“Oh he has his daddy’s eyes”, “he smiles just like his mummy”, “he’s going to be tall like the boys in the family”, “he’s his mummy’s double” – all little quips we love to hear when family and friends visit new babies. Being like someone and inheriting family traits gives us a sense of belonging, connects us to our roots and secures our place in the family. We feel a sense of pride at having passed on our genes- proud of the beautiful babies we’ve made, proud to say they’re like us: “we made that”.
Well when Zac was 17 months old we sat in a doctors office and heard these words “your son has sma, a neuromuscular muscle wasting condition and he has it because you have both passed on a faulty gene”.
You look silently at the man you fell in love with, you look at your perfect baby lying on the assessment mats, your baby that can no longer roll over, your baby that can’t sit up, your baby that can’t crawl, your baby who you’ve just watched battle a chest infection where he fought for his life and you’re finding out he’s going through all of this because of……… you.
The news is devastating, your whole body goes numb and the pain of guilt overwhelms your heart. But this is something you cannot change, you can’t go back and pick out the faulty gene, you wouldn’t want to fall in love with anyone else, it just so happens you fell in love with another 1 in 40 person who carries this gene so you just have to accept it no matter how painful it is.
The first few months are a whirlwind of setting up care but after that you have to face up to the genetics. You both go through feelings of guilt, pain, grieving, the “what ifs”, you cry, you rant, you talk – it helps that you both caused this – there is no more blame on the other. You get up every morning and face it together. After a while you accept and come to terms with carrying this faulty gene but next you have to tell the rest of the family. It hurts to have to tell your parents one of them has passed this to you and it worries you to think that your brothers/sisters could also be carriers. You tell everyone not to feel guilty, it doesn’t matter where this gene has come from because it’s here and nothing can change that but it still crushes you to see the devastation when your dad finds out he’s passed it on and it breaks your heart to think the results could have an effect on your brothers/sisters futures.
So what do you do when you find out you carry this faulty gene? Well we might be crazy but after the guilt and pain we decided to embrace it, it was the only way to get through the everyday. We booked ourselves into the tattoo studio and inked our broken DNA. I know it’s not for everyone but it was part of our healing process and part of us accepting that we carry this. My tattoo has a beautiful flower coming from it to symbolise that something so broken can produce something so beautiful, Craig & my dad have broken DNA showing that something broken can still be strong. This gene is in our family, we can’t change that but we’re slowly learning to accept it and live our “different kind of normal”.
*Huge thanks to evolved tattoo studio & to Nick for listening to our story, getting us & designing something unique*