Jonah’s Journey

Jonah’s Journey Birth complications, Cancer, Secondary Infertility and Twin Loss, - a few tear jerkers and a lot of celebrating success we never take for granted 🫶🏼

11/05/2026

Giovannas podcasts are always a comfort for us,
this one truly hit home. I love Jonah, but I HATED being pregnant, I can never go through it again.
Losing his twin especially just made me miserable, I don’t know when/if I’ll heal from it❤️

i didn’t gather jonah’s thoughts before writing this because he can’t talk and would probably toddle off before i finis...
04/04/2026

i didn’t gather jonah’s thoughts before writing this because he can’t talk and would probably toddle off before i finish asking.
today my other half referred to life after Jonah as the “second half of your (my) life.”
i wanted to shout what the fck do you mean rhys. But i couldn’t pretend I didn’t know exactly what he’s on about.
I gave up my old life for this new one. My boring plain same old same old life for this new life that brings me the biggest highs and lows “the all” can bring. Bringing up a child, sleepless nights. Harrowing amounts of health complications. A body I don’t recognise, doughy and stretched, like worn dried out play dough rather than the tight yet depleted gaunt body i used to deprive of fun things like a second helping of cake or any food after 7pm. Regimented, predictable life. Awful friends I kept around for continuity but yet always.. predictable

Some things from the past didn’t change. For example; listening to twenty one pilots, as one does i belted the words “a drag path etched into the surface as evidence I left there on purpose.” loading the dishwasher of Jonah’s bottles, that maybe I should have actually cleaned this morning, I felt a euphoric yet well haggard release of emotions. This really is the second half of my life, the old me is dead, i’m so glad. I appreciate life better, having had so many threats of mine and my son’s life from somehow multiple 1 in 1,000,000+ health conditions. The day before I went on maternity leave we were inches from being struck by a school bus on my way to work. I couldn’t help but think for ages, were Jonah and I not “supposed to be here” for just life’s natural population control, and all these awful things are happening to get rid of us. My mindset has now changed to, we got away with it, we’re still fcking here!
1 year post cancer diagnosis, nearing 3 months post major surgery from an accident in early January, my mortality is an ugly scab i keep picking at, but as scabs which get picked at do, they turn into accidental scars, and scars stick around for famously, life.

So there you go. Serendipity in scab analogies is my thoughts on things.
love all our supporters immensely, thankyou for reading ###❤️

Why don’t you let him just cry it out? 9/10 times, Rhys now puts Jonah down for bed/naps. I (Saf) had to step back massi...
17/03/2026

Why don’t you let him just cry it out?

9/10 times, Rhys now puts Jonah down for bed/naps. I (Saf) had to step back massively as me putting him down wasn’t good for anyone.

Last night, (long story, car broke down) I put him to bed. I lay for ages winding myself up asking why the simple act I should enjoy of putting my son to bed feels like a swarm of hornets trapped in a paper bag behind my ribs and when he reaches the sleep state, they aren't just humming anymore they’ve started chewing through the freaking walls of my sternum.

He’s asleep. That’s what I wanted right? Why am I freaking out now?

Then it hit me, I’m waiting for seizures..

Anyone that knows us in the slightest knows we wish for him to sleep through the night. Knowing us deeper you know there’s layers on layers that go further than just our own selfish feelings about our sleep deprivation.

It’s the screaming. His profuse sweating. Holding his breathe, rigid body I can’t cope with. It’s his grogginess after.
That tires me, that exhausts me, not the lack of sleep, but the fear that’s always awake.

It’s baffling to me how close he was to never making it home, having experienced a particularly prolonged seizure at birth and yet I’m having to fight for why I think this isn’t something he’ll grow out of it that it’s just teething.

so no. I will not let my son “cry it out” when his brain misfires and is a battlefield in there, I’m not going to let him deal with the trenches alone.

My baby is so brave
I have to learn to be too ❤️‍🩹

💜💙💚💗 Rare Disease Day 💗💚💙💜Today we’re celebrating our resilient, fun loving, MIRACLE, our Jonah Bear 🧸Jonah throws himse...
28/02/2026

💜💙💚💗 Rare Disease Day 💗💚💙💜

Today we’re celebrating our resilient, fun loving, MIRACLE, our Jonah Bear 🧸
Jonah throws himself into everything he does, and has from the start..
I’d say the "don’t do things by halves" angle is perfect in our family’s ethos.
They say "go big or go home," and apparently, Jonah took that personally.

For Rare Disease Day, we’re celebrating our favourite overachiever. Most people pick one challenge; Jonah and I decided to collect four like they were rare Pokémon cards:
1. VTS (Vanishing Twin Syndrome); High drama from the start.
2. Choriocarcinoma; Because why have a normal pregnancy when you can have a rare oncology case?
3. PDA (Patent Ductus Arteriosus); A little extra heart "flair."
4. PPHN (Persistent Pulmonary Hypertension); Just to keep the NICU team on their toes.
16 months later, Jonah is thriving and we’ve officially retired from the "Rare Discovery of the Month" club. We don’t do things by halves in this house, we do them in quadruplicate!

Despite all of these hurdles, Jonah ALWAYS ends smiling and loving the world he had to fight so hard to be in.

If Jonah can do it, we can too ☀️

reflection on these late nights when Jonah does not sleep makes me think of his twin. What could have been. What already...
09/02/2026

reflection on these late nights when Jonah does not sleep makes me think of his twin. What could have been. What already was? What is happening that I can’t sense.

My spiritual believes has always been a big “I don’t know” since childhood. But here I share something I imagine Jonah knows all too well when he was chilling with his brother in my tumtum! enjoy

Conversation in the Womb - A Parable of Life After Delivery-

In a mother's womb were two babies. One asked the other: "Do you believe in life after delivery?" The other replied, "Why, of course. There has to be something after delivery. Maybe we are here to prepare ourselves for what we will be later."
"Nonsense" said the first. "There is no life after delivery. What kind of life would that be?"
The second said, "I don't know, but there will be more light than here. Maybe we will walk with our legs and eat from our mouths. Maybe we will have other senses that we can't understand now."
The first replied, "That is absurd. Walking is impossible. And eating with our mouths?
Ridiculous! The umbilical cord supplies nutrition and everything we need. But the umbilical cord is so short. Life after delivery is to be logically excluded.''

The second insisted, "Well I think there is something and maybe it's different than it is here.
Maybe we won't need this physical cord anymore.
The first replied, "Nonsense. And moreover if there is life, then why has no one has ever come back from there? Delivery is the end of life, and in the after-delivery there is nothing but darkness and silence and oblivion. It takes us nowhere."
"Well, I don't know," said the second, "but certainly we will meet Mother and she will take care of us.
The first replied "Mother? You actually believe in Mother? That's laughable. If Mother exists then where is She now?"
The second said, "She is all around us. We are surrounded by her. We are of Her. It is in Her that we live. Without Her this world would not and could not exist."

Said the first: "Well I don't see Her, so it is only logical that She doesn't exist.""
To which the second replied, "Sometimes, when you're in silence and you focus and you really listen, you can perceive Her presence, and you can hear Her loving voice, calling down from above."

- a parable from Your Sacred Self by Dr. Wayne
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