Dec 2, 2015
- Life changed.
- I was having a shower, Max was at the doorway on him tummy on a mat, and his head lowered. I called his name. I called Joe. I ran out and turned him over.
- He was a purpley blue colour. We called his name, rubbed his cheeks.
- We assumed it was breath holding. The doctors said that was most likely. That it was just a phase.
- Then it started happening every day, multiple times.Then one Sunday, 7 times. 3 days in hospital and all hooked up.
- 'Absent focal seizures', 'epilepsy', 'SUDEP' (sudden unexpected death in someone with epilepsy) , 'managed by medication' - the doctor was saying all these words and handed us a pamphlet.
- No known cause at this point. Not the typical shaky tonic clonic type, but a frozen child who turns dusky purple, apparently still breathing but sitting there looking petrified for a minute, then he's back, then sleeps for 3 hours to recover.
- In and out of hospital, managing my growing business, still working part time and trying to work out what life was going to look like. We felt worn down, but Max was still progressing. He was sitting and smiling and babbling.
- I'd given notice at my job. I wasn't dealing having to talk to clients about newspaper ads while my son was in the other room having seizures (working from home perks - not being able to separate family + work!). One of the most scary decisions I've made.
- On Max's first birthday, he didn't seem himself. He couldn't hold himself up, so on his birthday it was back into the hospital. He was having damaging infantile brain spasms, but thank *frank* we were on to them quickly.
- The neurologist had her suspicions and 16 weeks later of waiting for genetic results, we found out that Max has a very rare genetic condition (200 kids in the world) called the SCN2A gene mutation. It comes with a spectrum of issues, all spectrums in themselves. Developmental delay, epilepsy, lack of speech, physical issues, death due to uncontrollable seizures and other complications, schizophrenia, spectrum characteristics.
- Max is 4 now, he's walking. He's one of the lucky ones. He's making sounds. Every now then perhaps a word. He's smiley, he's super energetic and he's just worked out how to jump on a trampoline.
- After 2 years on a strict ketogenic diet, he's now been seizure free for 1.5 years. A miracle. We still have a long way to go with his development and whether or not he'll be fully 'able' is a bit of a mystery, but we've got so many more smiles than we thought we'd have, so that's enough for now.
- And Bon Maxie? We're no long hand-drilling holes. We have product assistance, a warehouse fulfilling orders. I can't believe what has grown from what's been the worst 4 years of my life. Mixed with the best. I'm still learning every day - there's no boss to tell me what I'm doing right/wrong.
- Joe is about to come on full time officially. He's been working 5/7 days with me anyway, but it's time he's had one less thing to worry about himself.
- Adding to earring holders, I keep wanting to solve problems, so 2018 saw a bit of a shift in my mindset - solve problems with practical products. Cue the Mighty Mini Wallet, something I'd been searching to find for 2 whole years on the market, and couldn't. There's more things along those lines, and I'm SO excited to share with you the next instalment of functional (but pretty!) products :)
I don't think I would ever say that running a business is a better option to being someone's employee. I've never worked so hard in my life. I'm switched on 24/7, I dream work.
BUT. There's something incredibly serendipitous about my starting a business that meant I can be there for every appointment, every bad bout and even just stop and enjoy the good times. I started this business because I wanted to get my brain back into gear. And I'm still going now to ensure whatever is coming in the future, we've got the option to stop everything and just be there for Max. And for that, I'll be forever grateful for your support.