Silent Promises

I’ve become such a cry-baby since the birth of my daughter.  I think the tears are a combination of fear, what-ifs, nostalgia, happiness, love and faith.  They are messy tears and ridiculously unpredictable.

For example, I can’t read her Mem Fox’s Ten Little Fingers and Ten Little Toes without breaking into tears.  Similarly, I was loving Outlander but cannot face it after the main character miscarried at full term. I cry at beautiful videos on YouTube too.  Like the one I watched today by Dude Dad:

https://youtu.be/z69K3AzBjME

It occurred to me tonight after finishing reading another lovely book by Mem Fox called Time For Bed that I need to commit every beautiful moment to memory; the cuddles, smiles, the crazy antics, the fun times, the challenges, and every milestone.

But how do you guarantee memory retention when Grand Mal Seizures starve the brain of oxygen and effect memory?

Mostly I’ve noticed that the memory loss effects disposable and insignificant moments.  In general, the memory comes back through discussions with others, Google Maps, and focus.  But the seizures I had last year have really thrown me.  So many memories are hazy and out of focus.

I’ve always believed (Positively?  Naively?)  that my brain simply uses a seizure to reset and clean the hard drive that is my brain.

But tonight, as I cuddled and read to my beautiful daughter, I felt the tears well up again!  It occurred to me that a seizure may delete these precious moments from my memory.  I sat there and kissed her forehead and committed that moment to memory.  I silently promised her I would do everything in my power to never forget.

Agatha-Christie

Image:  http://www.myincrediblewebsite.com/agatha-christie-on-a-mothers-love/

Keep On Keeping On

I love being a mum.  She inspires me to be the best version of me. Her very presence has taught me about what really matters.

My daughter was conceived with the miracle help of IVF and born via an elective C-section.

I highlight the C-section, because of the wide-spread shaming of women who elect a C-section.  We make these major decisions based upon the health and wellbeing of our families and no one outside of that family has any right whatsoever to comment.

A C-section for me alleviated the concern that stress and fatigue would trigger a seizure during delivery.  I could never forgive myself for selfishly insisting on a ‘natural birth’ if I hurt my daughter in any way.  To be honest, it never really crossed my mind to do something so stupid.

I breastfed my daughter.  I take Keppra and Lamictal which has minimum transference through breast milk and the National Breastfeeding Association Recommends that you breastfeed for a minimum of six months. So that was my aim.  I was warned that this might be difficult given that fatigue is a major trigger for my epilepsy.  To say, I was adamant and little dismissive of their advice is probably an understatement.

When my daughter was two months old, I had a serious episode.  Or at least that is what my specialist described it as.  I call it three major grand mal seizures one after the other that had my family thinking my life was over.  I was in bed breastfeeding my little girl when the first one started. Apparently my arms stretched out straight as if I was somehow, unconsciously passing my child to her dad. But in reality, it sent her flying into her dad’s arms.

***

Before I became a mum, I didn’t understand the true reality of epilepsy.  If I had a seizure, I always new it was because of something stupid I did or of ignoring the signs – like being stressed and run down, and not getting enough sleep.  The consequence of not being able to drive for a few months was really the motivator behind my seizure-free life.

But when your decisions impact the safety of a child who grew inside of you for nine months, nothing could be more life-altering.  I wanted my independence to be a great mum, but also shuddered at the possibility of drowning her in the bath because I had a seizure…

It really changed my attitude to epilepsy.  Before, epilepsy was something I rebelled against; I was always out to prove that it didn’t impact my life.

Now, epilepsy is something I have.  It doesn’t stop me from living a full life, but I now think more carefully about how I do things, the timeframes within which I can achieve them, and it helps me know when to stop or take a break.  And I admit, it makes me feel like a crappy mother quite often.  But so you know, with a little help, I started to express and her Dad began giving the night feeds.  My daughter was breastfed for ten months!

Now it isn’t just about me. It is about my ability to always be there for my little girl, to not leave her father alone, and to enjoy every moment of our lives together.

It’s no longer a war with epilepsy, it’s a lasting relationship.  I’m not saying we are friends, but I am saying that I have developed a respectful understanding of epilepsy and a working relationship with it.

So why has it taken me so long to add to my blog?  Honestly?

Firstly, I have been truly enjoying being a mum, a doctoral student, and domestic goddess.  I haven’t been missing full-time work one little bit, but have been relishing doing bits and pieces of contract work.  I have been too busy enjoying this new adventure with epilepsy and selfishly, haven’t thought of the value of sharing my experiences.

And finally, I truly love reading positive stories of mothers succeeding, but I am getting increasingly frustrated by incredibly ignorant and judgmental attitudes of other women who clearly have no idea what it means to acknowledge the impact a hidden disability makes on our lives.  And don’t get me started on their opinions about IVF, or decisions people make about reproduction, termination or having more or any children.

In a society where we are dealing with sexism constantly, it would be nice if women could stand together in support of one another, irrespective of our individual beliefs, but empathetic to the individual choices we each need to make for our own and our family’s wellbeing.

So I’m putting my story out there.  I am a mum who has epilepsy.  I’ve already had to jump through the hurdles of IVF and now I’m learning that I am not invincible.  It is a hard pill to swallow, but I reassure myself that I am a better person, wife and mother because of it.

I know my daughter will grow up knowing how much she is loved.  And I want her to know that adversity is not the end of the world; that what doesn’t kill you, makes you stronger and more compassionate.

So I share this with you in the hope that perhaps on those down days you will remember this and continue on keeping on.

MJ