gift that came out of Dee's latest visit.