Reflections from your grieving Mother

I regret…

not savouring every single moment that you were content and stable with my undivided attention.
pushing you to walk when your legs were tired and painful, not realising that growing leukaemia was responsible, rather than just muscle weakness and deconditioning.
tense dinnertimes, trying earnestly (and often despairingly) to get you to just eat one mouthful, while the other kids watched on – pleasant mealtimes were few and far between.
encouraging more independence and proficiency in certain tasks when you most just needed our help.
often letting other tasks or children get in the way before I came to your aid, gave you a cuddle or tended to your care.
allowing my over-tired frustrations bubble to the surface when you woke baby Gilbert or me for the umpteenth time every night in Transplant, because you were miserable and uncomfortable.
having to say ‘goodbye’ at the end of my half week in Transplant when it was Daddy’s turn in hospital, and I had to go back to the flat with the others, when all you wanted was another Mama cuddle.
not being able to give you more play dates with your beloved friends.
profoundly: that you never got to have your long-awaited Make-A-Wish Hamilton Island beach holiday.
never being able to give you the opportunity to ring the End-of-Treatment bell at any hospital, because you never got to the end of any treatment.
the many times I couldn’t fix your pain, discomfort or tremendous itch, and couldn’t take your agony from you.
that you never got to have your well-planned, much-anticipated 7th ‘superhero’ birthday party with your little group of friends in your backyard at home.
that you had to miss out on so many swimming adventures because of your hated Hickman central line.
that you never got your booked Melbourne-Tasmania overnight ferry trip with Daddy because you became too unwell at the last minute both times.
having to take you away from your beloved friends and community for so long while we were in Melbourne and Seattle.
that you didn’t get to experience the joy of losing your first tooth.
not helping you have more cuddles with your adored guinea pig, Tommy.
getting cross at you and Lucy for talking in bed after lights-out.
that I allowed so much of your precious time in your remaining 5 palliative weeks of life to be wasted waiting in clinic.
that you didn’t get to say goodbye to your best friend.
not reading you more books, not playing more games, not having more endless cuddles.
not taking more videos and photos of everyday life.
that you’re not around to watch your adored baby brother grow – to keep playing cars with him, to ride your bikes together, and to listen to and rejoice in him learning words and songs.

I’m thankful that…

we exhausted every evidence-based therapeutic option, we researched every possible clinical trial, and we traveled worldwide in pursuit of a treatment that would kill your cancer.
I allowed you to decide when you felt up to going to school, and when you wanted to stay home, during your last few weeks.
we let you eat whatever you felt like you could stomach towards the end – even if it meant only a few banana lollies for lunch.
we carried you upstairs, helped you dress, and used the pram when we could see that you tiredness was overwhelming you.
we still went to the effort of taking our family up the east coast of Tasmania for a few days of a replacement Make-A-Wish holiday.
I skipped early-morning running or gym because you’d crept into our room before sunrise, and we got to snuggle in my warm bed.
I took the time to really feel your breaths on my arms, indulge in the warmth of your skin next to mine, and the softness of your hair on my cheek.
you got so many special Daddy outdoor adventures in your early years, and so much one-on-one creative art time with him in hospital.
you had Gilbert to keep you company through Transplant Ward isolation.
we have kept your many drawings, sculptures and creations, your cards, your hair that you lost once after chemo, your clothes, your special toys, and your teddies.
we read so many books, played so many games, and had SO many beautiful cuddles.
we took so many videos and photos of everyday life.
we let you know just HOW much we adore you.
I talked to you about going to Heaven many times, and how much God loves you.
we were part of a church community that you loved, who upheld us and interceded for us when we were breaking
you felt safe and loved in my arms at the end, with Daddy beside us.
you stayed with us that morning until your cherished sisters were able to say goodbye.
you weren’t scared of dying; you knew you were going to Heaven.
we have a Father who knows what suffering is, and loves you more than we could imagine.
you are no longer suffering.
we got you, our Ned, from the 19th May 2012 until the 29th March 2019.

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” - Revelation 21:4

Edward Isham