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.
On Monday night my friend, Ruth, and I went to the Yeovil SANDS service of remembrance as part of national SANDS week. SANDS is the national charity that carries out amazing work supporting families who have experienced the loss of a baby through still birth or neonatal death.
The service was immensely moving and sad all the same time. Knowing that there are other people walking in your shoes somehow helps you feel a little better, whilst at the same time devastates you because you know their pain. We had time for reflect and Ruth and I lit a candle for Tilly and I wrote her a message.
For me, someone who displays self control and an ability to ‘keep my emotions in check’, occasions like this are an opportunity to let myself be sad, cry a little and reflect. I am person who, in a way, needs permission to cry and I think. with loosing Tilly, it is a little bit about being scared of loosing control. Maybe if I start, I may never stop.
Honestly, how do I feel twelve months on?
It feels a little like I shouldn’t talk about it because I should be okay now, over it, moved on, done with my grief. I don’t like to bring it up because I’m concerned you might think I’m being over dramatic or wallowing in self pity. I don’t want you to think that I’ve ‘failed’ because I’m not actually okay.
You see, it’s like this. I’m not always okay. I try to be okay and I’m making positive plans for the future but, sometimes, life feels like an uphill struggle. I feel exhausted and sometimes I would like someone to give me a day off, a day under the duvet to do what I should have a long time ago, just wallow and feel a little bit of self pity. I think that maybe I’ve not really dealt with my grief, I have done what I always do: I’ve just got on with it. I guess I should talk to someone but I’m not sure who, can a counsellor really relate to what I’ve been through? Friends? Family? GP? I’m not sure. Maybe I don’t need to talk, I just need to know that people are there for me. Sometimes I feel that I can’t bring it up because it feels like I’m the only one who wants to talk about it.
What you want to do if you were me? Talk? Hide? Ignore it?
Maybe next time you see me you’ll just give me a hug. Unchartered waters…
So, it looks like the running is back on and the first goal is the New Forest Marathon in September. Today it was wet and windy and I was feeling more coffee and cake than trainers and open road, but I went. On the days when I don’t fancy it, I think about why I’m doing what I’m doing and I know that once I’ve started I’ll feel loads better. Running gives me some time and space to reflect on what’s happened and it allows me time to work through my feelings in a space of my own. That said, sometimes I don’t think about anything at all, other than running.
You could always join me, there is also a New Forest Half Marathon. Try it…you might like it!
Sometimes is easy for me to think that everyone else has forgoten about Tilly, and I sometimes think that perhaps Russ never gives her a second thought. This weekend I have spent catching up with friends and family who I don’t see often, and I have discovered that its simply not the case. I think that in my heart, I know that it’s not really the case but sometimes I can still feel very isolated.
The more I talk to people, the more I realise that they are more worried about upsetting me than anything else or they are concerned about being upset themselves and then my being concerned about them. And that was something I noticed in the first few months after loosing Tilly, if I told someone what had happened, I often ended up apologising for upsetting them! So many people walking on egg shells around me, and me walking on egg shells around other people, what a strange nationality we are. Consider those nationalities that openly display their grief publicly and then consider me, an English girl, apologising because my baby had died. I think we could learn a great deal from other nations. And, do you know what, sometimes it okay if the you cry because I need someone to cry with. Oh, and if you have wine and chocolate, all the better!
I have passed some big mile stones lately and Russ and I are making some big decisions about our future. We can never have our baby girl back and we are now really seriously considering where this leaves us. Darcy is off to school in September and it will be then that I think I will feel that gaping hole that has been left in my heart open up once again and so as I move forward I am deciding what my future holds…
I remember it clearly, it was about half past five on Monday the 23rd of April. We had spent the day with Tilly, in a side room off of the main ward. Darcy had painted her hands and feet and we’d done some moulds of her tiny toes. The Chaplin had come to bless her. Then Mum & Dad had taken Darcy back home. The consultant came in, with Liz the nurse and I can still see it now. He asked “are you ready?”. Talk about a million dollar question, are you ready to say goodbye to this tiny bundle that you nurtured for nine months? Are you ready to go home without your baby? Are you ready to tell Darcy that her baby sister is never coming home? Are you ready to live you life in a way that you never imagined? We knew there was only one answer and that was yes. We knew that Tilly was only going to be with us for a short time, I can’t really pinpoint the moment when we knew but by the time it came for her treatment to be withdrawn we knew it was the only possible outcome. My heart was broken.
Will it ever mend? Not completely. There will always be a bit of it that Tilly took with her, when she finally stopped breathing, just after midnight on the 24th. One year ago today. Will I let it cast a shadow over my life? I hope not, I hope that I can live positively in her memory. You never know what’s around the corner. I still hurt. Everyday. And I will always think of her, and how she might be, of how Darcy is missing out on her little sister. Despite of that, I will still do the best I can to make both my girls proud of me.
Sometimes I feel lost, like no one else remembers. In my heart, I know you think of me, of my family. So if you do one little thing for us this week, light her a candle and remember Tilly because I am sure she is watching over us.
Well, my leg has let me down and I will not be running next weekend (well not 26 miles anyway). I feel absolutely gutted, it’s so frustrating to get so close and then to be tripped up by such a minor injury. So, I have entered the New Forest Marathon in September and will be dragging a few people along to join me (mostly for the half I think). The good news is that St.George’s are happy to hold my place for next year, so now I’ll have no excuse for not running a sub 4:00!
For me, it has been about so much more than just running the marathon, the date is significant to me. Last year the marathon was the last weekend that Tilly was with us and I remember one of the nurses from the ward, Sophie, running. Running has given me focus and also some quiet reflection time which has been really helpful to me and for the last two weeks I’ve been a bit lost without it.
This week I will be easing myself back into my training, with my goal moved a bit further ahead.
Yesterday’s coffee morning was a fantastic success, although if I’m completely honest I’m not sure I want to see another slice of cake for a very long time. The baking was amazing and people’s generosity overwhelming. We raised £444 which is a brilliant contribution, bringing the total to nearly £6000. Thank you to everyone who has made this possible.
So, this morning I set out to South Petherton in the bright spring(ish) sunshine to join their annual pre London Marathon 22 mile supported run. I got chatting to a lovely lady and off we went, I was feeling good and quietly confident until I pulled my calf at mile 2. I’m not ashamed to say there were a few tears as I called Russ to come and pick me up and hobbled back to the village. My first thought being ‘game over’. However, having iced it and taken some advice I’m hoping that its nothing too drastic and I should be up and running within the week. Please cross your fingers for me.
What my tantrum will be if I get told I can’t run.