Wednesday, August 31, 2011

The Power of Love and Support

It's almost 4 weeks since my baby girl had her first seizure.  I still don't like them...naturally.  Who could say that they like watching their child's body racked with spasms that they are powerless to control?  It's been an odd few weeks.  I've had feelings of fear.  Fear of the seizure, fear of the unknown and believe it or not there have been times when I have experienced fear of Ayla.  I know that sounds really quite strange but when you don't understand something and you don't know how it will show itself or when, then fear seems like a completely normal reaction.  Isn't that the way it goes with spiders and snakes??  We don't really understand a lot about them but we know they can bite and make us sick.  We just don't know when or how or what will set them off.  Doesn't seem so crazy now, does it?

I've experienced anger too.  Anger at the Polymicrogyria mainly.....ok, maybe a little anger at the universe too but that way no-one feels left's all encompassing.  And along with anger always seems to be frustration.  Those two seem like pretty good buddies.

But then I look around at all of the amazing support that we have had.  I know you have all felt that you wanted to do something to help....but honestly, you couldn't.  Not physically anyway but we have felt your love and support and felt that you were all right there for us if we needed to call.  There were 3 things that picked me up off the floor.  My Mum (but you probably knew that!), a text from my cousin Bec, who managed to say all of the right things and support from somewhere that, although I knew they would be supportive, I didn't expect the level of support we received and I could never have imagined how that support was going to change my feelings and my reactions to a seizure.  That support came in the form of a 1 hour audio file from ABR's founder and Champion to hundreds of families of children with disability across the globe.  Leonid Blyum you are an amazing man.  You have created a therapy for our kids that truly works, you devote your life to bettering that therapy and bettering our kids lives and through your audio file for 'Team Ayla', I came to truly understand your depth of care for our kids and their families.

Leonid's audio file allayed my fears of seizures by helping me to understand them and to understand exactly what has been happening for Ayla in the lead up to her first seizure.  He reminded me that in reality, nothing has changed.  Yes, she's having seizures....but we always knew that it could be part of the picture.  But nothing has changed.  We are still her carer's (Professional Carer's, as Leonid likes to call us), she is still our child, she still needs help with absolutely everything.  The seizures just extend our role as carers.  Leonid also validated everything that Steven and I had put into place for Ayla.  We know Ayla better than anyone and although we were suddenly part of this crazy new world where we had little to no understanding, we still knew her best.  We took a few steps back, wound down all the craziness of our lives, encouraged rest and napping with Ayla, took some time off school and nurtured and nourished her.  Leonid confirmed our methods by saying that we needed to step back to 'baby time' with Ayla for a while.

So, in the last few weeks we have taken that dreaded but necessary step toward medication for Ayla but we haven't left it there.  I'm throwing absolutely everything I have at this sucker.  I've done my research and I'm treating Ayla as if she were any other patient that I see in the clinic.  I have put her on Anti-convulsant herbs, supplementing minerals that are known to be depleted during seizures and she has been on a new nutritional program (the GAPS diet) for almost 3 weeks now and she's thriving on it.  She loved her food before but now she LOVES her food!  In the last couple of days we have seen some really positive changes with Ayla's daynaps lengthening back toward her usual 2-3 hours (25 minutes was all she could do once the seizures started), the seizures are changing and even skipping a day here and there, and this morning....she slept in!!!  Let's hope she no longer feels the need to greet the birds as the waken each morning.  She's looking more rested and relaxed and is back up to mischief again.


S said...

Oh, my hearty feels so much lighter to know yours is a little lighter too. much love x

Melissa Luxmoore said...

Thanks Shan. Little by little, bit by bit :)

Adriana said...

Yes, its true. Love and support is so powerful. Don't loss hope. Be at her side always. Don't give her up.