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

Providing Resources

When we received Joan's Trisomy 18 diagnosis we were immediately referred to a genetic counselor.  That was a very good first step.  I wanted as much information as I could get about the disorder, our situation, and what comes next.  In addition to much discussion, the genetic counselor had a few booklets that we could read, but said, "I'm sorry, these are my only copies so you can't take them with you."

I remember sitting in the crowded waiting room after our appointment trying to read through the material and soak up whatever I could.  Let me tell you, shortly after receiving a terminal diagnosis for your child you are mainly in shock and cannot focus on much of anything.  So we wrote down the titles, went home and ordered copies of a couple of booklets from Amazon.  When they arrived I began reading one and noticed that several pages in the book were blank.  Pages of text were missing right in the middle.

Really?  Is it too much to ask for some resources and information to guide us through these terrifying uncharted waters?  This is unacceptable.  Maybe that's when the spark of Joan's Reach first ignited.

Secondly, the brief booklets focused mainly on difficult decisions -- in other words deciding whether or not to end your pregnancy.  Then they stopped.  What happens next??

There were some support group resources listed for pregnancy termination.  But the continue your pregnancy route seemed lacking in guidance, resources and information.

Part of what we are doing with Joan's Reach is trying to fill this gap.  We provide bags full of resources and information that parents can take home with them.  To look through when the shock has dulled a bit.  Enough information to make informed decisions for their family.  As well as contacts and resources to guide them throughout the pregnancy and beyond.

Mother's Day

Three years ago was my first Mother's Day.

I was pregnant with our first child.

Just a few days earlier we were told the unimaginable.

The baby you are carrying is not going to survive.

We, like many parents in this situation, were essentially offered one solution.  Terminate the pregnancy.

The alternative -- carrying to term -- was viewed by the doctors as doing nothing.  As in, why torture yourself like that?

It's not doing nothing.  It's the furthest thing from doing nothing.

It's the most important thing I've ever done.


Carrying your baby to term, knowing she will not live long is...

... loving, protecting, and providing for your child's needs -- even if it means providing a peaceful life and death.

... allowing her to have the natural life, and natural death, she was intended to have.

... recognizing that the grief will be there, and will be complicated, regardless of the choice.

... filling each day with gratitude and cherished memories of your much loved and wanted child.


People have told me it is brave.

For me, it was just necessary.  I got to spend nine months with my daughter, see her and hold her in my arms.

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!