finishing strong – for better or for worse

‘BIG MAGIC – creative living beyond fear’ was released today – a book by the author of Eat Pray Love by Elizabeth Gilbert. I had been looking forward to this day, I was planning to have her book in my hands and ready to become inspired by the words within.

However nothing feels magical about today, in fact the title alone, made me feel just how far away I am from any kind of  “BIG MAGIC”. Besides the simple fact that I didn’t get around to buying the book 😉

Life instead, has been a concoction of immense fear and dread and with not one drop of creativity in it. The past week has felt like a hurricane, emotionally, mentally and physically. One minute I’m celebrating the achievement of BLISSFUL SLEEP achievements for Chiara and the imminent arrival of Chiara’s Fundraising Auction night, the next I’m dialing 000 watching my daughter Grace gasp for air. I feel I have failed her miserably, seeing her struggle for breath seems to reflect our world right now. We all need to come up for air..

I sat next to Grace in the ambulance as we rushed to hospital, her eyes fixed on me for security. I tried to hide the fear and anxiety that was swirling around in my mind, I smiled and sung songs, thought up creative games, I did everything in my power to show her that all was OK. But it wasn’t, life was quite frankly f’d up. The timing, the situation, the severity of illness, the vague answers from medical staff… seriously what the F was happening?

Hadn’t we already done our time in the past two years? Didn’t we already have a long road of challenges and mystery ahead with Chiara. Didn’t  we need a little reprieve to gather up strength for the next mini hurdle with Chiara?  Wasn’t Grace supposed to be the one who would always be okay? Wasn’t I giving her everything she needed? Then again how can I? How can I provide her with what she deserves when I have a child – on the way to turning three that cannot move, that cannot travel easily and who’s body sometimes turns against itself. How can I be 100% there, when I’m rallying to get fundraising for medical treatment? Balance!!! and after this weekend, is my number one priority. My girls health rely upon it, not to mention my own health and well-being.

The need to protect our own is so fierce within, you hear of mothers accessing super-human powers in times of need. I heard a story once, not sure if it’s just an urban myth, of a Mother who lifted huge tree trunk off her car (that would otherwise require a crane to lift it due to the heavy weight) to save her child who was stuck dangerously inside –  I have felt like that woman 💪💪👊👊!

So after being wrapped up in a whirlwind of fear, after watching Grace fight for breath, watching her cough up blood and watching her cry once she finally regained breath – “Mama I cant breathe, I can’t  breathe”…shaking because she is so scared. I can only forsee that we are at the Mercy of God and the Mercy of ourselves as to how we handle stressful moments. To me it felt like sheer terror – I was so scared of losing Grace. All the grief from Chiara was resurfacing. I had already partly lost a child, in the sense that Chiara was never going to be able to live a normal life or a very long one at that. So things felt intense for so many different reasons.

Our breath is our personal portal to life,  and watching Grace struggle for hers has been scary to say the least. 

Aside from the Doctors, Hospitals and other Medical interventions, we have to get to a point where we hand the rest over to God, The Divine, The Angels… at some point we have to surrender the Fear and hold our palms open to the universe to receive. Just like Grace did in this photo – I mean seriously – what an act of an angel.

So scrolling through the FB feed three things stood out for me today:

The first from a site called Momastery, who also mentioned the BIG MAGIC book release. She spoke of a time she met Elizabeth Gilbert, and shared the following “I just moved to Florida from Virginia. I always dreamed of living near the water: but then I got Lyme Disease and almost died and after that I said SCREW IT, I’m living where I want to live. Feel’s like a woman has to almost die before she gives herself permission to live the way she wants to” Amen to that sista!

Then this message from my beautiful soul sista Penelope with a picture of “Sheera” which saved me from a mini-meltdown this morning!

“Don’t forget your secret powers!!! I think you need them right now and just remember-

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have troubles with me!” (Dr Suess)

In your case it’s a magic sword and a rainbow unicorn but the outcome is the same!!

AND then this quote from Erin Kyna Life Coaching:

“THE TEMPTATION TO QUIT WILL BE GREATEST JUST BEFORE YOU ARE ABOUT TO SUCCEED”.

Boom! The hook on the line I needed to grab onto when I’m otherwise drowning.

I am so tired it’s not funny, at 4.30am when I had still not fallen asleep I just cried! I felt cheated by the Gods of fate. I already had an “unwell/brain injured baby” I didn’t want anything to happen to my other baby and I have been terrified that something may happen to Grace, my saving Grace. 

I stayed in my P.J’s until this afternoon, Mum popped over to help with those little things that feel MASSIVE when you can’t get to them: taking the bin out, washing the clothes, emptying the dishwasher, hanging clothes on the line, folding clothes, picking up toys, putting things back in their place, cooking Chiara’s specialised meals. Thank you Mum (love you so much) it gave me space to be with Grace. I fed my little poppet healing broths all day (lovingly made my Gill), I kept up with her all medication, supplements and tried to just chill out with her. We meditated, we played games, we drew, we did Yoga, we stayed connected.

And so I intend on finishing strong. I may of cried, I may of dropped the F bomb, I may of screamed out of frustration and lack of sleep, I may of doubted myself, I may have dropped the F bomb again after stubbing my toe on this array of special needs equipment taking over the house!, I may have let myself fill up with fear, I may of fucked up my priorities, I may have been short with people, I may of lacked Faith in moments, I may of done things a thousand different ways on clearer days..

But if TODAY – I can get through this whirlwind, and if I can tell my family I love them, and if I can hold them tight and wrap each of them up in my love and if I can surrender my worries to Mother Mary and if I can trust in divine chaos,

well then it seems, I actually still have a lot of BIG MAGIC in me and definitely ahead of me!

For better or for worse we’ll ride the storms. Love you Mauro: how blessed are we to live with a constant reminder of Grace & Clarity (Clear Chiara) 💛🙏

AMEN!

8 Comments »

  1. For better or worse That’s the deal.
    We deal with it my dear friend .🙏
    I hope little Amazing Grace is feeling better🙏xxx

  2. So glad I read this today. My emotions and day was much the same as yours. Giving up seemed so attractive today. Writing a song about killing the midwife even crossed my mind. All I could think about is how angry I felt that all our lives were turned upside down and how unfair it is to see my boy in such pain and his constant struggle. Thank you for your words, I know writing them helped you and reading them helped me. X

    • Hey Ina,

      Thank you for your message, always love to connect with other Mum’s who are going through a similar journey. Oh I hear you about the lyrics!!!!! 😉

      I don’t know why some of us have to endure this – more so, why these beautiful children are born with so much suffering. Some days it’s overwhelming…

      Thank you again for writing to me, you are so right, writing my words really help me, and it’s a blessing that they may also help others…

      Wishing you all the best for bubba number three.

      Lots of love to you Ina..xx

  3. Your words inspire so many Nat. Let all the love that we can muster help you ride the wave. You are definitely on top of it. Thank God you are HUMAN. 🙂 🙂 🙂 🙂 xxxx Love always, Janet.

  4. Oh my darling Nat, I am SO glad those words reached you. I have so much love for you, and so much admiration for what you are doing. You have all of my love and support always xxxx

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