The 27th of November 2018 marked five years since Maya gained her angel wings. It’s the time of year we as a family slow down and spend a little extra time concentrating on our own needs and emotional well being. We escape to places Maya loved and spend time celebrating her life and all that she has provided to us and others.
Later in this blog you will find the next chapter of Maya’s Journey, the one we wished never happened, and while utterly heartbreaking it helps explain why we have made it our mission to help the families we do. Before we get into the next chapter though, we’d like to share how we celebrated Maya this year.
Maya loved animals, giraffes in particular and despite her demanding treatment schedule, we managed to take her to Dubbo, Sydney and Mogo Zoo. At each zoo she had the opportunity to hand feed giraffes, such a very special experience. This year we visited Mogo Zoo and Amelia fed the giraffes, just like she had done with her little sister.
Never underestimate the impact of spending quality time together as a family. As soon as we arrived at the giraffe enclosure, Amelia remembered feeding the same animals over five years ago with Maya, despite being only four years old at the time.
Such a beautiful experience to celebrate Maya’s life.
The next chapter of Maya’s Journey was written on the 2nd December 2013, which would have been Maya’s 2nd birthday, only four months after the last chapter, when we thought Maya had won her battle with cancer.
‘Well bubby you got us all to believe, from this awful monster you would now have reprieve.
We went to the Gold Coast, you loved every day, we took you to Sea World to see the seals play.
You saw Dora and Boots; it was a real treat, but a dip in the spa nothing could beat.
Your central line was removed, a new sense of free, you could do everything with Amelia, Daddy and me.
We kept our promise and had lots of fun, a ‘Bath Day’ to celebrate, because you’d never had one.
You went to dance classes with Sissy in your tutu, twirling, laughing and singing it was wonderful watching you two.
We planned a trip to Darwin to see family and friends, but Oma got sick so we altered our plans.
Beautiful Oma with whom you shared something so rare, we thought it was purely love, but cancer was lingering there.
It took her so quickly our hearts torn apart; little did we know it was not an end but a start.
Oma held your hand as you both said your goodbyes, I felt like an intruder with tears in my eyes.
At the time I didn’t realise what was going on, but with hindsight I know it was an incredible bond.
I like to think she was saying if you chose to go too, she would be sitting above, arms out waiting for you.
We flew to Darwin the day after we said our final goodbye; Oma had found Opa up in the beautiful sky.
As soon as we landed you went for your first ever real swim, I look back now and wish for that moment we were in.
As when we had finished and were washing you down, I saw a nasty big tumour on your leg as you turned around.
The first night of our trip spent in Darwin ED, their worry and inexperience was all I could see.
It was a few days before we could get back to your Sydney team, so we sucked it all in and continued our dream.
A dream of a ‘normal life’, spending time with no catches, one continuous stream of normal, instead of little batches.
We had a fake birthday for Sissy, she was turning four, but by her actual birthday we would not be in Darwin anymore.
We flew back to Sydney to start treatment again, but I now wished we kept flying and never got off that plane.
Scans showed there were two tumours in your left thigh, but the worst was to come and made all of us cry.
You had extensive spread of tumours through your abdomen and chest, in your kidneys, lungs, around your aorta and all of the rest.
There were no treatment options for such an extensive spread, everything that we asked; your professor would just shake his head.
It’s a matter of time is all he could say, I will never forget that life shattering day.
So we stayed at Bear Cottage for more than a week, to find comfort in their experience and support was all we could seek.
Our family lives stopped too and down they all came, to hug you and hold you, again and again.
We thought you would leave us before a very long. But you had other ideas, so incredibly strong.
We took you home to Bonner for palliative care, but you got really sick as soon as we got there.
Pneumonia, seizures and blood poisoning all on the first night, about two hours left of life the doctors predicted, an incredible fright.
Five days in high dependency, you wouldn’t let go, how you kept fighting we just didn’t know.
A 40min MRI without sedition, a very big feat, never before a child like you did they meet.
The scan showed two tumours encroaching your brain, how you functioned so well was just completely insane.
We took you to Clare Holland House for a couple of days, while they sorted oxygen for home; it was just a short stay.
But of course in true Maya style you made the most of your time, feeding ducks by the lake and on the play equipment you would climb.
We did so many things to we never thought we would, we just kept on going while you showed us you could.
We went to Dubbo, to Western Plains Zoo; we went to the beach and Jambaroo too.
We filled our days with fun and so much love, hoping you would be spared from your time due above.
You would dance with your Grammy and sing ABC, read books with Aunty Cate, play with Aunt Tessie endlessly.
Aunty Chichi was there for so much of your time, bringing laughter and fun, helping your little light shine.
Your sister and Daddy were just the bees knees, playing with Sissy and resting in Daddy’s arms, all that you pleased.
You have family and friends that love you so much, helping sculpt you perfectly so every heart you would touch.
We bought a campervan so that we could be free, to travel anywhere together like the wind in the trees.
We made it Broulee, five days at the coast, Mogo Zoo, jumping pillow and swimming is what you liked most.
We came home for your party that Starlight gave you, a chance to celebrate with friends and a few family members too.
Our plan was to head off in the camper once more, but you started to tire, this time different than before.
So we went back to Bear Cottage for some respite and care, little did we know you had plans for being there.
You still wanted to swim and have lots of fun, read books with your Mummy and ‘run Daddy run’.
But after you gave us a chance to settle in, you put your plan into action, the next chapter was to begin.
As you rested on the deck with your family close by, you refused grapes for morning tea and quietly closed your eyes.
I turned to ask you a question but all I could see, was your beautiful little face staring up at me.
We thought it was a seizure and you were trying to pull through, but a few seconds later when I looked down at you…
I realised it was goodbye you were trying to say, so I picked you up in my arms and whisked you away.
I told you I loved you and hugged you to me, we sat on our bed, you me and your heart shattered Daddy.
You took one last breathe I can still hear it now; you’d enriched our lives in a way no one will ever understand how.
Amelia came in to give you a hug and a kiss, Daddy held you forever telling you how you’d be missed.
We bathed you together, Amelia washing your hair, everyone so gentle with extreme amounts of care.
We stayed with you in a private room just for us, lots of kisses and cuddles but it would never be enough.
They came to Bear Cottage to take you away, tears falling freely like the rain on that day.
The drive home was solemn without you in your seat, no more Barney was playing, no demands for things to eat.
We were just so lucky to love you for the time that we had, we will treasure the good moments, letting go of the bad.
Your time on earth has not be in vain, teaching life lessons to all, until we see you again.
Some people may wonder how we will get through, but our drive to help others is our honour to you.
So fly high little May May for you are now free, from cancer and pain just like it should be.
Send us signs that you look down from above, drying our tears with your wings and sending us love.