I hate the word normal…

I remember back to the day we walked into the NICU a gloomy feeling among the hospital. Sitting in the chair when the doctor came in to deliver the news that Piper’s test came back positive for DiGeorge syndrome (22q). What is it!? A missing piece of chromosome 22 which has over 180 symptoms affecting all parts of the body. We went away that night, devastated. Will our daughter be normal I thought? But then I thought, what is normal? God didn’t create us to be normal. We are unique – created perfectly in his image. I hate when Piper is compared to ‘normal’ babies.

Why did God create Piper with all these health issues? I believe God doesn’t give us things we can’t handle. I’ve become so much stronger as a person and in my walk with Jesus because he gave me Piper. He gave me a unique little warrior, there is nothing too big that we can’t handle together. In every circumstance you face, God already knows about it and he knows you will be ok. He’s got this. Trust him.

When Piper had her nasogastric tube down her nose for feeding we would constantly have strange stares and people coming up to us, most of the time to be nosy. Make a short small talk conversation then jump in and ask “what is wrong with her?”. I would gracefully smile and give the short answer, “she can’t swallow, so she is fed by the tube”. I’m really thinking – “there is nothing WRONG with her, she was just born with a chromosome deletion. She’s a little delayed and eats a little different to us. But there is nothing wrong with her. She wasn’t made wrong. What sort of question is that”.

People say, “I don’t know how you do it”. We changed the nose tube ourselves but now she has a tummy tube that feeds her. We clean it 3 times a day, we feed her through it for 20 hours a day on a pump, we change the milk every 4 hours, we flush it with syringes 5 times a day, we give her medicines 2 times a day, we come to regular appointments hours away and have regular invasive tests, surgeries, X-ray’s, we suction her everyday plus so much more… You just do it. You’re a mum you just get on with it.

It’s hard some times when I see other mum’s enjoying the things we can’t. Can’t right now. But we enjoy other things. We all have our victories, big or small. Mine are just a little different to yours. We have victory through God. We can rejoice in that.

“Victory is ours through you O’Lord” Psalm 3:8

So what is normal? Google tells me, conforming to a standard; usual, typical, or expected. No one is normal, that’s boring! You’re more than that. I’m reminded daily by Pipers fun, cheeky loving, strong, determined spirit. I am so lucky God created her perfectly in my womb. This is our life and we are so blessed.

Everyone’s story is different, nothing is normal.