Today is Ethan's 5th birthday, it is such a big number and I find it hard to imagine how Ethan would look like, how he would be aged 5.
He is my forever 3 year old, nearly 4. Not my 5 year old boy who would have been heading into reception class this year (though he was already at school).
Today I am sad at what I am missing, but still grateful I had him at all. Today I wont be cooking for the my brood, but will treat ourselfs to a take away.
Later on we will release balloons for Ethan.
The UK is lucky to have a wonderful actress who people my age remember as being the "OXO mum".
Lynda Bellingham has, in the last few weeks annonuced she has terminal cancer and her time is very limited. She has written a book "I have been dying to tell you" that details her view on her Cancer and her view on Dying. She talks about having a choice, that when the time comes she can "open that box" and choose not to have any more treatment. Lynda hopes to get past Christmas before she makes that decision.
It has made me think about choices I have made. I suppose you can say I had a choice, in the early days of Ethans sickness - as to whether or not Ethan had a lung bypass. The thought terrified me, Ethan being on this machine that helped him oxygenate his blood long term, potenial added risk of further infections, pain and limited life enjoyment.... I said no. A day later the choice was taken away as the specialist hospital had said it was not an option for him. His lungs were too damaged and his medical history too.. too bad for them to consider him an option.
Yet I had already chosen no.
I had the option to keep Ethan on long term high flow Oxygen, confined to a hospital bed but alive. That is until he got the next infection.
I chose to bring him home, to let him learn to crawl and hopefully walk again. To see the outside world, the ducks that he loved, the flowers, the friends and family.
Lynda mentions that Death is not often talked about, and she is right. It is shyed away from both before the event and after.
Ethan's death has never really been talked about much. I can say it was not as bad as I thought it may have been, it was harder on me than him. He did not suffer at all, it was those watching that had the pain.
To Lynda, I tip my hat to you. Thank you for making death a topic recently.
I wish you love.
An ordinary Mother with extraordinary children!