Chocolate cake & a ham sandwich….. for breakfast.

What kind of mum gives their three year old chocolate cake for breakfast??

Well when Zac was diagnosed with sma his weight had plummeted – he was 17 months old but was closer to the weight of a 6 month old baby. The months leading up to diagnosis were difficult – he had gradually stopped eating meals & had started to choke on crunchy textures. My days were consumed with trying to get him to eat snacks and I was constantly battling with him over spoonfuls of porridge, tuna pie & yogurts. Sitting up in his hi-chair was becoming more challenging and he was permanently too tired to finish any food put in front of him. A few weeks before diagnosis Zac was admitted to hospital with a chest infection where his weight fell dangerously low.

Diagnosis day came and we finally understood why Zac was struggling to eat; he was too tired to chew & swallow, his swallow was becoming weaker, his digestive system was slower and he wasn’t going to gain weight like a “normal” person as his body metabolises things in a totally different way. By this point Zac was eating snacks such as quavers, cheese cubes & yogurts but it wasn’t going to be enough to sustain him so we had some big decisions to make.

The quickest “fix” was to use a NG tube – a tube that goes down to the tummy through the nose and we would use high calorie formula to feed Zac several times a day. However, this did not agree with Zac – he was sicky with every feed, he had a big brother who was constantly worried by this tube and Zac had completely stopped eating anything as he was gagging with the tube all the time. It was honestly one of the most stressful periods for us. As parents we wanted Zac to enjoy eating whatever he wanted, when he wanted without all the pressure of calorie counting. We finally found a surgeon who agreed to take Zac into theatre to perform a gastrostomy – Zac would have a discreet “button” put in his tummy and we would connect this to a tube to feed him the bulk of his calories and he would be free to enjoy eating again. We had a 4 month wait for the op and during this time I had to syringe high calorie drinks into Zac’s mouth to try get him as strong as possible for the operation. It was a draining and mentally exhausting time.

Operation tummy button was complete just over a year ago and it has been one of the best things we’ve done for Zac. The pressure was lifted immediately and our lives became much more free. Zac can be fed wherever, whenever without him having to physically work hard to eat and without us having to count calories! However the downside has been that he has a full tummy most of the time and rarely feels hungry. He won’t eat a normal meal at all now and if I ask if he wants lunch the reply is usually “just use my button”. Maybe every few days he’ll feel peckish and eat dairylea dunkers or a few chips, few bites of fish finger or a pack of quavers. I’m totally fine with that – of course I would like him to eat normally but in the grand scheme of things I’m happy for him to snack when he wants knowing that all of his nutrition is taken care of. Zac is fed all through the night (this way he isn’t using any energy at all & the calories can go to bulk up weight) so he isn’t hungry at all in the mornings. I ask everyday if he wants a breakfast and the answer is ALWAYS “no”. Well that was until one day last week when he answers “yeah I want chocolate cake & a ham sandwich”. I was completely shocked and over the moon that he wanted to eat so what did I do??? Yep I cut up that chocolate cake into little easy to eat squares, made a ham sandwich & sat happily watching my little boy eat a breakfast!!

What kind of mum gives their three year old chocolate cake for breakfast?? The “different kind of normal” mum!!

*thanks to my mum who gave me the idea to write a blog about that breakfast xx *

Learning to love your genes.

“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*