FIRST ANNIVERSARY

Anniversaries are a time for gifts.
For the anniversary of Joaquims passing I received 4 gifts.
2 of those gifts I would prefer to give back.

The first gift.
A new Acronym to add to my name.

BLM…………….

Who would have imagined I would ever write that alongside my name.

Samantha Jane deLeca- BLM.

I proudly carry many other acronyms.

HBM- home birthing mum

EBFM_ exclusively breasfeeding mum
SAHM- stay at home mum

WHSM- waldorf home schooling mum

APM- attachment parenting mom

NPDM- non punitive discipline mum

Now, after reading blogs from other bereaved mums, I came across this new one that I qualify for.

BLM......................................................baby loss mum

The second gift, was a document from the hospital. 

The final bloodwork from Joaquims hospital file. 

To further highlight the inadiquacies and incompitancies of the South African medical profession, please note how they labeled my beautiful Joaquim Phoenix deLeca, as a 2 month old infant FEMALE> and they misspelled him name :).....

 The third gift, a teddy bear with leukemia sunflower headband

From my dear dear friends, who took us away for the weekend to their home at the Vaal dam, where they allowed me the time to meander along the water and reminisce, or grab a mountain bike and head out somewhere in the reserve and reflect, or open a bottle of Amarula and listen patiently as I recalled the events that took place a year ago. Friends who hugged me when I broke down, fed me, and entertained my children for me. The teddy is pictured here in the babysleeping bag that Joaquim was wearing a year ago, on his little alter that we made for the weekend with a candle we burnt for 105 hrs.. 

 The fourth gift- a laminated card

Made from the rose petals that we threw on his coffin as they drove him away. My friends had kept these petals for a year, unbeknown to me, and made them into a heart shape, and laminated them.

 To quote another dear frient who I have met through this journey of grief, "Those who should, dont. And those you never imagined would, do. Focus on the doers, because if you cannot stand with me in times of sorrow, you do not deserve to dance with me in times of joy".http://www.onceamother.blogspot.com

This past year has taught me many things.
One of those things I have learnt is how to filter out those who truly care and want to be there. As hard as it is, some of you have toughed it out, and held my hand on this journey. And I thank you for that.

Breastfeeding challenges PART 1

Giving up was not an option!
At 3 days old you were admitted to NICU (Neo Natal Intensive Care Unit), where they put you on a ventillator and stopped your feeds. I didnt think to pump that day with all of the stress of fighting for your life. I even remember getting engorged, and hand pumping almost 200mls and stupidly throwing it in the sink so that I could wash out the handheld breastpump. I guess in my mind, I always believed that any moment you would wake up and feed directly from my breast..
But that never happened!

After a few days, you woke up, they took you off the ventillator, and I was asked to provide 5mls of milk. I was so excited!
Each feed they increased by 5mls, until you were on 25mls.
I remember pumping every 2 hrs, and putting it in the fridge.
One day, a careless nurse threw away almost 500mls that I had labeled and put in the hospital fridge. I was totally devastated. It was getting harder and harder to keep up a supply, so I asked the Dr if I could hold you and see if that would stimulate the let down reflex. To my utter amazement, he said I could try to get you to latch directly from the breast.
What a precious memory for me to have today, I didnt know at the time that it would be the last time that you ever drank your fill from my breast.

I held you in my arms, and even though it had been over a week since you had latched, you eagerly took my nipple and nursed so beautifully. I felt the let down reflex, pulling up from my toes, and it was glorious!

You even switched to the next breast and drank and drank. Fro that small moment in time, everything felt normal, the white bright hospital faded away and it was just you and I, wrapped in a mother baby embrace as old as time.
You fell asleep in my arms and I remember breathing sosofly, barely moving, not making eye contact with any of the nursing staff, petrified that they would take you from me again.
I had not held you in 7 days!!!

A young male doctor came in to the ward and said that you were ready to be transfered to High Care. He took you from my arms, to prepare you for the move, but then he nticed that your stomach had become distended.
They said that your body was not ready for such large feeds and that I would not be allowed to feed you from the breast again so that they could moniter the quantities of milk that you received.
They took you off feeds again for another day until your tummy had gone down again.
I felt so guilty for being the cause of your distended tummy. If I had not been so eager to feed you, maybe we could have had more moments at the breast for shorter periods of time.
You went back onto 5mls a feed! AndI went back to pumping with my hand held pump every 2 hrs.

lets start from the beginning

 Its approaching September 23rd.

Almost a full year since my world turned upside down, and I am finally ready to write it all down.

Up until now, I have been brave enough only to find poetry, or the brave words from other bereaved parents that spoke to me so on such a deep level, that with quivering fingers and tears streaming down my face, I copied and pasted them onto facebook or this blog.

I have spent the last year searching the web, for "my baby died from cancer", "newborn leukemia", "cancer in utero", and I have found nothing to match my story. I have found a few "my baby survived cancer" or "miracle stories", and those left me realing with anger and jelousy, because mine was not a happy ending! I questioned my faith, i replayed every single moment over and over again, to find what I had done wrong or what I could have done differently to change the course of events that lead to my baby's death. Then I would spend days trying to understand my feelings of guilt! How could I not find happiness in those other stories? What kind of a monster feels jelousy over someone elses miracle story?. I thought I was all alone in this nightmare! I had found many stories of miscarriage and stillbirth and early infant death, and I have made deep friendships with many mothers who have experienced these losses. It almost feels like I have passed through a veil into another world, one where I have forgotten how to have normal conversations with people because I always end up thinking about Joaquim, a world where trivial things no longer concern me, a world where I feel awkward and uncomfortable, as if I am watching it all unfold from another planet.

There are days that pass by quite easily, where everything flows happily and life almost seems normal again, but before you know it, this pressure starts creeping up at you from behind...this reminder that all is not perfect. Then I start to feel guilty again (oh guilt, has become my close friend!), guilty for carrying on with my life and sometimes not thinking about it. But it inevitably always comes, the wave of grief, creeping over me slowly, inch by inch, sometimes over a period of a few hours, sometimes its agonisingly slow over a few days, until it gets hard breathe, to eat, to think, or even climb out of bed. It feels like I am treading through treacle, like gravity has suddenly become infinately more powerful and is sucking me to the ground, and I have to switch on my auto pilot life, to go through the motions so that no one notices this black cloud consuming my world. After all, my other children need me, they need to eat, the house needs to be cleaned, and miraculously I puppet my way through the day, only to collapse gratefully into bed as the emotions overwhelm me once everyone is alseep.

 But last night, I found http://onceamother.blogspot.com/. A writer/mother and friend,whom I have never met or spoken to, but her pain is so deeply linked to mine, I feel every word she writes as if it is my own. Reading her blog late into the night last night, and crying until my head could take no more, I decided to share my own story. My words may not be as eloquent as hers, but maybe, just maybe, there is someone else out there who is also searching for someone who's pain matches theirs. Its so funny, to think that pain can link you to someone, and help you to heal, just knowing that you are not alone in this journey.

So here goes.I have so much I want to say! So many thoughts and memories that I want to share its hard to find where to begin. So many intimate thoughts and feelings.So I thought I would begin with the pregnancy. And a little background into our beautiful family to help you gain perspective into this deep pain that has ripped my soul into a million pieces.