Not much to say here but yesterday I was given one of those moments of clarity that can only come from and eight year old. I was at Mum’s with my niece, Daisy, and Darcy and the girls were looking at the photos on the wall when Daisy asked who was in the picture with Darcy. What unfolded was one of those candid conversations, the ones that adults avoid at all costs. Darcy said it was her sister Tilly, and Daisy looks a bit puzzled and asked where she was was. So Darcy told her. She is Dead. Daisy asked why she died, and I explained that she had a very poorly brain. Then she asked if I we had her with us for just one day and when I said that it was for four weeks she simply said ” I suppose that’s nice, that you got to meet her, isn’t it?”. And do you know what? She was right.
It’s been a long time since I’ve written anything but I’m almost at the end of my first year as a student midwife. It has been a brilliant but challenging year, in many ways. Every day dealing with women and families looking forward to the keenly anticipated delivery date or settling in at home with a new baby (or two)! On many occasions I’ve thought of Tilly and as I move on to year two I know this will happen more and more as I deal with women who have more complicated pregnancies. Perhaps I will come back to my blog, putting my feelings down, not pushing them away. Recognising that it’s okay to find things tough, that even though I feel nothing but joy for a new family, sometimes my heart still breaks. Knowing that it’s okay to feel someone’s pain when their journey doesn’t turn out how they had dreamed for so many months, but knowing that I’m doing everything I can to make it as bearable as possible. As a family we’ve come a long way in nearly three and a half years, I live my life as a tribute to Tilly, not in the shadow of her death.
It’s been several months since I have ‘blogged’ but this week seemed an appropriate time to start again. This week I checked the total amount raised for St.George’s and it was an amazing £7,788.44! This isn’t something I say very often, but I’m so proud of what I achieved in the aftermath and devastation that was the loss of our beautiful girl. I couldn’t have done it without the support of friends and family, too numerous to mention but hopefully you all know who you are. Yesterday I accepted a place in the Brighton Marathon! Watch this space for some more details but I will be running for Henry Grice, a brave little boy who has recently been diagnosed with Diabetes. He would like to raise some money for the diabetes charity JDRF, who have given him and his family lots of support since his diagnosis.
Also this week I have enrolled on my Midwifery degree at UWE. I’ve already met lots of lovely, like minded ladies and can’t wait to get stuck in. I am going to blog as I start my journey into midwifery. I realise that at times it’s going to be challenging and, emotionally, I know there will be hurdles to get over but I am certain that I want to help women on their own personal journeys and make a real difference to them and their families. I will decided whether to use this blog to continue or whether to start a new one (the running student midwife!?), maybe you could give me your thoughts.
What a day it was yesterday, a day I’ve been waiting (and working) for since Tilly was in St.George’s PICU and one of the nurses ran the London marathon the Sunday before she died.
It was an emotional day for me but what an incredible experience. As I approached Tower Bridge I was overwhelmed with the occasion and a sense of ‘I’m actually running the London Marathon’. The sun was out and there were runners as far as I could see. I finished in a time of 4.06.46, I was really pleased.
Over the last two years I have had support from my family, people who I’ve know for many years, from people I only met when I moved to Surrey, from people I’ve just met and from people who I’ve never even met! Amazing and humbling. And running yesterday, you realise that so many people have their own story and their own reasons for running, the challenge isn’t just physical, so many people have travelled huge journey’s to complete 26.2. For me running has also really helped to find some perspective and to find a positive way forward in adversity. Being able to do something positive has without a doubt being fundamental to my grieving process and helped me move forward. Without the support of friends and family I’m not sure I would have got to where I am with the outlook that I have. Be sure that the human spirit is an incredible thing and you can always achieve more than you will every imagine.
Would I do another one….?
Last Saturday, the 22nd of March, Tilly should have been two. She should have been toddling around, pinching Darcy’s toys, starting to chat, experiencing the seaside, swimming and the terrible twos. Instead? She is just a memory.
I have not been writing much on here, I know that not many people read it but sometimes it helps me to write things down. Maybe one day, someone will stumble upon it and it will help them too.
You see, the thing about the second birthday is that people don’t remember, because there’s no party, no cake, no presents. Just a sense of what if. And that’s sort of okay because if you don’t remind me, I won’t remember your birthday so, I don’t blame people for not realising. Yet it’s confusing for me because, despite that, it still upsets me, I want people to remember that I still miss her everyday. Sometimes I just need a hug.
On her birthday, we went with some family and friends to the seaside for a beach BBQ and fish and chips. It was freezing, and it felt like the craziest place to be, but it was lovely to share the day with people and not be sad. To remember the day we had Tilly, before we realised our world was about to come crashing down. A lovely thing happened, our friends son asked us what we would buy Tilly if she was here. It didn’t upset, it made me smile. He wasn’t afraid of upsetting me, he just wondered about Tilly, he wasn’t afraid to ask, because kids aren’t. It made my day. A note to his Dad: next year, I promised we can go somewhere warmer.
It’s been ages since I blogged, but that doesn’t mean I don’t think about Tilly. I do. Every single day. As we celebrated Christmas she was on my mind a lot, with tears coming at unexpected moments. I try not to dwell over Christmas because I want it to be a special time for Darcy. We decorated a tree together and took it out to the church and we went to the carol service there. Some time to reflect and remember, and wonder what might have been.
So, this year I will blog more regularly, keeping news of my training (for marathon attempt number three) and news of my journey into midwifery and hopefully a bit more fundraising!
Not so far no. Last month we met with a genetics consultant to discuss the diagnostics that were carried out with Tilly’s DNA after her death. Both Russ and I had submitted blood test because Tilly had shown some abnormal chromosome material. This proved to be inconclusive as I displayed the same abnormality with no physical presentation. So, where from here? Is it really worth knowing? Does it even matter?
There is still a small DNA sample of Tilly’s at St.Georges. When the geneticist told me this it felt very strange, imagining that there is still a tiny bit of her existing, sat in a vial in a lab in tooting. I know it’s nothing, it’s not really her, but still…
The sample will be sent to Great Ormond Street hospital where they have recently developed a panel test. This means that, rather than testing individual chromosomes that are identified as been responsible for seizures in babies, they can test the panel of chromosomes that are known to cause seizures. It may take up to a year to get the results. The Doctor was incredible sensitive (which is lovely, but can bring on tears) and apologetic for the poor follow up we have received and incredulous when I told her about receiving Tilly ‘s heal prick test results shortly after her first birthday.
I was also concerned that we might end up feeling that we were wasting valuable time and resources by persuing this but Dr Smithson made us feel that it was completely normal to want to know why Tilly had developed this condition. For us, it is not about having another child. We have decided that this is not something we want to do. Not an easy decision, and sometimes I feel very much that I want another baby, but it is not the right thing for our family. However, I feel that if Russ’ daughter, Laura, or Darcy decide to have children it would give us piece of mind to know that there is no underlying medical condition. Imagine if this happened to a grandchild and knowing you could have found out, surely this is reason enough.
So as we start the next stage in our lives, for Darcy that’s starting school, for Russ it will be finding a job that will bring him back to the South West. And for me? For me it is starting college and doing an Access course that will (hopefully) get me on to a midwifery degree course next year. I want to use my experience to make a real difference to other mums. I know how terrifying it is when your baby is taken away, when nobody can tell you what is wrong. I understand the all consuming grief of loosing that precious baby forever. And as devastating as it has been, I know that you can come out the other side.
This week has been a lovely week, lots of time and adventures with friends. Play dates, water fights and Gromit hunting to name a few. This week I’ve realised something. I realised that maybe Darcy misses Tilly more than we realise.
Earlier in the week Darcy told me she didn’t want to play with her toys, it wasn’t fun because she had no one to play with. Even though Tilly would have only been about 16 months old, when I see Darcy playing with friend’s children I realise how she is missing a playmate as well as a sister. Perhaps mine isn’t the only heart with a gap…
On Wednesday Darcy had a little girl to play, a friend from her preschool. Darcy took her friend inside while her Mum and I were chatting, and when we went inside a few minutes later Darcy was showing her friend Tilly’s photo album. I walk in to hear Darcy asking ‘does it make you sad?’ And the response ‘no’. Maybe Darcy’s first lesson than not everyone feels the same way about things. It broke my heart in one sense but on the other hand, I love that Darcy remembers Tilly and wants to share her memory.
Again today, Darcy showing another friend what is inside Tilly’s memory box. She bought down Tilly’s baby grow and comforter and said she wanted them for her dolly. Later I found Tilly’s cardigan in Darcy’s room. I have to remind myself not to get cross with her. The panic that I get that something will get lost of spoiled. I explain to Darcy that we have to be careful because these are the only things we will ever have of Tilly’s, all her memories in one small box. I tell Darcy we have to treasure Tilly’s special things because they are the only memories we have, where as Darcy, you will create a whole lifetime of memories and things to treasure.
Darcy, sweetheart, share your memories with all your friends because Tilly will be in you heart forever. This week, I think she really has begun to notice that lots of her friends have brothers or sisters but she does not, not in the same sense. I told a friends daughter that she could show Darcy how to be good as she doesn’t have a sister to learn from and she asked ‘ how will she learn?’.
As I begin to enjoy the summer weather there is a bitter sweetness that won’t leave me. I noticed it a few weeks ago when I took Darcy to Lyme Regis, just the two of us. Darcy found a friend, as she always does where ever we go, and was happily playing in the waves. Darcy’s new friend had a baby brother, maybe 13 months old who was sat on the sand and enjoying all the new and exciting sensations that a first trip to the beach brings. Then I felt it. The acute sense of loss. The feeling that is so painful that it’s as if it was just yesterday that we lost Tilly. You see, that thing about loosing a baby, the loss of what should have been. At the back of my mind constantly, the feeling of what should be. Would Tilly like the sea? The sand? What would she be doing now? This feeling, I think, will last forever.
This week, a trip to the seaside with friends. A lovely day. Tinged with a little bit of sadness that will go unnoticed. This week though I enjoy sharing the time with a friend and her lovely daughter. Seeing Darcy with her friend, playing in the sand. Knowing that I will make more effort to ensure that Darcy doesn’t miss out on having the company of other children, even if she is missing out on creating memories with her sister.
Please remember, if you know anyone who has lost a baby, a child or anyone close: Sometimes it’s as if it was just yesterday.