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Posts Tagged ‘Epilepsy’

For a long time, I’ve thought that I’d like to get this blog going again, but something is always in the way.  Still, I feel the void left by not having this outlet that I used to have during my darkest years.  For all my years struggling through infertility, this was my place of solace, of solidarity with other (far more clever, witty, intelligent, and strong) women going through the same journey, albeit each with our own paths.  Even after my children were born, I found joy in documenting all the little firsts, the struggles, the joys.  But the realities of my life started to make me feel too heavy to make my fingers move across the keyboard with quite the same regularity.  Until, one day, my cathartic blog posts became so infrequent as to stop all together.  Life as a special needs mom, life as a chronically ill mom, life as a disabled ex-professional-turned-homemaker… I couldn’t bring myself to write much more than quick, smarmy FaceBook posts about it – brushing off the challenges as hilarious little vignettes in the screenplay of my life.  But without the catharsis of this process of journaling, no matter how many people support me, I too often feel alone with the challenges we face, when I know from experience I most certainly am never alone.

So, this is me.  Wife, mother, sick person.  Unabashed advocate for the needs of my children – who are all special, though some are more needy than others.  If you don’t remember me, well, that’s because I wasn’t that memorable, or well-known in the first place.  Let me reintroduce you to the cast of characters in my adventure.  Maybe next time I’ll throw in some photos, but mostly I don’t want to put that kind of pressure on myself just yet.  I just want to write and see where this takes me.  So … the cast of characters:

The J-Man: Not really a current cast member, but an alum who never leaves my thoughts very long, so I feel the need to mention him since he is bound to appear periodically.  Our first son, the J-Man came into our lives when he was a year old.  We were asked to foster him for a year, but we had him for nearly seven.  At the time that his genetic donor (I can’t bring myself to call her his mother anymore) called me and said she wanted him back, we hadn’t heard a single word from her in over four years.  It was a shock.  We spent a year litigating to ensure a safe, secure, and emotionally sensitive transition from our household to hers.  But I recently found out that he’s not even living with her anymore.  As I understand it, she can’t stand the sight of him, so she dumped him on a relative.  When I found that out, I stopped calling her his mother.  *I* am his mother.  I always was and always will be, even if I never see him again.  We have no contact with him.

Sam-a-lama-ding-dong: (he hates when I call him that, so I try not to do it too often).  My vroombunctious 9 1/2 year old boy.  He is so many things that it feels inadequate to simply mention his diagnoses, but I would be remiss in failing to mention that he is autistic and has ADHD.  He probably is also bipolar or at least has some sort of mood regulation deficit.  But none of those things are who my son is.  He’s sweet and kind, funny, though he doesn’t always mean to be.  Rigid, but working on it.  Smart.  So smart.  He’s just a kid in all the ways that matter.

Ellie-bean:  My sweet Ellie is also 9 1/2.  She’s smart and curious and chatty and considerate.  She is filled with empathy, quick to laughter, extremely thoughtful and has 87 questions about everything.  She and Sam have a particularly close bond, which is such a joy.  Ellie has pretty severe asthma, but she never lets this get her down, so I don’t either.

Abba-Dabba-Doo-Bah:  My other 9 1/2 year old (yes, they’re triplets.  No, they aren’t identical.  Yes, they are natural – they aren’t made out of a space aged polymer.)  Abby is ALL of the feelings.  She’s funny and sweet, but moody and sad a lot of the time.  She is quick to laughter, impulsive and very in-the-moment.  She doesn’t dwell on the past and isn’t bogged down by worry about the future.  She is simply carried by her particular mood right here, right now.  Sometimes that makes life particularly easy for her, but othertimes it means she’s stuck in a sea of confusing emotions.  Complicating all of this is that in addition to having ADHD, she has what is called “Treatment Resistant Epilepsy” (or intractable epilepsy).  She is the reason I’ve decided to restart this dusty old blog.  Our path toward trying to treat her epilepsy has been a difficult one and we are about to embark on the next leg of our journey by enrolling her in the medically prescribed ketogenic diet program in hopes of finding relief for her and hopefully improved quality of life for all.

The Tobe-ster (Tobie):  My 7 year old demon-child.  She gives the best hugs and smooches and is still super snuggly. She’s the only one who still wants to be tucked in at night and only Mommy does it right.  She’s self-assured and bossy.  Quirky and fun.  Happy as long as she’s getting exactly what she wants every minute of every day.  She is… special.  She’s 7 going on 17 going on 27.  She doesn’t like to work too hard, but she does love to play hard.  There’s nothing that delights her more than dirt and puddles.  Except, perhaps, mud puddles.

Seth (no nickname): Husband extraordinaire.  Pharmacist.  Father of the Year.  Seth just started a new job that takes him away all week so he’s only home on weekends, which makes some of this stuff even more daunting, but he is always there when I need him (just sometimes via phone instead!) and he is a very present father despite his current employment situation.  I’m grateful to have such a wonderful partner in our parenting adventure.

The Plot:  Over the last several years, there have been a number of times when things have been so funny or joyous or challenging that I’ve had invisible posts written in my head that never make it to the cyberspace version of paper.  But now, we are about to take on a new challenge – one which will test us in new ways.  We are about to enroll Abby into a medically prescribed ketogenic diet program.  This will require a significant lifestyle change for the whole family, but most especially for Abby and for me.  The impact will be felt by us all, though, and I feel that I would be doing our family a disservice if I didn’t document the journey and use this as a resource for working through ALL THE FEELINGS that come along with such a complex and overwhelming path forward.  I doubt the blog will always be about the diet – I have three other complex kids and a difficult medical condition of my own, so I’m sure there will be much of those things as well.

I hope that ultimately I’ll find this space to be a positive one, but for the moment, bear with me as I work through all the feelings I’m experiencing right now.  I admit, most of them aren’t positive:  fear, worry, anxiety, etc.

But … for the first time in a long time, there’s hope as well.

More to come!

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