When you can't see something it's easy to slip into the mindset of it not existing. If you can't see your power bill it's easy to be at the shops and splurge on a purchase because in that moment your bill doesn't exist! Out if sight, out of mind.
This is also the case with cystic fibrosis. When Oli was born all I saw was a teeny fragile body and helpless spirit. I spent many sleepless hours worrying that he would be the sick one, the weak one...teased at school. Fast forward 2 and a half years and he is anything BUT fragile. Ask anyone who knows us personally, Oli certainly takes no prisoners. Full of energy, vitality and a very strong spirit.
Don't get me wrong, this is a blessing. But also a curse. It makes cf easy to forget. Especially in times of chaos in particular having another baby.
I find myself forgetting things. Missing medications because I'm so overwhelmed with feeding both kids and keeping them alive that it's already 4pm! Almost time for the next dose, let alone the first! It's so hard to prioritise two kids and squeeze in some time for me to eat, pee, sit down etc. Without adding on additional treatments. However it's a non negotiable, I think thats the part that makes it even worse. It becomes second nature they say. "Just like brushing your teeth!" Ask any mum of two under 3, some days - as gross at it sounds...the first time I brush my teeth ia on the evening! But this isn't about ME, it's about Oli. If I miss something for me oh well. But when Oli's health is depending on it...gahh thats really difficult.
The guilt. Oh the guilt. I missed Oli's physio treatments two days in a row last week (baring in mind that he is so active and well, thats what I keep telling myself for comfort.) But it's still been eating me up. He did a little cough a few days ago, merely clearing his throat but I instantly thought - HES SICK AND ITS MY FAULT! Obviously he's not and wouldn't be JUST BECAUSE OF TWO DAYS but its a horrible feeling and position to be in.
I didn't invite cf into my life. It came without asking and quite frankly I like to ignore its existence most days. I know, terrible...judge away! Selfish probably. But the point I'm trying to make is that it's so easy to forget when I have a healthy, fierce, active toddler. Oli is not the sick one! He has been having tummy issues lately so a lot of my attention has been focused oj the gastrointestinal aspect and not so much his lungs. Prophylactic treatment needs alot more discipline than treating something you can actually SEE, hear, feel.
I wouldn't change having my kids close together but if I'm being honest it's a challenge to keep on top of life in general without even taking into account the cf. I don't feel like anyone could have told me that though. Likewise I don't think anyone should read this and be put off by having another baby after having a child with cf. I don't know how our story is going pan out or the experiences we will face in the future. Nothing can prepare you for parenting, kids, health problems. Just need to take one step infront of the other I guess!
That's what I'm trying to do. Albeit wobbly, often exhausted steps, dragging Oli, carrying Rube. Just surviving! The first years the hardest right? RIGHT?!