My heavy heart

I have the heaviest of hearts, heavier than an anchor launched from its ship.  I can’t seem to move, frozen in the depths of grief for the families of the victims of the Sandy Hook Elementary School in Newtown, CT.

When I learned of the shootings on Friday, I purposely did not turn on the TV.  I knew if I did, that I would be glued to it and so I would go on line to see what updates were given instead. I did this for the entire weekend.  We had so many plans to get together with friends and family, that I just needed to keep it off.  Not to mention, that I wasn’t ready to share the horrific events with my own 7 year old daughter Emilia and almost 6 year old son Lucas.  But I knew that sharing the events with them was inevitable, but I was buying time.

On Friday night, I did share with them, but very little detail of what happened.  At that time, there weren’t many questions.  Then on Sunday night, Roberto and I sat down with them to share basic information.  The children, their ages, what happened, when, where.  But I couldn’t share why, since I don’t even know that answer.  They were scared, but we reassured them that this was a very uncommon situation and that we will do our best as parents to keep them safe and that their teachers will do the very same.  I also wanted them to hear the truth from us.  I can’t control what they hear at school, but I can provide our own truth as to what happened.  Also, Emilia and Lucas has their own experiences with the death of their sister Abby, so death is not shied away from around our home.

The teachers.  The heroes that they are.  I was in the shower this morning and I closed my eyes and images of the teacher came to vision, holding her students, protecting them from harm.  These weren’t her children….yet they so were.  And she did the most selfless thing a human being could do, protect another human being from harms way.  To go there in that devastating space in my mind.   Horrifying yet so moving.  I can’t stop my tears.  God Bless her and the five other adults/teachers who sacrificed their lives.  And thank you to all of the teachers in Newtown, CT and each of our own teachers who care and nourish our children on our behalf.  You all amaze me. 

Monday morning, the TV came on after the kids went to school.  I found myself glued to CNN.  And I bawled and cried and felt a spread of emotions.  Anger for the murderer, he who shall not be named; anger for his mother, what was she thinking?  Sadness and despair, disbelief, heaviness in my mind and heart for the parents of those little angels.  When Abby died, the thought that weighed on me was “I don’t get it, I just don’t get it”, and here I am finding myself with this same tune in my mind, “I don’t get it, I just don’t get it”. 

I grieve for my own child and now I find myself multiplying that grief 27 times.  It is a heaviness I cannot describe.  Probably because it is all so fresh for myself.  Waking up this morning, I found myself coaching myself again.  “I can do this, I can do this”.  I have to get up to tend to the kids, to get the day going.  Trust me, I didn’t want to.  But I do my best to choose life.  “Life is for the living” they say. 

As I fold Emilia's laundry between the writing of my thoughts, I think of the families having to do the same for their child who will never come home.  I think of them, wondering what to do with their belongings, their toys, car seats, favorite movies, hats, mittens, coats, boots.  When Abby died, we had to return her car infant carrier to the store.  We had to fold her laundry, her little things.  But Abby was a baby and we didn't have much prepared for her since we weren't sure of her journey.  I don't know why I think this way.  It just puts me back to those first days of Abby's passing.  I feel their sorrow.....

I am so very relieved to see that the families are being loved, cared for and caressed as they have to endure such dark pain and sorrow, especially considering this time of year.  I feel helpless.  I soooo want to help them to ease their pain, since I resonate with them in their grief.  Each of those victims are someone’s child.  And that just breaks my heart.

I pray that our loving, caring and caressing for these families will continue beyond just the initial stages of this.  This is a lifetime of sorrow, of pain, of grief.  To those who are close to each of them, please, wrap your loving arms around them, and please, never ever let them go…..

In honor of the victims, I added them to my nightly prayers in my Remembering with Prayer post.  I know in my heart that each of these victims were greeted by Jesus at the Gates of Heaven.  I believe that with all my heart, I have to.  The victims are now Saints, perfect in Jesus’ arms.  It is us who bear the burden of their absence.  I pray that Jesus continues to carry all of us through this time of despair.  God Bless.

A poem about suffering and loss

I started to write a new post to express grief reactions but came across this well written poem and it is almost perfect! This explains how we as grieving parents can be supported by our family and friends. Grieving parents 'get' this, without a doubt. But most parents aren't grieving, and those who are wouldn't want you to be.

I have to admit, I am growing weary of the things that people say to me, don't say to me, do and don't do. Roberto can relate to half of my complaints!  The other half, not so much!  But I know it is said and done out of not knowing what to say or do because things can be uncomfortable or awkward or they just want to make me feel better.  

A hug or saying that you don't know what to say is a much more welcomed response.  Please please know that I love you all.  And out of love, I need to share this.   For us.  For you and for me.

Unless you’ve lost a child…

Don't ask us if we are over it yet. We'll never be over it.

A part of us died with our child.

Don't tell us they are in a better place.

They are not here with us, where they belong.

Don't say at least they are not suffering.

We haven't come to terms with why they suffered at all.

Don't tell us at least we have other children.

Which of your children would you have sacrificed?

Don't ask us if we feel better.

Bereavement isn't a condition that clears up.

Don't force your beliefs on us.

Not all of us have the same faith.

Don't tell us at least we had our child for so many years.

What year would you choose for your child to die?

Don't tell us God never gives us more than we can bear.

Right now we don't feel we can handle anything else.

Don't avoid us. We don't have a contagious disease, just unbearable pain.

Don't tell us you know how we feel, unless you have lost a child.

No other loss can compare to losing a child. It's not the natural order of things.

Don't take our anger personally.

We don't know who we are angry at or why and lash out at those closest to us.

Don't whisper behind us when we enter a room.

We are in pain, but not deaf.

Don't stop calling us after the initial loss.

Our grief does not stop there and we need to know others are thinking of us.

Don't be offended when we don't return calls right away.

We take each moment as it comes and some are worse than others.

Don't tell us to get on with our lives.

We each grieve differently and in our own time frame.

Grief cannot be governed by any clock or calendar.

Do say you are sorry. We're sorry, too, and you saying that you share our sorrow is far better than saying any of those tired cliches you don't really mean anyway. 

Just say you're sorry.

Do put your arms around us and hold us.

We need your strength to get us through each day.

Do say you remember our child, if you do.

Memories are all we have left and we cherish them.

Do let us talk about our child.

Our child lived and still lives on in our hearts, forever.

Do mention our child's name. It will not make us sad or hurt our feelings.

Do let us cry. 

Crying is an important part of the grief process.

Cry with us if you want to.

Do remember us on special dates.

Our child's birth date, death date and holidays are a very lonely and difficult time for us without our child.

Do send us cards on those dates saying you remember our child.

We do.

Do show our family that you care.

Sometimes we forget to do that in our own pain.

Do be thankful for children.

Nothing hurts us worse than seeing other people in pain.

Original version was written by Mary Cleckley, Atlanta, GA ~
~ Revised by Wendy Lockman ~

Before you leave, I'd also like to add some additional thoughts:

Please don't tell me "I don't know how you do it".  It feels like an empty cliche.

Please don't say "I wouldn't be able to get out of bed if it were me".  Another empty cliche.

There’s the lovely expression, “if you can’t say anything nice, then don’t say it at all”.

And Please don’t tell me I have other children to take care of.   I wish I was taking care of all four of them.

Please love me. Respect me.  Hold me.  I’ve changed.  I’m not the same.  My heart has been shattered into a thousand pieces and I’m trying to pick those pieces up and paste them back together.  I can’t find some of them right now.  Once I manage to find them and then get them glued back together, there will still be cracks and crevices.  The color is and will be different.  I will be different.  I am different.  I've changed.  I'm not the same.

Remembering with Prayer

To obtain a glimpse of solace, I contacted my mom's group to share an idea I had.  I went out on a limb as I do when I write here on my blog and  I asked them to send me names of loved ones that have passed away, whether recent or long ago and that I will pray for those people and the ones left behind to mourn their absence.  I wasn't sure how I was going to accumulate the names but I thought I would do so here.  It makes sense.  I plan to pray daily for all of us throughout Christmas and am honored that you give me the ability to do so.

If you would like me to add anyone, please feel free to leave names in the comment or send me an email if you have my address and I will be happy to add your loved ones to the list and to pray for you.  May God Bless us all and wrap his arms around us and carry us through this Christmas season.

1. Abigail Rose Bachman - lived only 23 days, died March 22, 2012
2. Richard Beaton - a husband, my dad, a brother, friend and son who died too young. 52 yrs old
3. Raelene Beaton - my cousin who died at a very young age of 26
4. Lilian Beaton
5. Corey Walters
6. Uncle Tommy and Uncle Bill
7. Nan and Gramps, Gramps J and Gramps B
8. Baby Marie Eugenia and Baby Christina
9. Baby Boy, and uncle I never met, born still some 46 years ago
10. Greg Heyward, 34 years old, father of 2 beautiful girls
11. Grandpa and Grandma McLaughlin
12. Grandma Ordway
13. Grandpa Maglier
14. Jimmy Fanning
15. Sam Sullivan
16. Aunt Bev Anania
17. Doug Burwick, my friend's dad who passed very recently. This will be a hard Christmas for this family.
18. Erin Roderick, my friend's little girl who passed away at just 4 to cancer. My friend struggles with this all year, and especially at Christmas. 
19. Danny Vandyke who died on October 31, 1999.
20. Helen and George Slattery
21. Constance and Herbert Howard. 
22. Caroline Slattery who died on July 4, 2012
23. Grandma Irene
24. Two preemies of an auntie
25. Kai Rezendes 9-5-10 to 11-27-12  (www.kaisfightclub.org)
26. Nancy's mother and aunt
27. A.D.MacLeod
28. Marie Facey
29. A father and his son, Faceys
30. Charlie Russell
31. Charlie ?
32. Cara Leblanc Kelly
33. Anna Mary
34. Eric Cechetto and Antoinette Yafallo
35. Eleanor Bradshaw
36. Sharon, an aunt who passed away from breast cancer
37. Joe
38. Ed
39. Karen
40. Charlotte Bacon, 6
41. Daniel Barden, 7
42. Rachel Davino, 29
43. Olivia Engel, 6
44. Josephine Gay, 7
45. Ana Marquez-Greene, 6
46. Dylan Hockley, 6
47. Dawn Hochsprung, 47
48. Madeline Hsu, 6
49. Catherine Hubbard, 6
50. Chase Kowalski, 7
51. Jesse Lewis, 6
52. James Mattioli, 6
53. Grace McDonnell, 7
54. Anne Marie Murphy, 52
55. Emilie Parker, 6
56. Jack Pinto, 6
57. Noah Pozner, 6
58. Caroline Previdi, 6
59. Jessica Rekos, 6
60. Avielle Richman, 6
61. Lauren Rousseau, 30
62. Mary Sherlach, 56
63. Victoria Soto, 27
64. Benjamin Wheeler, 6
65. Allison Wyatt, 6

Silent Night

Silent Night is a lullaby I sing to all of my children.  When I sing to them, I am also singing to her.  They can't go to sleep without it and I love to sing it!!

Silent Night has so many places in my heart.  I sang it to Abby the night before she died.  I also sang it to her when I had to let her body go and give it to her amazing NICU doctor, Dr. Culic.  I don't know where the strength came from but I pulled it off somehow.

I requested Silent Night to be sung at her funeral.  I always admired the woman who sang at her funeral, Janice.  The intensity and feeling that I felt that day through her music is indescribable.  I bet that's how heaven sounds.  The most beautiful day of my life was that day.  I told myself that I was going to be present for each and every moment, to breathe it all in and to sing with praise.  I hadn't been able to sing much during the pregnancy.  Looking back, I think it was a combination of road block and lack of wind.  But that day I managed and am so very pleased.

I enjoy singing.  I didn't know how well I could actually sing until I joined a choir a few years ago.  I took a break when I was pregnant but not only joined back but became a cantor as well.  I am totally going outside of my comfort zone.  My knees buckle and I get nervous but I am doing it!  I have to coach myself each time and tell myself that I am going to be okay.  It is nerve racking to say the least.  I try to dedicate my music to God and tell him that this is for him and for Abby.

My new friend Janice, gave me a very special gift and I want to share it with you.  This  was in response to my Fire post yesterday.  Thank you Janice for your thoughtfulness and beauty.  I haven't had the heart to put on Christmas music yet or to plan our festivities for decorating.  Bu this was an amazing surprise to receive over a night of not being able to sleep....

http://www.singsnap.com/karaoke/r/b86c3cdd2

Recipe for Raw Grief

I can't sleep. That's not like me but I'm not feeling well so I decided to surf.  I came upon this recipe:

::::::::::Becoming::::::::::: Recipe for Raw Grief

Pretty well sums up where I am at on a platter...this is how grief feels.  It is how I felt in the early weeks of Abby's passing and with Christmas coming, this recipe has made it's way back into my mixing bowl again...

Thank you to the author.

Halloween

This years Halloween was tough.  I did not want to participate.  I did not want to deny my children the joys and smiles of trick or treating yet I did not want to deny myself the hidden pain and hurt that I so felt.  I really had a difficult time.  I felt so much anger and resentment and I didn't realize where or why I was feeling this but then I finally tuned into it.  I missed Abby and a piece of my own soul was missing.  My child should have been with us, collecting candy, getting dressed up in cute costumes, smiling and giggling.  I didn't expect to feel this way, it took me by surprise, but yet why wouldn't I?  My child wasn't present for a highly anticipated fun family activity.

Once we started trick or treating with some friends and I saw the smiles on my kids' faces, I started to come around.  They were so excited, as any child is on Halloween.   Emilia dressed as a spider fairy, Lucas a knight and Lily, hmmm...what was Lily?  I borrowed a minnie mouse costume from a friend for her but she didn't want anything to do with it.  She preferred a short sleeve red Christmas dress that was hanging in her closet.  So on a trip to Target, I spotted a pair of wings and asked her if she wanted to wear that with the dress and she was super happy.  Soooo, what was she?  Hmmm..not sure but she looked adorable!

On the way home from the night's festivities, Lily asked if we could go to Abby's grave.  8:30pm and a three year old is asking to go to her sister's grave.  This isn't an unusual request, since the kids frequently ask.  It was just the timing of her request.  And she was begging to go.  It wasn't a one time ask, she asked at least 20 times, and I'm not exaggerating!  Roberto felt that it was Abby speaking through Lily, telling us that she is with us in spirit and that even though she's not with us physically, she is still with us and wishing us a Happy Halloween.  I soooo needed this finale to the day.  So we did it.  We woke up Lily when we arrived and left Emilia and Lucas sleeping.  It was completely dark and we visited Abby's grave on Halloween.  A perfect ending to a rocky day.....Sounds strange?  Maybe for most but not for us.

Hidden Gifts

I can’t believe how long it has been since my last post.  I was just telling Roberto today how uninspired I have been about posting.  Mostly due to the fluctuation in my feelings.  One day I can wake up and feel acceptance and peace and want to embrace life for what it is.  Then the next day I can wake up and feel intense sadness and despair.  My feelings are not continuous yet so it would be strange for me post my highs one day and lows the next and be all over the place.  But then I realized that, isn’t this normal?  And so, yes, yes it is.  It is my truth.  So I accept the emotional roller coaster for what it is and will express what I am feeling if I need to and not worry if my readers think I am nuts!  Don't worry, I already know I am!!

So I would like to share where I am at today...

Finding gifts within my pain and my struggles has been my latest mission. 

I attended a party this past weekend, and was catching up with some friends that I hadn’t seen in a while and was sharing my experiences from the past year.  And I realized that while telling ‘my story’, I am harboring ill feelings still toward my High Risk OBGYN.  If there is anyone who I am still at internal odds with, it is her.  I am hurting still from that experience.  I thought I let it go, but I guess not if I am still sharing the events that took place.  I told my friend that I am more upset with this woman, than I am at the surgeon who was responsible for Abby’s life!  Does this make any sense?  I realize that it kinda does.  I found closure with Abby’s surgeon and medical team.  They respected our family and our decisions and they accepted responsibility for what happened to Abby.  But I did not find closure from my OBGYN.  I don’t want to be the story, to replay the old tapes.  I want to let it go!!  So I feel like I need to write this in order to embrace life and move forward…

Dear Dr. Greene,

I am embracing life as best as I can with what I have today.  Today I have found a gift within my struggles. 

I want to own my end of our doctor-patient relationship.  I cannot change what has happened and I fully accept that.  I was an emotional pregnant mama and you were just being you.  I am not a victim, even though that is how I felt.  I am a mother who wanted the best for her baby.  From this moment forward, I will embrace my experience!!  I now fully realize that because of our experience together, that I ended up where God wanted me to be all along, with Abby at Children’s Hospital.  We were meant to be in those circumstances together to fulfill His greater plan.  For this gift, I am eternally grateful to you for doing his work, whether we realized it or not.

And with that said, I forgive you!

Aimee B.

  

Whether my doctor ever reads this letter or not, it doesn’t matter.  Forgiveness is about my freedom, my own liberation.  It is not about making her feel better, but it is about making me feel better.  And I do!!  

STILL Project

I love speaking about Abby.  About her life.  About her gifts.  About her treasures.  And her Purple Balloon!  I try my very best to do so openly and freely.  "Transparency" I say.  

I try my best to answer the "how many children do you have?" question. I always respond FOUR.  Sometimes that's that. But then, as you know, depending on the situation, the conversation continues and more digging is needed when curiosities come up such as names, ages, etc.  I say, "Emilia is 6, Lucas 5, Lily 2 and to honor my baby Abby, she died 3 months ago and was only 3 weeks old.  She now lives in my heart and I include her because she is very much apart of our lives."  Most people have been very gracious about my response and have been respectful and caring.  I guess I've never had a 'bad experience' while answering that question, but then again, it has only been about 3.5 months.  

But why does it need to be so awkward?  I think it has to do with most people don't know what to say.  They don't want to hurt our feelings and make us cry.  On the contrary, we WANT people to speak about our Abby's.  At least for me, that's how I keep her spirit alive.  Whenever I see or meet an old friend or new friend for the first time, I want to reminisce her and her beautiful swift life here with me.  

With that said, a few months ago, while researching grief on infancy loss, I came across The STILL Project.  It has peaked my interest and I have been following its progress since.

STILL Project is about making a documentary film where it will share the stories of infant loss....something near and dear to my heart.  It is a way for us to share our loss, grief, process and healing.   The STILL Project will help us where we can speak freely of our experiences with no discomfort.  And it will be a venue to speak globally of our babies, that YES, they did exist.  They had a purpose here on earth, however short their sweet little lives were.  They never leave us and are always with us in our hearts!  

I wasn't sure if I would share The STILL Project with you.  They have asked all bloggers to write about them to get the word out and I was hesitant.  But now I am happy to.  Here's why:

During the homily yesterday at Mass, our Pasteur said something very powerful 

"God has given me a gift.  And my gift back to God is what I do with that gift."  

Today as I write my update to you all, I found myself going back to these words.  God has given me The STILL Project.  And my gift back to God is spreading the awareness of The STILL Project to you.  And perhaps together we can make a difference in the way we speak of and receive our little Abby's.  


https://www.facebook.com/StillProject

Abby's grave

We decorated Abby's grave on Memorial Day.  I absolutely love it.  It brings smiles to my face every time I visit or see pictures.  The little things that give me smiles during all of this......

In the Arms of An Angel

With the grace from God, I see, feel, and hear Abby.

A few weeks ago, I went to the cemetery by myself.  I sat down next to the settled dirt where Abby rests and started talking to her out loud.  I felt silly doing this, but I figured what the heck!!  I told her that I loved the pink blossoms, on what we call, "Freddie's Tree" in front of her.  They were pinkalicious and each time Emilia would join me she would pick the flowers and give them to Abby.  I spoke to Abby, wondering where she was and what was she doing.  I told her I picture her running and dancing with Jesus.  I wasn't finished with those words out of my mouth, when a beautiful yellow butterfly fluttered past me!  I believe that was Abby's way of saying hello!  

Recently, I travelled back to Cape Breton, the place where I grew up to attend my grandfather's funeral.  My favorite childhood memories of my grandparents were summer trips to their cabin, known as 'The Bees Nest'.  Their three room getaway overlooked a beautiful river and you can only imagine the gorgeous music it made!!  The day following his funeral we visited his place of solitude to release his ashes into the river.  I arrived at the cabin with my sisters a few minutes following the rest of my family.  I entered the cabin to say hello and then walked outside to reminisce my childhood.  I found myself overlooking the river, watching the current and soaking in the sounds of nature.  I envisioned twenty years prior, my Gramps fishing down below, my cousins and I swimming in the river and rope climbing the steep banks.  Then, something caught my attention and my brain was trying to register what I was seeing.  Below me, on the side of the steep bank, was something very peculiar and not what you would expect to see.  Stuffed in a bunch of vines and thorn bushes was a perfectly, still blown, intact, purple balloon!!  I couldn't believe my bulging eyes and I'm still feeling the effects of my discovery!  If you read an earlier post, The Purple Balloon, you would understand my reaction to seeing a purple balloon on the side of my Gramp's riverbank!!

This is no coincidence.  This is Abby's little miracle.

What does this message mean?  For me, Abby is letting her mommy know that she and my Gramps have united and that they are with me!!  

I hear Abby from time to time.  Last week we attended a memorial service for all children who passed away at Childrens Hospital this past year. We were able to honor Abby by saying her name and placing flowers in a basket on her behalf.  During the ceremony, I felt Abby's presence.  She was definitely with us, and she let us know through music!!  She's definitely my daughter, because she knows I love music!  Three very important songs just so happened to be played by various staff members of Childrens Hospital throughout the night.  

1) You'll be in My Heart 2) You raise me up 3) In the arms of an angel

Why these songs??  

Well, in the car on the way into Boston, my kids watched Tarzan.  "You'll be in My Heart" was sung by the Boston Childrens Choir which happens to be the theme song for Tarzan!!  What are the odds that we pick Tarzan to watch just before attending Abby's memorial service?

"You raise me up" is a no brainer!  If you went to my wedding, you would know why.  I chose this song to dance the traditional "father/daughter" dance at my wedding with my dad.  "You raise me up", popularized by Josh Groban was also my very last dance I had with my dad.  He died three weeks following my wedding due to a swift battle with cancer.  My nieces Melissa  and Astrid came with us to Abby's service at Childrens Hospital.  Melissa felt Abby too.  She said whenever she heard this song, that she would picture and see me and my dad dancing.  But not that night.  Instead, she pictured Abby and my Dad dancing, smiling and happy!!

"In the arms of an angel".  These words are very significant for Roberto and I.  When I resigned from my job, a going away party was held for me.  One of the gifts that I received was a stone ornament, an angel holding a baby.  This ornament was placed on my nightstand, but Roberto moved it to our Abby shrine in our kitchen following the day she met Jesus because we believe that this was a message from God and that she truly is in the arms of an angel now.  Not to mention, the day of Abby's wake, our niece, Melissa was inspired to write these words "In the arms of an angel" on our white board on our refrigerator.  These words are still there and I have no intention of removing them.  Lastly, if you remember in my post "The Purple Balloon", I mentioned that these exact words going to be engraved on Abby's grave marker.  I can't wait for it to be installed.

Am I fishing for these little coincidences?  Not a chance!!  I don't have the creativity to make all of this up!

It is in these little gifts that give me hope to help me live life.  Treasures that I hold onto to keep going.  

With the grace from God, I see, feel, and hear Abby.

 

Abby is without a doubt, dancing with Jesus and my Dad, playing and fishing with my Gramps, and

In the Arms of an Angel.

Forgiveness

I once heard Oprah quote the meaning of forgiveness on her show.  She doesn't claim it as her own, but I am unaware of who it actually belongs to:

"Forgiveness is letting go of trying to change what has happened".  

Abby's death is a complete shock, not only to me and my family but to her entire medical team at Childrens Hospital.  Even though the possibility of her death always lingered, we thought we escaped it!  Each day we spent with Abby, her nurses and doctors would happily report that she was doing so well!  They always had good things to say about her progress, despite her breathing spells.  And they would comment on how feisty she was!  (just like her Godmother, my sister, Joanie-Lynn).   I believe that Abby used her feisty personality to live as long as she did.  Abby's NICU team were simply amazing.  Abby brought smiles to their faces each and every day and they commented frequently about this.  Abby was such a little sweet baby.  They told us how much Abby made them smile and how such a good baby she was.  Sometimes I thought to myself, "yeah, you say that to all of your parents", but I do actually believe them!! 

Roberto and I tried, we really did, to focus on the positive feedback given to us, even though we could see her struggles.  We knew that her life was in jeopardy and we wanted to act fast.  Babies with CD are pre-dispositioned to have tracheostomies and we even tried to get the surgery before the 22nd.  However, the surgery was scheduled at the latest to be the 23rd, but thankfully they were able to get her in early.  I was so relieved and happy because it hurt so much to see her suffer.  We always feared that Abby's death potentially could have resulted from the trache istelf while at home.  Never did it occur to us that it could happen during the actual procedure.  The word shock is truly an understatement to describe how we feel, since tracheostomies are routine at CHB and are performed daily.  Babies and children travel all across the world to CHB to receive this procedure.  But the risks are there, and nothing is fool proof.  

 Two weeks ago, Roberto and I made another venture into Childrens' Hospital to speak with Abby's doctors and surgeons to discuss what actually happened to her the day she died.  This was our second trip since her surgeons couldn't attend the first meeting.

We had strong, mixed emotions about going into CHB.  The meeting was necessary and vital on so many levels.  Roberto and I felt that this was essential toward our healing process. We needed to face our fears.  We needed to face our fears of the medical persons who were responsible for Abby's life.  AND we needed to face our fears of a hospital that in the future we may need to walk into their doors once again for our other three children.  

Present at this meeting with Roberto and I were her social worker, Abby's two ORL doctors (they performed the tracheostomy, a Chief Surgeon and his Fellow), the NICU Director and her NICU doctor.  (I'd rather not name her doctors, since I would like to respect their privacy).

I had butterflies as we entered the NICU floor.  Those butterflies turned into sheer terror when we were greeted by the social worker when she told us that the team was waiting for us.  I was surprised by having those terror feelings, but then again, it was the same exact feelings that I had on March 22nd, the day when her surgeons came into the consult room to tell  us of Abby's response to the surgery.   An un-welcomed instant flashback.

We took a few moments to gather ourselves, sipped on some water, and entered the room.  Instantly Abby's NICU doctor and I embraced.  It felt good to see her again.  I don't know how to explain it, but I feel connected to her.  She and her NICU staff knew Abby.  Most of our family and friends didn't get to meet Abby but the staff were her peeps!  They witnessed and experienced her life!!  They are the only few who could describe her mannerisms, personality and temperament.  Abby was such a sweet old soul and I enjoy reminiscing Abby with them.

We then shook hands with the rest of the team and sat down.  Abby's NICU Doctor started the meeting.  She expressed that she was glad that we were there to discuss and question the events that took place.  She and the rest of the group acknowledged that this was very difficult for us, which in retrospect, the beginning of the meeting was the toughest.  Once we sat down, my heart rate slowed back down and I could somewhat breathe again.  She further exclaimed that this meeting was just as important for Roberto and I as it was for them.  All of us needed closure.  She asked if we had any specific questions and how did we want to proceed and go on with the meeting.

I replied that I didn't really have any specific questions and would just like to hear the events that took place.  I also wanted to express my own thoughts and feelings before we got started.  I expressed the following (probably not verbatim but close enough) "I just want to share my feelings about what has happened.  I have peace over what has happened with Abby.  I have peace because I believe in God.  I believe that God has a plan which is one that we cannot control.  We fought very hard for Abby but God had a different plan for her.  And with that, I forgive you for what has happened.  For the record, we felt forgiveness immediately the day she died, but we were in our own space and couldn't express it that day in the OR.  I really wanted to, but just couldn't.  But even though we have peace, do we hold you responsible for Abby's life?  Yes, we do hold you responsible. But forgiveness follows immediately.  We are here to find out what happened because we do have questions about her surgery.  I forgive for me.  Because I believe in God".

Abby's surgeons listened and then replied, that on behalf of himself and his Fellow, that that day was the worst day of their professional careers.  He also acknowledged responsibility for Abby's life and acknowledged that not only did we trust them, but that their NICU staff trusted them.  The day she died, they went up to the NICU to speak with her nurses and team to discuss the horrible news, since the NICU considered Abby their baby as much as our own.

His Fellow further commented that he thinks about Abby at least twice a day.

We knew that they felt horrible.  How could they not?  And I knew that they were genuine when speaking of their thoughts and feelings.  Looking back at those moments when they had to give us the terrible update of her surgery makes me shiver.  Someday I will write about those moments, but for now, I will tell you that it felt like being in a nightmare, one that I am still waiting to wake up from.

I told the Fellow that knowing that he thinks of Abby daily made me happy.  Because it is thru those memories that help me keep Abby's spirit alive.

We then learned of the details of her surgery.  

Abby had her g-tube (feeding tube) put in place and that went smoothly.  The ORL team was present since they had to intubate her for it.  The g-tube doctors left the OR and then the ORL team took over and prepared her stoma.  Then the horror started.  It is my understanding that when her surgeons removed the intubation tube and  inserted her trache tube, Abby de-sated.  She clamped down on her airway and it became obstructed, due to her tracheomalacia (floppy windpipe).  This is the very reason why she needed the tracheostomy in the first place!

What happened after that was chaos.  But I do know that Abby's airway completely collapsed, due to what they believe, from lack of natural air pressure.  They tried to provide artificial pressure from the bag, but this wasn't effective.  They also gave multiple attempts of replacing the intubation tube and trache tube, giving her x-rays to confirm their location.  As a result of these numerous attempts, she also ended up with  pneumothorax and a collapsed lung.   All awhile, her heart giving out because it was all too much for her to handle.

We were told that there were at least 20 doctors in the OR trying to save my baby's life.  She died at 2:45pm.

Roberto and I assumed that they tried to save Abby, but after hearing the specific details of what happened made us believe that they fought for her.  I picture boxers in a ring match!

And hearing all of this confirmed one thing.  My faith.

As hard and as much as they tried to protect Abby with their special skills, medical interventions and sweat, Abby made up her mind and wasn't going to change it.  God's plan was in action.  No doctor could have prevented it.  And they knew this.  They told us that Abby's response to the surgery was not typical!!  All of their efforts should have rendered a different outcome.

I wish that was the case....

I am able to sleep at night.  I am able to do so because we did everything we humanly could to protect Abby's life.

People tell me that I am so strong.  That I am amazing.  Well, I don't feel strong nor do I feel amazing.  But I will say this.  What we did was amazing!!  We chose life!!  No matter what, choose life!!!

This experience cannot be lived alone and so daily I ask God to carry me through this.  HE does.

Before we left the meeting with Abby's medical staff, I revealed to them that Roberto and I prayed for them. We prayed for them the day Abby met Jesus.  And we continue to pray for them.

"Forgiveness is letting go of trying to change what has happened". 

It is now two months today since Abby's passing and we are just as blown away that Abby never woke up from her surgery today as we were two months ago.

We still receive mail in Abby's name.  We still make phone calls on her behalf.  We make e-mails on her behalf.  We are still in contact with administration folks at the hospital for various reasons.  Roberto had been asked "how's the baby" from work acquaintances for a month following all of this.  We received her death certificate recently.  When asked how many children do you have, I reply four.  I am considered an angel mom, because I have a baby in heaven.

The intensity has lessened, but the reality of it is just as raw as the day it happened.

As difficult as these constant reminders are, I wouldn't change it.  Abby is my daughter, my baby, my little Saint.  With all of my pain, tears and smiles, this is my life, these are my shoes and this is what God has asked of me.

A Tribute to Abby

I want to share a video that I created of Abby that depicts her short but sweet little life.  It was very difficult to create this, but I am so pleased with it.  I hope you all enjoy.


http://www.youtube.com/watch?v=xxYhfIplCBo

Abby's Reflection

These are words spoken by Roberto's brother, Luis at Abby's funeral only three weeks ago....

Abby Rose

Abby's short life with us 
reminds me of poetry;
Short and sweet,
Just a few words, 
just a few breaths, 
but powerful and deeply felt.  

And like poetry 
Abby is also Memorable! 
She will be remembered 
in so many hearts 
and in so many ways.

Abby is one of my heroes
She is My New Arc Angel:

The name Abby, short for Abigail 
comes from the Hebrew word 
for Father, 
Abba.

Abby in Hebrew means Father's joy!
And our Heavenly Father 
surely rejoices in her, 
his tiny and tender 
little rosebud.

Abby is also Roberto's joy. 
A piece of Heaven on earth!

Roberto, 
Kim is right in calling you a Rock! 
And like St Joseph you quietly stand 
Mirror of Patience 
& Pillar of your beautiful Family!

And Abby is that tender 
and little rosebud 
which bloomed mysteriously 
in between your rock
and Aimee's garden- 

It reminds me of a poem written by Helen Steiner-Rice
Which I would like to share with you
Titled

The Tiny Rosebud God Picked 
to Bloom in Heaven 

The Master Gardener
from heaven above
Planted a seed
in the garden of love,
And from it there grew
a rosebud small
That never had time
to open at all.
For God in His perfect
and all-wise way
Chose this rose
for His heavenly bouquet,
And great was the joy
of this tiny rose
To be the one our Father chose
to leave earth's garden
For one on high
where roses bloom always
And never die.
So, while you can't see
your precious rose bloom,
You know the great Gardener
from the upper room
Is watching and tending
this wee rose with care,
Tenderly touching
each petal so fair.
So think of your darling with angels above,
Secured and contented and surrounded by love,
And remember God blessed
and enriched your lives, too,
For in dying 
your darling brought heaven 
closer to you!

And I would add
That in both
Living and dying
Abby brought Heaven
closer to all of us!!!

I thought she had completed her mission
And now I realize that her mission has just begun
And it's still here with us

Abby is still doing her little miracles!!!