There’s something that’s been on my mind for a while now. Probably since Parker was about 6 months old, the want for another baby. I can’t believe how lucky I am to have been able to have Parker at such ease and, although an uneasy pregnancy everything seemed normal and I feel very blessed.
However finding out at 2 weeks old that Parker had Cystic Fibrosis will stick with me forever. It’s a day that I know I just couldn’t do again. So when people ask when’s the next one due? Or similar, the hurt and the upset I feel deep down that I try to never let surface quickly dawns on me. I am strong, or at least I try to be. It’s a topic I barely discuss with anyone apart from my husband, because it’s hard.
Two people with Cystic Fibrosis should never meet due to the risk of cross infection, and that could seriously affect the other person. CF is such a complex and individual condition that I don’t even completely understand it.
After speaking to our team at our CF clinic, they explained that they have numerous family’s that have multiple children with CF and that the benefits of Parker having a sibling outweigh the risks of having two children in the same house with CF. We’ve also been referred to a genetics team, this petrifies me. Not only because it goes against everything we know about CF, but because I don’t know how I could cope if I had to sit there and be told that heartbreaking news again. We have a 1 in 4 chance of having another child with CF. That’s a gamble that I’m too scared to take.
How can I risk Parkers health? How can I risk another little one with CF’s health because of my want to have a child again? Am I selfish for wanting what all of my friends who had children around the same time as I had Parker, now have? Or am I just jealous that I can’t just say yes to extending our little family as easily as they have.
Or do I just feel frustrated? We wish that one day there will be a cure but until then it’s a waiting game for us. I’ve said so many times in my moments of feeling down that I wish to be sterilised. I fear being pregnant again just as much as I long for it. I’d love to feel like this was my choice and not CF making my mind up for me. But that would be selfish, I know so many women who are unable or are struggling to have a second child and I just couldn’t do go to the extreme of sterilisation.
So many people have made comments about only children, “an only child is a lonely child” is what comes up most. I hate that people tell me, completely ignorant of our full story, not knowing why. It’s not my job to explain to everyone I come across how I feel or what I wish for, but sometimes I feel so frustrated. It’s made me so much more aware. I never ask anyone if they’re planning children or when’s the next due anymore. And knowing so many women that need for a second child and physically they can’t have one is what is really hard to deal with. I completely understand the need, the want and the frustration. Only my reasons are slightly different. But the emotions are the same.
Physically I am strong. My body can do wonderful things and I can in appearance look like I’m holding it together. Strong. When mentally I’m not strong at all. I break down on the inside all the time. I overthink to a point I upset myself. I don’t know how my husband puts up with me, but I guess he probably feels the same. Just holds it together better. I am far too emotional for my own good. I am not strong mentally. When I tell people about Parkers condition and what our day to day entails they always say they don’t know how I do it and the truth is I don’t know either. We just do.
I just want to make everything better but I can’t. Life is hard sometimes. I’m so blessed to have such a happy and currently well child but in the back of my mind I know Cystic Fibrosis is there. So many people ask me about the severity of CF and is Parkers mild and it’s so hard not to get frustrated. Every person in the world is unique. So why would CF be any different. Parker is Parker no matter what. CF does not define him. It is just a part of him and one day I’ll be strong enough to explain to him that he is strong enough. Nothing can stop him.
I just dread that if we didn’t have another one we’d regret it. Or if we did that we’d regret it. How awful would that be? How awful would I be? People say you never regret having another. But can you really regret getting pregnant again? I just worry that I’d be the opposite. Could I cope?
The past few weeks and months have been hard. A lot of hurt and frustration has just built up and although I’ve tried to focus on other things I know that it’s always in the back of my head. It’s a hidden stress that I barely let anyone see. Sometimes, just sometimes it’s just a little too much. We’ve been told that going down the route of IVF is possible, ensuring the CF gene isn’t passed on. But even that scares me, am I selfish for wanting to focus all my time and attention to Parker. Me and my husband have been going back and forth for so long now I don’t even know if we know what we really want. All I know is we are so blessed to have a CF team that are so unbelievably supportive and have talked us through all options. We are so lucky to have options. To be able to apply for gene therapy funding, but is that what I want?
This blog post has been written in my drafts for so long now. The reason I wanted to write this today is because I’m sure I’m not the only one. Whether it be related to a worry over a medical condition or just a battle of the mind to handle change, I know I’m not the only one debating maybe, baby number two…