Monday, January 6, 2014

Snow days, how you challenge my sanity

Snow days.  No school today or tomorrow.  Hopefully they will go back to school on Wednesday.

I posted on Facebook, yesterday, a "thank-you" to Mother Nature for the timing of this Polar Vortex (that's a meteorological term I guess). Snow days are to be expected, but two of them in a row after my kids have already been home for two weeks on Christmas break is not cool.

To which post, a teacher-friend of mine commented that for teachers, these snow days are like a two-day miracle before having to try, for eight hours, to keep our cabin-fevered children sitting still and learning.

Okay, I guess she has a point.

However, let me make these points:  She gets PAID.  Yes I get it that teachers don't get paid enough, but they GET PAID.  Stay-at-home-parents?  No, they don't get a paycheck or benefits or paid time-off ( yes, yes, I know, they "get paid in kisses and hugs" but, have you tried to pay your bills with that? Or buy groceries?).

Also, teachers have evenings, weekends, summer breaks, Christmas breaks, and spring breaks to recover from the hours they spend with our children (and I would hope they actually enjoy the job they chose and for which they get paid - otherwise, why keep doing it?). Stay-at-home-parents have NO automatically scheduled vacations or breaks.  The only "break" I get from my 24/7 stay-at-home-mom job is when my kids are sleeping, and when they are at school...IF they have school.  Believe me, teachers, our kids are home and in our care MUCH more than they are at school.

So, forgive me for being a little frustrated that my list of five dozen to-do's isn't going to get done, or even started on, today.  Even as I sit here and write, my younger daughter is sitting in a chair right behind me, waiting to get on the computer (which she of course thought about doing ONLY because I said I had things to do on the computer. Grrrrrr. And I have to turn the computer screen so she can't read over my shoulder.).  Forgive me for wanting JUST A LITTLE TIME TO MYSELF, to sit and do something without being interrupted.  Sheesh.


Saturday, January 4, 2014

Because, you know, life was boring

FOR PETE'S SAKE. Seriously???

If you've read any of my past posts, you may know that my younger daughter Sophie was diagnosed with Prader-Willi Syndrome shortly after she was born. She will be 10 years old very soon, and it has been an interesting, educational, tiring 10 years. The next 10 years should prove to be even more..."educational"...if the stories from other PWS parents are any indication.

So, because life is wholly unpredictable, and because really, who wants their life to be boring and without incident, my older daughter K has just been diagnosed with "Primary Generalized Epilepsy". Wanna know where she was when this diagnosis came about?

She was a gazillion miles away, on a school orchestra/band/choir trip to Orlando, Florida. Talk about a phone call you never, ever want to get at 11:15 p.m. when your child is that far away and experiencing something that must have scared the cr@p out of her. She was in excellent hands, though - the orchestra director was on the trip, and accompanied her through the entire experience of two hospital trips and an EEG which conclusively dx'd PGE but triggered another seizure another seizure in the process.

It hurts my heart to think about my beautiful, smart, funny girl having a seizure, even when there are 3-4 highly-qualified doctors right there to help.

Sorry for the swearing but, honestly, it has been a shitty couple days. K has been dealing with severe anxiety since March of 2013; having dealt with that and turned a corner with it through meds and counseling, now she has this to accept and understand and live with. Certainly she should gain confidence from this experience! Heck she made it through this trip and the seizures and the hospital stays without her parents being physically there with her...IMPRESSIVE, without a doubt. I wish this trip had happened and finished without this added detail? Most definitely.

Here's hoping that 2014 does NOT become "The Year of The Bad Keppra Adventures". :-/


Friday, January 3, 2014

Okay, okay, I'll write something!

It's 10:38 here in my world, and to be quite honest, I don't feel like writing.  But, here I am, and yes I marched myself up here to the computer in the chilly dormer room although I would rather be under my favorite blanket reading a book. I'm not sure my writing effort for today will be worth reading, but National Blog Post Month (NaBloPoMo) will hopefully be a great way to make writing every day a habit, however bad the product may be.

So today's "prompt" is this:
"Friday, January 3, 2014
Do you have a tendency to procrastinate, or do you like checking things off your to-do list?"

Hmmm.  Can I answer this tomorrow?  Just kidding.  I have made many to-do lists in my life.  For some reason, they don't work. Possibly because the act of writing it all down feels like enough of an accomplishment and the pressure to actually do those things is no longer there? Or perhaps I am overwhelmed by the list? Actually one thing I have done, which seems to help me be able to actually check things off, is write just three of the most pressing things to do for that day on a post-it note. Preferably a brightly colored post-it. I tried this one day, and I will say that by the end of the day, it felt pretty good to have checked off those three things and thrown that note away. A smaller list, written on a smaller piece of paper...much less daunting perhaps.

However, sometimes it doesn't matter how many to-do lists I write or where/how I write them, because being a stay-at-home parent means that your "plans" for the day - any day - are largely meaningless.  IF I am able to accomplish something, anything, I count it as a mark in the "win" column and pat myself on the back.  For instance, today I didn't have a plan for the day - other than going out to get dog food, which didn't happen anyway because my older daughter was just diagnosed with "primary generalized epilepsy" and is still getting used to her medication, and I didn't want to leave her home alone. So, Sophie helped me take down the Christmas tree (taking lights out of a Christmas tree = #4 on my list of the most irritating things on earth), and I also vacuumed the first floor and upstairs. Definitely a pat-myself-on-the-back kind of day. Of course, in the process of putting the tree away, I added an item to my to-do-at-some-point-in-the-future list: throw out every freaking thing in the attic...


Thursday, January 2, 2014

Well, heck, it's January 2014

2013 absolutely flew by.  And the past three months - or, really, the past 6-8 months - have been somewhat grueling, emotionally. So I am more than happy to start a "new year", even though I know it's just a change in the date.

I don't really make New Year's resolutions, but I do tend to look ahead and think "what would I like to accomplish in the next 12 months?".  Of course I have a long list of things I have put off doing which I'd really like to get done this year. But since I am not an "island unto myself", and I have children/pets/a husband, I refuse to put too much pressure on myself to Get All The Things Done That I Should Have Done days or months or years ago.  I know even if I lived alone and was not married and did not have children or pets, I would still be putting pressure on myself to do this-or-that - and for what?  Going around with a brain full of pressure and I-shoulds and I-musts is largely unproductive, I think.  It just puts so much stress on the brain that all I feel able to do is, well, sit down and think about everything I should be doing.

One thing I would like to do, though, is make writing a regular part of my weekly schedule. I announced publicly (on Facebook, which for me is somewhat similar to announcing it over the intercom at the local grocery store) that in 2014 I wanted to write more.  Of course, I didn't say what I would be I guess I could be sneaky and clever and just write some neatly-worded to-do lists every day, or put out some pithy and rich Tweets or something.  But, I am aiming to do more/better than that.  I joined up with "NaBloPoMo" for January, which stands for "National Blog Post Month".  Technically this is a November activity but it actually happens every month. It means I am supposed to put up a blog post every day in January.  Obviously, since it is now January 2, I am already a day late.  Oh well! Whether or not I like it, sometimes my efforts to write more this year will just have to take second-place to responsibilities like laundry and grocery shopping (and today, shoveling the driveway possibly). Such is life!


Saturday, November 9, 2013

The constant heartache

I really try to "stay positive" and "look on the bright side" and "count my blessings", all that good stuff. I do.  And if it seems like every time I write in here, I'm NOT happy and I'm not positive and all that...well...that's tough I guess.  If you want constant happiness and bubbles and recipes and pictures of kids playing in beautiful piles of leaves, that's not this particular blog.  If I run across one like that I'll let you know.

Anyway.  Yes, most days I am thankful for lots of stuff.  However it is also true that I am pretty much always walking around with a constant heartache.  You know what causes that heartache?  It's being the parent who is the near-constant observer of all those times when my daughter-with-a-diagnosis, who also shows no obvious signs of having a diagnosis, tries to participate in activities with other children who truly don't have a diagnosis.

For example?  Today was Observation Day at Sophie's dance school. This is where the parents can come into the dance room and watch their kids' class (ordinarily we are waiting out in the lobby).  And for me, this is such a mixed blessing. Today it was a little less blessing and a little more heartache.  Sophie will never have the muscle tone or the gross-motor coordination necessary to truly participate in ballet classes.  I am thankful that this dance school is not so serious that they really mind that, right now; however, it is also a heartache to watch my girl try to keep up with the moves and what the teacher is saying.  So, YES I'm thankful that this dance school is, thus far, accepting of what Sophie can do - but, at the same time....I'm not stupid, nor am I someone who ignores reality.  And the reality is, at some point, Sophie will no longer be able to actually take dance.  Yes I know there are other options, and other activities that might be a better fit.  But this, right now - THIS is just another manifestation of this constant heartache.  I suspect this is something that all special-needs parents experience on a moment-to-moment basis, even as they are trying to put a brave face on things.


Saturday, September 7, 2013

Losing "normal"...again

When my younger daughter was diagnosed with a complex, frustrating genetic syndrome shortly after she was born, part of the adjustment process was accepting that her life would probably not follow what most of us would consider a "normal" path.  Because of the demands that the syndrome would place on her, and those caring for her, those "normal" things that most of us take for granted - "typical" experiences in school, participation in childhood activities, relationships with other kids, expectations of further education/full-time job/marriage/kids - might be extremely difficult, if not impossible, for Sophie.

So, okay.  I've never been someone who felt that the only way to be happy and live a good/fulfilling life was to do the "typical" stuff (even though my own life looks pretty typical).  So Sophie will still have a the best life we can manage for her, without making lots of dire predictions.  Okay.

Well, it is September of 2013, and guess what?  I find myself once again having to accept the loss of "normal" - not in relation to my younger child, but this time with my older daughter, K.  She's 14 now.  She has been experiencing severe anxiety since earlier this year. We are trying a combination of medication and counseling for her.  It is a process, and it takes time.

She is supposed to be a freshman in high school.  I say "supposed to be", because she has only been in school for a full day one time - the first day, Aug 21 - because being there for the full day is not possible yet for her.

There are several experiences going on, here. There is her experience, of course; she is fully aware of and concerned about how much school she is missing.  She misses her friends.  There is an orchestra trip to FL that's happening over the holiday bread in December; I'm sure she is aware, as am I, that if she doesn't start to feel substantially better and get through complete days and weeks of school, she won't be able to go on this trip.  She knows this is not a great way to start out a school year.  So having those realities running through her head probably isn't too helpful - more stuff to be anxious about, on top of what she already has.

Then there is my experience, as her mother.  I never thought of myself as a high-pressure parent.  I'm not a parent who is stuck on having her kids make straight A's, go to some high-falutin' university, and conquer the world.  At this point, though, I am having to once again reconfigure even the "normal" that I had assumed was possible, obtainable, expected for my typical, no-diagnosis-necessary (I thought) older daughter.  She wants to do things with her friends - but at the moment and for the foreseeable future, she finds it daunting to even leave the house, which means that all those fun activities kids her age do - going up to the mall, going to the football game, going to Homecoming in a few weeks....may not happen, because of this anxiety.  She spent the summer, for the most part, in her room.  I would have taken her and friends to the mall, to the beach - but that would have meant leaving the house.

I feel like I have gone from having one special-needs-child with an adjusted future, to now having two kids who are having to deal with diagnoses that take them down some different paths.  Some "not typical paths".  And you know what?  Even though I have been through this once before, this process of having to reconfigure what "normal" would look like - this STILL SUCKS.  It just does.  I am already tired of watching everyone else's typical kids freely do things that Sophie finds impossible.  And now, with K, there is once again the absolute heartache of wondering what her high school years will be like and if there will be the same measure of good things in these years as there is for other kids.   I just would like those years to be, well, "normal".  I am still hoping for the best, I still know that treating this anxiety will take time, I know I must be patient, I know that what happens for her in the first few months of high school doesn't necessarily set the pattern for the whole four years - but, I still HATE this.  I hate this for her.  It still sucks, and it's not fair, and I hate that my kids have to struggle just to do the things that other kids seem to effortlessly do.

Sunday, July 21, 2013

The "slippery-slope" of gene therapy

First, to understand what I'm talking about, read this article:

Here is one quote from the article (but, you should really click on the link and read the whole thing):

"Gene therapy has already been used to treat medical problems that result from the presence of one defective gene, but this is the first time that silencing the impact of a whole chromosome has become a possibility."

The news in this article has been shared and re-shared by a good number of parents of children with PWS, on Facebook.  It is definitely exciting news; while the possibilities of gene therapy have been researched for some time, this particular development is one that really resonates in the PWS community.  There is a variety of PWS with which this possibility of turning off - or even turning on - a chromosome or parts of it is especially important: those children who have PWS by uniparental disomy, meaning they have two X (maternal) chromosomes in the 15th pair.  

I can't possibly get deeply into the genetics of this - I'm relatively smart but I'm not a geneticist.  What struck me as I read this article wasn't the miraculous science of it all.  Rather, it was the moral and ethical ramifications of this development that would be faced, I think, down the road.

Does this ability to turn off that extra chromosome - would that mean that when in-utero testing is done, and the tests come back as definitely positive for Down's syndrome, that then the parent(s) would be able to make a choice about their baby?  And by choice I mean, would they then be able to choose to still have the baby, but it would be a baby whose genes had been genetically modified so that they no longer had Down's Syndrome?

If this plan of action became available - what would society feel about parents who chose NOT to have their unborn child's genes genetically modified, and they thus chose to go ahead and give birth to a baby with Down's Syndrome?  If humans develop the ability to fiddle with who the next generations fundamentally are - their genetic makeup - where does that stop?

I would say that pretty much all the parents/caregivers of individuals with PWS would be in favor of their child/family member not  having this frustrating, complex syndrome.  I'm just not sure if we all really want to condone "genetically modified humans".  I do hope that research can silence the hyperphagia for my daughter and all those with PWS...I also think, though, that being able to orchestrate a syndrome-free or disease-free human may have some troubling ramifications.