Category: family

A Mother’s Heartache | Guest Writer Zoe Taylor

“A Mother’s love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking.” – Helen Steiner Rice

When a lot of people think of seizures they imagine jerky movements from a stiff body – even I was guilty of that image in my head, but each seizure is different and the changes within the episode are so vast. But you would never know until you saw it for yourself. This is my experience so far with seizures.

Life was full on the second Charlee arrived, it was a perfect labour compared to my first but ended in me being knocked out for surgery following a postpartum haemorrhage and transferred to King Eddies on my own. The moment I got home my attention was fought over between a toddler, a newborn and my partner who just wanted some quality time together. A few months flew by thanks to sleep deprivation, my maternity leave was coming to an end and I was running out of patience being around the kids 24/7 so I made a plan to go back to work early. We were coming home from dinner when a car turned through a green light without giving way to oncoming traffic and we T-boned them (at that point this was the scariest night of my life).

Returning Back to Work

I started back at work the next week. It was only a week after the crash when Charlee had her first seizure I second guessed myself and called dial-a-doctor (or a similar service). Because at that point she was still responding to us, babbling, following us around with her eyes, it was only her tiny hand curled up in a tight fist tucked under her chin that was shaking discreetly. The operator said “if you think she’s having a seizure call an ambulance”. Between then and when we finally got into the hospital the seizure had gone over 40 minutes! Once she was stable and awake we were transferred to PMH to be monitored. The doctors assured me this was a once off thing (‘febrile convulsions are very common in babies’) but I knew this was only the start, as childhood seizures were in my family; still the Doctors were positive and so certain in their statements.

Another month after that she had her second. Nearly 3 months went by when we had put Charlee into day-care with her older sister as I was determined to have this ‘normal’ life. Within 2 weeks of day-care she had 3 seizures over a weekend, the last resulting in an induced coma; she was discharged with new anti-epileptic medication and we were so hopeful it would work. Another month and another seizure and another induced coma we were shattered, dosages went up and down and we realized the public medical system was broken as communication between specialists lacked and we had to keep up with all the details ourselves.

My partner was pushed out of his job as they didn’t like him having so much time off to look after his family, they told him he was taking the piss and that “you need to sort your personal life out”. I thought we would be supported by some sort of carers payment but everyone refused to sign documents about her condition, so I took on more hours at work and became the main income earner while my partner became a stay at home dad.

Life With a Sick Child

So far there has been two induced comas, three incubation’s, numerous drugs tried tested and failed. Charlee has had about 12 seizures (that we know of) within 8 months, each followed REturny hospitalisation of a few days. It doesn’t sound like much but they are fierce, I watched my baby turn blue while emergency operators advised not to start CPR until paramedics arrived. I had my heart crushed when they told me they couldn’t stop the seizures and had to ‘put her to sleep’. Time and time again I felt I had failed, as a parent I couldn’t save her I couldn’t ‘fix’ her episodes and on top of that the guilt of knowing the genetics had been passed down through me. I never asked for this, who would ever ask for this? How long before they damage her growing brain? How long can her body stand the cocktails of drugs? And will they ever go away?

While all this was happening I struggled to keep up with those around me; friends and family often came last, I just didn’t have the energy or time to focus on anything outside of Charlee. I was trying to keep up with my girls who were growing so fast, trying to research information surrounding my baby’s condition because doctors didn’t seem to have the time. Every GP/CHN/specialists visit is met with praise and that “she’s doing so well” or “there’s nothing wrong with her” but that doesn’t take away traumatic ED trips and the fact that there is something wrong that no one is willing to look deep enough into. Because they haven’t seen her at her worst, with tubes and wires coming from every inch of her, hooked up to machines to keep her in a ‘safe’ state giving her body and brain a rest before any real damage sets in.

A Mother’s Pain

I fight with my thoughts; ‘you have so much to be thankful for’, ‘you shouldn’t be grieving’, ‘some parents have it so much worse’ and so on. I listen to doctor’s terms that are so foreign they go straight past me, the same terms I quickly become fluent in. Nurses recognise us like we’re regulars at a local cafe, which I am extremely grateful for; you don’t realise how comforting a nurse can be when she too has witnessed the ups and downs of your child.

I am so lucky to have an amazing team of doctors and nurses at our local hospital that recognise our little girl, know the plan as soon as we come crashing through the ED doors and most importantly LISTEN and respect our wishes. We beg to stay local not to be sent up to Perth, we don’t qualify for accommodation at Ronald McDonald house which means our family is split up and usually your chances of sleeping on a chair or in your car are pretty high. PMH stays for us mean 140 km round trip each day plus parking, plus food, plus babysitters for the older sibling, plus days off work, plus medication the costs add up fast and before long we find our sanity has gone out the window and are desperate to be home.

So far it’s been nearly 4 months seizure free in our house and we feel as if it has been a lifetime since our last ED trip. Charlee is now on a different anti-epileptic drug that seems to be working (we aren’t holding our breath) and her action plan seems to work well. She is walking, talking, eating well and is smashing all the milestones for an average 16 month old. At the start of 2018 Charlee’s genetic testing results came back positive for the mutation of a gene known to be related to seizure disorders. We’ve been on this journey for more than 12 months without any real answers; we just don’t expect them anymore.

Things that I have learnt along the way:

  1. Do that first aid training course you’ve been putting off, if you can’t afford it google and YouTube is your next best bet as some first aid knowledge is better than none at all.
  2. If it’s not in writing it may as well not exists, (medical records, doctors’ advice etc.)
  3. Don’t be scared to share with strangers, on admissions they’re usually the only adult company you have as partners and/or family can’t stay.
  4. Go with your gut, your instincts are stronger than what most believe and remember no-one knows your child better than you.
  5. If you’re ever staying at PMH pop into Kalparrin, they are the nicest most amazing people I’ve ever had the chance to meet and I honestly wish there were more support centres around regional WA.

Here are some Websites and organisations that you may find helpful..

"Be Brave Little One." - Little Charlee
“Be Brave Little One.” – Little Charlee

Zoe Taylor

Mother to Charlee

The thing I love about Motherhood | Guest Writer Suzanne Jones

It would be fair to say that I needed a little persuading to enter the world of Motherhood. I was enjoying a fulfilling career with all the freedom and excitement a good income allows. What little I did read about motherhood was often negative with any positives listed only as a small footnote. I always understood the need to seek comfort in sharing similar experience with others but came to the conclusion that motherhood was an overall unhappy and exasperating experience.  After all, if it was all that great, why didn’t people write about those aspects? I would see sentimental memes shared on Facebook regularly enough but the long and detailed accounts of life with a baby or toddler were reserved for dissatisfaction and frustration. I did not want to be that miserable. No thank you.

Fast forward a few years and I was happily settling down with a wonderful, caring man. The urge to create a family between us crept in. As happens when you hit a certain age, friends started having families of their own and I was able to see these women go through the most wonderful transformation. They glowed with the love and joy of their babies and, most surprisingly to me, they were still interesting, vibrant and had their own identity. I thought maybe I could be a mother and still be the ambitious, geoscience geek that I am. And so, not long after we married we started trying for a baby. We were blessed with our daughter Madeline Theia in February of 2017 and nothing in this world has made me happier.

Coming up to Madeline’s first birthday I have been looking back over the past year and thinking about all the things I have enjoyed. I decided to write a list of just some the unexpected pleasures that come with being a mum to counterbalance the more negative articles I had read in the past.

I should say that the following are my personal experiences, not a generalization. I have deliberately kept it positive. There certainly are hard times and many challenges but those have already been covered so many times. I am not trying to gloss over the hard times or deny they happen, because they absolutely do. This is just my happy version of the “Dear First Time Mum” blog… and here goes…

Unexpected Positive Experiences When You Become A Mother

The moment a child is born, a mother is born - Rajneesh (Image Credit Lion Fox & Co)
The moment a child is born, a mother is born – Rajneesh (Image Credit Lion Fox & Co)

Just about everyone is friendly

Most trips to the supermarket take a long time. Not because the baby is unruly but because most older ladies you pass will stop me to chat to Madeline. She mostly obliges with smiles but even when she grimaces at them, they still smile back and chat a little. It’s not just the granny types either, the granddads wave and other children come up to say hello to a baby and parents make polite small talk. I overhear people whisper “oh she’s so cute” and yes, I will admit that I actively engage in these conversations and covet the baby compliments. They make me smile and I genuinely enjoy the interactions. Joking aside, there was a time when I started to feel very isolated. We have no family in Western Australia and my husband works away. These casual ‘friends’ I made at Woolies were what stopped me slipping into a dark place.  Thank you friendly strangers.

The Baby Vortex

I can lose hours each day just being with Maddie. We call it the Baby Vortex. When she was first born I could at her sleeping for such a long time I would get neck ache. Newborn babies quickly learn to control their eyes and they can maintain eye contact for what feels like hours. I would wonder what she was thinking and if she knew who I was. Nowadays I catch myself just watching her play, other times I am being silly to keep her laughing. Sometimes a whole morning can go by and I realise that I haven’t done any of the chores I set out to do and I forgot to prepare lunch. The Baby Vortex is amazing. It’s why it takes me so long to get anything done.

More ambition, enthusiasm and motivation (just redirected)

People used to tell me that I would probably lose interest in my career when I had a baby and that my life would be ‘put in perspective’, as if it were out of perspective prior to becoming a mother. I would find it so frustrating and patronising. Well, I have not lost ambition or enthusiasm at all. In fact, I feel more driven than ever. I have a daughter and I need to be a role model to her. I want to show her that she can achieve anything she wants. The difference today is that I may have redirected my ambition. Time is precious and if I am away from my baby girl, it needs to be worthwhile. I feel a strong urge to show young girls that they can be part of the STEMM (science, technology, engineering, mathematics, medicine) world. Maybe I have found perspective, my interests have evolved, I am more ambitious than ever because I am now accountable. Its not just me anymore, I have a responsibility to this little girl and nothing is more motivating than that.

Birth can be beautiful

My birth did not go to plan. Not at all. My baby’s heart rate kept dropping so the obstetrician decided to intervene. Maddie was born in a bit of a rush with the umbilical cord wrapped three times around her neck. To make matters worse she was holding on to the cord and with every push she tightened the noose. Then, when Maddie was only two hours old I was taken down to surgery as I was hemorrhaging. It was four hours before I was reunited with my little family.

Thankfully, our little girl was OK. She was perfect and I was in a state of complete bliss. My poor husband was frazzled and in shock. It was now 2am and he had watched me go through a complicated labour, worry about our little daughter and then had to wait whilst I disappeared off to surgery for four hours. Amazingly, on that long day, not once did I feel scared. I had been seeing the same obstetrician for all my appointments and had a student midwife following my pregnancy. I knew the team we were with that day and they knew us. I could have had a very different experience had I not had complete trust in them. They kept me calm and I am eternally grateful for the wonderful care they gave to us all.

I love my stretch marks!

I didn’t particularly want stretch marks. I used three different types of lotions and oils in the hope of limiting the spread of these scars as they grew across my pregnant belly. However, after the birth of our daughter I experienced a kind of sadness that she was no longer inside of me; we were no longer physically attached. My reminder of the nine months of carrying her were these stretch marks and my wobbly, swollen belly. Now, a year later, my belly is almost back to normal but I still have some faded stretch marks and I love them. I smile when I see them when I get out of the shower and I hope they never fade completely.







It’s time to talk about Mental Health | Guest Writer Kym Woolcott

Looking at these two photos side by side is really an eye opener! The left photo was taken in September, 2012, and the right was taken a few weeks ago, so approximately 5.5 years difference, but that’s not all. The girl on the left and the girl on the right are 35 kilos and four dress sizes apart. The left was a smoking, regular drinking, anti-depressant taking, confident, outgoing, happy person, even though she’d only lost her brother a couple of months prior. The right is a non-smoker, occasional drinker, medication free, often quiet, withdrawn, anxious mum, even though she physically looks her best ever. This is Mental Health!

Mental Health Does Not Discriminate

This is what mental health has done to me and my body. I am EXTREMELY proud of my body and it’s capabilities, and I’m certainly trying my best to be the most positive person I can be, not to mention I couldn’t be happier that I kicked my cigarette smoking habit, BUT I wouldn’t be this size if my mind was healthy. I get many, many compliments regarding my weight loss, which I love and appreciate, and without them I wouldn’t be able to share this with such ease, because its important, and everyone should read it.

Last year was probably the rockiest year for me. In July, a young man was killed not far from my home. He and I were friends years ago, and spent considerable time together, before drifting apart when I moved out of Mandurah in 2008. He was an incredible person, and my heart aches when I think of the love he left behind.

This man’s death was a major trigger for me. He passed away on the 8th July, two days before the anniversary of my late brother, Ben’s death on the 10th July. I distinctly remember walking past the TV set on my way out to a family dinner when his face appeared and stopped me in my tracks. I’m generally very open about the fact that my brother took his own life, but I rarely go into details, and I’m not going to now, however I will be as honest as I can about this, because, as I said, it’s important.

When I learned of my friend’s death, I began experiencing all the stages of grief for Ben’s death from the beginning, some I hadn’t yet experienced. It began with denial. Did he really mean to do it? What if it was an accident?

Then, pain and guilt. Why did he do this? Was there something I could have done differently? Did I contribute to his death? And, my lowest point, anger. This one took me a long time to come to terms with, and it took a heart to heart with my mum, with lots of tears, to verbalise WHY I was so angry, which was something I couldn’t put together in my head until that moment.

Ben and my friend were the same age, well had Ben still been alive they would have been. My friend left behind two children, and had his life taken. Ben took his own. It was so hard to come to terms with, and even admit to myself that this is what I was angry about. I thought I was angry at everyone else, and I took it out on them regularly, but I was angry at Ben. And it was literally eating me up.

Did I think Ben was selfish? Absolutely not. I never would. He was dealing with inner demons that, to this day, I will never understand. But for him to do what he did to himself has always shown tremendous strength. Do I wish he was still here? Absolutely, but I would never wish someone stay alive for my benefit. I miss him. Every. Single. Day. And will continue to for the rest of my life, but I WILL make him proud.

Some of the Effects of Mental Health

The three weeks following my friend’s death were the worst of it all. I hardly ate and lost 13kgs, almost broke up my family and experienced many disgusting thoughts. I experienced a mixture of both the anger and depression stages of grief for many months following.

My mental health was, is, affected by the changes my body has experienced. I have loose skin where I’ve never had it before. I was starting to hate the person I saw in my reflection. She was like a stranger. And for a long time I felt like she was a shell of who I once was; a carefree, happy person.

So, not only was my mental health affecting my appearance, my appearance was affecting my mental health, and I was literally going around in circles. Where I once stood on the scales and hated watching the numbers continue to go up out of my control, I was now watching the numbers drop, and I felt like there was nothing I could do to stop it. I wasn’t hungry, so I couldn’t force myself to eat, as much as everyone around me tried to make me feel like I should (which actually made me want to eat even less). It was something that had to be adjusted to in my own time.

I received comments like “you’re being silly”, “you’ve become obsessed” and “you’re loosing too much weight” – none of which were helpful in the slightest. What would have been helpful would have been to have someone sit next to me, and truly listen to what was going on in my head. I felt that the people who were supposed to love me the most in the world were making no effort to comfort oeven understand me, so why should I burden anyone else with the information? I closed up, and put on a front so noone could figure out what was going on. I put my weight loss down to clean eating, and people believed me.

I was angry, stubborn, and hard. I hardly smiled, or laughed. Or, when I did, it was faked. Hardly anyone knew the truth regarding what I was dealing with internally, and some who did know treated me like my feelings weren’t justified or valued. I knew this was something I was going to have to want and push myself to get through on my own, so I decided 2018 was the time to do that.

Now is the time to discuss it!

I started to love my body, and remind myself everything my body had achieved. My body had carried my child for 41 weeks. My body recovered from a c-section that birthed that child. It has produced breast milk to nourish that child for two years and three months, and counting. It has recovered from illnesses, surgeries, injuries and beatings. It has stood back up every time life has knocked it down, and I knew now wasn’t going to be the time it held me there. I had a daughter and a boyfriend, my own little family, that I needed to make myself healthy again for – beginning with my mind, and following through with my body.

Now, I’m going through what is called the upward turn stage of grief, and boy I’m so glad I’ve made it to this one. I wasn’t too sure I’d get through those months, but I did thanks to the amazing people I surround myself with daily. I spent way too long receiving comments like “you look great” and responding with an ungrateful “thanks”, because I knew in myself that I didn’t deserve praise. I decided, when I was ready, that I needed to be honest about this.

While my diet is a hell of a lot better than it was 8 months ago, my mind isn’t, so it’s not fair to put my weight loss down to a change of diet, which is what I was palming it off as previously. But if you’ve read this far, now you know the truth, too. It’s important to look after our vessel, but let’s not forget to cherish the mind and soul inside it. I will never stop thanking the amazing people who stood by me during my lowest moments, who listened to me dribble, watched me stumble and fall, and who were always there to pick me up. You know who you are.

Please, please, look after you. You are important. You are incredible. And the world deserves you. Please know there is always someone who will listen, even if you don’t make any sense – trust me, I know. And regardless of what size is stated on the tag of your clothes, it does not equal your worth. You are beautiful, and perfect, just the way you are.

Kym xx