Fear and Worry

When I was pregnant with Joan I spent a decent amount of time worrying about things that I shouldn't have.

You see, based on the information we received from doctors and others in the healthcare field when we got her diagnosis, it made me feel like Joan was an unfortunate tragedy, a freak of nature. Defective. Undesirable.

Even Google results for Trisomy 18 depicted disturbing images of children with deformities. And even more concerning descriptions of all possible physical defects. Organs on the outside of the body was one of the most frightening.

It scared me. It caused me to worry more than I should have.

I worried about what Joan would look like. What kind of disabilities she might have. How others would react to her.

As first time parents, we didn't even know how to care for a healthy newborn. How would we care for one with special needs?

I wish I hadn't worried that much. There was no need to.

Joan was the most beautiful baby I had ever seen.  Maybe I'm slightly biased as her mother, but she was precious.

I'm not sure where Google and the doctors get their information, but they should include a more accurate depiction. Pictures of Trisomy babies that look just like other babies. Adorable.

Tell us that they have the purest smiles and bring such joy to their families. Because they do.

Tell us that there is no way to accurately predict any child's disabilities, or abilities.

Why not believe -- encourage -- that each of us are limitless? There are no bounds to what we can achieve. Many children have far surpassed expectations, or limits, imposed on them. Though some may need adjustments or have challenges in certain areas, they undoubtedly have strengths in other areas.

Tell us that no matter what challenges we may face, there are others who have walked similar paths before us. There are groups that can support us, and other parents that will be an inspiration and give us hope and strength.

I wish I had found this site while I was carrying Joan.  It may have made me less scared.  The unknown is always scarier than the reality.

These are photographs of Trisomy 18 babies.  Let's raise awareness.  Eliminate fear.

The Only Ones?

We're not that unique, are we?

When I was pregnant with Joan, after receiving her Trisomy 18 diagnosis, I continued seeing the same OBGYN practice that I had been going to for years. The perinatologist that made the diagnosis sort of 'released' us back to my regular doctor for routine prenatal care since there was essentially nothing more they could do for us and my pregnancy was not high risk.

So back we went to continue routine prenatal care. Except everything changed. There is nothing 'routine' about carrying a child that is not expected to survive. Maybe medically routine, since physically my pregnancy was unremarkable. But in all other ways, definitely not routine.

My husband and I joked that we were celebrities at my OBGYN practice. (He came to all of my checkups since it became possibly his only chance to 'see' Joan on ultrasound or hear her heartbeat.) It is a large practice that sees, oh I don't know how many patients, but tons. And everyone that worked there, from doctors to nurses to receptionists and office staff, knew us by name and knew our situation. We were surprised one day when one of the doctors told us they were just talking about us at their meeting -- all of the doctors together.

It struck me as odd that we stood out that much. How was it that we were one of the only, or one of very few, couples that chose to continue their pregnancy after receiving a diagnosis like this?

We couldn't be the only ones that felt this way -- that chose life for our child -- out of all the patients they had seen in similar situations.

It made me worry that maybe there were other parents that felt like we did. But they didn't think they could continue on with the pregnancy after a devastating diagnosis. Whether they didn't know it was an option or they didn't have adequate support.  This thought broke my heart. Still does.

I often wonder about those parents who ended their pregnancy after the diagnosis. Were there regrets?

My hope, through the work we do with Joan Reach, is that every parent that faces a diagnosis for their child like we did will know that carrying to term is an option, there is support, and it can be a beautiful, meaningful experience.

Missing

A special guest post by Joan’s Aunt Teri

How can you miss someone that you never really knew?

It’s simple.

As a teacher, I sometimes forget to take attendance at the beginning of class.  However, I eventually, or sometimes immediately, feel a sense that someone is absent.   It could be the class clown, the girl who is always on her iPhone, or the quietest kid in the class. In a panic, I glance at the class roster.  Their absence is palpable. It is in the air, it is on your skin.

Someone is missing.

This feeling often takes over at family gatherings. A sneaking feeling that someone is not there; that a part of the whole is missing.  This sixth sense has greatly intensified after the birth of Vivian, Joan’s little sister.  Every milestone, everything Vivian does, reminds me of what Joan would have done.

With Vivian, there have been so many Firsts: First Smile, First Laugh, First Steps, First Everything.  I wonder about having had these Firsts with Joan.  She was also the First Born, a position which I would have shared with her.  

I am reminded of Missing, a song by Arcadia, a side project of 80’s supergroup Duran Duran. As cliché as it sounds, the lyrics in this song did not mean much to me until after Joan’s birth. [I always try to say her birth, not death; which tragically were one and the same.]

I thought I saw you smile

But now I don't see you anywhere

Whispering your love song in my ear

how can you touch me

when you're not really here?

Yes, Joan.  You touch us always, even though you are not here.

So, how can you miss someone that you never really knew?

It’s simple.

The Diagnosis

By Joan's Mom

The week of Mother's Day for us is also the anniversary of the days that changed our lives.  The 'abnormal' tests and the dreaded results.

On the morning of Monday, May 9th, 2011 I was jolted awake, sweating and crying, by one of the most vivid dreams I have ever had.  In the dream, I was sitting in the perinatologist's office and she said, "I'm sorry.  Your baby girl just died."  That's when I bolted awake.

The Friday before, we had our 20 week ultrasound visit.  The visit that is supposed to be a joyful, wondrous look at your baby and all of the miraculously developing organs.  Sometimes it is even the time when you get to find out if you are having a boy or a girl, but we didn't want to know.  We wanted to be surprised.

Our appointment was none of those things.  It was a dizzying blur of signs that something was not right with our baby.  Measuring too small.  Possible heart defect.  Two-vessel cord.  All 'markers' of a possible chromosome disorder.  The visit ended in an unplanned amnio, that I never intended to have.  And us going home to wait the weekend, my first Mother's Day weekend, for the preliminary results.

I spent the weekend resting as much as possible, as ordered by the doctor, and trying to convince myself that somehow everything would be okay.  That it was just a false alarm.  While my husband started the demolition stage of the spare bedroom renovation, what was to be the nursery.  I'd like to say the physical labor was a distraction for him, but I don't think anything could take our minds off of it.

By Monday morning I had done a pretty good job of convincing myself that the odds were in our favor and the test would come back negative.  Except for that dream.  The strange thing about it is, up until that point I was convinced that I was carrying a boy.  As if that little detail was proof that the dream was not a premonition. 

Just a few hours later, early Monday afternoon, I got the call from the same perinatologist -- the one we saw on Friday, the one from my dream.  I had gone to the mall on my lunch hour to distract myself from the dark cloud that had formed over me.  I had not been able to button my pants for weeks and it was time to finally break down and buy some maternity clothes.  I was leaving a department store, having just bought my first pairs of maternity pants when my cell phone rang.

The test was positive for Trisomy 18.

I listened to the doctor tell me that a genetic counselor would be calling me and calmly asked her how accurate these results were, even though I already knew the answer.  I hung up and left the store, called my husband.  I stopped back at work briefly to pick some things up and let them know that I was going home for the rest of the day.  The shock and numbness started to wear off on the drive home as the tears began to flow.

The rest of that day is a blur.  I remember crying on the couch, looking out the window and not understanding how it was getting dark.  The clock said 8 PM, but it must be broken.  I couldn't fathom how time and life were continuing on when my world had changed so completely.  Time stopped at 1 PM that day.  The earth stopped spinning on its axis.  Nothing would ever be the same again.

I wanted to return the maternity pants I had just bought.  I wanted to hide.  I didn't feel worthy of wearing them.  To walk around with my ever growing belly.  The badge of honor and pride of motherhood.  My baby was not going to survive.  I would outlive my first child.  My first daughter -- it was indeed a girl.  And there was nothing I could do about it.

I still can't walk through that section of the department store where I got the call, without thinking about that day and feeling the familiar pangs of panic start to build.  I wonder if that will ever go away. 

Pain of Discovery

By Joan's Dad

This is the short version. Joan was our first pregnancy and as such everything was a new experience to us. We went to our office visits and progressed (what we believed to be) uneventfully through the first half of the pregnancy. We had ultrasounds and saw our little one swimming around and moving from one spot to another, her little heart pumping the entire time, and her getting bigger with each successive visit.

I found myself in love with our baby from the moment I knew we were pregnant. It was love at first thought, I loved our child before I had even seen the first ultrasound, and every passing visit would bring me loving a baby that had arms instead of arm buds, ears where none were at the last visit, and a little fluttering heart that beat at that baby rhythm in the 140’s (which freaks you out the first time you hear it if you don’t know that’s their normal heart rate). I started to have a wide range of things that I was looking forward to, from watching my wife hold our baby for the first time, our families meeting him or her, bringing our little one home, to minor things like our baby’s laugh or smile. I simply started to build these future memories of all sizes.

We reached the Level II ultrasound commonly performed at 20 weeks. It’s the ultrasound where they scan the baby’s anatomy and verify that everything is accounted for and relatively properly sized. It’s also a common time for you to find out the baby’s gender. Our appointment was perfectly timed for the Friday before Mother’s Day. What a great way for my wife to have her first Mother’s Day! Our ultrasound tech was great. She spent lots of time measuring all sorts of things and poking Joan so she’d move to get a better view and measurements; and she was good not to reveal that Joan was, well, Joan not John.  We watched the entire time and were just amazed with how big our baby had gotten. The tech was relatively quiet, but that’s not unusual, doctor’s talk to patients, everyone else in the doctor’s office talks to the doctor.

When the doctor came in to give us the summation, I was expecting to basically absorb and nod until we could take our copies of our button nosed baby’s ultrasound pictures home to add to the gallery on the refrigerator. But when the doctor came in and started talking, I stopped liking her. She spent about 10 minutes couching facts with fluffy words and expressions. You know the things I am talking about; they are supposed to make you feel less bad, but in reality it’s like someone wrapping you in bubble wrap and then throwing you off a high rise building. They feel a bit better about it, but you’re still free falling and ill-equipped for the hard landing. She said that Joan had nearly every ‘soft marker’ that they used to test for a genetic disorder called Trisomy 18. On the doctor’s recommendation, an amniocentesis was performed to confirm her diagnosis. The sample for the amnio was taken and the results would be ready lightning fast in 4 or 5 days.

YAY!  Happy Mothers Day!! GRR!!

So what do you do in that situation?  How did I feel?  Helpless, angry, but mainly heartbroken.  We went home and we were both just in shock and becoming experts on Trisomy 18 as quickly as Google and a broadband connection would allow.  We were trying to unravel this enough to find the thread of hope that this diagnosis (if confirmed) would be manageable, treatable, curable, anything positive-able.  Google let us down at every turn.  Trisomy 18 meant a 90%+ chance that our child would not make it past her first birthday if she were able to survive to full term.  Words do not describe the feeling when that eventuality insidiously seeps into your logical brain and you can’t escape the fact that most of these dreams that you had for your child are now a source of pain.

This is where and when it all turns. We were in limbo. The worst limbo you could find yourself in. All of those memories that you think are in front of you as a growing family are in jeopardy and most are actually completely out of the question. What’s worse, is I had no idea what in the world I was supposed to hope for as all of the paths to hope for are lined with and end in such pain.  We could only hope that the diagnosis was wrong and that we’d get a reprieve by the additional test. Time passed that weekend as a friend and I demo’d the room that was to be the nursery. My wife’s first Mother’s Day had become a totally different experience then we had expected it to be just 48 hours before.

The Monday after Mother’s Day we got confirmation.  Barbara called me at work. She had just gotten the call that our daughter tested positive for Trisomy 18. So that was it, we now KNEW what we had been dreading since the doctor walked in the room at the ultrasound and started talking words to us that don’t belong in the same sentence. “1 in 6000” are the odds for a jackpot. “Life limiting” is not an adjective for a baby’s anything. The most immediate thing was pain, pain in my soul that my family is now facing a very different and more challenging future and I’m powerless to stop it.  Pain in knowing that my wife would be in even more pain then I was in and would likely stay that way for a very long time, pain in knowing that we could do our best and still be ultimately in the unimaginable situation of burying our little button nosed child.

I don’t have the words, which is why I am using so many.

The closest I can come is to say that emotionally, it’s as if I was swimming in quicksand at that pace you have in your dreams where you can’t outrun whatever is chasing you. I was moving slowly and sinking quickly. I bottomed out and realized that this was the worst thing that could have happened to our family and it came out of the best thing that had happened to my wife and I. That’s not supposed to happen.

Relatively quickly, I started to emotionally triage. The love takes over. The love motivates. The love redefines hope. Hope is no longer seeing your daughter smile or seeing her running through the yard giggling. Hope is now getting another day with your daughter while she’s still literally being hugged by her mother every moment. Hope becomes knowing that you’ll be able to be with her when she passes and make sure she knows nothing but love for the entirety of her life. Hope becomes planning for all sorts of eventualities, from lining up home nurses should she make it home from the hospital, to choosing where she’ll be buried when she’s done being surrounded by our love. It’s not the open-ended hope of an option filled life, but rather the hope of solemn determination to do what you couldn’t have imagined until you’re faced with it.  I found it to be a hope that brought me peace when there was not much comfort in the circumstance.  Our love for our daughter was never tethered to her health, only the amount of time we had with her.

Happy 4th Birthday, Joan.

The Yellow Butterfly

Right around the time that Joan passed away I started noticing yellow butterflies.

A small delicate yellow butterfly among a flock of monarchs.  Or a single yellow butterfly fluttering across the yard.

Each time I felt a keen awareness.  One of those moments where everything else fades away.  And I always thought of Joan.  No, more than that.  I felt her presence.

It wasn't until a while after that I stumbled upon the significance of the yellow butterfly.

While it is common to associate butterflies as a symbol of the soul, the Irish believe a yellow butterfly is an indicator of departed souls resting in peace.

How beautifully fitting. 

Thank you for that sign, Dear Joan.  That beautiful gift.

Though your body was imperfect, your soul was beautifully perfect in every way.

What signs do your loved ones send to you?

Decision, Religion, and Love

A guest post by Joan's Dad

During the time my wife was pregnant with Joan and the time since, there is a question that gets asked and it’s tied to an assumption.  It’s a question that gets asked more for confirmation of the assumption behind it than any other reason.  The question is essentially in long form, “Why are you going (or putting yourself) through this? Is it a religious decision?”

This is such a strange question to me and a telling one at the same time.

I say strange because if you’ve got a loved one that is stricken with a fatal diagnosis, you’d do whatever you could to give them comfort and love and let them know what they mean to you.  When you comforted them it would have very little to do with religion and more to do with love for the person and your desire to show them the love that exists for them.  Love is our greatest asset of value and kindness is one of its manifestation.  We all have different levels of physical riches, but our ability to love greatly and act kindly is completely independent of our bank statement.

I also said it was telling.  I believe it to be telling as it is, essentially, a leading question.  The way it’s typically offered it is treated nearly rhetorically.  The assumption is that “GOD” told me that we had to continue with the pregnancy.  It had to be that somewhere there was a burning bush or a talking tree or some dream with clouds and trumpets where some booming voice told me what I should do.  That had to be it, because I’d have been out of it to CHOOSE the pain that continuing with Joan would surely lead to.  Take a step back and realize that.  For me to love, support and fight for our daughter, the more palatable explanation involves flaming/talking plants?  I’m an engineer.  My primary means for processing the outside world is through observation, logic and repeated results.  While I can assure you that if I do encounter a talking tree it will have my undivided attention until the fall when the leaves are gone and things get awkward as it stands there naked, I can also assure you no trees are talking to me.  To me the whole assumption is comical.  To clear the air, let me say that the decision that we made to continue our journey with our daughter was the easiest I’ve ever made.  It was not an easy decision because of religion, it was easy because it was something done out of a parent’s love.  The result of the decision was challenging, but choosing to fight for as much of our daughter’s life as we could beat out of the odds was like deciding whether or not to pour gasoline over my head and play with matches in a fireworks factory.

Life is all things in a spectrum from pain to joy at one time or another.  The lows don’t make the highs any lower.

Knowing that we wouldn’t have our daughter for as much time as others didn’t take away our love for her and our desire to embrace her life on its terms without concern for our own.  I didn’t choose to have a daughter with a life-limiting diagnosis, I chose to love my daughter no matter what.  That’s what love is.  To me that’s what parenting is supposed to be.