No pictures this time, just my thoughts.
I am so angry right now and about so many things. About the health visitor who told me the reason Isi was losing weight when she was a baby was my fault and I (and I quote) needed to feed her properly (I was by the way). About the opthamologist who we were referred to when, at 5 weeks old, we noticed that Isi had nystagmus who told us over several visits it was nothing to worry about and Isi might just need glasses and sit near the front of the class when she went to school. That's it, no investigation as to why (and I have since found out that nystagmus should always, ALWAYS be investigated as one of the main causes is - guess what - a brain tumour). The oncologist who said that Isi's tumour was benign and treatable and there was no reason why she shouldn't live a reasonable lifespan.
But mostly, I'm angry at me because I let her die. I listened to people who I thought know better, I took their word on trust and believed them, and I didn't fight. A mother's love should be fierce and protective and mine wasn't. I let Isi down. I hate myself.
Bex, please don't beat yourself up about Isi's death! We all trust the medical staff to know what they're talking about after all they are the ones who spend years training. Thinking of you xx
ReplyDeleteI stumpled on here from UKS & I feel compelled to write to you. I am so so sorry for your loss. You didn't let Isi down, you weren't that person or persons. You were there for her as her mummy and you did what a mummy does, you loved her with all your heart. She'll be watching over you now and wouldn't want you to be hating yourself. Sending you love and virtual hugs. x
ReplyDeleteI understand... You didnt let her die. It was how it was meant to be and that in itself is the most unfair thing. I pray that in time you will learn to accept that there is a reason this happened, but to be honest, when I lost my baby at almost 5 months into the pregnancy last year and people told me " there is a reason" it just made me (and still does!) more angry. WHAT , pray tell, is the reason a much loved and wanted baby would be taken from a mother that already would sacrifice her life for it and now has empty arms, or a family that is now left with a great big emptiness nothing can fill? What I am trying to say is that there are no answers I have found.. I'm almost at the point where I am accepting that it was meant to be, but for you..you need more time. I pray that you will find peace one day, but please do not think you let her down. Isi was going to go..that was her destiny and nothing anyone could do would have saved her. Find solace in the fact she was lucky to have a mum like you who loved her every single moment she was here and will continue to do so forever. Some children do not get this at all in all their life time. Hang in there..xoxo
ReplyDeleteOh Rebecca please dont beat yourself up about this. As parents we all have to put our trust in the so called experts, you had to take their word, there was nothing else you could have done. Its so unfair for Isi, for you and the family. My heart aches for you. I feel utterly small for moaning about the little things. Know you are always in my thoughts xx
ReplyDeleteRebecca, in life we only can do our best and that's what you did at the time. Don't beat yourself up now. It's a terrible thing that happened to you all, but you need to get peace and stop thinking about what you could have done. Even if you would have done more knowing what you know now, you still would find something else right now that you should have done. Just be kinder to yourself. Isi wouldn't want to see you like this. xxx
ReplyDeleteBex, in the face of a terrible thing, you selflessly lied to Isi to give her hope and support and security, even as your own heart was breaking. If that's not a love that's fierce and protective, the nothing else is even close x
ReplyDeleteHi there Marmite, it's me, Laz, Lazarus = "he who is from the dead but arisen / reborn". I was given this name on Artwanted.com by a friend after I admitted my past as reasons for being there (Heysel & Hillsborough Survivor ) I have grown to like this name, it is so me, a delicate glove that fits neatly over my ever increasingly fragile shell, an apt handle by which to start coversations without fear of "not intorducing myself properly", but most of all it is a tag that allows me freedom to be myself without unravelling the intricately woven fabrics that now hold me together, "I am safe to talk as Laz" .....
ReplyDeleteAnthony Stewart Mottram died in Jersey in 1986 a broken man, he died under a bed in a cold shitty damp bedsit, broken beyond all recognition and comprehensible reason to be so broken, alone beyond imagination, segregated even from myself, such was the damage. The pain I endured was an "inhumane suffering" and was a relentless 24-7 attack until it finally overcame me, a grief so powerful it actually killed me, made my heart stop, made me lose life itself. Thereafter a beautiful serene peace, escape from that which had engulfed me, "a mental torture enduced by severe anguish, lack of ability to understand, and circumstances beyond my control."
There lies the culprit "beyond my control" = "helpless" = "feelings of failure" = "so many questions that would NEVER be answered ... (in my favour)" = "at the mercey of life itself" = "having to trust ... even when my inner senses told me not to" = "being & accepting vulnerability ... at times a helpless child like vulnerability ... Innocence" = "Innocence = to have no prior knowledge of" = "helplessness beyond my ability to neither influence nor control the outcome of something of infinite importance to me and those I love" = "at the mercy of those who exclaim to care, whilst possessing the ability to go home & switch off from caring until the next shift".
Externally, I appear "normal", and to most (even myself) I am normal, but as the Top Specialist who once stated in his medical report of my analysis "I am always going to be vulnerable to new incoming information", he also stated quite emphatically "he will never know normality again and will struggle until deceased". Yet here I am ... "Living Proof that life returns to something of value once we let the pain first arrive, then with healing, subside back to managable levels" :-) The path back to normality Rebecca is 2 pronged, 1)The path we where on before extreme loss OR 2)The path that remains when I learn to embrace my pain & suffering ... because I can :-) I chose the latter because it is me, and because in truth I live in abject fear that I become that which I once was before my own suffering showed me "Humanity Failings". Blame is IMHO THE most over used yet useless word ever invented. There are Circumstances, Consequences of Actions, Deliberate Misleading, Human Failings (which I always forgive ... being 1 myself ... "lest I be judged as I have also judged others")
All of this little "revealing of myself / dropping my guard" Leads to the simple notion that "BLAME is a worthless pursuit". In the abyssal darkness when all light fails to iluminate I am left with FAITH. 1 day after much thought in my darkest of all darknesses I came to realise that "Life is not a question of Faith in the Survival of Mankind, but the Survival of Faith IN Mankind". As you can see now (my head says "Oh Beautiful 1") your quotes when broken into small segments read as the same thing "proportion of blame" :-) Tis not so Rebecca, far from it, for without you in this world, and your voice, I would never have gotten so close to almost knowing Isi, but alas I do not mourn that which almost was, I embrace that which knowing you afforded me, and your blog reads "accurate" to me :-) This is about where I'd expect you to be right now (since you are a remarkable woman of that I'm sure) "bottoming out in the waiting room, the place we all go when awaiting judgement from on high, the judgement of ourselves". I know 110% certain that your own efforts where faultless in their innocence, and that it is only your "real pain" that ails you now :-) Real pain is when we "let go" and "feel". All around you lies support ... you will not fall far. If you should fall through the trapdoor, fear not, my own pains make me an expert in this field, for it is in true darkness I have crafted my skills of sight (now you know why Isi's stone was so important to me :-))
ReplyDeleteI could write 1000 pages for you, 100,000 pages, 1,000,000 pages, but tonight, this outpouring is my best shot at saying "HI" :-) "You are not alone" :-)
Your Quote's
"But mostly, I'm angry at me because I let her die"
NOT TRUE, YOU GAVE IT YOUR BEST SHOT. DESPITE ALL YOUR EFFORTS POOR ISI LOST HER FIGHT.
"I listened to people who I thought know better,"
YES YOU DID, BUT WHAT OTHER OPTIONS WHERE THERE ? IN INNOCENCE WE DO OUR BEST UNTIL WE KNOW BETTER THUS IS THE NATURE OF INNOCENCE. IGNORANCE PLAYED NO PART :-) NONCHALANCE ALSO PLAYED NO PART :-) OTHERS MISJUDGMENT WAS INNOCENT :-)
"I took their word on trust"
THAT'S OK :-) WHAT ALTERNATVIVE WAS THERE ? HINDSIGHT IS A USELESS TOOL JUST LIKE VIDEO CAMERAS THAT RECORD CRIMES, THEY ARE JUST WITNESS TO SOMETHING THAT NEEDS TO BE PREVENTED :-)
"and believed them,"
THAT'S OK :-) WHAT ALTERNATVIVE WAS THERE ?
"and I didn't fight."
WELL REBECCA, IF ISI WAS WITHOUT A FIGHT I'D HATE TO SEE YOU ANGRY & IN FIGHT MODE :-) YOU COURAGE & STRENGTH FLOW EVEN NOW, PERHAPS EVEN MORESO, BUT BE CAREFUL, THE HARDER WE ARE THE HARDER WE FALL (ask me & I'll tell you).
Sometimes we need to accept loss, we need to express our anger at being simple humans and not superhumans, as I once explained to Karen "just because I don't say ow! doesn't mean to say it doesn't hurt." It always hurts, never stops, not for me, and when it sometimes recinds to a low level, I stop functioning, I can no longer peform simple tasks unless life threatening /extreme consequences lie ahead. This is no way to live, it is less than existing, but, "my body lives on, and my wife,son & daughter would rather have my head in a jar to moan at than me not be here, so on I plod ... day to day, hour to hour, minute to minute, always hoping that 1 day it will stop & I will see freedom once more" :-) As I said Rebecca you are not alone lovely, and this outpouring is typical you "honest & selfless" :-) Gotta go, so take care, and sorry if any of this offends / is confusing, but sometimes "when the view from 1 window looks bleak, swap windows and when you look back through your own again the sun will shine once more :-) All the best, yours Anthony aka Laz.