After my tumour diagnosis, I remember talking to my psychologist on the subject of having children. Just after my radiotherapy ended, I unexpectedly fell pregnant with baby Hope. I lost the pregnancy and it was absolutely devastating. Some months later I found myself speaking to my psychologist about the future…
We all die. News of my death is just a bit more in hand than others. And until I die, I’ll keep on living. I certainly won’t hide the realities of life and death from my son.
I have been told to expect my tumour to return. My oncologist and neurosurgeon are expecting it to come back. That is the truth of the matter, despite how many people try to put on some Pollyanna facade about it and shy away from it. This is my reality.
So I found myself talking to my psychologist and saying that I would have so much love to give a child, as would my husband. We have so many shared values and our own individual talents, skills, inspirations and life experiences to nurture and share with a child…
“But”, I said. “It would be wrong of me to try to have a child knowing what I know. This time I got lucky – my surgery should have disabled me far more than it did and even then, look at me now. Moreover, news of my death is in hand more than it was before. How selfish would it be for me to have a child and die?”.
She listened. And reflected back to me all that I had said.
Now, she usually does this magical thing where somehow she has a conversation but doesn’t say much at all – she is indeed, a special person. However on this occasion, she said to me “how sad it would be that you have all of this to give and you choose not to have a child. And also, what if you find yourself living far longer than you expected?”.
Other people with life changing diagnoses and disabilities have babies; you can too.
Our conversation went on and she pointed out that there are people born with disabilities and life limiting illnesses, “do you think they are lesser parents? Do you think they shouldn’t have children?”. Of course, my answer was no…
And so the seed was planted in my mind that 1. I am worthy of my existence and fully embodying my life regardless of my diagnosis and 2. Might I have a baby?
Fast forward sometime later and between my psychologist and Instagram Fam, I came to realise that this life of mine was there for the taking. I saw everything I have to offer and share, and everything my husband and I could do together and individually.
After much discussion and tears and acceptance, we decided that yes, we would try to get pregnant but who knew if we’d need to use our frozen embryos?
Eventually we were recommended to use our embryos but decided we didn’t want any more medical interventions; I was done with hospitals! We decided that was that; we had some other stresses at the time and decided we would stop trying and use protection in case spontaneous conception was actually possible. But I think by the time we came to that decision, I was already – unknowingly – pregnant…
How amazing it was to discover a short while later that I was pregnant. After so much hardship and heartache, here we were!
My pregnancy was to be a difficult and traumatic one with my medical history only compounding that. I had Hyperemesis Gravidarum which was horrific for me and my husband.
I’m actually trained as a doula so I knew that in your maternity care, “you’re not allowed” is absolute bullshit. And I knew that I had autonomy over my body and baby but by the end of my pregnancy I had no fight left in me and ended up having a medically unnecessary and traumatic caesarean birth.
I’m grateful to have had the support of my own doula though because she bore witness to my experience. She was there for me and championed my autonomy and my reality when no one else would. Of course, I recommend anyone have the support of a doula but especially if you’ve had complex medical experiences; they can help you navigate “high risk” or “red” pathways and help you feel safer and supported throughout your pregnancy, no matter what that or your birth looks like.
I wrote this, not to bang my drum about doulas as I always do but to remind anyone reading not to let society’s expectations of what a family looks like drag you down; if you have a chronic condition or a life changing diagnosis, you do you and what’s right for you. Don’t base it on other people’s expectations or judgements of what is right and wrong. Other people with life changing diagnoses and disabilities have babies; you can too.
He’ll feel my love through every fibre of his being, infused in his bones and woven right into his little soul. We’ll live now and that will mean everything.
For me, ultimately, it came down to this one quote from Maggie Keswick-Jencks – founder of Maggie’s Centres – no one “should lose the joy of living in the fear of dying.”
We all die. News of my death is just a bit more in hand than others. And until I die, I’ll keep on living. I certainly won’t hide the realities of life and death from my son. We will live each of our moments purposefully, joyfully, unashamedly and fully. He’ll feel my love through every fibre of his being, infused in his bones and woven right into his little soul. We’ll live now and that will mean everything.
If you are pregnant and find yourself being told what you are and aren’t allowed to do, check out Birth Rights UK for information and support. The Association for Improvements in the Maternity Services is also an excellent resource and they can provide you with support. They have a small book called Am I Allowed? which I highly recommend to any pregnant person, no matter your health status.
Bridget is a doula living in North East Scotland with her husband, son and two cats. In 2015, aged 23, she had her grade 4 medulloblastoma resected. She provides support to anyone pregnant and their families; and can do so remotely or in-person. She has a particular interest in birth rights and postnatal care.
Follow her on Instagram and Facebook. For her blog, birth doula or pregnancy support bookings, you can visit her website. She also fundraises for The Brain Tumour Charity, click here to donate to The Bloom Fund.