Bedside manner

Throughout our journey we have encountered examples of good and bad care, sadly we’ve had more of the latter. There have been several occcasions where we felt like we were on a conveyer belt, people just hurrying us along to the next person. There were a few who took the time to look us in the eye and feel what we were feeling.. sadly our consultant is not one of them. Recently we had a meeting with her where we asked to try different options to see if they might help – everyone of them was shot down. Now, thats not nessecarily bad care if it truly wont help, but it was like talking to a brick wall ‘no, i dont see the point’ etc, the same thing could have been said with a much kinder manner – especially given what we’ve been through. My (nearly)Wife is the brains of the outfit and asked her GP to transfer us to Tommys. This is a charity clinic which specialises in this kind of thing, and we had our first meeting with them this week. Well, what im confused out it is how our consultant shot down several things they offered off the bat! One came with a disclaimer ‘it may not help, but it wont do any harm’ – actually it will help, because it will let us think WE ARE DOING SOMETHING. After this we met one of the Tommys nurses who was so lovely, she listened to out story and took the time to emphasise. Its been three weeks since we saw our consultant, they were asked to send us our results from any tests and weve had and nothing has arrived yet, its been just over three days since tommys and theyve already arranged a second appointment! 

I guess what frustrates me is that you can be as clinically skilled as you want, but if you cant show empathy for this kind of thing then no amount of skill is going to help.

Two weeks.

Today marks two weeks since Lily came into the world asleep. It feels like loger and no time at all. Today i finished tidying up our spare room which would have become her bedroom. My partner also read a poem which we will use at her service which (no sock here) reduced me to tears. I’ve joined the Sands forum to see what it has to offer, it will be good to connect with other people who are going through/have been through this. Yesterday my closest friend said they could attend Lilys service (none of my close family can) without any hesitation, which also reduced me to tears but a mixed one – the lack of hesistation was really nice to know that people are there, no questions asked, if i need them. The cats are still goung crazy, something we say is down to our cheeky fairy Lily making them go loopy! Its a lot of things happening..

but, damn, it still bloody hurts.

waiting.

We have a rough idea that the service will be about a week and a half so long as the hospital have released Lily by then. It feels like a small slice of forever. Im feeling myself becoming slightly anxious at times, im not sure if its due to the wait until then.

i cant possibly put into words how much i miss our little girl.. how much i want to hold her little hands again. The cold reality is that i never will. All i can do is keep her in my thoughts as a cheeky fairy causing mischief! Her story was cut short so we will write it for her. But still, nothing will heal how much i want my little girl to still be alive. I didnt even realise how much i loved her until i had to think about saying goodbye.

i think my other halfs mom is flying over to attend the service, which is nice  as my immediate family are closer but cant attend.. though we arent even sure if we want it to just be us or not.

i cried earlier and still feel exhausted. But on a positive – no work tomorrow! So at last i can sleep and hope in the dreams i can see our little girl again.

exhaustion

I know i have commented on this before, but wow.. grief is so very tiring. When ive been crying or upset i feel tired like i worked a long shift.but then its more mental tiredness.. after that is difficult to get upset for a while. I just feel so drained that i dont feel anything for a while. Oddly these can be something that adds clarity to thought.. the usual thought its how if someone was telling me that what weve been through i would be thinking ‘fucking hell, life give them a damn break’

One week later

i can’t believe its already been a week since out little one came into the world asleep. This has possibly been the longest and shortest week of my life.. its so very strange how time changes so much with how you are feeling. A week ago we were wiping away tears and waiting to meet our tiny one for the first time and now we are sat at home on the sofa watching Tv…after some tears. The onset of normality after something so tragic is a really really strange feeling… the pain is still there but its moved from someone ripping my heart apart to emptiness and missing her so much.. its more like a constant melancholy. But that said, we’ve still managed to make each other laugh and giggling at times, something we have both felt guilty about on separate occasions – which is really silly as we know Lily would have wanted us to rejoice in the fact that she happened and take happiness ans strength from that.
Tomorrow i go back to work which i’m not really looking forwards to, but if i put it off i will only feel worse. That’s not to say anything bad about what i do or the people i work with (well except one who is really annoying me, so i will have to try my best not to tell them to f**k off as i really do need this job). I’m most worried about leaving my other-half with our crazy kittens.. though they should take good care of her.

Also tomorrow we have a meeting with the people who will be handling the cremation, something which will no doubt break our hearts yet again. And we haven’t yet heard from the hospital as to when they have completed their checks on Lily.. ┬áit sounded like there was a bit of a hold up, though she is only having external checks so hopefully we will hear something at the start of next week.

next week also brings up an old pain as valentines day marks one year since we lost our first little light..

One of the ways we are finding peace at the moment is to think of our little Lily as a cheeky fairy who is always around us causing mischief at filling our hearts with smiles and laughter. Its how we have chosen to keep her with us. Neither of us are religious but it is nice to think that she is with her great-grandmother, our other little light and others we know who were lost too early. In the most basic of ways to look at things we know she felt no pain and went when it was best for her, on her terms. We knew there could be complications later on and that she probably wouldn’t survive until term, and if she did it probably wouldn’t be for very long.. So it was a small mercy that she saved pain for herself and months of worry for us. but even with that all that said… it still hurts because she was, is and always will be our little girl.

just to be clear

For anyone grieving over anything you are still allowed to find moments of normality. You are still allowed to find things that make you smile. Even with the greatest of losses you are not expected to cry non-stop. Cry, grieve, scream at life for being a shit but Never feel like you have to fit into an expectation of grief.