Archie’s Archive

31/10/2024

We’d love your help on this special new project!

We need your help!
… Let’s refurbish the counselling room of the Peadiatric ICU unit at a local state hospital***

She walked past our cubicle and we darted to grab her attention.
“Doctor” we gently said, “please can we have a minute of your time.”
Her body language told us there was not much opportunity for idle chatter. Our minds screamed for a moment of silence with her and our sweet boy’s records. We needed information so desperately.

Around us, alarms screamed.
Parents hovered around their own sick children. Nurses scurried.
The CTICU is a frenetic place.
Filled with terror.
So much terror.
It never stops. Not in the way that New York keeps turning. More like the perpetuity of hades. Never slowing.
Never gentle.
The belly of hell.
An assault to the senses.
An invasion to the soul.

“Doctor” we pleaded. “Doctor how much longer do you think we’ll be here?”
Our newborn son, Archie, lay next to us in a tiny bassinet.
Hooked up to a ventilator.
Being fed through a tube.
Every part of his being attached to some type of mechanical life support.
Optimistic, we hoped that we were nearing the end of this uninvited detour to our much wanted, eagerly awaited, last born son.

The tenth day of his life and we still didn’t know what the prognosis was.
We still had no concept of what it was that was keeping our much loved little boy stuck in this place that was festering the fibres of our souls, whilst keeping his body alive.
We were exhausted.
And broken.
And heartsore.

We just wanted to go home. Desperately.

“Doctor, we just want to get an idea of what the plan is. Do you think he’ll be home this month? Next?”

She looked at us, barely slowing her pace as she moved between beds.
“You need to speak with the surgeon” she said.
“Ok, but can you help us understand what he’s going to present to us? Does Archie need surgery?”
We pushed for any glimmer of information we could get.
Across the way a child’s vent line popped off, the alarm screamed out, his nurse rushed and reconnected him to the breathing machine.
Beep. Beep. Beep.
He was back on line.
Crisis averted.
A mother let out a quivering bleat. She rushed to stifle her emotion with a hard paper towel from the hand wash station. A drop of blood formed on her nose, raw from the onslaught of her broken heart that leaked incessantly from her welled up eyes.
The doctor checked her phone.
We knew she was busy. Saving lives. Her irritation with our questioning intensified.
As chaos reined around us she turned her body half into the passageway ready to exit. Before we last her we asked again:
“Please doctor, we don’t understand”
Her discomfort was palpable. The disease of her body rattled ours. With her body ready for exit to the feigned safety of the ward rounds she was attending, she retorted:
“You need to speak to the surgeon! Things like this can be a little bit fatal!”
And with that she melted back into the chaos.

We stood there in stunned silence.
Surely we had misheard her.
Surely she did not just tell us that our baby might die in the middle of a busy ward while the world turned around us and alarms continued ringing our ears.
Surely she didn’t just walk away leaving us standing alone by the bedside of our children who ‘might be fatal’.
People averted their eyes from our bed.
The nurse busied herself away.
Archie’s alarms
Continued signalling that all was as well as could be expected for a child depending on a machine to keep him alive.

We stood alone.
In the middle of the busy ward.
The worst news a parent could ever hear.
Keep it together.
There are people watching.

****
To be continued
****

We are on the countdown to the anniversary of our precious child’s death. And whilst we remain fixed on the fact that his death was such a tiny portion of his story- his life remains what we celebrate and delight in- we do wish to mark the occasion within our home. And to be of service to other parents in similar circumstances seems the most fitting way to achieve this.

In collaboration with Archie’s Archive, we are delighted to be converting a small room in a local state run hospital, into a comforting space in which parents can be counselled and held when being delivered with earth shattering news like we were given. Rather than allowing the trauma to be compounded by an audience if alarms and nurse and other heartbroken parents, our home is to provide a small space of solace for parents in similar situations to us.

We ask your support in putting together this special heart project which we KNOW will make such a huge difference in the lives of both parents, and the doctors forced to delivering the most earth shattering news.

Donations of goods towards our specified list of items (to be released soon) as well as cash to enable us to purchase the relevant fitting for the unit, will be so hugely appreciated. We’re also looking for anyone who can assist us in drawing out the concept layout of this room (any designers who could spare us a short amount of time for this little project would be SO WELCOMED).

Banking Details:
The Maletsatsi Foundation NPC,
FNB 62865881314,
Cheque Account,
Branch Code: 210835,
Swift Code: FIRNZAJJ
Ref: Comfort & Your email address

The Maletsatsi Foundation
NPC Registration Number: 2020/257077/08
NPO Registration Number: 254-968.
PBO Reference Number: 930070879

02/09/2024

A precious little boy had a trache inserted last week. As I’ve watched his beautiful mamma traverse the many emotions that go with this huge step, I remembered that we had a number of helpful bits and pieces that eased our lives when Arch was nursed at home.

As I readied to pack up a little bag of loved items for this sweet boy, I suddenly thought important to check with my darling husband, to see if his heart could cope with me letting these pieces out of our home.

“My love” I texted him as I followed with what I was wanting to do.

And just as I pressed ‘send’ and released the image of the precious little items I was planning to hand over, a little flutter caught my eye.

And I looked up to see a this precious little Robin, inside our home, ON Archie’s original archive.

“Hey mamma” I heard his little voice say. “Hey mamma, be brave. Be kind. Remember I’m more than the medical equipment that held me. Remember I’m so far from gone.”

There is no doubt in my mind that our sweet boy approves of this little act. And there is no doubt in my mind that it is in fact him reminding me constantly that he still with us, holding our hearts 💛

27/08/2024

Closing out the day at the place it all started… Netcare Sunninghill Hospital CTICU. It’s been a cup-filling day for me seeing Archie’s sunny little libraries bursting with books 💛💛 Our hope for our boy’s sweet legacy was just this- that his name would still be on the lips of people who knew him, that his story would forever touch the lives of many who did not meet him. Hearing Archie’s name so many times today has just made me burst with delight.

I was so sad not to have been able to deliver these precious books on his actual birthday- but extending the celebration has been such a special added bonus in reality.

27/08/2024

I looked at this photo, and I suddenly thought ‘I look happy’. There was a long time I wondered if I’d ever get to feel that again. Today, as I’ve weaved through hospitals, and our boy’s name has been on the lips of so many people, I felt like colour returned to my soul.

Our reality is not one that we can bring our boy back, much as we’d love to. But through this precious initiative, his legacy still lives. So many spectacular stories coming from the wards- so many lives that our sweet boy’s life has touched.

How immensely grateful I am to be able to honour our son in this special way 💛💛

26/08/2024

Two years ago today.
A moment that altered my brain chemistry.

After what felt like a lifetime of separateness, for the first time since we’d been separated this birth, i got to hold Archie in my arms.

That moment profoundly affected me.
It physically changed me.
The minute he was placed into my arms the nurse sternly told me “you HAVE TO STOP CRYING, I can’t have your tears on my baby”. But that moment was bigger than any of us in that room. That life changing, spirit altering, mind shifting moment that gave meaning to everything.

That nurse unknowingly saved my life that day.
Sr Hlengiwe.
Moments before, I’d looked out of the unprotected, open window on the second floor of the hospital building, and wondered if it was high enough to ensure i died if I jumped.
I was that deep into the despair and devastation.
On the surface, everyone was in awe of how I was coping. Functional at face value. I was so shocked at how little people seemed to be registering about how devastatingly deep the hole was- I was staying alive just for my children (thank goodness for them).
I wanted to die.
It was a devastating part of my life, something still filed with shame and not usual for me to make mention of.
I still don’t know how we survived that time.
But i do know that a tiny little nurse with the heart of a lion and the spirit of a warrior, through her kind boldness that day, saved this mammas life.
And armed me with enough motivation to keep on keeping on.

It is still hard for me to explain to the average person how all consumingly devastating and exhausting, dehumanising, heartbreaking, confusing and overwhelming ICU is. Perhaps not physical ICU, but certainly the dichotomy of the fact that you should be holding your little baby in your arms and showing them off to the world and instead you’re standing over a sterile cot too terrified to breathe wrong and scared to ask more than you should. The compounding guilt at not knowing what to do, at being a crappy friend, at struggling to brush your teeth, at wanting to die when all you want is your baby to live… there is great mercy that not many people will need to have first hand experience of it

15/08/2024

I think I will forever look back on the 15th of August with a mix of emotion. The last day of our life the way we knew it. I’m so many ways, we knew this already- welcoming your sixth child brings with it a natural understanding of the impending shift in your family dynamic. Good lawd we were excited.

I’ve said it before and I’ll say it till the end of my time- in the history if the world I don’t think any baby was ever as eagerly awaited and excitedly anticipated as Archie Gray. An entire army of children were beside themselves at the imminent arrival of their new brother, and Richard and I, now seasoned parents, were in the most comfortable and peaceful place we could ever have hoped to be, ahead of the arrival of this most loved boy.

Nothing in the world could ever have prepared us for what was about to unfold in the upcoming days. When at our foetal anomaly scan, we’d been very relaxed in saying to the doctor that we could handle ANYTHING, except a life limiting condition. Having palliated with two babies just months before, having loved on and cared for them until they passed peacefully in our home, we felt like a terminal diagnosis would be the only finding that would have any bearing on our views. But our scans were deemed normal, and the only potential finding had been dismissed by a more senior specialist (accurately as Archie never had the condition which had been flagged as a possibility).

But I digress. As a ‘geriatric pregnancy’ (can make this stuff up), I’d been uncomfortable and sore and the pregnancy had felt like a lifetime. I’d avoided cameras, feeling like a beached whale, and now I’ll hold onto this pic, the only one of my bump, forever. The last moment of ‘normal’. The last time that we felt only excitement and no fear. The last time we had a specific vision of our future.

Archie should be two whole years old tomorrow. His birthday will remain one of the happiest days of my life, forever. And so for that, I’m excited to celebrate him tomorrow. But for today, I’m remembering with tenderness, the mamma filled with hope and joy two years ago today. The mamma who mercifully knew not what was about to unfold in her life. The mamma who was unknowingly preparing for the most life altering journey of her life. The mamma who was about to walk through fire with her sweet family while burning brightly herself.

Today I have so much grace for the sweet mamma hiding behind this phone, beyond herself at the immense excitement of what was to come in the next 24 hours 💛

Today I’m treading gently with my own soul.