A local women’s charity/organisation is running a campaign trying to capture the full spectrum of motherhood from deciding to become a mother through to being a Grandparent. I wanted to join in because it was a good excuse to do some writing and sharing our stories is something I wish we did more. This is what I wrote.
The day we were told that Eilys had Spinal Muscular Atrophy we were also told very vaguely about what would happen if we wanted to have another baby after she died. The enormity of what we were being told was still hanging in the air, we were barely holding ourselves together as they explained how she would decline and die and they were telling us about having another baby. It seemed cruel and heartless. We had various other appointments with different people and it was often a topic of conversation. It was one of those things that I would nod along to, ask the “right” questions but it didn’t seem right to be discussing other babies when we still had Eilys, it felt like they were wishing her away so we could have a “better” one. Me and Joe didn’t really talk about it either because it seemed insensitive.
After Eilys died, the loss ripped a hole in our family and our hearts. The grief was heavy and dull, sometimes it was a physical pain. I think we both knew that we would want to have another baby. I really felt like I needed to have a baby straight away but I wasn’t ready. We knew that the journey to having another baby might be long, hard and painful. Plus, we were emotionally and physically exhausted and needed to spend time healing as a family and looking after Dylan and each other. There was a lot of guilt that we had giving Dylan a sister who he had fallen in love with and then we lost her, it was so unfair to him.
As the months rolled past, we started to heal. We started to navigate around the hole that Eilys had left in our lives. The pain didn’t go away, it didn’t decrease but it became normal. We both started to feel like we wanted to have another baby but it still felt too soon. I didn’t want to leave it too long because I knew that the journey to another baby might take longer and might have a lot of hurdles. Spinal Muscular Atrophy is a genetic condition, both me and Joe are carriers so any baby we had would have a 1 in 4 chance of having SMA type 1 like Eilys did and they would also probably die before they were 2 years old. We were told that they could test a baby to see if they had got SMA when I was 12 weeks pregnant. We had discussed what we would do if any subsequent baby had SMA and we had decided that we wouldn’t be able to continue with the pregnancy and we would choose to terminate the pregnancy. With all this weighing on the decision it was never going to be a simple as “lets get pregnant again”.
So we waited until we were certain. And even then, when the lines of the pregnancy test appeared to confirm that I was in fact pregnant again I wasn’t sure that we had made the right choice, I wasn’t sure that we were ready, I wasn’t sure that I could do it all again, I wasn’t sure that another baby was a good idea… But after the genetic test for SMA came back negative over 7 weeks later most of that worry floated away. As the pregnancy progressed we became more ready and when Evan arrived he healed our hearts and filled us with so much love and happiness. There will always be the hole where Eilys was, which I wasn’t fully expecting but I should have.