Hopefully it's JUST epilepsy

2016 will be a year to remember, but not in a great way. Yeah, lots of celebs died and then there was Brexit which was then Trumped by the US elections, but really for us they aren’t even on the radar. This year has been hard in a way that I could never have imagined.

I can’t pinpoint when it all started to go wrong. In the middle of the night I would feel my wee boy sleeping next to me. His warm cheek against my arm, his milky breath across my skin. It would be all so peaceful and then he would start to move. A hiccough? A baring down? A vivid dream? It was so subtle that it was easy for me to dismiss and fall back to sleep.

It wasn’t until I saw my boy have a seizure in the daylight that I knew that something was wrong. Within weeks they became longer, more full on and more frequent. I have never felt more helpless in my life. I could do nothing for him while they were happening. I could hold him and talk to him as his brain suffered through these intense electrical storms. His body would spasm, his eyes would go vacant. There were times when one side of his face would drop like someone with Bells Palsy. When they stopped he would fall into a restless sleep for hours. All I could do was hold him.

EEG #5

Getting help was hard, really hard. I won’t go into all the details of the struggles we face just trying to get a diagnosis, but one thing we obvious. There is a massive information void when it comes to epilepsy and general medical staff are often hanging out in it.

During the time we were desperately seeking help, a few people said to us “Hopefully it is JUST epilepsy.” Yep sure. Epilepsy is preferable to say a terminal brain tumor, but it is far more sinister than what people perceive.

Although our boy’s seizures look quite subtle, nothing like someone having a tonic-clonic seizure (formally known as Grand Mal), they were incredibly dangerous. He was diagnosed with a form of seizure called Infantile (Epileptic) Spasm. It affects the entire brain and can cause developmental delays and even permanent disability if left unchecked. 

Epilepsy in general can have a massive influence over the lives of those that have it and their families. It is not just the seizures themselves either, it is the disordered sleep, the pure exhaustion, the mood alterations, the side effects of the medications and the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Many aspects of life change when epilepsy steps in.

There was no “just” in his epilepsy diagnosis. Even now, with the seizures under control, the lad’s epilepsy influences many of the decisions we make every day. There is an enormous question mark as to what the future will look like for our boy. We are doing everything in our power to give him the best chance possible (send me a message if you want to know what those things are), but we just can’t know how this is pan out for him.

This Sunday 20^th November, we are holding an E-Tea to raise money for Epilepsy Action Australia. We are hoping to raise $500 to help them to continue to provide services to those living with epilepsy and to fund education programs. These services are vital as nearly 800,000 Australians will be diagnosed with epilepsy at some stage in their life.

Donations can be made directly to EAA here: https://www.epilepsy.org.au/support-us/make-donation/donate-now-form

PS. This was a really difficult blog to write.  We are currently 20 weeks seizure-free but not a day goes by that I don’t worry that the meds will fail. I watched one of the videos with T’s neurologist last week and I am still shaken by it.

EAT real food

I once had my mind blown at a conference on “birth, breastfeeding and beyond” when one of the speakers asked the audience this question:

What is more important, breastFEEDING or breastMILK?

Wait what?

What the speaker wanted to cover was the idea that the action involved with breastfeeding was just as beneficial - if not more so - as the nutrition supplied by breastmilk.

For an hour and a half we looked at all the ways in which breastfeeding helped with infant development that were not related to the contents of the milk. It was quite amazing and I walked away with more knowledge than I had anticipated; which then triggered some burning questions.

There is a plethora of information out there - websites, books, blogs (like this one), documentaries and podcasts - all focused on nutrition. They primarily describe the content of what you put in your mouth. There are many theories on what you should be eating. They can vary greatly from “legalise all food” advice, to strict diet strategies like GAPS, paleo and raw veganism… and oh so much in between. But what I see very little of, is the importance of actual chewing and eating.

Roast Pork sandwich!

Which brings me to the reason for this blog. Which is more important; WHAT we eat, or that we EAT?

We live a life of convenience. We want quick, we want easy and we want minimal energy involved. What better way to save time and energy, than by taking in food that almost bypasses your mouth? By that I mean, we hardly need to chew most of our modern foods. In the supermarkets you can find myriad prepackaged meals of a uniform, fairly soft consistency that require almost no chewing. It is mostly bite and swallow.

On the other hand, we have the current fads of green smoothies, juice fasts, shake diets and the many versions of liquid meals.

All of this means that most of us are too often missing the important step of physically eating. But there are a number of processes involved in the physicality of eating that impact not only your digestive health, but also your nervous system, brain, and even your emotional wellbeing.

What the act of eating (chewing) does for you:

1. Chewing stimulates the vagus nerve.

Among other things, the vagus nerve connects your brain to your digestive tract. When you chew, you basically prime the rest of your digestive system to do its job of breaking food down, and absorbing nutrients and water into the blood stream.

When you consume something that doesn’t require chewing, it doesn’t give your stomach time to produce enough hydrochloric acid to break down the proteins into amino acids. This then has a flow on effect all through the gastro-intestinal tract.

2. Produces saliva.

Saliva is so much more than the lubricant that helps your food go down. It contains enzymes that begin the digestive process from the moment the food touches your tongue. Skipping this step, even when that food is in liquid form, puts more pressure on the rest of your organs to break food down into usable nutrients.

Saliva also contains minerals that are required to keep your teeth strong and healthy.

The release of saliva is aided by a hormone called oxytocin. Oxytocin is one of your feel good hormones. It is associated with love, bonding and feelings of wellbeing. The act of eating and chewing can help to make you feel good.

3. Reduces stress.

Digestion requires loads of energy and when we are doing it properly, the body priorities it over other processes. When you take the time to chew your food, the body down-regulates stress hormones, so that some of the blood supply and energy going to your limbs is rerouted for your digestive system to use. Chewing your food can help lower feelings of stress and anxiety.

4. Increases memory and cognitive function.

Studies have shown that taking the time to chew increases stimulation to the parts of the brain that control memory, alertness and executive function. This occurs when pressure is applied to the periodontal ligament. In fact there is even a correlation between the number of teeth a person has and the onset of dementia.

5. It’s like weight-training for your teeth.

You often hear of the benefits of weight bearing exercise on bone health. Using your teeth for their intended purpose of chewing provides the same benefit. The load applied to the teeth helps to keep the join between teeth and jaw, healthy. Without chewing, bone density decreases and teeth can become loose.

I am quite the fan of good soup, a decent smoothie, or even the odd juice. However, I keep in mind that HOW I eat my macros and micros, is really important if I want to be truly healthy.

Hey Kid! Let's be friends

You all know how much I like to have a dig at popular memes on social media, well here is yet another. Every couple of months or so, this one comes across my Facebook feed:

 “Hey child of mine. I am NOT your friend. I am your parent. I am going to do this and that (stalk you, yell at you, make you do shit you don’t want to do, etc.) because I am your parent not your friend and I intend to beat you into shape like the malleable piece of metal I think you should be.”

I can see where the people who create and share these memes and videos are coming from, but I really feel like they are not only misguided but dangerous. So I am writing this open letter to my children to explain why I value their friendship.

Hey Kid of Mine (in your head just insert your own name because you know I am probably going to say the wrong one anyway),

How are you going? I hope all is well with you.

I just wanted you to know that I really want us to be friends. See, there are two things that I have learned; your friends are what make life worth living and friendship makes a solid foundation for EVERY relationship you ever have.

There is a crazy sentiment that has floated around for ages that you can’t be both parent and friend to your kids. It is based on this weird idea that a parent lays down the law and makes their kids adhere to it. No matter what.  On the other hand; as a friend, you do all in your power to make your kids like you. You give in to their every want and whim to keep the smiles on their cute little faces.  You bend over backwards. Sacrifice your time, energy, money and happiness in order to win them over. The result, being kids that grow up to expect the world to be handed to them on a platter with no empathy for anyone else. Spoilt brats. Unicorns.

It makes me wonder what sort of friendships these people have. See Kid, that is not what my friendships are about. I love my friends. They are beautiful people and I want them to have everything in life that they deserve, but never have I felt like it was my job to give them what they want. I have never felt that my role in our relationship was to make them happy.

That is not to say that I am an uncaring arsehole. If I can help someone out, I do. When things are tough, if I can lend an ear and empathise or point them in the direction of a solution, I do.

The friendships I have are based on understanding, mutual respect, celebration of our different talents and valuing each other for who we. It’s a flow of energy back and forth; and give and take, for want of a better phrase. Sometimes the flow goes my way, sometimes it goes the other. Sometimes we look at each other and exclaim, “Fuck, neither of us have much to give right now, but I see that stuff is hard for both of us and I love you.” Sometimes both of our cups are so filled with joy we feel invincible together.

My friends don’t need to do anything to win me over. They don’t need to buy me gifts or chocolates. They don’t need to drop everything to appease my whims. That is not what friendships are about. Actually, it is not what any of my relationships are about.

So Kid, why would my friendship with you be any different? I am not here to be your slave. I am not here to win you over with friendliness.  On the other hand I am also not going to try to berate, harass or shame you into being who I think you should be.

As with my other friends, there will be plenty of times I will say no. It might feel like rejection, but I promise you that will never be my intention. There will be times that I will ask of you, more than you can give; and when you say no, I will do what I can to accept that with grace. There will be times when you will need to be told that you are wrong. There will be times that I am wrong and I hope you feel at ease to tell me so.

But Kid, when a storm hits I will be your friend. I want to be a person you can always turn to. To help steer you through the hard times and I can’t be that unless we are friends. I want to be able to ask you for help when I feel like I am drowning. I want us to be invincible together like I know we can be. We won’t always agree; but I hope that the mutual respect we base our relationship on, means we can try to see each others perspective. So what do you think, can we be friends?

So much love,

Your Mum.

xxxooo

5 Reasons to have kids while you are young

This is not one of those scare mongering “your ovaries are a ticking time-bomb and your womb will turned to saw dust on the stroke of midnight of your 36^th birthday” posts. This is just the musings of a mum that had kids young and then went on to have a laat lammetjie*.  There really aren’t any hard and fast rules about the best time to start a family, but here are a few things that you may not have thought about.

1.     There is never a “perfect time” to have a baby.

I know a number of people think they need to have all their ducks in a row before they can go down the path of procreation. Things like having a good, well paying job; finding “the one” guy or girl they want to spend the rest of their lives with; owning the perfect family home.

Line up this way please ducks.

Now, I am not saying that having one or any of these things as a prerequisite to becoming a parent is a bad thing, but the truth of it is that none of these things are certainties. Each of these things can change in the blink of an eye due to circumstances in life. Not only that; none of these things make you a better parent than someone without them.

There is no such thing as true financial security and no perfect time to have babies.

2.     You have just come off the back of partying hard, you know how to function after all nighters.

No, really.  You have got this gig. You can stay up all night and still function the next day. I am sure adolescent partying habits are just nature’s way of training us for the early years of parenting. When you are in your 30s and 40s it is such a shock to the system (trying to party hard or have a small baby).

3.     You aren’t just having a baby, but growing an adult and all the stages in between.

When most people get that overwhelming urge to procreate, they think of the blooming belly and the squishy baby, maybe the cute toddler or even the sweet preschooler. But this is the short end of the parenting journey, these years fly by faster than you can possibly imagine.

So how old do you want to be when your kid is a teenager? The reason I ask this is because to parent your adolescents effectively you really need to put the same amount of energy into them as you did when they were toddlers. The focus is different, but the level of energy in the same. When you add in the fact that when it comes to brain development adolescence ends at about the age of 24, that is a lot of years your kids need you to be engaged with them.

4.     There is plenty of time to have a career after children

You can have a career then kids. You can have a career and kids. You can have kids then a career. None of these are wrong. There are always struggles, compromises and considerations for all of these options. Childcare is expensive.  Re-entering the workforce after having kids is a challenge. Juggling Uni and small children could mean studying on the toilet. But it can be easier to start a new career post children than to try and work your way back into an old one, especially if the industry you worked in is particularly dynamic.

5.     You don’t know yourself yet.

Here you are, you know who you are. You have hobbies. You have friends. You have a vision of who you are professionally. You have had the luxury of working on you for at least a decade and being in your own skin is the most comfortable thing in the world. Then you start to share your skin with someone else and piece by piece all of the above is eroded away. When you are older, you have had much more time to become set in your identity and no matter how hard you work there will always be sacrifices to who you think you were. Your body, your time, your money, your thoughts and even your feelings no longer belong solely to you.  You are left with one identity. Mum.

When you have children earlier in adulthood or late adolescence you are still doing so much growing yourself. You have the opportunity to meld into the role of mum and from there grow to what you want to be along side your child.

Finding out who you are while being a mum is far gentler than finding yourself, becoming a mum and then having to totally redefine who you are afterwards. No matter how you look at it; pregnancy, breastfeeding and parenting changes you physically, emotionally, socially and financially.

*Laat lammetjie is an Afrikaans term which means “late lamb” and refers to a baby born when its siblings are quite a bit older.