Why is this one of the hardest blog posts to write…
We should feel joy at the news that Jesse will be having a baby brother or sister!
So many people would dearly love to bring a child into the world and being denied doing so, must be so very hard to live with. It is both an incredible honour and responsibility to care for one’s own, or an adopted child, and I hope that through our work with Blue Skye Thinking that we have demonstrated just how important it is, that children other than our own, also need our love and support.
Andrew and I were trying for a third child when Skye was diagnosed, so we had always hoped for another sibling for the boys. Our third child was not ‘meant to be’ back then and actually, that phrase is fuelled with so many meanings and interpretations, that we would ask people to please NOT use it in any comments to us now.
I feel like a terrible person, when I lie in bed at night and cry to myself saying, “but it’s Skye I want back”. I feel no joy, no excitement – nothing! That makes me so very scared. Those who have lost babies or children and gone on to have another, please tell me this is a natural feeling?? One of the reasons why we have decided to keep this news to ourselves for so long, is because we are nervous about the reaction from others, and we are therefore in self-preservation mode.
It has become apparent since Skye’s death, that there is a need for people around us, to find and express a positive outcome to what has happened. I cannot stress enough that for us, there isn’t! The most comforting words spoken to me in this whole time, were from a child in Skye’s year group at school, when he said “I didn’t want Skye to die, but he did, it is sad.”
“At least you have Jesse.” The words ‘at least’, should never be used when talking to anyone who is grieving, it does not help! We know parents who have lost their only child to cancer and my heart bleeds for them. Jesse or any other child for that matter will ever REPLACE Skye. I know, that for so many who have seen what our family is going through, will see this baby as some wonderful news to come our way and please don’t get us wrong, we do appreciate that we are lucky and are very grateful, but gushing comments of congratulations we fear, is the very opposite of what will help us as a family through such an emotional and difficult time.
Andrew and I told our family a matter of hours ago and felt with only two months to go, a poncho was not going to conceal our secret any longer! For those of you who are good with dates, this means that the baby is due around the time Skye died, so every year, it will be incredibly hard to keep our emotions in check.
I feel glad that I am able to write the words ‘every year’ and I will explain why…
If I am being totally honest with you, I was in such a dark place back in the winter that my absolute plan was to:
1. Bring to the public’s attention that having no system in place to collect and share clinical data for children being treated with standard treatments rather than clinical trials, was not only putting their lives at risk, but wholly unacceptable and needed immediate action.
2. Provide Jesse with a sibling
3. Having fulfilled my purpose in life, I would be free to join Skye as my place is by his side, wherever he may be.
I cannot stress enough, that to me I felt Jesse would be better off without a miserable mother holding him back, and if only he had a brother or sister, and of course a loving daddy, then I could be freed. Over the last few months, I have been increasingly confused and felt so torn. I love Jesse so very much, and when he cries and wants me to cuddle him, I feel my decision waiving. He often comes out with questions about why Skye had a lump in his head and why he died. He has also asked if this baby will also have a lump in its head, because he doesn’t want it to leave him. I don’t want him to have to wonder why I left him too.
These erratic feelings leave me with a sense of betrayal to what I had always intended. On holding a dear friend’s new born baby the other day, I felt shocked that I had even thought I would be able to leave a defenceless child alone without its mother, and I so very much hope that mother nature will kick in when we meet. I am scared though, what if it doesn’t?
I do not care about myself, I just want to do the right thing by all three of my children. I want to be responsible so I do want to find someone to help control my feelings. Writing this down while I am feeling more positive is a way of almost forcing myself not to go back to the way I was feeling in the winter because I would certainly not have shared any of what I have said tonight back then.
It is late, and we have a big day tomorrow, attending the Inquest for a dear child, who died from the side effects of the same treatment protocol Skye received, and right now, they are still what matter most in our lives.
We do hope you will share our news and be measured in your comments to us! We would not be getting through these times without the love and support shown by so many of you and we need it now, more than ever.
Sally Hall 11.45pm Tuesday 16th July (finished at 2am)