The Brave Little Soul

In loving memory of our brave little soul

Joan Louise

October 9, 2011

Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for this day she saw suffering in the world. She approached God and sadly asked "Why do bad things happen, why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts." The little soul was confused. "What do you mean?" she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued. "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer to unlock this love - to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave, let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this, so I have carefully selected many souls to care for you on your journey. These souls will help you create your miracle: however they will also share in your suffering. Two of these souls are most special and they will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought and you will be healed."

Thus at that moment, the brave little soul was born into the world and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those who were always too busy, found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant families reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle happened. God was pleased.

The Brave Little Soul
By John Alessi

Joan's Reach has arrived!

In the midst of a challenging year...  with mounting demands and stresses...  personal, professional, national...  hurricanes, school shootings, bombings... 
 
I have not posted in a while.  I guess I have not felt the same inspiration to blog. 
 
But on the side... slowly but surely... at times intermittently...  I have been working on Joan's legacy. 

I guess I was waiting for the perfect time to announce it here.  When it felt legitimate.  When I had a major milestone to report. 

Or maybe I was trying to decide the best way to merge my blog with this new endeavor. 

But suddenly, unexpectedly... today... the perfect time presented itself.

I received an email from a woman that I respect greatly.  She is a mother, author, pioneer and advocate for perinatal hospice care, and she manages the primary, authoritative source for the most up to date information on perinatal hospice.  This website is used internationally.  It is the perinatal hospice source.

Today, Amy Kuebelbeck wrote me to inform me that Joan's Reach has been added to the perinatal hospice website as a resource for parents.  Joan's Reach is officially included in the list of Websites related to continuing a pregnancy.

I am honored and grateful to be included.

Most of all, it is a testament to the Impact of One Life.  Something that never would have been possible if not for our daughter, Joan.  Proof of how far one little, brief life can reach.  And how much good can be born out of the most challenging of situations.  Every life is valuable, and creates more ripples that we can imagine.

What better time to announce Joan's Reach.  Though there is still much work to do.  We have arrived!

Pregnancy and Infant Loss Awareness Day

In honor of Pregnancy and Infant Loss Awareness Day, October 15th, and all of the mothers who understand this all too well.


A Birth Healing Blessing

Blessed sister, beautiful one
with broken wings.
Your journey is a difficult one
that no mother should have to endure.
Your path is steep, rocky and slippery
and your tender heart is in need of gentle healing.

Breathe deeply and know that you are loved.
You are not alone,
though at times, you will feel like a
desolate island of grief
untouchable
distant.
Close your eyes.
Seek the wisdom of women who have walked this well-worn path before you,
before,
and before,
and before you yourself were born.
These beautiful ones
with eyes like yours
have shared your pain, and
weathered the storms of loss.

You are not alone (breathe in)
You will go on (breathe out)
Your wings will mend (breathe in)You are loved (breathe out)


~ Mary Burgess
Author, Mending Invisible Wings, a healing journal for mothers following the loss of their baby through late-term miscarriage, stillbirth, or neonatal death.

On Our Own

It became clear very soon after Joan's Trisomy 18 diagnosis that we were driving the bus, so to speak.

Terrifying thought.

As first time parents -- facing a challenge we never expected and knew little about -- we had no idea what we were doing.

Two things were clear. Our daughter was most likely going to die either before birth or shortly after.  And we were going to love and support her for her entire life.  In other words, we were not going to end my pregnancy.

Other than those two certainties, the rest was a terrifying unknown.  What do we do now?  How do we prepare? 

We got conflicting guidance from various medical professionals.  And everyone we spoke to seemed to have a different opinion on what was best for us and Joan.  And then there were the doctors -- esteemed specialists even -- that said to us, we'll do whatever you want.  Really.

Doctors are not trained for this type of scenario.  They want to fix everything.  As Dr. Byron Calhoun, a pioneer in the perinatal hospice field, explains these terminal fetal diagnoses require high touch, not high tech patient care.

So we were, in many ways, on our own.

On our own to figure out how to do this scary thing called continuing the pregnancy.  With five more months stretching ahead of us.  How on earth would we get through each day?

With each appointment, we were clearly educating the medical professionals in many ways.  As if they were looking to us for guidance.  Most people terminate, they kept saying.

Don't get me wrong, many of them offered useful council, comfort, and advice for steps we could take. We are grateful to many people for their support.  But sometimes I wondered if their help was mainly accidental -- or possibly intuitive for the compassionate few -- rather than based on experience or training.

Each time, I kept waiting for someone to step up and say this is how you continue the pregnancy and here is a road map to get you through the next few months.  These were supposed to be the experts after all.  Why did we have to figure it out as we went along?  What if we made some huge mistakes along the way?  It felt like no one was guiding us.  We were leading.  Blind.

We were the experts.  And what we found was that there is a road map to guide you through the rest of the pregnancy and beyond.  It is called perinatal hospice. 

Unfortunately, we had to blaze the path in many ways.  All while experiencing devastating grief.  It is a very personal journey.  Unless you are a parent who has lived through this experience, maybe you can't fully understand it.

But there is no reason why medical professionals cannot offer perinatal hospice care.  If they can diagnosis fatal conditions before birth, they should offer clear options and support.  It is time for health care to catch up to diagnostics.

No one should have to go through this devastating experience feeling scared and isolated, without experienced guidance.

I knew my baby would die before she was born

This is how another mother, and blogger, put it:

"I fit into a unique niche that is becoming more prevalent; I knew my baby would die before she was born.  When I was twenty-three weeks pregnant, she was diagnosed with Trisomy 13 and we were told she may be stillborn or live minutes, hours, ..." 

This sounds all too familiar to me.

You can read this other mother's story at glow in the woods.  I hope you do.  It is honest and real.  I can relate to it on many levels.

We are becoming more prevalent -- parents who know, long before they are born, that our babies will not survive.  Largely because of advances in prenatal testing and mainstream access to these tests.

While it is a sad and devastating reality, I am encouraged by others speaking out and by the awareness I hope it brings.  So that compassionate care and support to those like us will improve. 

There is certainly room for improvement.  We can not pretend that situations like this don't happen.  Or that they only happen to other people.

We can not assume that the quick fix is the only option.  Or that it is the right option for every parent.

It is not comforting to watch others look at you with I-wish-I-knew-how-to-help-you expressions on their faces.

I am striving to educate and raise awareness for this increasingly prevalent group of parents like us that deserve understanding, compassionate care and support.

Because of You

What is the impact of one brief life?
It might take me forever to try to explain it.

One of the countless gifts I received from my daughter are the amazing people I've met and now call friends, because of Joan. 
One of those wonderful, dear friends sent me this poem today.
So very fitting.

Because of You

 

Because of you I appreciate the sunset more than before.

Because of you I stop to look up at the moon and wish upon a star.

Because of you I look forward to hearing the birds sing in the morning, and thank God for their beautiful songs.

Because of you I am more understanding of others and accept people for who they are.

Because of you material things do not matter.

Because of you the touch of someone you love is more precious than any gift you can receive.

Because of you I have a broken heart but I thank God for sending you to me.

For there is no stronger love than I hold for you.

Until we meet again...

A Choice

Doctors and society seem to think that we have a choice, as a parent carrying a child with a "fetal anomaly", as they call it -- a disorder that statistically indicates the baby is not likely to survive. 

The choices presented are:
1) abort the baby, or
2) continue the pregnancy.

(#2 should really be more specific -- perinatal hospice care -- in my opinion, but you can read my other posts for more on that.
Also, I recently learned that some parents don't even realize that there is an option #2, but that is for another day...)

What no one seems to recognize, is that it really isn't a choice in the way they expect. 

With diagnosis of a "fetal anomaly", we are told that it is statistically unlikely that our baby will survive.  Our baby will die.  And we will grieve.  We will be devastated by the loss of our very loved and very wanted child.  We have no choice in that.  And in reality, the grieving starts immediately at the diagnosis as we mourn the loss of the healthy child we expected. 

The choice then is on the timing and method of our baby's death.

So the choices are actually:
1) take action to end your baby's life, or
2) allow your baby to have a natural death.

No matter which path you take, you will grieve the loss of your child.  And that grief is significant.  There is no shortcut through it.  Or detour around it.  There is no choice.  You have no control over it.

As it is, society shuns mourning.  Everyone expects you to get over it and be back to your old self in record time.  

Terminating a wanted pregnancy perpetuates this expectation.  It becomes a secret to hide.  No one saw your baby, so to them there is no loss.  No allowance for grief.

How does that help a devastated parent?

And, oh by the way, termination goes against every instinct you have as a parent to protect your child.

“The key point is that there is no shortcut for grief. Getting over it sooner does not make it easier,” says Kuebelbeck. “If your baby is going to die, your heart is going to break either way. Why not do what you can to fill your heart first?”

[Source: Providing hospice in the womb, Roger Collier, CMAJ]


The choice we have as parents is really this:  How will you love and care for your baby?

For us, we knew taking action to stop Joan's beating heart would be irrecoverably traumatic.  It would make the loss and grief immensely worse and more complicated.  It went against every instinct we felt as parents.

We knew what would help us through the devastating loss of our daughter was this...

Recognizing, honoring and sharing her life with others...
Receiving support from family and friends...
Treating Joan with dignity in life and in death...
Creating memories to carry her with us for a lifetime...

Filling our hearts first.