well who gets pregnant just before a worldwide pandemic?! .. that would be me!
it honestly makes me laugh now thinking about it, because since when do we ever do things by halves?! But this is something we could never have predicated, it’s been one of those things that even though it’s hard, it’s out of our hands just like every other women pregnant during this time going to scans etc on your own isn’t great but fingers crossed things settle down soon! Although I can’t see it being in time for this little ones arrival now.
This pregnancy has been different in many ways, it’s almost the exact same time four years ago that I was this pregnant with Stanley and back then we didn’t know any of what was lying ahead, little did we know that in a few short weeks we would get a diagnosis that would change our lives forever.
I find myself every now and again thinking back to those early days after diagnosis and I wish I could have told myself it would be ok, the thoughts of how would life ever be normal again, how would we go outside and not panic about everyone and everything, what Stanley could do and couldn’t, about both him and Alfie missing out of things and the impact that all of that would have.
If only we knew that in fact the best thing we could have ever given the boys was each other, it goes without saying they are the best things that have happened to us, and now living with cf? Well it simply is just our life.
don’t get my wrong of course it has its challenges, but you adapt to life doing things differently, this whole new life becomes part of your routine, I can genuinely say I don’t think of cf every day, of course with every decision you make it’s there in the back of your mind but I think it becomes second nature. I never look at Stanley and see him as a little boy with cf, he’s just our Stan, our baby boy .. he came along when we didn’t even know we needed him, I will forever be grateful for the joy he brings to our life’s, seeing Alfie and Stanley as brothers is my proudest achievement – nothing will ever top it.
and so came the decision of adding to our family.. such a personal decision for anyone without adding a genetic condition into the mix!
It’s something that we spoke about time and time again, whether we were right or wrong for wanting another child, was it a selfish decision?we had Stanley not knowing we were carriers of cystic fibrosis, now we do have that information would people think it was a selfish decision to make?.
everyone will have a opinion, but I think in the end it came down to not worrying about what others would think, others don’t look after our children – we just had to do what was right for us and our family.
for us we live with cf day in day out, we are armed with knowledge we didn’t even know existed this time four years ago, every day we weigh up risks, we change plans, we get up and we work hard to make sure treatments are done to keep Stanley as well as possible, we have spoken with nurses, physios, doctors, genetic councillors, every option – we have been through. as only parents of a child with cf will know, cf can take away so much..
for us we knew we would never regret having another baby and only regret the what if? if we didn’t.
and so here we are, baby number three and our first girl due very shortly! the boys were desperate for a little sister and after ten years it’s still strange to be buying pink! I’ve made them check at every scan! but we are all so excited for this little girl to complete our family.
we knew the risks ( 1 in 4 of baby having cf) and we had accepted that due to all tests being invasive we wouldn’t find out whether she has cystic fibrosis until after she is born, as it wouldn’t have changed our decision whether to continue with the pregnancy or not.
however at a 16 week consultant scan, a NIPT test was offered to us by doctors which involves a simple blood test, all non invasive with no risk to the baby and was over 99% accurate, it’s something we had heard about but we weren’t aware it would be available in our area. after a long week of several phone calls and meetings in person discussing with genetic councillors weighing up all of the pros and cons of finding out during pregnancy, it was agreed we would go ahead with the testing, and so I had blood tests done just before I was 18 weeks gone.
We had to wait just over 2 weeks for the results which we got back in March the day after my 20 week scan .. in all honestly I already knew what the councillor was going to say over the phone. I had told jack I knew even before we had the tests done.
.. mother’s instinct or just preparing for the worst outcome who knows?
Hearing that news for the second time is no easier, I cried just as I did with Stanley it’s a emotion that’s hard to explain, I don’t know if it’s relief someone confirming what you already deep down knew, or the fact that it’s confirmed – it’s real.
our little girl will have cystic fibrosis.
I’m not going to say it’s all fine, of course it was horrible news, but what I will say is that this time I don’t have them thoughts of how will we do this, or how will life be normal again? because this time we have experience on our sides that we didn’t have before, the practical side we already know what we are doing, we don’t have to take information on how to do medicines and physios and learn about viruses and germs as we did before – we know that she will fit in just fine.
sometimes in life it’s hard not to see things as a test and think why us? of course down days are normal we’re only human..
but instead I honestly now think how lucky are we? that in a few weeks time we will have 3 beautiful babies that some people never get the chance to have and yes it’s not without it’s challenges, it’s not always easy and we’ve never made it out to be, cf is hard, it’s relentless, there are no days off.. but it’s so worth it because cf never takes away being there mum, the way Stanley pulls faces that you just can’t help smiling at, the way that Alfie tries so hard not to show on his face when he’s absolutely chuffed with something, the way the boys say I love you to each other every day and are just happy in each other’s company.. they are truly best friends.
all of the memories we have just from them being in our life’s are things that can’t ever be replaced or taken away by cf.
Sometimes it’s so easy to see past the little things, but it’s those little things that make it all worth it.
and so as we’re about to start this journey again, and all the unknowns that come with it, one thing I do know is that I’m so excited to see the 3 of them together, our little girl doesn’t know how lucky she is yet to have two big brothers who love her so much already.
not long to go now and our family will be truly complete. ❤️