There Isn't Any ME

My guts were falling out.  There couldn't be another explanation.  The lower part of my abdomen felt like it had just given way; given in to gravity.  There wasn't anything I could do.  My womb had just fallen out of existence and the fragile life within was experiencing a turmoil I could not imagine!  So I left work and rushed to the emergency room.  Again.
The first time I rushed to the ER was a nightmare.
It started nine days beforehand.  I had begun bleeding, and I read that the general rule was this:  bleeding more than a week required an ER visit, and I had called Dr. Hill's office to make sure.  I was admitted almost immediately.  I was asked if I was nauseous and the answer was "No."  I was asked to rate my pain on a scale of 1 - 10; I said 3.  FOUR HOURS LATER a nurse came by to check my vitals.  He stripped me to my skivvies and shoved a hospital gown at me.  He came back TWO HOURS LATER and began to open a vein so that he could put in an IV port.  Once the IV port was in he injected a needle and I asked what was in it.
"Morphine," he replied.
"You're joking," I accused.
"No," he smiled.
"Take it out," I demanded.
"No," he said.
"NOW!"  I declared.  
He took it out.
"When asked my pain rate, I said 3.  Why did you give me Morphine?"  I demanded.
"The doctor said to."
"Tell him I said 'No.'"
After a cursory sonogram, I was released, and told that I was still pregnant.

The second time I went for Emergency, I was in so much pain that I couldn't walk upright.  

I left work to see someone about the pain.  Here's the thing about pain:  It's invisible.  It's possible for some people to see that you are suffering.  It isn't possible for people to see where the suffering is happening.  
My pelvic bones had separated.  I could feel them moving independently of each other every time I walked.  The muscles of my abdominal wall had also separated, vertically.  My job requires almost constant motion and I couldn't do it.
I couldn't see a way around it and I couldn't ask for help.  My pride was too strong, and misplaced.
At home, tension was building.  My husband found himself doing more and more housework without any contribution from me.  My daughter felt the increasing irritability coming from me and she began to act out.  Laundry piled up.  The cats were cranky.  The pain in my back, abdomen, and pelvis turned into a Gremlin.
The pressure at work took on a life of its own.  I began to lash out at people who didn't deserve it.
Driving home from work one afternoon, I remembered a look...
Allan had always been a great coworker.  Technically, his position was below mine; but I admired him and thought he was a good example of what a great work ethic is supposed to look like.  That day, we had a strong disagreement about what our managers' schedule should look like for the next month.  I behaved in a way that is inconsistent with my professional (and religious) beliefs.  I was disrespectful to an ideal that was important to him.  The look he gave me was incredulous, and also reproachful and disbelieving.  I deserved it and I was ashamed.

For months, my pregnancy had been all about ME; and the MEness of everything.  The pain, the possibility of a chromosomal abnormality, the sleeplessness...  I had been thinking about it in terms of what it all meant to ME.
It wasn't about me.
It was about us.
All of us.
On the way home from work that day, the look on Allan's face wouldn't leave me alone.  I realized that this experience wasn't just for whatever it meant to me.  It was about everyone who's life I touched.  Other people would see me and the way I dealt with this.
The very next day, it was all solidified for me.  A woman I admire approached me and said, "I didn't realize all this was going on for you.  My daughter had issues as an infant.  It's not the same as what you're going through, but it will change you.  You will be different when this is all over."
Her words stuck with me.  What example is it for other people, if I go through a hard time and don't reflect the teachings of Jesus?  If I struggle, yet still blame; or if I'm in pain, yet remain ungracious to the opportunities around me?
Everything we do; everything we experience...  It isn't about us as individuals.  It's about us as  One Body.  I'm Catholic and I believe in the One Body of the Church.  But what about you?
No matter what you believe in...  Do you believe in One Experience?  The decisions I make for Elijah will effect how he interacts with society, which might effect how your children interact with my son.

Welcome to Holland

   I am often asked to describe the experience of raising a child with a disability -- to try to help people who  have not shared that unique experience to understand it, to imagine how it would feel.  It's like this...
   When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michaelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.
   After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland!"
   "HOLLAND?!"  You say.  "What do you mean Holland??  I signed up for Italy.  I'm supposed to be in Italy.  All my life I've dreamed of Italy."
   But there's been a change in the flight plan.  They've landed  in Holland and there you must stay.
   The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.
   So you must go out and buy new guide books.  And you must meet a whole new group of people you would never have met.
   It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for awhile and you catch your breath, you look around  ....  and you begin to notice that Holland has windmills  ....  and Holland has tulips.  Holland even has Rembrandts.
   But everyone you know is busy coming and going from Italy.  And they're all bragging about what a wonderful time they had there.  And for the rest of your life you will say, "Yes, that's where I was supposed to go.  That's what I had planned."
   And the pain of that will never, ever, ever, ever go away .... because the loss of that dream is a very significant loss.
   But...  if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things  ....  about Holland.

     --Emily Perl Kingsley

Friday the 13th

I pulled my left sock up just a bit.  I rarely wear socks, and I get a bit self-conscious when I do; I like to make sure they are the same height before I leave the house.  The phone rang.  It was Dr. Hill's nurse and I assumed she was calling to confirm my appointment for the following week.
"Hi!"
"Hi, Mrs. Shea. It's Theresa at Dr. Hill's office."
"Yes, ma'am! How are you?"
"Oh, I'm fine. I'm calling because your afp blood test came back positive and I've scheduled an appointment for you with Dr. Williams at TMH with the Maternal-Fetal Medicine on June 26th at 10am and if you have any questions or need to change the appointment time you can call them directly have a nice day."
I didn't omit punctuation there.  That's how she said it.  Between that day and this one I've become familiar with all the different ways people deliver bad news.  The Run-On-Drive-By is when they neutrally state the facts in a clear and concise manner that does not allow room for follow-up questioning.  It's very efficient and not at all rude; it just kind of passes the buck on to another person.
I flipped the phone closed.  I took a swig of water.  I put the phone in my pocket and I tied my shoes.  I walked to the gym to indulge in a 20 minute elliptical episode.  I walked back home and I took a shower.  I brushed the tangles out of my hair and I put on my makeup.  I put on my maternity clothes and I got in my car.  I drove to Havana and I looked at antique baby furniture.  
I did everything in a deliberate way because I wanted the blood in my veins to begin flowing normally again.  I concentrated on the MEness of it all because I knew there may never be ME time again.
We had been so happy, the three of us!  Jono and DeeDee and our daughter: The Sheas.  We had never made plans and we didn't always do things the correct way but we always made it right. We didn't plan on having another child, but we weren't planning on not having another child either, so the pregnancy wasn't unwelcome.  It happened on Friday, April 13th, 2012, right after we saw "The Hunger Games" and ate at Albert Provence while our daughter was in school.   I kind of think I should have known.  Our daughter was conceived the day after Christmas when my husband missed his flight to Oklahoma and she has hit milestones at Christmas ever since.  It would only make sense for our son to have been conceived on a traditionally unlucky day.
I strolled alongside the train tracks in Havana, kicking at the dusty grass and stubbing the toe of my shoe against the dandelions.  Strange:  the actions called to my mind a memory of myself doing something similar when I was a small child, growing up in small town Tennessee.  There was a train depot in Gallatin, where a farmer's market would convene on the weekends.  There was a place inside the depot for children to play, with a little door leading from the red caboose to the scorched summer grass outside.
I wanted my children to have similar memories.  I don't know if children with Down Syndrome process experiences the same way.
I drove home in time to put a beef stew in the crock pot and pick our daughter up from school.  She had a great day that day and Jono did, too.  We had a fun evening at home that night and our daughter went to bed on time with her teeth brushed and no tantrums.  Jono and I read for a little while in companionable silence.  It had been about 9 hours since I got the call yet I hadn't said anything to him yet.  I love him and I trust him and I knew he wouldn't be weird about having a son with Down Syndrome.  It's just...
I don't know.
So I waited until he was done reading and I snuggled next to him.  I told him what Theresa said when she called and then we were both silent.