During my pregnancy with Poppy last year I did what most expectant mothers do and sign up for the bounty packs, pampers and every other baby freebie going (hello free samples). I don’t know why I always do this when you can quite easily buy a pack of nappies or cream, yet you go so nuts about getting 1 free don’t you? haha but to me its all part of the fun and anticipation for the arrival.
When I found out she was ill and again that she had full Trisomy 18, I then sought out and searched for forums, groups, support…anyone that knew, that was further along, that had some knowledge and experience with it. I needed help and recognised the people in these groups would be the best source of it because they knew how I felt, what I was thinking and experiencing, why I needed to fight, what I feared and how much it would hurt when I no longer had her.
These decisions were natural ones for me in this pregnancy (just as over eating was) and were both exciting and helpful as well as informative. I never expected though how they would affect me a year down the line when things didn’t pan out how we initially assumed they would. Most mothers wouldn’t either and the biggest consequence you face is from the eating choices you made during pregnancy and how that affects your waistline a year later!
Its been 10 months now since I had Poppy and we lost her all at the same time. I would say I am functioning pretty well. I am enjoying life as best I can but find my grief makes me a little less patient with erm….EVERYONE. Of course it still hurts a lot, breaks my heart if I really ponder on it, makes me feel weird some times, is awkward for some and fills me with deep and unanswerable questions, but there are days when the choices I made back in pregnancy come back to me and prick me just a little bit more.
Sometimes when I turn on FB there on my feed will be a baby with T18 and a caption saying something like “6 months and still going strong”, “14 months and full of life” – It makes me happy to see them proving Drs wrong everyday and that these parents have been blessed with all of this time, but of course it makes me sad that that wasn’t Poppy. It makes me feel a little jealous some days that they get their babies and I didn’t. Their features are so similar to hers were, their beauty shines out to me and I wish, oh I wish that she was them, that I knew her eye colour, saw her smile, felt the warmth of her skin and was able to see the curiosity of her nature. I wish that she hadn’t have been so sick, that she would have had a chance. I could delete the group of course and therefore protect myself but I don’t, because whilst its sad it is also a source of support still for me and from me (for newly bereaved parents) and I deep down love to see these babies surviving…it restores my hope from this diagnosis, even if at times it triggers my grief wishing Poppy would have been one of them.
The other day I received a phone call from “Baby and Me” gleefully asking “hows the little one?” (another pregnancy choice biting me in the butt as they say) there were many things that rushed through my mind to respond..the easiest being “dead” but also know the hardest answer for others to digest and bluntness never goes well when sharing this news with others. Why are the calling? why are they asking? why did I sign up to all of this tat? and Why do they not magically know and leave me alone?! “Do you mean the baby we most recently had” I clarified, “errrm yes”…I cut her off “well unfortunately she passed away a couple of days before birth”… “uh uh uh OK IM SORRY ILL UPDATE THE SYSTEM GOODBYE” – Phone hangs up! Riggggghhhhttttt. That wasn’t awkward. I can only imagine what she might have said to her colleagues when that call was so abruptly cut off, but I wonder if she, like others I come across realise that its not their place to feel awkward that my baby died, that her actions reflected many iv’e seen of cutting the convo, speaking really fast and getting out of it as quick as they can. I still cannot understand why my grief, my loss, my heart ache turns into my reassuring others that “its okay” (its not but that’s what they want to hear) and me apologising for stating a fact of my life and sharing a line or 2 from its chapter. Why is sharing my daughter so uncomfortable? because she’s dead?
She is but she is mine, I held her, birthed her and she was alive for just shy of 40 weeks, but yeah she never lived here in our world, most people never saw her let alone held her but just because that didn’t happen doesn’t mean her existence is any less significant. I didn’t see you go on holiday so should I not ask you about it or assume it didn’t really happen? that’s ridiculous isn’t it? So is assuming less of something that is such a real tangible part of our life. I don’t know if baby loss will ever not be awkward or a hushed topic. People are so eager to talk about birth as it is such a natural part of life, but to me so is death, yet people rarely will talk of death. Some births unfortunately birth the baby into death, there are no chapters to life in between but there are always things to say, memories to share, life to be remembered.
There are consequences to choices we cannot foresee but we live with our decisions and should not regret them as they were right to us at the time. We can learn from them though and as a result of this experience I perhaps won’t be so eager with nappy samples in the future because pregnancy is more fragile and to me never set in stone now, but then again I never imagined at 16 weeks that 10 months after birth I would be telling some stranger my daughter didn’t make it and I hoped that I would be the parent sharing the flourishing Trisomy baby on the group. Its a hard place to be when you look at it like that but it is where I am none the less. We don’t know where life will take us but I know that we are not in control as much as we would hope and therefore things don’t always pan out how we would like. I would have liked a 10 month baby approaching her 1st birthday, receiving another load of freebies (because that’s how I roll) and plastering her baby cuteness on social media, but instead I am a bereaved parent – I am the one in 4,000 that gets a diagnosis of T18 with no one knowing why this would happen, the one in 17 that ends in still birth, the one that creates awkwardness for sharing my story… a different ending to it than what I had imagined naively last year.