I actually wrote this blog on Tuesdsy after our trip to Brisbane when I was full of emotion. Now that I’ve calmed a little I hope it makes a little sense for the new journey we are on over the next few months.
Today I read a blog from a premmie parent which was ten things you learn after having a NICU baby. This Mum made reference to her anger at people telling her she was lucky her baby survived and she felt anger because there are so many things you don’t feel lucky about.
This got me thinking …
I got told this so much I nearly believed it ‘You’re lucky you left hospital with one baby’.
You know, I am very lucky, actually, I am very blessed that Lucia survived. But not so lucky that there are so many complications associated with prematurity.
I’ve said this before but the general populous believes that once you’ve brought that NICU baby home from hospital that life is roses!!
There are lots of roses but there are lots of thorns before you get the Rose.
At three and a half years post NICU we thought life was pretty ‘rosy’.
Yesterday we drove to Brisbane for a specialist appointment that was scheduled for today. This morning I woke up not feeling right in my belly. I thought this was due to eating something I wasn’t used to.
I forgot how those thorns get me every time we see a specialist. My sub-conscious reminds my body to feel anxiety that my heart hopes it will forget.
I walked into the specialist expecting a very straight forward appointment where I explain in great detail my premmies medical history and then finally she gets booked in for surgery.
Ouch – did you feel that thorn?
It seems we were knocked back for surgery at our local hospital. We were knocked back at the Coast hospital. So only Brisbane would have us which is just over two hours from home. But why?
Because of complications associated with prematurity.
Because life saving techniques like intubation so my 800 gram baby can breathe and survive, has damaged her airways.
Because life saving techniques like nasal gastric tubes to keep her body sustained with food damaged her upper airways.
Because a ‘simple’ surgery has turned into a complex affair.
Because …… just because my little girl was born so early, so fragile, she needs to endure surgeries to ‘rectify’ the damage to enable her to manage what we all take for granted.
In and out. In and out.
To enable my baby girl to breathe on her own, without gasping for air. Without bouts of no breath.
To breathe when she sleeps. To enable her brain to rest, to enable her little body to grow and develop and thrive.
So today I don’t feel so lucky.
Leaving the hospital with one baby instead of two isn’t lucky it’s terribly agonising.
Having that beautiful miracle, who survived against all the odds to then endure so much more medical intervention isn’t lucky – it’s just shit if I’m really honest.
I am blessed and I am lucky that Little Miss Lucia gazed into my eyes tonight and she said to me ‘I love you to the moon and Mummy I love you all the way to the ends of the rainbow’.
I am blessed and I am lucky that this amazing little girl chose me to be her Mummy. She chose me to hold her hands when the thorns get us and sometimes too often. She chose me to fight for her for all the little things, all the big things and everything in between.
She is my Rose and every day she smiles into my face I see her bloom and we can forget all the thorns that make things difficult.
Because the most important part of this journey is that I love her with all that I have each and every moment of every day.
Your prayers and love to keep her healthy to the lead up to this surgery would be greatly appreciated and of course for her recovery afterwards.
With eternal love and lots of tears
1 Corinthians 13:1-3
If I speak in the tongues of men or Angels, but do not have love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing…..Love is patient.