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.

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You’re always with us, so its not really goodbye.

On wednesday we visited the people handling Lilys service. We went to drop off a tiny bunny teddy and some photos we had writte messages on. We took them through to a small room where she was in her small sealed casket. As soon as i saw it i broke down into tears. The box was beatiful with her full name/birthday and a message saying ‘always loved’ on a plaque on top. It was really moving how dignified she had been treated. We spoke to her for quite some time, reading out the messages we had written on the back of the photos. Whilst i cried for a while, afterwards i started to feel some sense of peace. It was also nice to say ‘see you tomorrow’ and not goodbye again.

for the first time when we got home i was able to look at some things, which had previously made me cry, and smile.. it was a big change to start to feel peace. It had also been great to be near our little girl after so many weeks.

yesterday was the day of the service. Shortly before the car arrived to take us to the crematorium i was feeling very nervous..as if she was watching, a huge sun beam started to shine through the lounge window lighting up the house. It made me feel a lot better. When the car arrived i got in and sat next to ger casket and started to cry. I got to carry her in whilst my partner carried flowers for her. We walked in listening to ‘Birdy – wings’. We stood at the stop of the chappel with her casket just crying for most of the song. Then we brought those with us close (her mom and my closest friend) and did some small readings. I spoke about how we wanted to remember her with a smile and about how much she had made us giggle in her ultrasounds by being so silly. I read one of the last parts of ‘the little prince’ which talks about remembering. After this we asked to be alone with her casket. We spoke to her more and started to cry… then another sun beam came through the windows and shone right on her casket. Again, it was ger there with us! We exited the chappel listening to ‘mumford and sons – after the storm’, crying more tears.

when we got home i agaun started to feel a sense of peace. Not long after we arrived, our rememerance trinkets arrived (a necklaces for my OH and bracelet for me), they had her little hand and footprints in them. Our promise is to keep her memory as something that makes us smile and gives us hope as we move forwards in life. This time it didnt really feel like goodbye, as, to be honest, she is always here in our hearts.