2015

You have been my weirdest year yet.  You have brought my new friends an opportunities, while closing doors and setting tougher boundaries.  I mourned (and still sometimes do) over the loss of working while enjoying and preferring my markedly more quiet moments.

I had two surgeries, four incisions and thirty stitches between both arms, but am wrapping up the year pain free... enough to chaperone field trips and go on last minute, Tuesday-before-Christmas, shopping mall trips with just my five year old.

I spent 1/5th of the year (ten weeks!) not being able to straighten one arm and then the other, but have not lost any function.  We took the kids on their first adventure to the ocean and one of us emptied a bladder at said body of water!

I began 2015 with steroids, antibiotics, and pneumonia and ended it with my first cold in two years that my body could kick without Prednisone.  And through it all you have made my heart grow in a way, and with a fervour, that I could not expect.  Thanks for the memories.

One Decade Ago

To the Daughter I Never Held,

I have not thought about you a lot over the years; I am busy with all things boy mom now.  Maybe it's because ten Novembers ago my body was preparing for, and nourishing, new life, but this year I find myself unexpectedly (re)hit by grief.  It makes this anniversary tougher.  There is a little sting every year around the holidays and, as I finish this post, it is one day after Thanksgiving.

You see, you were not meant to be conceived.  But you were around Thanksgiving, 2005.  I was married, but barely, and did not want to have children for a good five or six years.  I wanted to enjoy early adulthood and travel and spend new pay checks on things we would for sure have to ditch once baby made three.  I was enjoying life and having fun.  But you were there, dividing and multiplying and developing - and there was that ever positive test waiting for my disbelief, four days before Christmas.  I only took it on a whim, not expecting that plus sign; funny how the instructions say to give a pregnancy test two to three minutes to develop, but a positive sign shows up within seconds.

You would think a surprise pregnancy during the holiday season would be celebrated and cherished, yet I never felt so alone.  I did not not want you but I wasn't quite there at the point of wanting you either.  Of course my feelings did not matter to you or my body and the symptoms showed up immediately.  And with no money and a baby coming, Christmas was simple: every person got a book.  My gift was inscribed, "to my wife and unborn child" and I cannot bring myself to read it.  After all, it is yours as much as it is mine.

In the days that followed, I crawled my way towards acceptance and excitement.  I still have an affection for Legally Blonde because I first saw it on cable during this time, and it's silliness helped me through my loneliness.  I first saw little you around seven weeks.  I did not know to fear empty sacs or bestilled hearts.  I expected to see you and there were you with your quick flittering heart.

The doctor assured us that once you have seen your baby's heartbeat on an ultrasound the odds of miscarriage were less than five percent.  You continued growing, I had a birthday, and I started graduate school.  And talked about being pregnant with everyone - it sounded like this pregnancy was going to last!

I had a consult with a high risk doctor who was to opine on being pregnant and being in a wheelchair. I did not expect another chance to see you so soon and hurriedly drank glasses of water in the waiting room. I wanted a nice and full belly so we could get a good look at you.  

I saw you on the screen immediately. You had grown!  You had arms and legs.  Obviously you grew with each new day but I did not expect you to look that much more babylike so soon.  I did not know to look for a heartbeat.  I did not even remotely think you could be gone.  The tech left and came back with this doctor I had never met before.  It was not until after I heard the words, "You have a nine week and [x] days' fetus with no heartbeat and no signs of activity," that I realized you were gone.  The ultrasound ended and we had the misfortune of being ushered into a back hallway full of baby photographs while we waited for the doctor to call my regular doctor.  It was a Friday and she was out so we were told to call back Monday morning.

I do not know how we passed the time, actually I am not sure time passed at all.  Monday morning came and I called the doctor.  I thought the worst part was over.  As it turned out though, the doctor was not sure if I had miscarried.  I had no bleeding and there was not enough of a difference between your age and how far along I should have measured.  Obviously there was still the issue of confirming your heartbeat but the other doctor could have made a mistake.  She could have missed your heartbeat.  You could still be living.  You could just be a few days' behind the predicted age.  So we had to wait more to know for sure that you were gone.  We had another ultrasound scheduled for Thursday.

I lost hope.  Or I should say I did not regain the hope I had lost.  It was easier to continue to be sad and possibly be surprised later than try to be positive and go through the shock once again.  And safer.  And I figured there was no chance (or a very small chance) the doctor was wrong.  I still do not know how I got through that week.  

There you were once again on the ultrasound.  There your arms and legs were once again.  There your heart was once again.  Not beating.  Your pregnancy was over.  Only my body still did not know that.  We were given the option to wait for my body to miscarry, or to have a d&c.  We were warned that even if we tried to let my body do this on its own, I still could need surgery.  I opted for surgery.  I did not want to see anything.  I would never forget you but I was terrified of actually passing (and seeing) you.  I tried to avoid my fears and had surgery that Saturday.  Though nothing prepared me for the pregnancy clots I would pass.  It was obvious my body had been pregnant.  A couple months'
later we found out that the same genetic imbalance that created your ill fate, also meant that you were a girl. 

Even if I never got to hold you, you were real.  You existed because you changed me.  You changed my heart.  You made me a mother as much, if not more, than the babies I had after you.  Before you I was selfish.  Before you I smoked.  I was on several medications that were contraindicated for pregnancy.  I had no plans on stopping those medications.  No plans to even decrease them.  Because of you I had to quit them immediately and entirely, in spite of the psychological effects and the withdrawal.  Before you I was more concerned with my happiness than yours.  After you I was not happy.  I needed to have children.  I could not have you but I could not postpone wanting or waiting for motherhood.  And by the time of my would-have-been due date with you I was pregnant again.  With a boy.  On his first Christmas, two years after I found out about you, we bought our first Christmas tree.  On top of our trees sits an angel.  When I look up at her I like to think of you looking down on us every Christmas.  

By what could-have-been your fourth birthday, we had our second son.  Our house is full of everything Star Wars, Angry Birds, and action figure related. Everything boy.  But lately I feel your shadow - and the shadow of everything lost, everything girl - around us... the frilly bows and cute hats, the dresses, dolls and dollhouses, the tea parties we missed and the Girl Scouts sash we do not have.  I  have to be honest, I want a girl, even if it does not mean I can have you back.  Even if it does not always make sense.  Not only did we lose you, but we lost the chance to have raised a daughter over the past decade. 

CMT Awareness

In honor of CMT Awareness in September:

When most people think of cmt, they think of the country musical station. It's also an acronym for a nerve disease called Charcot Marie Tooth, which was derived from the doctors that first recognized it. 

Even though it is allegedly the most common neuropathy etcetera, let's face it, no one has heard of it (compared to ALS, muscular dystrophy, MS) Having to explain the acronym, the name, and verify that it has nothing to do with teeth, gets kinda old, so let's raise awareness mmmnmmkay?

In other news...

Tooth is a last name?

This.

THIS. Just, this. Taken from Facebook. Where else. 

Listen and ye shall hear the story of a frightened little ten year old girl. Who may or may not actually be me. I/This girl fell a lot as a kid and was always spraining her toes. Not the whole foot just the toes. In fact this girl, even as an adult, will not let anyone touch her toes without squirming like a puppy. The summer before fourth grade this girl broke a toe.  And, during the school year, tripped over (under?) a kitchen table and again injured her foot. Or toe. This girl was then escorted around the school by holding onto the teacher's hand. Which was supposed to be temporary but was not. Months later her adaptive PE person asked about this. It had been months since the incident with the kitchen table and any real or imaginary injury would have healed by then. And because of this, and because of the fact that she really did not like being at the front of the line (too far from the other girls to be social yet close enough that she was afraid everyone would step on her ), she brought this up to her teacher. The new plan was to be escorted by this girl who was a total tomboy. The arrangement lasted less than a week because she could not keep up with her stronger peer. Another meeting was set up with the teacher, the school counselor, the girl and the mom. Her mom and counselor had left the room: it was just scaredy cat girl and the teacher. 

The next part is a little hard to write because I am well aware that this girl's words and perceptions are a little hard to capture on a keyboard. So this girl (again, who may or may not be me) took a leap of faith and asked her teacher about walking on her own... 

Feel free to imagine that , at this point, the teacher rose like a monster and rain clouds formed around her.  And her response was (it is suggested that this part be read in slow motion, though not required):

But what if you fall. 

Done. The girl was done walking at school for that reason, that fear. And she did not know at that time that inactivity was like a ticking time bomb in her body: if she stopped doing something for long enough, her body would lose those abilities and not regain them. 

So yeah this reminds me, in a good way, of this girl's story. But more of a mirror image of her story. 

PS

Do not worry because I am told the story ends with a fairy tale ending :)

Me

Per the preschooler.

Actually not me. Just the chair.

7 and 8

One month and one day till I get my seventh and eighth surgical incisions on my upper extremities. 1 and 2 were in 03. 3 and 4 were in 09. 5 and 6 were 7.5 weeks ago.  Surgery is some sort of tailspin. See the graph I made?  Rather than a straight line recovery is all over the place.  Good days. Bad days. Good moods. Awful moods. I find the newness of healing to to be fading and the relief subsiding into annoyance and frustration.  

Pure science, no?  I find myself feeling less grateful because these incisions hurt.  And the muscles are weaker.  Makes me feel spoiled - like I have grown used to the initial progress I made and am no longer grateful.  That, coupled with feeling of "O.M.G. I am doing THIS to my right arm? Am I out of my mind..."  Not that a repeat procedure makes me crazy, just overwhelmed.  

The thing is I do not know if my progress on my left arm has reached a plateau.  Either momentarily or for good.  Or at least till I can resume weight lifting - which I have a self imposed moratorum on till my right arm is post op'ed and ready.  Lest I risk having lopsided arms.  But when can I determine that it is "time" to start becoming more active, more independent and stop cutting down activities because of pain...Because, funny thing is, after dealing with pain for so long you kind of want to rebel.  Or, I do anyway.  And go back to being as active as I can rather than continue the hiatus.

See.  Total tailspin.