Hear me out.
Living with cystic fibrosis (CF) has taught me many things. To stop me from becoming complacent it keeps on teaching me. Most recently I’ve learnt that, like growing old, parenthood is a privilege and not a right. Following seven years of busting our guts trying conceive, keeping me well enough to keep trying and my third miscarriage earlier this year, we’ve been coming to terms with the fact that Team Lake will be remaining a twosome. And although that makes me sad, it’s not the end of the world. We’ve already been a twosome for 11 years and we are awesome at it.
Even though staying a twosome wasn’t what we were aiming for, it wasn’t unexpected. You might not believe me,but despite the insane ride we’ve been on in our efforts to make another human being, including two cycles of IVF, four embryo transfers, three pregnancies and three miscarriages, I still feel like one of the lucky ones.
We are lucky that we are alive right now. In 2017, we live at a time when medical advances such as assisted contraception and IVF exist. At least we got to try, and at least we got to have hope.
I don’t live in a time when not being able to bear children and provide an heir would have seen me set aside at best, and at worst beheaded. I like to think that women are no longer defined by motherhood (at least by sensible people). That lack of motherhood doesn’t make me less of a women, less of a person, just one who is contributing in different ways.
And it’s not just advances in fertility, but medicine in general that marks me as lucky. The fact that many women like me, who have cystic fibrosis, are now living long enough and well enough that the possibility of pregnancy is even an option.
I am not lucky to have cystic fibrosis, but it does mean I am used to having the odds against me. Back in 1982 my parents were told not to get too attached to me, and sometimes I can barely believe that I have made it to this side of 30, let alone have been able to seriously consider that children could be a part of my future.
Perhaps that has made it easier, at least for me. I’ve never had an all compassing overwhelming desire to be a mother, because I was always led to believe I couldn’t be one.
This doesn’t mean we are not sad or angry, that we are not grieving for the three futures we had a glimpse of. We are. It kills me that we’ll have to endure ‘oh, well, plenty of time for that’ from well-meaning people we barely know for some years yet. Or smug parents telling me ‘well, you don’t really know what love is until you are a parent’ or ‘ you’ll understand when you’re a mother’. (Really? Do people even know how crass that sounds?). Sometimes our grief is so overwhelming it threatens to knock us sideways. but we both know that we can’t do this anymore. I am not sure if I envy or pity those couples who are strong enough to keep rolling the heavily weighted IVF dice, hoping that this time it will work in their favour. My whole life has been a lottery, dominated by statistics and numbers. I had a one in four chance of being born with CF and while life expectancy and median age of death is always changing, it is always there.
So I know when I’ve been beaten. We agreed that we would give it a shot, but not beyond endurance, at the cost of my health, at the cost of us.
Who knows, perhaps we have had a lucky escape? Living with cystic fibrosis is already a bit like raising a child: Unpredictable, costly, time consuming, career shattering, tiring and relentless. It is there with every breath I take, every rise of my chest. There are differences of course, CF doesn’t take a day off, doesn’t go to sleepovers nor can I pay others to babysit CF while I spend quality time with my husband. CF will never leave home, allow us to go on holiday alone or ever become less of a burden. If anything, the very opposite is true.
We are lucky that my specialist cystic fibrosis team at the Royal Brompton Hospital have supported us throughout this long quest for parenthood, working hard to keep me well enough to grab that opportunity. It’s been a close call from the start, a toss-up between two futures. Times my body have forced us to take a break, while panicking that we don’t have the same luxury many other couples have. Time. Always aware that the next infection and drop in lung function could (and did, for a while) could put our dreams of a family on hold instantly, indefinitely. Always preparing myself to hear my consultant say “we don’t think you are well enough to carry on trying for a baby”
Cystic fibrosis also means I am quite used to my body hating me, letting me down. Something it does quite regularly and often with spectacular results. (Our first miscarriage happened on and over my birthday, the second kicked off while at a family party). But even here, I consider myself to be one of the lucky ones. Lucky that I am still here, when friends and others with cystic fibrosis are not. That my CF team were able to say yes, we think you should go for it (even if they did add “as long as you get a bloody move on”) and not, as others have heard “I’m sorry, you are just too sick.” Lucky that despite my CF being able to try was even a choice, not one that all those living with cystic fibrosis get to make. That when I have been unwell, I have mostly been able to claw some ground back, and our supporting cast, our family, friends, colleagues, have been there to get us through.
Lucky that my local Clinical Commissioning Group fund two full rounds of IVF treatment, which meant that our dream of having a family was given a chance and wasn’t unreachable because of cost. Feeling like we had two extra shots, because my CF Team were worried about the risks of having twins would place on my health, we only implanted one at a time, rather than the standard two.
Lucky that my husband and I managed to actually excel at something. With a bit of help we were able to produce an impressive number of high quality embryos, more than we would ever need. And ones that managed to survive the freezing and thawing process, thanks to me developing ovarian hyper stimulation syndrome. I know of couples who only ever got one ticket for IVF lottery, or none at all, either because of funding issues or lack of viable embryos.
But I consider myself luckiest of all in my choice of husband. That the man I love best, who has already sacrificed so much thanks to my crappy disease, still continues to love me in spite of it.