Sunday, October 15, 2017

The Other Side of Spina Bifida

A sincere thank you to those who shared their stories and those who left kind comments last week.  No one should walk this road alone.


Rich, Anna and I made the trek into Boston last week for Anna's bi-annual urology appointment.  This consists of an ultrasound of her kidneys and bladder to ensure proper growth and a general check.  We always say and act as if these appointments aren't a big deal, but if they weren't a big deal, she wouldn't have one every six months.

After the infection Anna experienced this summer, I was slightly nervous something negative would show on the ultrasound, or her urologist would question why we hadn't had her urine tested sooner.  Fortunately, the ultrasound results were good and her urologist reported that they were able to see the correction of the kidney reflux still in place.

Anna's urologist always compliments (I guess that's the right word, I can't think of another to describe it) us on our care of Anna and her needs.  She has had very few infections and because she's remained healthy, the kidney reflux correction has continued to work as it should.  When we left the appointment, Rich commented to me on how we don't do anything special.  And he's right.  We do the best we can in caring for her, but we're certainly not perfect.


Anna's been taking a daily preventative dose of antibiotics for many years now.  Rich and I weren't exactly fans of this but because she had kidney reflux and is prone to infections via cathing, we didn't fight it.  Now that the reflux is gone, we asked if she could stop taking these antibiotics.  Her urologist agreed to give it a try.

The ultrasound appointment was scheduled for 1:15 with the urologist follow up at 3:15.  The girls had ballet that afternoon beginning at 4:15.  The past few appointments, I've gone directly to the urologist's office after the ultrasound and they've chatted with us well before the scheduled appointment time.  I thought for sure we would be able to get Anna back in time for most of her ballet class.  We even brought her dance bag and dance clothes with us so she could change in the car.  Yeah, didn't happen.  We've heard that Anna's urologist is reducing his patient load in anticipation of retirement but there were several patients ahead of us.  We left the building at 3:11 and traffic was horrendous, as usual, so Anna was only able to make the last 15 minutes of class, which is when they learn and practice their dance for the recital.  Now that she's on a competition team, she has to have good attendance in all of her classes.  The studio knows why she was late and (I hope) appreciate the effort we made to get her there.

Let's talk about that competition team for a minute.  When I received the email inviting all three of the girls to this new competition team, my heart almost burst.  I was so happy and proud of all my girls. Being invited to a team is a big deal and not something that's handed out just because your sister is invited.  I was told this specifically.  Anna, you earned that invitation all on your own!


(The photos I've included in this post are older, from my Spina Bifida project.)

Thursday, October 12, 2017

An empty bassinet

I took such time and care in selecting items to furnish the baby's nursery.  We had opted to wait until birth to hear the surprise of "It's a girl!" or "It's a boy!"  As such, the nursery was painted in neutral, pale shades of green and yellow, knowing I could later incorporate pink, purple or blue.  I hemmed and hawed over a bassinet, a safe space for the baby to sleep at night near us.  I was perusing through all things baby on the Pottery Barn website one day when I stumbled upon the most perfect bassinet. It was constructed of white wicker and the pale green bedding matched the nursery.  I knew it was a bit of an extravagance. Hundreds of dollars on a piece of furniture a baby could use for only a few short months.  Rich balked at first, wanted to discuss other alternatives, but I had my heart set on that beautiful bassinet.  I still remember loading it into the car at the Natick Mall, my shirt stretched tight against my swollen midsection.

A few months later, that bassinet would sit so very silent and empty

As I was cleaning out and organizing the upstairs linen closet this weekend, I found the once crisp white and soft green skirt belonging to the bassinet, which currently resides in the finished portion of our basement. As newborns, the girls napped in the bassinet.  But it wasn't the same.  It felt like a frivolous item borrowed from another family, belonging to another baby.

I attach meaning and memories to objects.  I don't know if I should apologize for this.  It sometimes makes me look like a hoarder.  All these years later and I cannot part with that bassinet.  One of the girls asked me why we still have it.  It represents innocence and dreams and the person I used to be.  

Two stillbirth related posts in a row is unintentional.  Late last night, I found myself reading studies attempting to explain unexplained stillbirths.  Over the past eleven years, I've come to the conclusion that many unexplained stillbirths can be explained.  These pregnancies simply went longer than they should have, but no one wants to admit to this.  Think of the legal ramifications.

No one has ever been able to explain why my amniotic fluid was basically nonexistent when I arrived at the hospital.  The doctor, who saw me when I was admitted, insisted, in a condescending manner, that it must have broken and I didn't realize it.  It was later confirmed that it had not broken, that the fluid had been too low to protect an umbilical cord from crushing.  This is despite the fact that I'd had an ultrasound a few weeks prior to determine the baby's approximate weight.

No one has ever been able to explain why my placenta wasn't in the condition one would expect from a typical pregnancy.  I was told that it had measured small but the size of the placenta from the autopsy report wouldn't have been able to produce a seven pound, ten ounce baby.  A discrepancy no one wants to touch.

Some will argue that there must have been an underlying issue.  It used to seriously piss me off when people asked/assumed that there was something "wrong" with Abigail.  I delivered at one of the top rated hospitals in the country.  They ran every test possible on me and her after her death and no scientific explanation is available.  Some of the more recent studies I've read are starting to point to due dates and how long is too long.  It's a step in the right direction.        

As always, I share this not to scare but to inform.

Happier posts coming soon.      

Tuesday, October 10, 2017


This is about stillbirth and grief.

My grief.

When you experience a terrible loss, and please note that I dislike using the word loss as it implies the opposite, found, is a possibility, it's only natural to grieve.  And those around you may grieve as well, but their grief is different from yours and we all grieve in a different manner.  Family and friends will want you to feel better because then they themselves will feel better so they may push thoughts and actions onto you.

It's okay to feel however you want to feel.

It has been eleven years, four months and seven days since Abigail's death and I came to an epiphany of sorts just last week.  After Abigail passed away, Rich and I met with two different counselors.  A positive experience came from a session with a social worker at a local hospital.  She very much focused on how no one was to blame for Abigail's stillbirth.  Unfortunately, our meeting with a private counselor was very different.  Now, I admit that I wasn't keen on going to meet with this woman in the first place.  I feel like I tried to keep an open mind but her focus was on God and I was not in a place to talk about God.  If I wanted to discuss God and his actions and at the time, my beliefs, I would have gone to a priest.  My memory may be foggy as this was more than ten years ago but I distinctly remember her trying to make a connection between God allowing children in Africa to die and God allowing Abigail to die.  I felt like she was attempting to use this connection to force me to admit that yes, God allows people to die and we should move on.  I stalked out of that building full of anger.

Last week, I was finally able to voice what I wish I could have said all those years ago.  Abigail belonged to me.  Her death belongs to me.  This is mine.  This grief and anger and upset is mine and I don't want anyone telling me what I should do with it.

(Obviously, Abigail's death impacted others (Rich!) and not just me.  I'm referring to those outside of that direct impact.)

People are so quick to offer advice and opinions and help, but there were times I wanted to be alone in my grief.  I wanted to work through my anger by myself.  This shouldn't be wrong, just as seeing a therapist or a counselor or a social worker isn't wrong.  Death, grief, guilt - it's all so very personal.  Do what you feel is right, not what others want you do.

October is Pregnancy and Infant Loss Awareness Month.  My experience is with "unexplained" stillbirth and so that is what I speak of.  If you're pregnant, you should fully understand kick counts and their importance.  I used to believe that a baby would come when she was ready.  No one ever sat me down and discussed stillbirth or what signs to look for, especially in an overdue pregnancy.  Some may say that the risk of stillbirth is low in babies who go past 40 weeks, but that risk doesn't seem so low to me.  

Monday, October 9, 2017

A non-fall long weekend

We are having the water shut off at the cottage this week, which seems even ridiculous to say considering we had to turn the central air on today.  It's been at 100% humidity here and tomorrow is supposed to be in the low 80s.  We spent some of the weekend at the cottage preparing for the offseason.  Such preparations included scrubbing down the bathroom one last time while we had water.  After everything we went through in the spring just to get water, I'm not so sure I'm a fan of seasonal living.  Not much I can do about that now.  Perhaps I just need to get used to it.















When the camera's resting on your legs as you lounge in a camp chair and you randomly take a photo.



When it's a long wait.

Clam chowdah, always.

Rainy day on the new couch.  

Sunday, October 8, 2017

To run faster, you need to run fast

I've talked before about how pace seems to be a thing now.  How some look down on "slow" runners.  I tell myself that I've gotten over it but maybe I haven't.  Rich and I both bought new running sneakers a few weeks ago.  The store didn't have my size in stock so I had to return a few days later to pick them up.  There were different people working that night and the one helping me told me about their running club that meets once a week.  My first thought was oh, she thinks I'm a real runner.  Wrong, yes, I know.  Maybe I'm not over the whole slow runner thing.  But really, running is very much a solo activity for me.  I have zero interest in running with strangers.  The life of an introvert.   

I go back and forth on whether or not I care about how fast I run.  Here's the thing - always running at the same pace is easy.  And it becomes easier with time.  Speed work is challenging and can be downright hard.  I like to run at the same pace all the time.  It's difficult for me to transition to a slower pace or to run faster.  Maybe this is why I've avoided speed work.  Or maybe it's just because it's hard.

You can gradually increase your pace slowly without grueling speed work.  If you're always running the same pace and you consistently run, running at that pace will become easier over time and you'll eventually speed up.  This is mostly how I've increased my pace (by a tiny bit) in the past.

I'm in a place now where I want to run faster.  For myself.  A few weeks ago, I ran my fast mile test.  I know I've told you guys about this before.  I see how fast I can run a mile without stopping or keeling over at the end of the mile.  My time was 8:30.  Not bad, but now to run that same pace for another 2.1 miles.

After my fast mile test, I decided to add some new-to-me speed work into my running.  I'm very much a "pacer" in that I run the same pace throughout my run without much speeding up or slowing down.  I very rarely stop and walk because I feel like it throws off my pace.  For speed work, I've been running at about an 8 minute mile pace and then walking to recover.  I did need to tell myself to get over the walking part and really, it hasn't interfered.  I'm sort of stuck running the same routes so it's been nice to change up my running with something different.  

I keep reminding myself that with each passing week, it will get easier.

* If you're new to running, I highly recommend going to a running or sports store and getting fit for running shoes.