Updating Samuels picture..
In the last post I talked about our circumstances and how they felt like being in Limbo. As a family we have bent and bent.. but in some respects we can bend no more.
I have talked about looking for the fire in Samuel’s eyes, the hope of where there is a spark and the degree of difficulty about some of the questions we knew were coming at some point. As I said in one of the other posts I have had an uneasy feeling throughout Samuel’s admission and in many ways we all knew, at least intellectually, that the day was approaching where some tough decisions would need to be made.
Samuel has dictated that those decisions (or at least the first of them) needed to be made today, knowing it was coming intellectually is still no preparation for the reality and the emotion that hits you when the decisions actually need to be made.
Our incredible teams of doctors
My family will be eternally grateful for the care and guidance that many teams at the Childrens Hospital at Westmead have provided us. Care and guidance that have allowed us to give Samuel the best possible quality of life over the past almost seven years since his accident. That care and guidance continued today with Samuel’s pediatrician taking a big chunk of time to sit with Jo-ann and myself and talk through everything that has happened and to spell out his concerns about the capacity to continue to give Samuel a meaningful quality of life and the very real indicators that Samuel has very little fight left to give, along with his wish to continue to do the right thing by Samuel and us as a family.
I have no doubt that the conversation we had this morning is one of the hardest that a doctor ever has to have, but in his usual fashion Samuel’s main doctor did it in the most caring and respectful way humanly possible.
That conversation was the first a few very tough ones necessary throughout today to beginn to layout the plan to make Samuel’s last days as special as they can possibly be, to make sure that he remains as comfortable as possible and that he is always surrounded by his family and people that love him.
What does the plan look like?
Part of that plan is to stay at the Children’s Hospital at Westmead for the next few days while the first steps and changes to Samuel’s care plan are made, and then to move over to Bear Cottage.
The Bear Cottage team has been involved in helping to look after Samuel and the rest of the family over the past few years. They have provided us much-needed respite and pampering from time to time. It is a warm, welcoming and incredibly friendly place where we will be surrounded by a team of staff that know Samuel and the family well and with whom we have discussed many things about Samuel over the years. We will also be with other families who are at various stages of the journey we have been on with Samuel. We know that the Bear Cottage team will help us make Samuel’s last days as special as they can possibly be.
Sharing the news
There is no right or easy way to talk to your children about the coming death of their sibling. Jo-ann and I are lucky to have two beautiful compassionate young women who love Samuel unflinchingly and unfailingly. Sharing the ongoing changes with them, and then getting home and sitting down with them both to have a very long chat about Samuel and what the coming days may mean was made as easy as it could be by their maturity beyond their years, and their ability to be open and honest about what they are worried about, what they want for Samuel and for us as a family. Jo-ann and I are incredibly proud parents of three children who inspire us endlessly despite the challenges that they have each faced.
Sharing beyond home
Phone calls to a few, facebook updates, a few twitter messages, the message about Samuel and his circumstances has spread far and wide including to many places around the world. How far and wide this network of people extends is an indicator of the impact that Samuel’s life has already had.
We are really thankful for all of the messages of love and support that so many people have already sent us, and continue to send us. They are too numerous to thank individually without taking time away from other important things that we need to focus on. So please take this as our thanks to you for your love and support (of which we are sure we will need plenty of over the coming days/weeks).