Five.

Joan would be turning five today. If she had lived.

Five is a milestone age. When we send our kids off to their first day of kindergarten.

These are the things a bereaved parent thinks about. 

Would we have sent Joan off to her first day of school this year? 

Would she even be going to school? 

You see, since Joan had Trisomy 18 she likely would have had profound developmental challenges.

But honestly, I try not to think too much about all of that. Because there is really no way to know.

Joan changed the course of our lives in so many big and small ways. It's hard to imagine that in an alternate universe -- one where an instant of cell division occurred differently -- we would be caring for a five year old right now. Maybe even sending her off to school.

I don't think like that anymore. I don't often try to imagine what she might be like, or look like, or how her abilities may have unfolded.

One of the things Joan taught me is that nothing is certain. There is no way to predict what will happen tomorrow, let alone in five years.

The more years that pass, it's harder to imagine what Joan would be like now. Instead I think of her as the perfect eternal soul that she is. Always with us, guiding us.

And as for how we will commemorate this milestone year of five. I suppose, in the same way we have celebrated every other year since Joan's death and birth. We will continue to share Joan's story. To say her name. To anyone who will listen. We will continue to share the lessons Joan taught us, far and wide. Striving to change countless lives for the better in Joan's memory.

Fly high, sweet angel.


For more information about the mission of Joan's Reach: www.joansreach.org

To support Joan's Reach through our upcoming fundraiser: http://tinyurl.com/zfzjtfp

The Impact of One Life - June 8, 2016

When I started this blog, I named it The Impact of One Life because I knew that even though not many people ever 'met' Joan, her life would have an immeasurable impact on the world. It already had. 

By the time Joan died and was born she had already changed me and her Daddy in profound ways that I can't even begin to explain. And we saw how she touched everyone who shared in her life. It was magical. I don't know how else to describe it. After her passing, Joan's way of touching the world did not stop. We watched the ripples continue.

We saw it in the amazing new people that Joan 'introduced' us to, and continues to today. We saw it in her extended family, friends, and strangers alike.

Last week I was reminded yet again how extraordinary Joan's reach is. Five years since Joan's heart beat beneath mine and her ripples amaze me more each day.

On June 8, 2016, I was a guest speaker at a conference titled The Human Journey: Lessons in Neonatal Palliative Care. I shared Joan's story -- Joan's life -- and the benefits of perinatal hospice care to a room full of healthcare professionals.

By the end of my presentation the emotion in the room was palpable. Many people approached me after to say how much Joan's story touched them. Some even shared their own heartfelt stories.

Days later I received the following feedback and comments on my presentation, provided by attendees on the conference evaluation forms.

In addition to the 100% Excellent rating, many took the time to write additional comments such as:

“amazing speaker”

“great +++”

“changed the way I will interact with families facing similar situations”

“very touching presentation” 

and the list goes on and on.

I'm still floating on this most recent large wave of ripples created by my little Joan. And find it hard to wrap my head around.

My Joan. The tiny baby that professionals told us, before she was even born, would never walk, talk, or (fill in the blank)... 

In so many words, their message to us was that they believed our daughter would not be a 'productive' member of society. That her life had less value, or was not worth their or our time, because she was imperfect.

Each new life, no matter how fragile or brief, forever changes the world.

This is the impact of one little life.

A Mother's Legacy

Guardian
Willow Tree

Around Mother's Day, we give a lot of well deserved thought and attention to the mother figures in our lives -- grandmother's, mothers, aunts...  We think about the example they set for us. Mothers are our first teachers. Our first models of nurturing, unconditional love, compassion and selfless care.

When our decision to carry Joan to term despite her life-limiting diagnosis comes up in conversation, I often receive reactions of amazement or curiosity. And comments such as, not many people do (or would do) that.

I am reminded of a movie quote that has always stuck with me. It is from the film The Way, and in one scene the adventurous son says to his workaholic father, "You don't choose a life, Dad. You live one."

You don't choose a life. You live one.

Whether we realize it or not, the way we live our lives sets an example, impacts others, and leaves a legacy. How we respond to challenges and adversity speaks volumes. Each of our lives sends ripples out into the world.

I did not want the example I set to be that since my daughter was destined to have a brief life, we just gave up and ended it early.

I did not want the message of my life to be that because my daughter was 'imperfect', that her life had less value.

Nothing could be further from the truth.

Mother's Day especially makes me think of all those that have lost children, or mothers, or grandmother's. Or any loved one, really.

We are not all that different.

I remember all those who lovingly cared for their terminally ill family members, whether it was an elderly parent, a grandparent, or a child. Those who stayed by their side until their passing, selflessly tending to their needs, and above all surrounding them in love.

Because that's what you do when you love someone so deeply. You never leave their side, if you can at all help it. Especially when they need you most.

That's what we did with Joan. It's that simple.

We are not all that different.

Holding all of the brokenhearted close. Especially mothers missing their children. And children missing their mothers.

Grief - How Long Does it Take?

I've been asked, how long did it take?, referring to grieving the death of my baby girl.

Meaning (I imagine), how long until you...
...'got over it'?
... felt better?
...were done grieving?
...felt like yourself again?

The true answer -- the answer that no one wants to hear -- is, there is no end to grief.  Just like I will love Joan with all of my heart until the day I die (and beyond), I will also grieve for Joan until I take my last breath on this earth (and see her again).

Grief is not linear, or neat.  There is no clear end.

Image source

I started grieving the moment we got Joan's diagnosis and were told that her life would be brief.  I grieved while Joan was still alive and moving in my belly.  Sorrow mixed with joy in equal measure as I experienced all of the firsts of pregnancy -- though not in the way I expected my first pregnancy to be.

At some point after Joan's diagnosis I remember my doctor commenting on how well I seemed to be handling it.  It being continuing my pregnancy knowing that Joan's life would likely end around her birth (far too soon).  And I was almost surprised to hear myself reply, I have a feeling the hard part is yet to come.

As difficult as it was carrying Joan (without a doubt one of the hardest things I have ever done), in many ways it was the easy part.  Living the rest of my life without Joan is the hard part.  We were blessed to have had the time we did with Joan, embracing and cherishing the moments we had with her and allowing her life to unfold.

So, how long did it take?  Nearly five years out, as we approach the anniversary of Joan's diagnosis, I can tell you it does get easier.  Gradually.  My grief is not nearly as intense and debilitating as it was in the early days, on a daily basis.  But there are still days (fewer and farther between) that knock me over like a tidal wave as grief hits without warning, strong as ever.  More often, day to day, there is still deep joy mixed with deep sorrow, in equal measure.  Joyful moments come with a melancholy side of, wish Joan was here.

Now grief feels more like trying to get used to these two emotions, joy and sorrow, existing in tandem, like inseparable twins.

Unconditional Love

Almost 5 years ago we received the most devastating news any parents can get.  At 20 weeks pregnant we were told that our first baby would likely die before or shortly after birth.  And there was nothing that could be done to prevent it.  We were offered termination of the pregnancy.

I think, not knowing what else to do, doctors offer pregnancy termination in an attempt to spare parents from pain.  But there is no reprieve from the agony of this diagnosis.  No quick fix.

Not able to bear the thought of taking action to end my child's life I asked about other options.  We were told, well you can continue the pregnancy, but not many people do that.  So we set out on a terrifying journey -- but a journey full of love like no other.  My daughter, Joan, taught me about unconditional love.

Maybe people think that by choosing to continue my pregnancy with Joan, we were only waiting for death.  Delaying the inevitable.  Dragging out the grief and suffering.

This is not the case.

First of all, the timeline of grief cannot be controlled.  Trust me.  Grief can not be rushed or resolved in a tidy manner, no matter what you do.  There is no shortcut through grief.

When I found the perinatal hospice website a light went on in my soul.  The words on the page spoke the feelings in my heart, when I was too grief-stricken to think clearly.  I no longer felt alone.

Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life.

[Source: www.perinatalhospice.org FAQ - Why would anyone continue a pregnancy like this? ]

It started to sink in that this was the only time I would have with my daughter. And I could make the best of it. Love her enough for a lifetime. Talk to her. Read to her. Take her to the beach. And so many other things.

To think that we were passively, miserably waiting for her death could not be further from the truth. To be honest, it was not always easy every day. But actively embracing and celebrating Joan's life and all of the little joys of each day was a fulfilling and meaningful journey.

Because the bottom line is this:

Joan's life was just that. Her life.

It was entrusted to me as her mother. But it was not for me to decide when and how Joan's life would end. My purpose was to love, comfort and care for Joan until that day came.

Is there any greater love?

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.