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.

What color are you painting the nursery?

How did you respond to questions about your baby, while you were pregnant?

I have been asked this question when talking about carrying Joan to term knowing that she had a life-limiting condition.  My answer was, "I avoided it as much as possible."  

Inevitably well-meaning acquaintances and strangers – in the grocery store, public restrooms, etc. – see you pregnant and ask questions.

When are you due?
Is it a boy or a girl?
What color are you painting the nursery? 

And my personal favorite...

Are you excited?

For a mom carrying to term with a life-limiting diagnosis for her unborn child these questions are often difficult, to say the least. For me, this was one of the most difficult parts. Repeatedly explaining that our baby would be born with profound challenges and slim odds of survival was like reliving the devastating news each time. While we were still processing the tragic reality ourselves.

So I tried to avoid these exchanges as much as possible, or answer as briefly and vaguely as possible and escape quickly.

How do you tell well-meaning people that your baby is not expected to survive? That you are not setting up a nursery. That excitement is not the predominant emotion that you are feeling. Instead you are experiencing tremendous grief, anxiety, and a myriad of mixed emotions. While trying to embrace the precious short time with your baby.

So if the person was a stranger or someone I was not likely to see again I didn't tell them. I pretended that I was having a "normal" pregnancy. I even lied sometimes. I didn't tell them that my baby would likely not come home with us. I found that if I did I would usually get one of two reactions.

A look of horror. Pity. Awkward discomfort. To which I would become the comforter, trying to make the situation less unpleasant. This reaction was usually followed by unhelpful, insensitive comments.  The worst of which being some form of, Why didn't you terminate?

Or I would get responses attempting optimism such as, Maybe the doctors and tests are wrong. Can't they do surgery and save the baby? Hope and pray for a miracle. Somehow it'll turn out okay.

An important part the carrying to term experience is accepting that your child may not survive to birth or ever leave the hospital. And embracing a different kind of hope. Hope to meet and hold your baby. To create memories during the pregnancy and any possible time after. So these latter comments are not helpful.

Wouldn't it be wonderful if parents like us could openly share their experience with others, even strangers, without fear of insensitive reactions? That people would respond with compassion, understanding and awareness that sometimes babies don't survive. Because parents need and deserve compassionate support.

If you carried to term with a life-limiting diagnosis, what was your experience when answering questions about your baby during the pregnancy?

Dinner With…

A guest post by Joan's Dad

Grief is certainly a universal thing that we all experience, but we all do it so, so differently. The September after I graduated high school a friend of mine, John, was killed in a car accident. He was just starting his senior year of high school and was driving with a friend of his, Kurt, who was also killed. I was at the joint viewing and it was an incredibly difficult thing to see as both families were there with such a look of shock. About 6 months after the viewing, I was told that John’s father had built a tall privacy fence around his yard, and that he had John’s truck put in the yard.

I worked in the only convenience store in town at that time and still knew a lot of people that lived near and had known John. The thing that I remember most is having the same conversation about John’s father and the truck over and over. People would comment on how odd or awkward it was. My comment was always the same. I would say that I have no idea how you get through that grief, but if having that truck in the yard gave his father any peace at all with what had happened to his only son, shouldn’t he be allowed to have that. I remember having this same dialogue so frequently and it just struck me how odd it was that people would judge anyone’s handling of grief or the desire to have something that gave them a smell, or sight, anything of their loved one.

For all of us who experience grief, we have to find different personal outlets that help us process it. Since we lost Joan, we've found a few things that give us peace, that might not for others. Having said that, I believe that it is a universal thing that you want to hear your child's (or any loved one's) name, as it is their only remaining "voice". With that in mind, we had family over for a party recently and when we called in a food order, we put it under the name "Joan". It was our way of including her in our party and had the added bonus of letting us hear her name from others in a completely innocent way. So I invite everyone to try it as well, next time you get take out or are asked by the hostess for a name, tell them John, or Kurt, or Nathaniel, or Michael, or Nora, or Noni, or Sheila. Or Joan.

a father's day

A special guest post by Joan's Dad.

How many kids do you have?  That should be an easy enough question.  It’s a question that really seems like a throw away, like, “How was the drive (or flight)?” Or “How was the food?”  It’s a softball.  The kind of question that’s more to fill time and either keep a conversation going or start it.  It’s a warm-up swing question.  There should be nothing wrong with it.  Except.  Except when the real answer is a bit more painful than recounting the number of children you’ve gotten out of diapers.  In that case it can detonate the conversation like someone out for a stroll stepping on a mine in a dormant battlefield.  It’s just so unexpected.

How do I answer?  My most common answer is to use some permutation that we lost our first daughter and her little sister is at home driving her mommy crazy.  Why do I answer that way when I know that it can make people uncomfortable or clam up?  I answer that way for a few reasons.  First, it’s the truth, and nothing in the truth is linked to comfort of anyone, A is A.  Whether it gives you chills or a warm and fuzzy.  Joan is my daughter and she’s gone, but my love for her is not.  Secondly, I’m a parent.  Parents talk about their children.  I want to talk about mine.  Not at length, but for a second in conversation, I’ll mention the children that I love just like any other parent would.  Third, there is nothing in me that has any desire to disconnect with my daughter or her memory.  Ever.

Father’s day is an odd one.  I appreciate the sentiment of it, but I always view it through the prism of my life and that means that Father’s Day is about my dad, not me.  Father’s day is also when you get asked about your children the most by people who are generally well-meaning.  They understand that as a father you want to talk up your children, and they are giving you a chance to do so.  Queue my answers and the ensuing gallery of stranger’s faces from lack of recognition to genuine sadness and all stops in between.

The Father’s day while we were waiting for Joan was specifically difficult.  We knew about the diagnosis, we knew statistically what we were facing and most outside of our inner circle only knew that we were pregnant.  There were a lot of things that I couldn’t say but wanted to.  It was a challenge, and I just laid low and let it pass.  Since that first father’s day, I’ve felt largely the same.  I know that there are traditions with ties or ceramic ash-trays that I am sure we’ll go through with Vivian, but we’re just not at that stage.

As Father’s day is a pseudo holiday there is some level of giftery. Hmm. I think that I just made that up.  I’m fine with having made up that word, and I can’t believe it hasn’t been made up previously.  Giftery brings us to another classic question, “What do you want?”  This has become the easiest question I can ever answer.  

I’m a bereaved parent.  Like every other bereaved I’ll want the same thing every time I am asked that question until my last breath & I’ll want it fully knowing that I can’t and won’t ever get it.  

I’m not unique, I just miss my daughter.  It’s that simple and that complex.

My little girl was a fighter

Trisomy Awareness

On more than one occasion I have received comments like these from various doctors, both while pregnant with my daughter, Joan, and since losing her to Trisomy 18:


Those babies don't survive.

Your baby will never be normal.

Your baby will never be able to communicate with you.

Your baby won't be able to eat normally.

Your baby will never smile at you.


I distinctly remember a conversation I had with a doctor not long after we lost Joan.  When I told him that I had a daughter that passed away from Trisomy 18 at full term, he asked if I knew about the politician, Rick Santorum, who had a then 4 year old daughter with Trisomy 18.  For a second I was hopeful, thinking he was not going to be like other doctors.

Until he continued with, "She doesn't have full Trisomy 18.  It must be a less severe partial trisomy.  Babies with full Trisomy 18 don't survive.  You know your baby would not have been like a normal baby."

To this doctor, and many others... Bella Santorum is now 6 years old, living with full Trisomy 18.  Bringing joy to her family and many others.

While survival statistics are bleak for children with disorders like Trisomy 13 and 18, some do survive and thrive.  Their physical and intellectual disabilities should not determine the value of their life.

Let's raise awareness together.

META-MOURN-PHOSIS

I wrote this the first Christmas after we lost Joan – just 2 short months after our firstborn baby died and was born.  I remember the agony of receiving daily Christmas cards with the adorable smiling faces of the children of everyone we knew, while there would be no first Christmas card with a photo of our new baby girl.

For any newly bereaved parent navigating this first Christmas after the loss of your precious baby, you are not alone.  I hope this is a reminder to treasure the small joys in life and hold on to hope…

I fear that this traumatic life event – the devastating loss of our beloved daughter Joan – has turned my husband into Martha Stewart.  He has been perusing recipe books, commandeering my Better Homes and Gardens magazines, baking up a storm... and now, the ultimate proof... He announced that he is going to try decoupage. Decoupage. Seriously.  I don’t even bake very often, let alone decoupage.  If you know my husband, you know that he is far from the domestic or crafty type, which makes this all the more unexpected.

In all seriousness, this post is intended to bring humor in a difficult situation.  And also to encourage those of you going through a similar grief experience, to find the things that bring you joy and embrace them.  Whether it’s discovering your inner homemaker or training for a marathon.  Start a new hobby if you feel a calling, or rekindle an interest that you haven’t found the time for in a while.  Just make sure it is not a potentially dangerous or destructive pastime.  Be kind and gentle with yourself.

While my husband is morphing from a man’s man to into a domestic goddess, I have found small joys and healing in other things.  Here are a few:

• Reading whatever interests me at the moment (at first it was infant loss websites and self-help books about grief, then light romance novels with happy endings only, we’ll see what’s next…)
• Journaling
• Eating out at a favorite restaurant
• Savoring a chai tea latte or jasmine green tea
• A quiet walk near the beach with the afternoon sunlight glistening off the water
• Creating photo books with pictures of Joan and inspiring quotes
• Finding creative ways to donate to charities that are meaningful to us

And though our house has been in a nearly constant state of renovation for the last 4 years, with many projects partially completed and now sitting idle, I no longer care.  I am content to watch my husband bake and then enjoy eating some of the best cookies I have ever tasted.  I don’t even care about the additional pounds (caveat: to a certain degree.  I am a big proponent of everything in moderation, and we have also been conscious to make time to exercise since it helps with grief.)  Ironic how many new mothers are preoccupied by losing the baby weight quickly, while I now see how trivial that is in the grand scheme of things.  (But that is a post for another time – the many ironies of infant loss.)

For now, find your joy – even if it is only for a few minutes a day. Happy decoupaging.

3 Years

Be still.

Close your eyes.

Breathe.

Listen for my footfall in your heart.

I am not gone but merely walk within you.

- Nicholas Evans

In loving memory

Joan Louise

October 9, 2011