More thoughts… and an update on the ugly.
When I gave up my son to the unforgiving universe, I thought that I had paid whatever penance I needed to, that whatever wrong I had done in my life had been forgiven, when I let him go.
These are strong words, my friends and if they are too painful or heavy then, please don’t read. I need to write my thoughts down and push them out into the night.
I am not writing for sympathy. I don’t need help. I need to work through all of this.
I am writing so that I can process my feelings…
When William died, I wanted to die.
I wanted it to be me.
I literally could not see past myself.
I didn’t want to see the other beautiful children who were waiting for me to pull myself together. Of course, kids have a way of pulling you back to the present. Their life force buoying me up when I felt like sinking.
For almost four years I have been trying to get a grasp on the grief I feel for a baby who is not here, who I never really had the time to get to know. I failed dismally, of course and so I went to the medical profession for help. My GP put me on antidepressants after I lost the plot last October and I started to see a psychiatrist.
The GP moved and the psychiatrist sucked.
She wasn’t interested in teasing out the knots of grief, that had gone unattented for so long. Her answer to my weeping was to push the medication up further. All my own attempts at dealing with having William’s blood on my hands had not worked as they relied on my obstetrician to help me.
So.
Now I am off the medication. For whatever reason, it doesn’t really matter.
Have been for over a week and I am not feeling very good. Somedays, yes, I will admit it, I have been feeling… ’suicidal ideation’ creeping back into my being. I don’t like that feeling either.
I have cried buckets. I’m not ashamed to say that.
I’ve cried because;
I cannot trust any of the doctors and
I do not trust my own self.
This is so complex for me. It has everything to do with William and the choices I made for him. In his birth and in his death.
When you have to turn off the ventilator that is sustaining your son’s life, it stuffs up your own for what seems like forever and it becomes part of who you are. Seeps into your everyday.
Now I am second guessing myself with Ivy.
I hate it.
I want to be confident in her care. I want that confidence who whispers in my ear that my gut feelings are right, that I am doing everything I can for my girl and what I am doing, is great.
I want to jump up and down and tell these doctors to do a better job.
I am her mother, for goodness sake.
But I can’t.
The doctor’s don’t help, with their mistrust but when it comes down to it, it’s me who doesn’t believe me.
That little voice, ever steadying, says, wait, maybe you are wrong. Maybe what you want for her is the wrong thing. Maybe your gut feelings are wrong.
Yesterday was a low point.
Lower than last week. Whether it was because the last of the crazy pills had left my system or because I felt as though we were not getting anywhere fast and I finally lost the plot or both. I was a howling mess of self pity.
Today is a new day though and the sun is out.
So what happened yesterday?
I got in the bus with the toddlers.
On the way to the appointment, Noah puked up his breakfast in a fetta - type pile of cark sicky goodness. Word of warning, my dear friends, do not feed your child seed bread toast after a nilla shakey and then pile him in the car for an hour long drive. This is the third time in as many months of early morning appointments that Noah has protested. No more sitting up the back of the bus for that little guy.
I kept on driving though until we found a parking spot.
I changed the boy and stripped the carseat… or was that stripped the boy and changed the carseat???
We got there and waited.
About an hour later the paed turned up and we were invited into the hornets nest of dermatologists.
Ivy had a small erruption of blisters on her bottom, which I exposed to… ooh, lets say, half a dozen derm residents and registrars, two medical students, the paed and the head honcho, King DermGuy.
They bantered around what is was, what it could be, what they would do.
Hello?!?!?!?!
Parent here.
Talk here!
But No.
After a lengthy discussion, that didn’t involve me at all and only briefly involved Ivy’s bum, it was decided that they would do nothing.
Yep, you heard right.
Nu - uh - uthin’.
Let’s pause here briefly to go over the short history leading up to this appointment…
1. The paed would not alter Ivy’s meds without us seeing this guy.
2. We were told that once we had seen this doctor, a decision would be made and Ivy would be treated accordingly.
3. Seeing this guy is easier said than done.
It was decided that we would keep reducing the prednisone and induce a blister attack! (Because the blisters that were already there were not acute enough). When she was all blistered up and in pain they would do another biopsy.
Huh?
I guess it’s a decision.
David and I have been scratching our heads and wondering why.
The last biopsy she had on her bottom was on Christmas Eve. They said it was perfect and that we could not ask for better.
The last biopsy she had has left a giant keloid scar.
The last biopsy gave us a diagnosis of pemphigus.
Why is all of that not good enough now?????
So here we are, waiting for our baby to blister and it feels wrong, so very wrong.
So there it is. The ugly just got uglier.
Oh sweetie. Oh sweetie.
Do they not realise they are actually dealing with REAL people who have to suffer through the pain, watch their daughter suffer through the pain and then inflict more pain?
Stupid stupid doctors.
Oh and lots and lots of hugs for you. It isn’t easy for you right now and I am sorry.
I really wish I knew what to say but I don’t. I’ll say a prayer for you though.
I cannot say anything because I feel my words would be empty. But you are in my thoughts, and they are never empty.
For the first time in my life I’m struck dumb.
Oh Sweety.. I feel pretty helpless not being able to help you.. I cant even find the right words to say .
I am thinking of you … (((hugs)))
Kim
:) 
I’m sorry…what more can I say. I will be thinking of you, and praying….
Tiff, I can’t articulate how I feel about those Doctors - incredible ! b@stards!
I am sending you massive hugs my friend … I should have come up this week.
You are in my thoughts.
How frustrating for you all round. I too don’t know what to say except that I feel for you and fingers crossed that these doctors get their act together real soon.
Having worked in the medical profession all my working life I have to say I am disgusted at the way you and Ivy have been treated, not just in this instance but ever since I started reading your blog. Unfortunately in my experience it is all too common but hopefully not the norm. I don’t know what it will take to change but I don’t think its too much to ask for a little respect, compassion and good communication from individuals who are supposed to be intelligent and in their chosen profession to ease suffering and not just to line their pockets.
Sorry, not the place to vent my spleen but I truly feel for you and have experienced the run around, the self doubt etc.
From what I have read I believe you to be totally committed to the wellbeing of your children and they are so, so lucky to have you on their side. Trust in your instincts wherever they take you. You are in my thoughts.
How awful. Well and truly put through the wringer, aren’t you guys? It’s hard to comprehend for us, let alone you I’m sure.
Big Hugsxxxx
Oooh!! I HATE those doctors. Don’t they read the records and see that you’ve already been put through so much?? Do they not care that you and Ivy have to suffer AGAIN? Do they not care that the rest of your family is also suffering? I’m outraged! I wish I could help somehow………
Oh crap - I just don’t have words for the utter - oh, I am infuriated for you!!!
I just read about that pemphigus - Gee-Whiz, it sounds bloddy nasty enough for them to take you seriously, surely?
Babe. I don’t know what to say. When I blog about Boo, I am not looking for sympathy or pity, just a sounding board. I think that is what you have done today.
You know we are all there for you. You know we all sit here in frustration with you.
Keep talking. Keep posting. I will keep listening.
Have a pressie for you on my blog too. I hope it encourages you just a little.
((hugs))
You are stronger than I am…I would have scratched their eyes out!!!
It’s hard when you are feeling helpless, I know that feeling well. I do not know the depths of despair you have faced, and are currently facing…but I know the helpless feeling.
I’ll pray for your strength and for the ease of the upcoming events (the blistering, the biopsy, etc). If I could I’d fly my butt around the world and yell at those doctors for you.
*huggles* You ARE doing what you can…just take it one day at a time, one step at a time!!
**Hugs**
Parallel Universe ~ You’ve got it right !!!! Your thoughts are my thoughts !!!
What buggers for poor Ivy. Do the doctors actually know what they are doing??
I have only been reading your blog for a short time and cannot believe how hard the system seems to make it for you guys to help Ivy. It is awful for Ivy, but as a mum it must be a terrible thing for you to have to stand by and see her endure this as well.
((hugs))
You are a strong woman.
You are a sensible carer.
You are a wonderful mother.
Follow your gut instincts.
Put your foot down and refuse another biopsy. They got a perfect one last time, they can’t keep inflicting pain and scars on her just because they can’t pigeon hole her case from a text book.
You have every right to challenge and question their decisions, do not ever let them make you feel like you’re in the wrong - doctors do that to cover up the fact that they don’t have answers.
I’m new here so I don’t yet know the fully story, but my God what a heartbreaking story! I am sorry for your loss, and I can understand how it would make you second-guess everything else. Just know that motherhood is inherently and by nature full of guilt and second-guessing.
While I haven’t lost a child to death, I have lost both of my children’s “innocence” potential. When I started out having my babies, I thought I would bring them up in a certain way, free from too many hardships, full of love and security, stability and peace. It didn’t turn out that way. I had married young and to a man who was abusive. My children are scarred, we are left to take care of ourselves, and we are always struggling, always struggling. I’m never the mom I wanted to be. Our life is so far from what I achingly wish for. Sometimes I can’t bear to look at it all.
I’m sorry for talking about my own situation. I am not trying to deflect from yours. This is just simply to say that life is often exquisitely painful, and we mothers bear so much burden of it in order to try to protect our children. I am sorry for your grief and your doubts. Thank you for sharing this. Thank you for working through it.
I want to thank each and every one of you.
Your comments, your stories, your advice is so precious to me and to David too.
He cannot believe the outpouring of care that comes our way. We are truly grateful.