A few weeks ago I was reeling. Angry at the world for making life so hard right now, and angry at myself for not just getting on with it.
Like I usually do.
I pride myself on my ability to just keep swimming.
Yeah, life sucks and then you die. You just keep swimming, laughing and living and no doubt it will get better.
I have always felt that I just need to survive.
I don’t have to thrive. I don’t have to rise to challenges.
When things get tough, I just have to survive.
The past few months I’ve been spinning.
Oscar had another a surgery.
A surgery that I knew he would need from his second day on this earth.
A procedure that had been imminent and I knew would be in late March or early April since the December before.
I knew.
I was prepared.
I was mildly anxious, but mostly nonchalant.
This is life with Oscar. One step at a time, one foot after another, we just keep going.
And when we went, and he coped so well with the actual operation, but not at all with the hospital environment, I fell.
I fell hard and fast and painfully.
I fell onto the feelings I’d been squashing for over two years.
Scared, tired, defeated feelings.
Oscar has a congenital heart disease.
He has had a surgical repair at 12 days and a balloon angioplasty at 10 months. He is monitored on a regular basis by a team of medical professionals for a bicuspid aortic valve that at present is not causing any issues.
He also has asthma – most probably related to his prematurity – that he will hopefully grow out of.
However, Oscar is 9 times out of 10 healthy, thriving, strong and brave.
That is all easily processed and accepted as reality.
And you would be forgiven for thinking that during the past two years I must have been a mess on a regular basis.
A slobbering, sobbing, shamble of a person.
Unfortunately not.
Instead, I stood up straight 9 times out of 10.
Oh, I had my moments.
My “why us! Why him! Why me!” moments.
Two quite memorable ones.
The first the night 11 day old Oscar was diagnosed with his coarctation of the aorta and was being prepared for transportation to Westmead Children’s Hospital.
There was snot, racking sobs and much feeling sorry for myself and my poor poor sick baby, and my poor poor not-so-sick baby I would be leaving behind for the time being.
The second was the day before we found out we were heading home to Young Hospital.
I was fed up with the NICU, I was fed up with having to ask to hold my own children, I was fed up with not seeing and caring for Rory as much as I wanted to, and I was fed up with being told how healthy these twin boys were.
If they were so healthy why weren’t we going HOME!?! HUH?!?
Turns out they were pretty healthy and they were sending us as close to home as was medically acceptable.
But they don’t tell you any of this in the NICU. Getting your hopes up there is like the promise of an ice cream on a hot day.
And then watching the ice cream truck drive by and miss you completely. Or worse, it stops. But you are short 5 cents.
And so no one tells you there is even such a thing as an ice cream truck.
Until you walk into the Special Care Unit for the midnight feed and find the healthier of your babies softly sleeping in a baby capsule.
Having an oxygen saturation test. To see if he can make a trip in the back of an ambulance back to Young, 2 hours drive away.
And he can.
At that point in time I was so scared they were going to send me back to Young with Fraser, and leave Oscar behind in Canberra. I’d already had to separate and be separated from both my babies and I wasn’t about to let it happen again. I didn’t believe for a second that our little local hospital would accept a 1.65kg baby who’d only been downgraded to Special Care two days earlier, and only out of a humidicrib for one day.
But our little local hospital did take that 1.65kg baby, and the 2.65kg baby, and their mother.
But the day before that happened, I lost it. At my Mum. Who had spent over three weeks of her life caring for my 18 month old in all the comfort that a hospital Residence, communal living arrangement can provide.
Which is not a whole lot.
I screamed and cried and fell into pieces in a shared living room while a man whose wife was dying of cancer sat on the couch trying to watch the shared TV. I still haven’t figured out if he sat still out of rage for my ungrateful, spoiled tantrum, or from fear that if he were to move he too would come under fire from my so very misdirected anger.
Because sometimes there is nothing to be angry about except a situation. And a situation doesn’t care.
So I fell apart, stood up, and kept going. Kept my back straight.
And that’s what I do. Standing up straight, taking what I can on my shoulders, having random outbursts about not wanting to change one more nappy or wash one more dish.
But holding myself together with the smiles of my children, the kisses from their lips, the sparkle of mischief in their eyes.
I’m a 3D puzzle, my pieces made up of all of their little pieces. Built up bit by bit.
And sometimes – not nearly often enough – all those pieces cascade to the ground. Ready to be rebuilt into something new.
Stay strong my friend!
Cranky, whenever I see you have commented I always feel so supported. Thank you.
!!!
i love that you recognise that its okay to be in ‘survival mode’ sometimes, its okay to fall apart – so long as you can square your shoulders and look the eye in the world again.
Lyndal recently posted..a better place
We are all just trying to do our best and sometimes survival mode is the best we can do. Thanks Lyndal.
You are amazing , so poignant and heartbreaking a journey (pun not intended) that you , Pal, Roo, Fraser and Oscar have ridden. You are graceful beautiful lady and it is understandable you have to fall and pick up the pieces. It is okay to not stand up straight all the time xox
Trish recently posted..Plant a tree on National Tree Day + {Bunnings $100 Giveaway}
Oh Trish, coming from you that means a lot – thank you for taking the time to check in xx
It’s a-ok to not be ok – most of the time, let alone some of the time.
Cut Daisy some slack.
She’s phenomenal.
xxxx
Mum on the Run recently posted..All Creatures Great and Small
I’ll give her a free pass for a little while, I guess xx
Daisy recently posted..Picking up the pieces.
Oh daisy. This has me in tears. I wish I had words right now but I don’t. Your doing great daisy xo
Lifeasmummymax recently posted..Dear masterh
I didn’t mean to make you cry, Joz!! Thank you xx
Daisy recently posted..Picking up the pieces.
Daisy you amaze me! We ‘talk’ almost every day and yet it is so easy for me to forget that you are living with this worry and strain every single day because you never ever cry victim. Falling apart to rebuild is normal, I would be worried if you didn’t release once in a while. I am certain that Oscar gets his strength from his wonderful mother and because of that he will take all of this in his stride remaining the happy, cheeky, gorgeous boy that he is. I feel so pathetic worrying about living with family while we build a brand new house when you spent weeks in shared hospital accommodation facing things so out of your control. I know it wasn’t your intention but thank you so much for the new perspective xxx
Erin @ Eat Play Bond recently posted..The Baby Ceiling
You are not pathetic! All of those concerns are real and very valid. Right now I’m ridiculously concerned about which handmade doll to buy a friend’s one year old! Everything is relative.
But thank you, you darling, HAWT woman!
Daisy recently posted..Picking up the pieces.
I’m giving you the biggest possible digital hug right now.
xxx
Lisa recently posted..To buy or not to buy?
Thanks Lisa, I’ll take it!
Daisy, I got “sweaty eyes” reading this, you are an amazing woman. I think I’d be a crazy mess if I were ever in that situation. Hugs to you xx I will think a little harder now before whinging about my trivial crap
Lovely lady you are doing an awesome job as a mother and reading about all the extra load you have been carrying worrying about your cherubs touches my heart. You are so strong and amazing. Admire you so much and I love that you know that it is alright to have a big cry some days. We all do it and we all need it. Keep those tears coming and keep putting those puzzles pieces together the best you can. N x
Naomi Ellis recently posted..updating the entrance way to my home
Naomi, I love that you get it. Thankyou. Xx
Hi Daisy,
I don’t know you that well (yet) but I think you remarkable, truly! Survival and holding it together enough to keep going is really, truly enough sometimes and I think you have to let things fall apart a little to keep going too.
Big, big, big hugs, I’ll be thinking of you all.
xxx
Cat recently posted..When I look back
i have have been through different battles in my life, the autism of my son is only the latest thing life seems to throw at me.. but i have a similar, soldier-on attitude .
sometimes, i think its not a good thing, and its true, like you i can crash, and hard.
but my mother, who is gone now, she once said to me “your. strength helps OTHERS to keep it together. some women can do that.”
you sound like you can. you are strong for them.
Thanks Nikki xx
Just having three little one’s with perfect health would be a massive strain and a few adult tanty’s would be completely acceptable Daisy! One can not hold in all that pain for ever – it will spew out and it’s completely healthy and necessary to let it out. Big hugs gorgeous lady.
PS I think that public meltdowns are good for society in general. Why hide that stuff behind closed doors, so that everyone thinks it’s completely normal to be contained at all times. xx
Lee recently posted..Our July Birthday wrap up and MY FIRST EVER GIVEAWAY!!
Fairy wishes and butterfly kisses beautiful lady, this was so well put. Hope things ease up a bit for a tiny bit at least
Rhianna recently posted..Silence, Noise and Angel Connection
Xx
This made me feel so sad but so connected to you as well. I have been there where you feel like holding it together is just not working.
Take care of yourself a healthy Mother is so important.
Thanks Vanessa – doing the best I can like everyone else, I guess!
My Li’l Fatty had two echoes – that was bad enough. His heart is fine. Well done for being as strong as you have been!
Alison recently posted..Tuesday Musing
I really feel sorry about Oscar’s heart problems, I hope it will him get better once… These times must be really hard for both of you, I wish you enough power to survive.
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