Quarterly Update

I have basically given up on the whole blogging thing, but just in case there is somebody who still wonders what is going in on with Hope, I figured I’d add this little update.

the girls, in a happy moment just before getting their shots for school :0

Hope turns 3 on Friday.  We’ve had a ton of doctor’s appointments over the last 6 weeks as we get ready to transition out of early intervention and into the realm of the public school system.  Yesterday we had Hope’s first IEP meeting and were very pleased with how things went.  The assessment process leading to the meeting was very thorough and consisted of several observations of Hope, both at home, at EPU, and at the school itself by representatives from health, speech, preschool, and psychologist’s office for the school district.  Not sure what to expect, we were pleasantly surprised at how thorough and accurate a picture of who Hope is these observations managed to generate.  Hope qualifies for special education services and will begin preschool in a special-day preschool class as soon as next Monday.  I have an appointment to go visit the potential class this Friday morning, it is not at our “home” school – however it is probably exactly the same distance from our home as our home school is, so in that regard, it couldn’t be more convenient.  It is a five day/week program for 2.5 hours a day, and she is also eligible for a summer program so that she will not have to go three months without services during the summer. Continue reading

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The Race in Review

I’m going to go ahead and do this now, because I am fairly certain that tomorrow I will not be able to move at all.

I finished my first marathon today in 5:26:something.  You can see me crossing the finish line (time on the clock — 5:27:17) here.

Continue reading

Posted in Running | 4 Comments

Putting in on the line…

Okay, all joking aside — here is the real deal….

Why am I running in this marathon?

Mama needs a win.

That probably doesn’t make a lot of sense to you, but it means everything to me.

The last two-and-a-half years have been tough.  Putting aside for a moment the medical issues that we have in store for us with Hope, having two kids — two toddlers — is just a heckuva lot harder than I thought it would be.  Being a mom is harder than I thought it would be.  I was so good with Grace those first 21 months, we were on the same wavelength and all that touchy-feely, motherly-instinct stuff was totally working for me.

Then came the terrible twos.

Then came number two.

Then came Prader-Willi.

I lost myself along the way.  Before Hope I identified not just as a mom, but as a good mom, one of those really “in tune” moms that reads to their kids all the time and takes them on educational outings all the time and makes all their food from scratch.  After Hope things got exponentially harder — again, putting aside the PWS and all of its issues — going from one kid to two kids was not just simply doubling the work.  These are two people growing and developing at two vastly different rates and styles. They also happen to be the two most important people in my universe and suddenly discovering that the old saying “you can’t be all things to all people” applies to motherhood too…well, that was a tough one to take.

Now factor in the Prader Willi and the effect that had on me.  I’m not trying to be melodramatic or overly critical of myself, I think that saying that the diagnosis shattered me into a million tiny pieces is a fair and honest assessment of what happened.  You don’t just pick yourself up, dust yourself off, and carry on after something like that.  It takes time, and a lot of it, to get back up again.  And even once you’re back on your feet, you have to learn everything all over again…first you crawl, then you stand, you take a few steps, fall a lot, but eventually you walk more than you fall and then one day you can even run.

Which brings us to the marathon.

I’m not the mom I was three years ago, I’m not the same woman, I’m not the same wife.  Truthfully, I’m still trying to figure out just who I am now and most of the time I feel a lot more wobbly on my feet than I let on.

I started running because I needed to lose weight.  I need to live a healthier lifestyle.  I need to live a long time, or at least try and do what I can to improve my chances.  It’s brutal to say it, but it’s the truth, I started running because maybe that way I will outlive my baby girl and I won’t have to worry then about what will happen to her when I’m gone.

But there isn’t any rule that says if you run, you must run a marathon — no, that was more selfish on my part.  I’m running this marathon for me.  I used to be a planner, one of those super-organized people who had the future all laid out and worked toward the long-term and short-term methodically.  I loved day planners and calendars.  I really liked that about myself.  Having two kids greatly reduces the opportunities for me to make plans, having one with special needs — pretty much eliminates them altogether.  Though I am sure it works for some people, the “take it one day at a time”-approach has never appealed to me and yet it has now become the only way I can live my life and it’s frustrating.  In my past life, my planning life, all those little to-do lists, charts, tables, “life-syllabi” I used to create were just as much about security as planning.  They helped me to feel prepared and in control of my own destiny.  Now my life is chaos and it makes me feel vulnerable and insecure.

So I decided to sign up for an 18-week marathon training program.  Four runs per week, three of them trainer-led group runs.  There’s a table of all the workouts.  Each workout is different, with it’s own little list of to-do’s.  I could have a calendar, checklists, and a game plan.  For 18 weeks, in this one little aspect of my life, I’d be able to plan and work towards something.

Truth be told, Thursday I did my very last training run and I felt more accomplished that night than I think I’ll feel after I finish the marathon.  The marathon is just the icing on the cake.  For the first time in a really long time, in at least of sliver of my existence I’ve been able to reconnect with that determined, focused person I used to be.  I had a goal, I followed the plan, stuck with it and surprised myself along the way that this running thing actually suits me.  I think about running now the way I used to think about cooking, I’ve found a new passion for the new normal.  Running “centers” me and gives me sense of confidence and balance that is good for me, and hopefully will trickle over into my other roles as mother and wife.

That’s it.  That’s why I am doing this.  It’s my way of taking some control back and daring myself to be the best version of myself I can be.

Oh God, I’m channeling Oprah aren’t I?

Well, who cares — Oprah finished her marathon, and so will I.  Come Sunday, mama’s gonna get her win.

Posted in Postcards from Holland, PWS, Running | 4 Comments

Tapering is hard

I would like to punch a kitten.  I am so irritable.

Tapering is hard.

On the bright side, I decided what I want to eat the day before but I’m not going to tell you because I’m just that pissy right now.  For dinner after the race I want a Me ‘n’ Ed’s Classic Combination pizza and I’m not going to take any crap about getting sausage on my pizza.  I might get an Italiano too, just for variety.  Also, I want beer– Samuel Smith’s Nut Brown Ale–lots of it.

I don’t want to talk to you anymore now.  Grrrrrr…..

Posted in Running | 1 Comment

The Home Stretch

It’s less than a week away.

I spent the morning writing down my expected/ideal time splits at each mile and where I’ll be along the route so my mommy can find me.  I also marked where I should take Gu and when I should be finishing bottles of Gatorade.

I know what I am wearing: my compression shorts because my thighs still need to be compressed…like sausage; my Pinnacle wicking tee (unless it looks like it’s going to warm up, then I’ll wear the singlet…but I don’t want to risk getting too cool on the course since now I know that cold boobies are my Kryptonite); my Balega socks (unless it’s raining, then I’ll wear my SmartWools); the Asics Gel-Nimbus 12; my Addidas hat (unless it’s looking really warm, then the Zoot visor) and my Target running bra (purchased before the boycott).

I’ve decided to carry a water bottle with Gatorade because I just cannot get the hang of running and drinking at the same time, and because I am a little paranoid about having to deal with congestion at the water tables.  I figure it’ll just be less stressful to carry it, at least part of the way — plus I can stuff it full of Gu.  I think I can fit 3 Gus in the pocket and carry one.

Gatorade flavor: Lemon-lime

Gu flavor: Just Plain

I’ve been working on my pre-run routine for several weeks now.

4:00 am: rise and shine (thanks to the time change the day of the race, it’ll feel like getting up at 5am).  Turn on Spirit of the Marathon.

4:15 am:  breakfast–pancake with raisins, banana, & macadamia nuts, syrup and 20oz of Gatorade.

4:30 am:  Start rubbing Voltaren Gel on pretty much everything.

5:00 am:  Apply anti-chafing and anti-blister substances.  Shoes on.

5:15 am:  Visit the potty.  Make “it” happen.

5:30 am:  Maybe a little active stretching.  Or maybe I’ll just vomit.

5:40 am:  Out the door.

I haven’t quite hammered out what I want to eat the night before or after the race but I’ll figure that out later since I’ve managed to make myself nauseous just writing all this stuff down.

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Tapering Blues

I’m about halfway through the tapering period before the marathon and I’m totally bummed out.  I am always depressed a little.  It has been more overcast this week too.  And I’m not running as much, still four days, but much shorter runs.  The combination has created a perfect storm of “tapering blues.”  I may have just made that up.

No, I didn’t.  Google says 400,000 other people came up with it first.  Oh well, at least it’s a real thing.  I guess I can add that to the black toenails, runners trots, boob chafing issues, and blisters that I have managed to earn a runner’s badge in.

Yeah, so I feel crappy.  I haven’t had a really long run in 12 days.  Haven’t done a structured workout in over a week, all the runs this week were just “easy” runs…no tempo, no intervals.  In fact, between now and the marathon I have only two more runs — a 5miler and a 2miler.  Today’s run was the first though where I started to feel the beginnings of “recovery”…all my other runs after the 22 until now were still pretty tough (even though they were supposed to be easy…fatigue does that).

But mainly it’s just the blues that have me down.  I’ve got to pull it together though, the first thing to tank when I get down is my diet.  I’ve had practically no appetite this week — which is kind of good, since I’m running less I should be eating less — I don’t want to gain weight before the race.  Still, I need to eat something decent but I just don’t know what I want and even if I did, I lack the motivation to do anything about it.

The lovely part of having tapering blues is that the blues don’t just confine themselves to the whole running thing…no, they run amok the rest of your life.  So I’m feeling bad about just about everything.  With the school year back in full-swing, I hardly ever see my wife.  We’re like roomates.  She has a cold, so we’re not even sharing a room now because if I get that cold this week before the marathon I’m going to go apeshit.

I feel bad about my kids.  They are bored with me.  Grace is so smart and so energetic, I just can’t keep up with her and it disappoints her.  I disappoint her.  She looks at me with disappointment in her eyes and I just feel like crap.  Hope on the other hand is so calm, gentle, and easy to please.  She never looks disappointed in me, but she doesn’t have to.  As I rush around trying to keep up with her big sister, Hope just watches and plays with her dolls contentedly until I have a moment for her.  When I do, she climbs into my lap and holds onto my neck as if to say, “now you’re mine, don’t let me go.”  Those moments never last long enough.

I don’t know how stay-at-home moms do it.  I don’t know how working moms do it either for that matter.  I’m know that there are groups out there for stay-at-home moms, but I’m antisocial.  I don’t make friends easily.  Fifty percent of my friends recently moved away, so that’s not helping matters.  I would like to go see them, but I am broke because I spend all my money on Gu.

Now I’m bored too.  I was okay a month ago when I was all “book crazy”.  Now I have no desire to read.  None.  I don’t even want to go to the bookstore and “browse” or maybe try an e-book.  So I spend my days alternating between disappointing and neglecting my children.  While they eat or nap I access the outside world through Facebook or the Internets only to discover that the whole damn country has gone batshit crazy and that I have officially reached the end of my rope with religion in general.

When I can’t take reality anymore I play Angry Birds until I am angry, then I try to watch some tv.  So basically, to unwind from (or recover from) feeling totally inadequate as a mother I perform a series of activities that are completely unproductive and meaningless and which make me feel even worse.

The only thing that pulls me out of the funk is running.  For now, it’s just thinking about running mostly.  Of course the thinking turns to obsessing pretty quickly, which turns to me fidgeting with my eyebrows and such and oh crap this sucks.

Deep breaths.

One week to go.  This time next week I’ll have my race packet, I’ll be able to pin stuff together and obsess over that chip thingy that’s supposed to attach to my shoe.  In the meantime I just have to get my butt in gear, start eating the good stuff again, and ride this out.

Posted in Running | 1 Comment

A Tale of Two Runs (and other randomness)

Today was a big day: 22 miles.  More significantly, today was the last of the big runs.  Although there are still three weeks until the marathon, from here on out I am tapering my runs — lowering both mileage and intensity each week so that come marathon Sunday I am recovered and rested.  It was a tough run, I felt really good for most of it but somewhere between miles 14 and 15, the cumulative mileage of the last three weeks just kicked my butt.  I still finished the run, in 4:16 — which translates into about an 11:40 mile, which is well under the target pace for long runs and only :40 seconds off my target marathon pace. Continue reading

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There goes the neighborhood

Okay, I have to blog this because it’s too good not to.

We were on our way home today and pulling into our neighborhood.  All of the sudden Grace starts babbling on and on about having “three wishes.” She’s listing all of the things she’s going to wish for with her three wishes…Polly Pockets, fairies, etc….  I’m only barely listening, because I just can’t listen to every word she says if I am going to maintain my sanity.  Just as she says the word “Genie,” I happen to glance in my rear-view mirror in time to see our nice, Sikh neighbor out for his daily walk wearing his customary turban and robes.  I almost peed my pants.

So we’ll be spending the afternoon on this website, because if she asks this poor man for Polly Pockets next time he walks by our house I may die.

Posted in Funny Business | 1 Comment

The Best Worst Run Ever…or so far anyway

Let’s just start with the moral of the story: DO NOT PUT JALAPENOS ON YOUR PIZZA LESS THAN 24 HOURS BEFORE YOUR 18 MILE RUN!

The stats from today’s run kind of tell the whole story:

  • Total distance: 18 miles
  • Time actually spent “running”: 3:35  (mind you, my 17-mile run two weeks ago took 3:06)
  • Time on the course: 4:17 (that’s 42 minutes more than I ran)
  • Number of bathroom stops in the first 10 miles: 6 (or 5, but only if you insist on taking the word “bathroom” literally)

The Good

I finished, dammit.  I had a freaking horrible run but it was a freaking horrible 18-mile run, dammit.  Could I have run another 8.2 miles?  Yes.  It would have included a lot of walking and it would not have been pretty at all and I probably would have spent the last 4 miles crying but I could have covered the distance within the 7 hours that the course remains open. Continue reading

Posted in Running | 2 Comments

4 Children Dead

Seth Walsh.

Tyler Clementi.

Asher Brown.

Billy Lucas.

Someone’s son.  Someone’s brother.  Someone’s grandson, nephew, cousin, friend.  Some were gay, some we don’t know…not that it matters really…what matters is someone thought they might be and that was reason enough to torment them.

Now they are gone, their short lives ended by their own hands.  You and I are left with a world with four fewer sensitive, compassionate, unique souls but where the bullies will grow up and have kids of their own–a new generation of bullies and bigots.

It’s important to remember that the bullies that drove these kids to such desperation that they believed their lives were not worth living do not reside only on our playgrounds and in our locker rooms.  No.  Schoolyard bullies are merely one piece of a much larger and coordinated effort to make life a living hell for anyone who identifies as gay, lesbian, bisexual, or transgendered.

Yes, I said coordinated.  Yes, I meant it.

No, I don’t think that hate groups like the Family Research Council or National Organization for Marriage (or Focus on the Family, or the Mormon Church, which spawned them, respectively) have deliberately recruited an army of adolescent bullies.  But I also don’t believe for one second that the impact that their hateful, deceitful campaigns have on young homophobes is lost on them.  In fact, I’d be willing to guess that at least some of the bullies involved in these four cases believed that they were exercising their First Amendment rights when they degraded and humiliated kids they knew or believed to be gay.  They got that idea from the “poor, persecuted Christian”-rhetoric of groups like FRC and NOM, who are increasingly leaning on an argument of “protecting religious freedom” as justification for their absolutely un-American bigotry, as all of their standard sociological, psychological, and legal arguments are being repudiated left and right.

Still, the blame does not solely rest on the shoulders of the bullies, young or old, but also on the indifferent, cooperative, and cynical.  The blame rests on the shoulders of people who donate to groups like Focus on the Family, the Mormon Church, the Knights of Columbus, etc…and vote for any candidate for political office who opposes marriage equality, job and housing protections for LGBT people, hate crimes laws and anti-bullying measures in schools.  No amount of rationalization, no amount of “well, I like their fiscal policy not their social policy”- bullshit is going to return these four boys to their mother’s arms.

The fact is, it’s not the bullying that kills these kids, it is the loss of hope.  They get to a point where the hell they are in is greater than any future they can imagine — and who can blame them?  In addition to cacophony of hate they hear from their peers every single day, they get to hear the opinions of politicians, pundits, and clergy telling them that they are “less than.”  Every two years they get to watch as the LGBT community is used as a convenient punching bag for campaigning politicians and political strategists looking to ignite the passions of their “base” or raise a few bucks.  They get to listen to politicians promise them hope and change, and then watch them obstinately refuse to even attempt to meaningfully fulfill those promises because it’s not politically expedient to do so.  They get to watch their hopes and dreams of working in the profession of their choice destroyed to settle some partisan score.  They watch the groups that are supposed to represent them throw fabulous parties and galas and then sell them out to maintain the organizations own “relevance.”

The people and places to whom they should be able to turn in their despair are, unfortunately, just as tainted by the pollution of hate.  Three of these kids were school-aged and their bullying was no secret, regardless of what their ass-covering school district administrations are now saying.  Kids knew, parents knew, parents of other kids knew.  Why was no one listening?  Where were the teachers and administrators?  Perhaps we could have found them on Sunday mornings, listening to toxic sermons from hypocritical clergy.  Perhaps they were busy contemplating their purpose-driven lives, or reading devotionals on topics like mercy, grace, and justice.  I hope they get sued blind.  I hope their conscience eats at them every single day for the rest of their lives.

Keep in mind, these are just the suicides we know about.  There are other.  Thousands every year.

These are just kids.  They don’t have jaded cynicism that comes with the life experience of adulthood.  They don’t have the sense of perspective to listen to the news and say “well, same shit, different day.” They can’t grasp the concept of the moral arc of the universe bending toward justice while they’re getting the crap kicked out them or being stuffed in a garbage can.  And we shouldn’t expect them, or ask them, to “buck up” — we can never, ever lose sight of the fact that they are just children and they should be allowed to be children.  It’s our job to protect them, and frankly America, we’re doing a piss poor job of it.

Posted in "The Gays" | 3 Comments