Saturday, September 29, 2012


When the light begins to fade
And shadows fall across the sea
One bright star in the evening sky
Your loves light leads me on my way

Theres a dream that will not sleep
A burning growth that will not die
So I must go now and with the wind
Leave you waiting on the tide

Time to fly and time to touch the sky
One voice alone, a haunting cry
One song, one star burning bright
May it carry me through darkest night

Rain comes over the grey hills
And on the air a soft goodbye
Hear the song that I sing to you
When the time has come to fly

When I leave and take the wind
And find the land that fate will bring
The brightest star in the evening sky
Is you up waiting far for me.

Friday, September 28, 2012

Prayer Flags on Remembrance beach

I am taking part in the prayer flag initiative over at

These were the requirements : 

Honour your babies and children and create something beautiful for them! I have a Pin Boardwith all different images of flags to get you thinking about what sort of flag you would like to make. You may want to use your flag to write your child a letter. You may simply want to have their name and special date. You could include a symbol that reminds you of them, like a bird or butterfly. You could choose any sort of material. You could use water colour paint, fabric paint or pens. You could add beads and buttons. The design possibilities are endless. If you are unsure on how to make a prayer flag just google prayer flag making tutorials!
We would love it if you could include your child’s name somewhere within the flag but please, do not stress if you did not give your baby a name. All that matters is that your create this flag with all the love that you have for your child. We will of course be taking photos of the end display for you all to see. Depending on how many flags are sent in we hope to have them all individually photographed and put into an online gallery.

I decided on embroidering a phoenix on one, with little bells down the side to whisper in the wind, I painted his name on another, and the long time sun song on another. I used fabric from the Sunflower Foundation childhood cancer bandanas, and strung them together with the Childhood Leukemia supporters ribbon.

So, I will be sending my parcel of tomorrow, for my prayer flags for Joaquim to be added to a stream of others, to be hung on remembrance beach in Australia on October 15th. This was a very exciting project, and as I was stuck in bed anyway, it gave me a wonderful creative outlet for expression and healing.

Wednesday, September 26, 2012

23 September 2012

better days

I woke up with full blown flu. I guess its an external manifestation of whats happening inside me. But I also woke up with a ray of sunshine poking through the clouds. I received some very inspiring emails from my new friends who have been on this road a little longer than I have been.
Looking at pictures of my beautiful boy this morning, I am reminded of all the gifts he brought. The pure love, the forgiveness, patience, understanding. I was tempted to remove the poem that I wrote yesterday, but I have decided to leave it there for now. It is all part of this journey. The feelings of anger will undoubtedly be there, and I embrace them as obstacles that I need to cross. Forgiveness will come in time.

I started writing a diary when Joaquim was in hospital, and it became a sacred place to pour my heart out into once he passed over.

I would like to share my first entry, that I wrote on the 7th of August 2011, it was a sunday morning.

" My Darling Joaquim,
You are 15 days old today. I am holding you in my arms in the high care ward of the Johannesburg General Hospital.
We have just fed you 25mls of lovingly expressed breastmilk, and you are in a peaceful sleep as I rock you.

What an incredible journey you have had so far my angel. You surprised me when the labour began, I thought we still had 2 weeks to go. On the friday 22nd July, you were lying with your spine on mine, but you turned around during labour. Incredible!

Your birth was a dream. We played calm music, vanilla candles lit, Isabella danced with me during the contractions. You were born with 3 pushes, into the loving hands of your daddy, and then onto my chest.
Isabella was so excited to watch you being born. She called the boys immediatly to come and meet you!

 So many people wanted to meet you when they heard that you were born.
Aunty Natalie was there with Savvy and Daniel. Nanan came just after. Uncle Christo and Ouma, Shelly, Shayle and Erin.
We held you for 3 days not leaving the bedroom. We held onto the bubble of peace and love that you had brought with you!

On wednesday, my angel, we named you Joaquim Phoenix deLeca.

On wednesday night you gave us such a scare. We thought you were battling to breathe, and we took you to hospital where they x-rayed your little chest and diagnosed bronchial phnemonia.

On thursday, an ambulance took you and me to the JHB Gen.
You were placed in NICU and on a ventillator. We have watched you get better each day, so strong, so brave, our fighter.

So many prayers, and so much love, light, angels and energy have been sent to you from so many people from all over the world. Gods hand has held you the whole way!

PHOENIX- Rise from the ashes- Stronger than before.

We wait for the results of the anomily they discovered in your soft palette.

I ache to feed you!
But you are getting my milk through a tube in your nose and I hold you while it fills your tummy!

You have filled my heart with an unbelievable capacity to love, and you have given me the strength and patience I never knew I had!

Phoenix flame
down you came
from above
perfect love
hung up your wings
earth angels sing
for the gifts you will bring!

Tuesday, September 25, 2012

You dont know what I have endured

You pass me in the street
as my tears stain my face as I sit and weep

You stand and question my belief
yet have no concept of my grief

I sit in awkward silence in the seat beside you
You frown, I think, "if only you knew"

I watched my baby fade away
until, on that last fateful day....................

You tell me I should be glad he was so young,
I imagine cutting out your tongue

You say I have 3 others, i should feel blessed
Tell me, do you love any of yours any less?

I cant stand to talk to you anymore
your words dig craters in my heart, so sore

Inside I scream, I shout, I rant and Rave
Outside I appear to be so brave

Would you be stable if you had seen
your baby attached to a million machines?

They pushed a needle in his Heart
In one last attempt for it to start

You send empty words on a social network, for the world to approve and applaud,
yet in reality you leave me all alone, drowning in grief- in pain - ignored

So the next time you see me in the street
dont judge me as to why i dont greet


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.

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. loss mum

The second giftwas 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".

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.

Wednesday, September 19, 2012

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.

Sunday, September 16, 2012


 January of 1997, I had just been through  a typical teenage rebellion stage.
As a last resort to get me to wake up from my self destructive lifestyle, my parents had sent me to live with my sister for a while. I had been with her for a few weeks and she was at the end of her first pregnancy. I remember sitting in the bath with her one night, and I felt her baby move inside her tummy. That moment stands out to me as one of the most magical turning points in my life. I could feel a shift happening in my consciousness, it fizzeled right through me and settled deep in my heart. This mindblowing concept that a life was forming inside her made me re-evaluate every aspect of my life. I was blessed to be with her when her contractions started and I sat with her in the hospital as the nurses attached all sorts of wires to her belly. We were both so young, and had no other experience to draw upon as far as childbirth was concerned, but doing it together for me was an unforgettable experience. Her husband arrived shortly before delivery, and he took over as they wheeled her into the delivery room. Hearing the first cries of my beautiful nephew from the hospital corridor brought tears of joy to my eyes. The nurses wrapped him up and layed him on her chest, and she began to breastfeed him...............This is what life was about! This was my purpose here! Would God possibly bless me with this ultimate gift of being able to bring a child of my own into this world?
My parents had bought me a diary that christmas, on one side it said "bad days", that was the side I had written all of my entries. The other side said "good days", my first entry on that side, and every single entry thereafter, was the day my nephew was born.

Friday, September 14, 2012

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 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.