Wednesday, November 27, 2013

Thanks

It's been just about a year since I started doing this regularly, and I thought a little reflection might be good.  The coincidence of it occurring around Thanksgiving is a happy and welcome thing.

First of all, I am grateful to my husband, Lee.  He's given me this enormous gift of our life and our family together, and he's stuck with us through every moment.  I would find it easy to disassociate myself if he had done so, but as we learned at our wedding, this is FOR-EV-ER (Thanks, Father Kevin!) and every day, he stands shoulder to shoulder with me.  Sometimes, it's a metaphoric shoulder-to-shoulder because we're all over the place, but of all the teams I participate on, this is my core team.  Us against it all.

I am grateful for my children, and for their health.  All my boys bring me different kinds of joy, each day.  Seeing lights in their eyes, and smiles on their faces - it just makes me feel right.  I know that the "health" part sounds strange, given the original purpose of this blog, but honestly, my sons are actually quite healthy.  I don't know how long Connor would have made it had he not been to otherwise healthy.  Even on days like the past week when he's congested and his only recourse to remove the congestion from his body is a violent upchucking, he's still solid in the germ department.  And his brothers fight on those lines with him.  They've never had anything more serious than a cold, except when Drew had walking pneumonia and even that didn't seem to do much except exhaust him.  He slept that off - not a lot of coughing or other complications.

I am grateful to my family.  It's likely that most of you know that I am a part of a large family, but for those of you who don't, well, I am.  We are now 11 strong (14 if you count the boyos) and each and any of them pick up the phone when I call.  Last week, when I had a stomach virus and Lee was away, my sister contacted me and offered to come cover me between when our nanny left and when they boys had to be in bed.  No hesitation, even though the last time she was around us and there was a stomach virus it walloped her.  My siblings and my parents accept my foibles and pigheadedness and remind me that inside is a good person working hard to get out.

I am grateful to my friends who let me vent about my ridiculous first world problems.  If I didn't have anyone to talk to, this would be a much more schizophrenic blog.

I am grateful to you online who read this.  Most of you I say I know, but there are people I've known for 75% of my life who read this, and with whom I am friends on facebook, and who I haven't seen or spoken to since 1991.  Really?  Why is that?  Why am I waiting for something electronic to connect me when the audience is there?  For the people who knew me when I was 9, 13, 16 - and FAR more pigheaded than I am now, and who didn't dismiss me as that annoying girl from school, I am truly grateful.  Your support here has reminded me that the world is not as cruel as we make it out to be.  You remind me that my community goes much further back than I ever imagined it would. 

So tomorrow, I will sit with most of my family, and break bread, and be happy, and give thanks.  I hope that each of you has a similarly warm and wonderful holiday. 

Friday, November 15, 2013

To get attention...

I understand that this writing here - everything on the blog and most of the things I post on Facebook and Twitter are, at the core, about getting attention.  It's one of the reasons I don't post more.  I don't want to be viewed as someone who requests or requires too much of your attention.

Tucker, though, is not as refined.  Of course, he's 4 (4 and a HALF when you ask him), and like his brother Drew, excellent with language.  However, Tucker is also the bruiser in the family, and it's starting to burst out of him like solar flares.  They are happening with a great deal of unpredictability: they strike out and then back in, and they are white hot anger.

Lately he's been frustrated at school.  Seriously, seriously frustrated.  But, instead of using language to tell someone, he decided that the best option is to lash out.  Slapping.  Kicking toys.  Kicking people.  Throwing chairs.

People, I am not trying to raise Bobby Knight.

So we've addressed this, but the anger keeps flaring, and anyone in his path is a potential target.  I fear that he is getting filled with jealousy because his brothers get more attention - Connor needs the care, and Drew needs the supervision for his homework time.  I wish they didn't, but they do.  And we have to uncover ways to give equal attention to Tucker.  10 minutes in the car after I've dropped off Drew in the mornings is not enough "Mommy-Tucker Time" as he calls it.

Board games and puzzles with him seem to be working.  Solo baths or showers (ie - not sharing the parent with his brothers) is helping.  Sitting with him when he eats lunch or dinner even when it takes him an hour.  Helping him make his Lego How To Build videos (he actually NEEDS a parent for that...)  Other ideas?

Tuesday, November 05, 2013

Annual Civics Lesson

I love Election Day - I have since I was little and my mother worked for a member of Congress (he holds a higher office today...and is from Delaware...).  When I was in high school, the 1988 Presidential Election was held, and my Social Studies class held a mock debate between the candidates, Vice President George H.W. Bush and Governor Michael Dukakis.

I was 15.  So of course, I had to be sophomoric.  I was on Team Dukakis, and I made fake eyebrows for everyone on the team to wear.  Mrs. McKinley, my teacher, was not amused.  Then again, little seemed to amuse her.  She was a dedicated educator.  When I look back at the teachers I had in high school, I don't have any "good" stories about her (beyond this one, which isn't much of a story) but I do think of her as the one I learned the most from.  And really, that was the point, wasn't it?  Anyway, I made my teammates wear these.  They were made of a piece of paper about 1 inch high by about 5 inches long, and to the "front" I glues small pieces of black yarn to create a unibrow.

God, I was so funny.  I turned the Debate into a Marx Brothers event.

Anyway, I love being a part of an Electorate.  I took Drew with me last year, and he asked if he could go again tomorrow to see me vote.  Tucker also wants to go, but he has preschool in the morning, so I told him that he can go with me next year when I vote.  I hope I am able to show them how important it is to make informed and education choices, and to participate in the government.

And that leads back to the government shutdown a month ago.  A good friend, a long term friend, has asked me if the Affordable Care Act is the best way.  She's a doctor, and knows FAR more about the business side of health than I do.  I know that I need to know to advocate for Connor, but I don't know the breadth and depth of health care.

I don't think the the Affordable Care Act is the best way.  I do think it's better than nothing.  I do think that everyone deserves to have coverage.  I do not think that companies should be permitted to reduce everyone's status to part-time to avoid the financial costs of health care, but that's my liberal showing.  I know it.  I'm ready for your commentary.

When it comes to the shutdown, though, I do think that the current members of Congress are wasting valuable time and energy trying to force their will over something already encoded in LAW.  Sure, they may not have been voting members when the Affordable Care Act passed from Bill to Law, but surely any person of reason can see that the electoral equivalent of holding your breath to get your way is childish and ineffective.  The more appropriate, and certain more lawful, way to handle this would be to methodically chip away at the encoded law with updated versions.  Change this.  Move that.  REMOVE ALL THE FAT.  I may be a liberal, but a 1000+ page bill might be going too far.  No, wait, it's beyond too far.  It's farce.

I want people to be able to get care, and I want them to be able to get it without negatively impacting the costs for everyone else (aka, uninsured people's emergency visits).  And I want that care to not be restricted.  If a woman needs certain types of care in her child-bearing years, so be it.  Cover it.  We are humans, which means we are all different, and have different needs, and placing us in boxes is ridiculous and demeans any dignity we may have.  We are also an enormous population.  You can point to other countries with nationalized health care, but have you compared their populations?

UK.  Canada.  Brazil.  Rwanda.  Thailand.  South Korea.  Moldova.  Kuwait.  Chile.  China.

We are larger in population than many of these, and are First World where many of them are emerging economies or, in the case of Rwanda, still Third World.

Basically, I don't have the answer.  But last night, hearing that one of the candidates for Governor of Virginia was pinning his election on the government shutdown and reversing Obamacare.  REALLY?  I stopped what I was doing and put my head in my hands.  It was your party, asshat, who shut down the government to bully the rest of the government to reverse a law.  Not a perfect law.  But it's a law. It went on down to Capitol Hill, went to Committee, went to a vote, went to the Senate and started all over again, then stood in line to BE A LAW SOMEDAY.

So.  I hope you voted today.  And let's get fixing.

Monday, October 28, 2013

Laryngitis

I have a cold.  I got a medium level cold that hasn't bothered me much, but has killed my voice.  And I haven't posted in a while, so my electronic voice is creaky and underused, where my actual voice is croaky and overused.  Time to balance out again!

Since my birthday, I've had the pleasure of celebrating my middle son's 7th birthday.  He celebrated it in a way I hope he never repeats - school trouble.  I have managed the "Government Shutdown Crisis" fairly well, given that none of us work for the government (though many, many friends and some family members do).  I've weathered an entry into Scouting and a dinner strike by the youngest. I've prepared us somewhat for Halloween, helped clients find homes (both to rent and to buy), gotten very busy, and lost sleep.

So...the usual.  Why the quiet, then?

Well, possibly it's because turning 7 indicates the age of reason?  One week after he turned 7, Drew asked me while I dressed Connor one morning before school:

Mom, who will take care of Connor when you and Dad have died?

Despite an alarming lack of caffeine in my system at the time, I managed to not blurt out: that's what you and your brother are for.

Instead, I took a deep breath (during which I silently cursed Lee for having the audacity to get showered before work and leave me alone for conversations like these) and said, "Well, we've made arrangements so that Connor will always be taken care of.  And he's lucky because lots of people love him and will want to be sure he is taken care of and will help."  Another big breath.  Then, "And, Drew, you know that people who are sick can die, right?" He nodded.  "Well, it's possible that Dad and I may live longer than Connor does."  (Internally, having a HUGE hissyfitmeltdownsnit.  Externally, still dressing Connor and maintaining an extraordinary lack of eye contact with my children.)

Oh.

That's all he said.  End of conversation.  Hasn't come up again.  But when Lee came downstairs, I told him he wasn't allowed to leave the room ever for something as stupid as a shower.  

When we found out that Tucker was a boy baby, the first thing I said to Lee was, "Ha, ha!  I never have to have The Talk."  He hung his head.  I would gladly trade The Talk for this.  Sex?  Easy?  I would be HAPPY to discuss your private parts in great, gory detail.  Your brother dying?  Ugh, um, ask your father.

Connor will be 10 in a few short months.  I find it hard to believe that we have been doing this for 10 years.  A decade.  And he has missed so much.  It makes me so angry on his behalf that he can't experience life or express himself in the way that we are designed to.  It makes me so grateful that we are able to care for him, and make sure his needs are met, and have families (extended and non-related) who just love him with every fiber of their beings and support us through our good times and our less-than-good times.  Neighbors (who are friends, of course) who take the other boys on without a second thought when we need a little time to get something done. 

I am tired, have no voice, and am a weird yin-yang of gratitude and angst.  Gotta get them balanced again so I can get this voice back!

Sunday, September 22, 2013

Turning Through the Years...

So yesterday I turned 40.  It seems hard to believe.  I said to my mother, on FaceTime, that it felt pretty much the same, and we laughed.

There are all kinds of stigmas attached with 40.  It's just the beginning of a new decade, after all.  But there are cards attached with old jokes, a new societal paradigm that "40 is the new 20" and, unfortunately, new tests the doctor orders for you when you reach this esteemed age.

I don't feel 20, and LORD am I glad that I don't.  20, in hindsight, may actually be worse than sophomore year of high school, and that is saying something. 

Soon, my doctor will insist on a mammogram.  I will go.  I will schedule that appointment the same day I receive my referral, and this is why:

When I was 8 and a half years old, we all woke up one morning, got into our uniforms, got on the bus, and went to school.  The night before, our father had been away.  It wasn't an abnormal thing for Dad to be gone.  He traveled a lot for work, and so a night away was pretty commonplace and we did what we always did.  We had dinner, we managed homework, we may have watched a little TV, and we went to bed.  So anyway, we were at school, and at the time, 4 of us were at school together at IHM.  Near the end of the day, the PA system switched on, and the closing announcements, prayers, and dismissal started.  One of the announcements requested that my siblings and I report to the office.  I was embarrassed.  It was the first time my name was on the PA system, and it usually meant you were in trouble.  I have never been a real troublemaker. 

I met my brother coming from his classroom, and we turned and walked down the main hall and to the office.  When we were all there, they seated us and said that they had bad news and good news for us.  The bad news was that our father had a heart attack that morning, but he was recovering in the hospital and would be fine after a time.  The good news was that Deacon Mike and Sister Mary Kelly were taking us home!

That was not the good news, really.  The good news was that he was going to recover.

When my dad was 39, he was at our doctor's office having some stitched checked out, and had a dizzy spell.  The doctor was worried, spoke with him about it, and referred him to a cardiologist to have a stress test performed.  According to my mother, my father was not always a follow the advice person when it came to the doctor, but this time be did, without hesitation.  He scheduled his test, and he went to the hospital to have it done.  They discovered during the preliminary testing that he had already had a small heart attack, and admitted him to observe overnight.  That was the night he was away.  Being in the hospital saved him.  It saved our family, too.

The most excellent news is that Dad recovered, and is amazingly healthy now, more than 30 years later.  He has been at every single event his children and his wife have had - performances, college graduations, graduate program graduations, weddings, grandchildren's births.  His cholesterol is better than mine.  Mine is good because starting at age 8 and a half, my family's diet changed to make us healthier.

The doctor will tell me that I need to go have this test.  I will go.  I have had too many amazing  friends fall victim to illness.  I won't have my children missing me because I was too busy to do what I needed to do to stay healthy.  My dad did, all those years ago, and it's his example I will follow.  Just another one of the many lessons I have learned, and keep learning, from him.

Wednesday, September 11, 2013

Worst Days

Today is one of the Worst Days.  We all know it and we all feel it in our own ways.  For me, today was 4 days before my wedding, and I woke up blissful.  I was headed to work, then off for 2 weeks to go get married, and go on my honeymoon to Aruba.  Everything happened while I was underground, between Ballston and Metro Center.  When I came up, I practically skipped into my office.  I passed an office with a law clerk in it.  He was a good guy and a prolific worker, and that morning he had pulled the TV on a cart into his office and had it on, facing his desk.  I thought to myself that I should get logged in and check out what's going on, and then speak with him about the wisdom of having a front-facing office with the TV in there.  Mental checklists about what I needed to accomplish before I skedaddled out compiled in my self-centered little head. 

Then an email went out.  Then my phone rang.  Then I called my mother, because in 1993 she had friends in the World Trade Center and I was worried for her.  Then I called my sister and left her a voicemail asking her to please work from home because her office was across from the FBI Building.  Then, in an all hands in my office, we were sent home.  I called Lee, who worked at Dulles and had been sent literally running from his office building to head away from there in case something bad happened, and told him I was headed out of the city from my office in carpools the office was arranging, and that my cell service was totally compromised and could he PLEASE call the caterer.

Yes, the caterer. 

He said, that doesn't matter.  I said, our guest count is due by noon.  If we don't try to call, we'll get screwed.  He relented, called, and left a voicemail there.  We didn't hear back until the next day, when they said to tell us what we knew when we could. 

I rode in a car down 9th Street, through the tunnel, past the Pentagon, and up Glebe Road.  I got out of the car at Route 50 and walked to my car in Ballston, because those 4 miles of driving had taken 3 hours.  I had to move. 

I went home, laid on the sofa watching the news and seeing the buildings falls in real time, cried, and Shadow leaped into the crook of my legs on the sofa and laid her sweet head on my knee, looking up at me in concern.  She hadn't seen me cry and didn't know what to do.  Of course, no one really knew what to do.  But it became the Worst Thing I have seen.

I've seen some terrible things.  In 2000, in Sarajevo, I stood in front of a building which had been bombed during the war.  It was a the headquarters of OsloboÄ‘enje, a newspaper, and it had been bombed during business hours, and is now a memorial to the war,  and a gravesite.  Civilians died there.  They wrote and printed the news in that building, and from underneath the rubble in the basement post-bombing, for all three years of the Siege of Sarajevo.  Until September 11, that was the Worst Thing I had seen.

In April, 2004, I saw my son hooked up to an IV and sedated so he could have an MRI.  He fell asleep.  It did not look as though he fell asleep.  It looked like he died.  To this day, it is the Worst Thing I have seen. 

Shadow would have snuggled into my knees at Childrens' Hospital if she'd been there. 

We are all so lucky to have each other this day.  There were so many victims - people who were just going to work, people who just happened to be flying somewhere to see another person they loved, or had to go somewhere for work to support the people they loved.  Then, with a horrible catastrophe, a new group of people had to get to work, and some of them died in their efforts.  On this day, we have a Worst Day memory that is so universally shared, we can each reach out to each other and hold hands and feel sad and safe and angry and confused and furious with the human condition that has pitted person against person for religious beliefs that are amazingly congruous and infuriatingly divisive. 

I don't believe for a moment that my God or my faith is any better than yours. 

Continuing Education

So I learned several new things on Tuesday.

1. Siva (pronounced Shee-va) - Siva the destroyer, Siva the creator.  I had my first yoga class in several years today, and sort of out of left field, about 2/3 of the way through class, the teacher paused in her instruction (a loose term applied to how she lead class - she kept using the Sanskrit words for the poses, assuming that everyone in the level 1 class knew them all.  Because I know things like Sethubandasana.  I didn't know the Sanskrit, but I know the English name for it - Bridge Pose.)  Anyway, what she told us was that Siva both created and destroyed, and that the ring around him represented the ego, and that yoga helps us work through all the ego points until one moves beyond ego.  She said they hold all the things in our mind that preoccupy us and keep us from being fully present in the meditative state of yoga.  That poses like Shavasana (corpse pose, my favorite, so of COURSE I learned the Sanskrit word for it) aid in the meditation to release those mindful things.  And as I was there in my Warrior 2 pose, I was reminded of being in that same studio several years ago and weeping at the end of every class during Shavasana, when I would lie still there, on my mat, and think about Connor and the life he should have had which was denied to him by something no one can explain.  No one knows why this has happened to him.  No one will ever know.  And that unfairness flowed out of me every yoga class back in 2009.

Now, in 2013, I lie in Shavasana, and I know why I am there, and I don't cry.  And it's awesome.

2. Eye dilation - So Connor had to go see his eye doctor yesterday for a check-up.  Besides all the new-job/new insurance rigamarole, they had to dilate his eyes, and when they did so, the doctor said, "It might be pretty quick.  Light colored eyes usually dilate faster."  Really?  Why?  The prevailing theory is that the darker pigments absorb the eye drops more, but I would think that they would then dilate faster?  I wonder if it's that the darker eye, which has more pigment according to the doctor who studied for years (as opposed to me, who did not) already looks dilated so it's harder to tell?  I don't know.  Maybe I should go back to college, earn the right credits to enter medical school, enter medical school, study hard, and blow open the doors of ophthalmology.

Or maybe not.  But it's an interesting thing to know.  Even if it's just a theory.

3. Bus update - This is not technically something I learned on what I now think of as "Learn Something Tuesday," but the bus situation has improved a little.  The transportation department has called and told me they fixed things by making his pick-up time 7:30.  I was able to voice my opinion that that wasn't really fixed because it was still 20 minutes before the original time they gave us.  The day after that was established, he was ready at 7:30, and the bus was late.  Well, I thought late.  Lee said that they had parked across the way and waited for us to bring them out.  I think I may like this bus driver and aide after all...

What have you learned today?

Tuesday, September 03, 2013

New Year, New School

Sorry it's been quiet for a bit.  I guess I ran out of things to say that contributed for a little while.  We went away for a vacation to the beach which everyone enjoyed, and then a week getting ready for the first day of school, in which we painted a room and moved two rooms around entirely.  Plus, in that week, we had a pet visit from our favorite puppy Hopper (who is technically no longer a puppy).  Oh, and Lee started a new job, and made his way back outside the beltway for the first time in 8 years.  Obviously, we don't know how to not overwhelm ourselves.

So first...Connor's room.  Connor seems to continue to grow, and the time came to move him downstairs into the main level bedroom.  He's handled the change really nicely.  I think Lee and I have as well, though it's harder to go upstairs to bed now.  But we do, and he sleeps pretty well downstairs. I only had to go down on the first night, and only once.  Otherwise, he's slept really nicely and comfortably.  We've gotten more accustomed to it as well, but I don't think I will ever like it very much.  I got a monitor (we of course had already gotten rid of the old one) but I have promised myself I won't use it unless he is sick.  I haven't even opened up the box because once I do, I know I'm compulsive enough to just keep going until it's all set up. 

In the interim, we painted his old room, and turned it into my office.  I have a new work station and I love it because it is made from a room that all my boys have called their own.  But after a quiet August, it's hard to find motivation to dive back into the deep end of marketing and prospecting.  Since today is the very first day of school, I will try to give myself until tomorrow to discover my motivation.  If I don't discover it, I shall introduce myself to getting-shit-done because that's what we all need. 

While we were away, we go the news that his bus pick-up will be at 7:48 am.  We'd been warned that his school started earlier, and were afraid that he would be picked up at 7:25, so this feels like a reprieve.  Then, the Friday before school, they changed his time to 7:37 am.  And this morning, the bus was at our driveway at 7:34.  But he was ready.  It will be a long year of this.  But I'm excited about his new school, so the alarm clock and I will become grudging friends in the next few weeks.
This goes completely in the face of my actual morning routine, which is to lie in bed for as long as I possibly can, then drag myself downstairs and drink a cup of coffee before trying to actually accomplish anything. 

I was able to go visit his new school, which is a little further away, but has the same teachers and aides that Connor already knows, so he will be comfortable (mostly) at school.  I have to pick him up early today because the bus drops him off pretty much as the exact same time as Drew needs to be picked up a mile away from the house, so since I have not yet managed to be two places at once, the only logical way is to get one, then the other.  Should be interesting.  At his old school, his class was right at the front.  In the new school, it's waaaaaaaaaay away from the front door.  I don't want to arrive there at the exact same time as the school buses, either, or I'll never get out of there.  I may park all the way around and hoof it in, dragging Tucker behind me.  I'm here with him today, and he's being so fantastic.  Of course, it's also lunchtime, so I should go make him and me some food, and get ready for our active afternoon. 

Stay cool out there, my peeps.  Hope your first day back was a good one!!

Monday, August 05, 2013

A big talk...

So while this space usually is front and center for Connor, he does have two other brothers who, in fact, I am a parent to, and sometimes, they need to be written about.  Today is one of those days.

When you have a child who is special needs, with a disorder that is uncommon and with few capabilities, you just don't read all the parenting stuff.  It's too depressing.  So you drop that from your must-read list and just get on with beginning to understand how to raise that child.  Then another one comes along, if you are lucky or stubborn or both, and if she or he is not special needs, you still don't read all the parenting stuff.  Because you work full time and you have two children and a husband in an evening MBA program. 

Basically, you wing it.

So this weekend, Drew had a birthday party at the Kettler Ice Center.  He and I have been skating together a handful of times, but this time, I hung back and let him hit the ice solo with his classmates.  It was wonderful.  He did so well.  He's not much of a try-er, but he's pretty balanced on skates, and when he falls down he just gets back up.  I cannot say he is always like that with all his endeavors.  He kept asking me to come out, and I kept telling him he didn't need me any more on the ice because he was skating so well.  Eventually, he held the hand of one of his classmates (she also went to preschool with him) and they skated together.  It was adorable.  Her dad was on the ice with her, but he hung back, videotaped it, and then turned and gave me a lovely smile and a thumbs up.

Time came to leave, and we headed into the parking garage.  We went past a few people at the tailgate of their car.  About 20 feet past, he leaned into me and whispered, "Mom, I saw someone smoking!"

"Did you?"

"Yeah.  It looks cool."  NOT what I wanted his reaction to be.  So I asked why, and he shrugged.  Then, without prompting, he asked me if smoking was good for you.  I LOVE WHEN HE GIVES ME AN OPENING!

No, Drew, it's not.  It's very bad for your health.  When you smoke, instead of inhaling air with oxygen for your body, you inhale chemicals that are poisonous to you in teeny doses, and that hurts your organs in your body.

I was pretty proud of that answer.  Also, I was pretty proud that I did not go full Mama-lecture.  We just kept walking and talking.  Like a pediatric Aaron Sorkin script.  We're walking, we're talking, we're giving Big Tobacco the boot. 

"I will never smoke," he decided unilaterally.  I didn't even have to tell him additional, more personal details, like about his grandparents who still smoke (though his father did) or his grandparents who quit smoking (one of whom we almost lost to smoking on a March day a long, long time ago).  It was a shockingly simple discussion, and I know it's just a beginning of opportunities now that he's clearly noticing the world around him in a much more detailed manner, just as he should be.

When I was his age, my absolute favorite treat at the snack bar at the pool we belonged to was a package of candy cigarettes.  We would scrounge up the $0.25 they cost, and then run over during adult swim and buy a pack, letting them hang from our lips as we'd seen the grown-ups do with real cigarettes. 

I still enjoy eating them on a rare occasion, though my teeth feel about twice as thick from the pasty gunge that ends up coating them after I down a pack.  But I won't even let me kids know they exist.  I know they will love literal sticks of sugar, but I don't want them equating them with anything pleasant.  For their own health.

Wednesday, July 24, 2013

Happy Music

So yesterday, my guest blog was published on anglobaptist.org and it's out there in front of a new audience that I am utterly unfamiliar with.  I'm feeling very exposed.  To balance out the sad darkness in that posting, I spent the morning listening to Marshall Crenshaw's eponymous 1982 debut album.

When I was in college, I was in an a capella group called the Virginia Belles.  At first, I wanted to be in a different, co-ed group.  I was devastated when I did not even get called back to that group.  It never occurred to me that my voice part (alto verging on tenor) wasn't needed in that group.  Then, one day, my next door neighbor, who had just joined the Belles, told me at dinner that they had lost an alto and would be holding auditions.  In one of my most self-serving moments, I thought, "Okay, I'll audition and use it as practice so I can get into the other group the next time."  My dear Belles who may be reading this now, I am sorry.  I signed up and told NO ONE that I was doing it.  My neighbor, Becky, knew, but that was all.  Then I went to the first part of the audition, and after I ran through the exercises for the Musical Directors and Assistant Musical Director, I started singing the solo piece I had prepared for it. I wanted to do something unexpected and that no one else was likely to have sung.  I chose a song called "I Want To Walk With You" by Toni Childs (http://www.youtube.com/watch?v=RJs_CT9B9Sg).  I sang to the bridge, and then I FORGOT THE REST.  That doesn't happen to me.  Completely blank.  I was mortified, and certain that I'd blown it.

Luckily I had not.  I was called back, and managed in the group callback to do two important things: 1. I managed to fool them all by literally BARELY singing aloud during the "blend" segment.  2. I sang the WHOLE song.  Before I started singing my solo piece in front of the whole group, I told those who weren't present the first time what had happened, and then sang it all. 

Longish story short - I was invited to join, and I did, happily.  They found out soon after that I was considerably louder than they thought.  Luckily for me, they kept me in, and I made some of my best, best friends there.

In my last year, one of our guest groups sang a song called "Mary Anne" that my attached-at-the-knee friend and I loved.  However, we did not love the guest group that sang it, so we floundered about for years wondering who wrote the song originally.  Two years later, when I worked at Borders running the music section, someone picked out a CD to play in the store one day that I had not heard of, the debut album of Marshall Crenshaw from 1982.  It's a pop confection, it's beautifully written - very Beatles-ey, Joe Jackson-ey, etc.  Not my normal, harder rock cuppa, but I have always been a sucker for great pop songs.  There it was.  "Mary Anne" - finally!  I called my friend, bought the CD, and lived happily ever after, sonically. 

Sometimes, music draws me down.  This album lifts me up, and I love knowing there is something I can pull up and listen to that is guaranteed to brighten my spirits. 

Here's some more information on Marshall Crenshaw, who is phenomenal.  I hope you have something just as simple and beautiful that picks you up when you are down.

http://en.wikipedia.org/wiki/Marshall_Crenshaw

Wednesday, July 17, 2013

Miss Christy Day

Today is Miss Christy Day!  In our house, that is the anniversary of our nanny's first day with us. 

Christy has been working with us and for us for 7 years now.  It's amazing to me that it's been that long so fast!  The day she came to interview, we received a phone call from her 20 minutes before her interview time.  "Where do I go?" she asked.  I tried to give her directions.  She hung up after the first few sentences.  Two minutes later, she called back, with a similar outcome.  It happened EVERY TWO MINUTES for the next fifteen.  I was already exhausted and I hadn't even met her yet.  It got so frustrating that we tried to cancel the interview.

No luck.  She came anyway, and it turns out that we were the lucky ones.  Christy had a special needs daughter with similar problems to Connor's.  She spoke to us about her May-May, and how she cared for her.  Then she asked if she could hold Connor, and she knew immediately what to do with him.  We hired her.

On her first day, she arrived early, we headed to work, and I called home at least 4 times to check in.  At the end of the day, she told us that Connor had vomited all over her at lunch.  She cleaned them both up, and moved on.  The second day, he did the same thing.  We couldn't believe she kept coming back.  The third day, she was ready for him, and now it's been years since he's been able to pull that trick on her.

When Drew and Tucker were born, Christy was the first non-medical, non-family to hold our boys.  She has helped raise them from their first days, and every evening, when she heads to the door, they holler out "HUG AND KISS" and drop whatever they are working on to go hug and kiss her good-bye.  This morning, when she came up the steps to the porch, Tucker crouched on the sofa by the door.  When she opened the door, he sprung up and yelled, "Happy anniversary, Miss Christy!"  She taught them both their alphabets at a very young age, and counting too.  For children who spent a large portion of their developmental stages with a caregiver for whom English is a second language, they have enormous, at times hilarious vocabularies.  Their success is her success, and she lets them know how proud she is of what they can do.

In a year, Tucker will be going to kindergarten and we won't need a full-time nanny anymore.  I do not know how life will be without her.  She is a part of our family now, and not seeing her every day will be so strange to all of us.  I know Connor will miss her.  They have a very special bond.  Two Christmases into our time together, she brought gifts for the two boys (No Tucker yet) and when we sat together to exchange gifts, she broke down crying about how much she loves our boys.  I know they are not perfect, and that at times they are bad for her, just as they are for us, but for all my boys Miss Christy is as constant as the sun.  We will be lucky to have another year with her, and then help her find a new family who needs her special skills.  And hopefully, see her every once in a while so she doesn't forget us.

Monday, July 15, 2013

It's been so loooooooooooooooong!

Apologies for the absence...we had some travel that didn't go quite as smoothly as we wanted, and then recovery, and then, you know, life.

But we're back.  Connor has started summer school, his last weeks in the old school before his transition to his new school in the fall.  It appears to be going well - the notes from his teacher are telling me that he's engaged and making friends with new classmates-to-be, and I can tell that his IEP goals are being pursued even in summer school.  He's tired in the afternoon, so they must be making him work hard during the mornings!

The other boys were intrepid travelers. For boys who had only flown 90 minutes at a time before (Drew) or not at all, to manage the 20+ cumulative hours of flying with relatively calm demeanors, sitting placidly with their seatbelts on, and most importantly, not screaming, is pretty impressive. We had several screamers around us on our way home.  At one point, I lifted my head over the boys to catch Lee's eyes, and I mouthed to him, "Our kids?  They are pretty awesome," and he nodded. 

Now I'm trying to get re-upped with work, which was insanely busy before I left, and now has slowed down so much I'm at a loss as to how to reboot it.  But I'm trying, and will have it figured out soon.

I've also been asked to write a guest blog for an old and dear friend, and I'm terrified.  But I said yes.  Time to face the fears and write the piece.  Well, take a different thing I've been writing and remodel it for his use. Keep you posted.

Thursday, June 20, 2013

Tomorrow is IT!

Last day at his school.  Next year, some of his classmates (and his teacher from this year) will be with him at his new school.  I will miss the teachers and the students we won't see.  I am delighted that he will have the same teacher.  She has worked so hard with Connor this year, and you can tell he's getting better at expressing his choices with the constant work.

I will not miss the stupid nurses, the insensitive administration - I am happy to let them roll off my back. 

Most of all, I will miss the children I haven't met at the school because they always embraced Connor and his classmates.  The future students of the school we are leaving will be missing out.  BIG TIME.

Enjoy the first night of summer, and tomorrow (for those of you here) the last day of school. 

Wednesday, June 19, 2013

Snuggle Puppy


This is Snuggle Puppy. 

Many of you may be quite familiar with Sandra Boynton's oeuvre, and "Snuggle Puppy" is one of my favorites of her books. I don't recall if I picked it out, or if it was a gift at the baby shower, but we've had it as long as we've had kids. Then someone else gave us the book and recording in a larger anthology, and Eric Stoltz sang the song (swoon, it's Keith!!). 

At Christmas, 2004, his first one, Connor came home from daycare with a small bag tucked into his regular bag, and in it was this small stuffed animal from his main caregiver at daycare, Ms Regina. Ms Regina was critical in our lives because she helped us learn that there will be many different people who will love Connor only for who he is, and nothing else.  The first few days of daycare were difficult for me, just as any new mom.  I had called the center when he was diagnosed while we were still only on the wait list. I told them that he had some serious problems that would require extra care, and that we understood if that would prevent him from being eligible any more. I didn't want to take up space on the wait list if he couldn't go there.  Oh, that will be fine, don't worry about it, the director told me.  About two months later we were off the wait list, and into the deep end. 

I am lucky that the day care was only a few blocks away. I could go nurse a lunch and check in.  Regina was given immediate charge over Connor.  She tried to nickname him Connor-Bonnor but that did not stick.  So she went with the next most obvious nickname: Homeslice. And she loved him. Love with a capital L. Her notes on his day were hilarious, as she celebrated every possible thing her Homeslice did. She called me at work to tell me he was growing a tooth in the middle of his mouth. He wasn't of course, but her concern swallowed up her reason, and she called me before checking it out. 

He had burped up some milk solid. It was stuck to the roof of his mouth. We laughed for a while. 

Then she gave him a Christmas present. I'm not sure if she gave one to each of "her" kids. 

So many things given to Connor have been co-opted by his brothers. They have been taught to ask and to wait for him to wave his hand to indicate it's all right. They are never allowed to take Snuggle Puppy from Connor's room. It's the one tangible link I have to Regina, who no longer works at that facility. I wish she did - I would take him to see her. I cannot imagine how she would react to seeing him. On his last day of daycare, he sent most of the day back in his old room in her arms. She sat in her rocking chair, holding him, whispering in his ears, and letting tears roll down her face. I couldn't even speak to her when I picked him up. I was 6 months along with Drew and had the teensiest grip on my emotions that day. It was my first experience saying good-bye to people who had proved me wrong about how he would be accepted in the regular world. My mom was with me, and she kept saying in a low voice, "Just keep going," and helping me make sure I had all the things that had accumulated there for him. Eventually, the director came by to say good-bye and told Regina kindly but seriously that she had to pull it together or go home - she was scaring the children with her distress. 

In many ways, I miss Regina. At the same Christmas, we gave her a calendar with pictures of him, just as we gave many other family members. She told me after New Years that her husband wanted to know why they suddenly had a picture of a little white boy in their room. That told me all I needed to know about how she felt. She kept his picture in her room. 

So Snuggle Puppy stays in his room. 

Thanks, Regina. 

Monday, June 10, 2013

Been a while

It's been a few weeks, and I'm sorry for the quiet. I suppose my brain needed a quieter place for a little bit. 

Today, I got a call from the school nurse at Connor's school. She was calling to ask me to provide information for her to use in his transition to Strathmore next year. Except he isn't going there. And he isn't going into 6th grade. And he doesn't have a private nurse with him at school.  And people wonder why I'm not happy with the administration at his school? They cannot even keep Connor Wright, rising 4th grader moving to Barrett straight with some other child whose last name is White, is two years older, and has a private nurse at school with him every damn day. 

The good part - I don't have to track down anything for school. The bad part - they are hiring medical personnel who cannot keep their most health-sensitive students straight. 

Meanwhile, any of his actual doctors we see for him, all of whom have many hundreds of patients, remember him, why he's there, that he has younger brothers, that his parents have a defense mechanism of humor in the office.  And the nurse, who is there every day and spends more time with FLS kids (mostly sending them home) can't keep White and Wright straight. 

Is it any wonder I'm so done with his school?

In other, less angry white mother news, the Pig Roast is this weekend! We love the Pig Roast. I'm going to go with Lee to get the pigs this year. Lots of new firsts in 2013.  I'm not sure this one was predictable. 

Also in the un-angry category is that lately the boys have taken to snuggling with Connor and picking stories for us to all read together at night. They climb on his bed, snuggle around him, make sure he has the one stuffed animal that is not community property next to him (maybe I'll blog about that animal next time?), and we read picture books.  Connor clearly watches the pages. Then they awkwardly hug him, or sweetly kiss his forehead and wish him a good night. 

We stomp off to another room to read other books, Connor tucked in nicely. 

Okay, it's late. You should probably go to bed. I should. I expect morning will come, appalling and early as usual, and Tucker will bound into my room and call me something indiscernible because that's what he does.  And Drew will come downstairs and request that we leave him alone because he's just not hungry for breakfast yet. Because that's what he does. And I will try to not speak until I have my first swallow of coffee, because it makes me rational where there was entropy. 

Tuesday, May 28, 2013

Deliberately Untitled

My friends, this will be the hardest post I've written here to date. 

Over the weekend, one of the families in our small preschool community entered into the unspeakable horror of losing a child.  I am somewhere between acquaintances and friends with this family, and my sorrow is unmeasurable.  It cannot for one moment compare with the grief that his family is experiencing, and will be experiencing, for the foreseeable future.

Lee and I think that we know what it is like for people who are experiencing pain when it comes to their children.  We know nothing.

Most of us know nothing. 

We told Drew, because one of the child's siblings is in his class, and he is friends with her.  We have not told him details, and we almost introduced to him in this conversation that some day during his life, it it likely that Connor will die and we will be the family people are reaching out to, offering help to, and sitting with and crying alongside.  I just couldn't do it.  He's not even seven.  We held off.  I hope it was the right decision.

Tomorrow, we will get up, and dressed, and go with the community to sit with the family as help them as they try to say good-bye to their baby.  I will cry.  I'm already well known for my crying, but it will be on a whole different plane.  I feel like my crying is a selfish thing.  What right do I have to be sad?  Week after week, I write here and make other people sad as an exercise in therapy - that in itself is an inherently selfish thing.  Me me me me me.  And then, I get the most wondrous, supportive messages from you all, and it makes me feel so much less alone, even surrounded by the millions of people we have here in Northern Virginia. 

So thank you for being my therapists, and listening, and asking when asking needs to be done.  Thanks for loving my sons when I write about them, and laughing at the funny things and holding my hands through the tough things. 

I am open to each of you, and if something happens, my hand is here to hold yours for as long as you need it. 

Friday, May 24, 2013

Good-byes run both ways

It's been a crazy couple of weeks.  I apologize for the lack of posting but life, and work, has been busy and at the end of the day I am not really able to string the words together to make it worthwhile for anyone to read.

Last Friday, we received a call that Connor is being moved to a different school next year.  Initially, and in an ongoing way, we are happy.  We have been at odds with his school for the last two years and are looking forward to a little more peace in his education.  But what I've learned in the last week is that it seems a few things have been going on behind the scenes that make me seethe.  It seems that the administration of his current school pushed this issue.  They don't appear to like that they have a section of their school dedicated to disabled children when there are so many able children who need the space.  Ugly stuff.  But on the other hand, I'm no fan of the administration there.  I look forward to establishing a relationship with the new principal.  But also, and most importantly, the schools and adminstrations are not supposed to make any decisions regarding school placement without parental or guardian involvement.  Which they did not do.  At all.  With anyone.

It's hard to know what line to walk on here.  As Connor's number one advocate, do I stand up and hold the adminstrations accountable for not abiding by the regulations, even though their circumventing it and placing him elsewhere actually looks to be the best outcome for Connor?  My friends/parents in the system are angry, and rightfully so.  I am angry that they flouted the regulations.  But I am angrier at the shitty, thoughtless approach to my son that his school has "bestowed" upon him. 

So that's a good-bye that won't be too hard.

Then, on the other side, there's our Megan.  When Connor was 8 months old, the Arlington PIE Program called to tell me that he had been reassigned to a new physical therapist and they were really excited because it was the person they had wanted all along.  I got a call soon after from this new woman, and we set up our first appointment.  When she arrived at our house, she plopped down on the floor with him, and started performing some stretches with him so she could learn how and where he worked so their time together would be better focused.  He'd been having some issues with constipation that had me incredibly stressed out, and about 5 minutes into the stretches, he started wiggling, then passing gas, and then, by the end of the 45 minute session, taking care of that business. 

She came into our home, and took something that was blocked up and helped us find a way around it.  In a real way, but also in a more esoteric, atmospheric way. 

We have not been the same since, and it absolutely breaks my heart that her family is moving away on an amazing adventure and we won't see her much any more.  Simultaneously, I am so excited for them.  We have been so fortunate to have her in our lives.  Not only Connor, but Lee, Drew, Tucker and me too.  She has loved my family unconditionally, and we love hers.  Let's put this another way:  my mother knits baby blankets for family members when new babies are on the way.  When I told her that Megan's first baby was on the way, her response was, "Find out what color she wants.  Megan gets a Wooby." 

She is family, and we will miss her.  And hopefully, we will go visit them all when the time is right for everyone! 

This good-bye is much, much harder.


Tuesday, May 07, 2013

EEG (Not Pronounced eeeeeeeg!)

I just got home from taking Connor to get recording electrodes glues to his scalp for a 24-hour EEG (Electroencephalagraphy) test.  It's been cloudy, drizzling, raining, and pouring intermittenly all day.  I'm down, partially from sleep and partially from doing something so outward and obvious in terms of testing Connor.  These days are harder as we have the immediate visual reminder of the testing materials on him that say "Your boy is not well."

Last night, for the second time in his life, we forgot to give him his medications before bed.  We've just changed his dosing times, and it takes a  lot to remember it sometimes in the craziness of dinner with the boys, and then playing and then, if we are lucky, an unrumpled bedtime routine.  Usually, we are pretty rumpled by the time the Wright brothers are in bed.

So we forgot.  At about 10, he started having a type of seizure we haven't seen in a very long time.  We talked about the fact that we hadn't seen that in a long time, but we did not remember at that time that we had neglected to give him his normal dose of anti-seizure medications. 

At midnight, he was making some more noise, fine really, but noisy. And Lee said, "Did you give him his meds?" and all at once we realized we were 5 hours late dosing him.  Pushing him without realizing it into a bad night.  I went and got his meds and get them into him, and then he drifted back out and had a pretty peaceful rest-of-the-night.  It took me an hour, though, to recover from feeling that I'd really let him down.

The only other time something like this has happened, we didn't realize until we were preparing his breakfast the next day and adding his medications in.  So this time, we didn't forget-forget...he did at some point get the dose.

Anyway, now his head is all swaddled in gauze and we are to track any activity we want the doctors to review specifically once this 24 hour period is over.  Tucker is most interested in seeing what it all looks like.  I will let him see when I have the pleasure of removing everything from his head tomorrow.  Until then, the top half of him is essentially in lockdown - no one touches him unless his head catches fire.  Which it won't.  And in the meantime, I'm hanging a sign on his door to his room that says, "Have I had my nighttime meds?"

Just so we can be sure. 

To recap on other things...

So far I am not doing so well with the exercising. I'm hoping to really set a schedule tomorrow and stick to it. It's hard, as it turns out, especially when it's raining nonstop!

Also, it's hard not to eat Goldfish, or chocolate dipped granola bars for breakfast. They are just so HANDY when I am running out the door!

However, today is a big day because one of my IS Mama friends is having a baby today. I know that she and her husband are handling a lot of emotions today. I know that they are thrilled and excited to meet their new baby. I know they are scared and nervous that something could happen to her as happened to their Wonder Boy who is so much like Connor. So for them, I write this:

In early 2006, we found out we were expecting another child and set about making sure we tested everything we could test, and did everything we could do to make sure this baby did not have the fight that Connor does.  I spent an inordinate amount of time being utterly certain that everything was going to be absolutely fine.  Then, three days before he was scheduled to be delivered, little Drew started knocking at the door to come out, so we headed over to the hospital as soon as Aunt Erin could get to our house.  I lured her with, "We need you to come take care of Connor so we can go to the hospital and I know it's 6:00 am but I have COFFEE!"  (It totally worked.)  It was a quick move through registration and prep to the operating room.  When you are having medically required C-sections, it can go quickly if there's no line.  There was no line that day.  And I remained in my obnoxiously-certain-of-everything-being-fine state until we went into the OR, and they started hooking me up to machines.  Lee, all scrubbed in, was sitting on a stool next to me, and chatting with my doctor, asking if he could watch.  She agreed but informed him that if he passed out, he would be dragged aside and left on the floor.  He was fine with that.  He turned back to me, and I must have looked terrified.  He said, "What's wrong?" and I said, choking on tears gone unshed for 9 months, "I'm really scared." 

"I know.  Me too."

My wonderful OB popped her capped head over the sterile drape and said, "Everything okay up here?"  I wept and said yes, just a little nervous, etc...downplaying where I really was.  "Colleen," she said, a little sternly, "I can't deliver this baby until you stop crying.  Because I can't make the incision with your stomach jumping all over from erratic breathing from crying." 

My doctor is awesome.  It totally settled me out, got me back in the  moment I needed to be in, which was to welcome my second son to the outside.  I pulled myself together.  Drew was delivered.  After a little bit, Lee and Drew headed off to the nursery and the rest of my delivery was completed. 

And he was fine.  Today, he's smart, charismatic, funny, and most of all, kindhearted and friendly. Having him helped me learn to balance my fears over the future I cannot totally control with the unabated joy of having a family.  Having a family was a lifelong goal of mine.  What I didn't realize when I was young that while you can have that goal, you cannot control anything once they get here.

I can't wait for my friends' little baby to bring them some peace today too. 

Wednesday, May 01, 2013

Let's Get Physical...

Every few years, Lee and I pretend to be responsible parents and go have physicals performed.  Our most recent one was about 2 weeks ago. And now here I am, with a call from my general practitioner's office telling me that I have to start regularly exercising.

Sigh.

I know that I need to. I know that I want to. But the parts of my body that actually NEED the exercise...my heart, my lungs, my abdonimal muscles, my all the other muscles...they are all like, No, babe, sit down! Have a snack! You're still in fantastic shape...

They are like the serpent in the Garden of Eden. Except they are offering me Goldfish crackers and beer instead of an apple.

So. New rules that I am going to apply to my daily life:
1. No more chocolate dipped granola bars for breakfast.
2. No more Goldfish crackers unless I have exercised that day already. (*dispensation for co-op days when I always bring Goldfish. But if I snack on them there I must run after co-op.)
3. I will recommit to running at least one mile 5 days a week. If I run through the neighborhood, around Drew's school, and back to the house, that's 1.5 miles.
4. I will do some kind of strength training 5 days a week.
5. I will quit my gym. I don't go. It's a waste.

Five's a good start. These will hopefully help me get stronger.  I could use some upper body strength.  All that carrying Connor is HARD.  He's heavy, as you may remember!

I'll try to be honest about it too.  I'm guessing my first run is coming tomorrow morning, when I (GROSS!!!!) set my alarm and get up at 6 to accomplish this run.  Stay tuned. And send encouragement.  I am going to need it!

Monday, April 29, 2013

9 Years

Last week was the 9th anniversary of Connor's diagnosis. I usually don't remember it until after the fact, as it's followed by my sister-in-law's birthday and my best friend's birthday. Then I remember. I remember taking him for his EEG, not realizing that test was going to send the train of my life off onto a siderail course I could never have anticipated. I wrote a piece on that day almost 2 years ago. It's long so I won't put it here but it details the day. I read it often. I don't want to forget what the beginning was like. It is good for me to see, all these years later, that we were scared adults in an ocean of long, scary words and questionable longevity, and see where we are now. We are stronger because he is. We are a larger family because we believed we could be.

I had a check-up today with one of Connor's specialists today. Really, we only see him once a year, and every time, he makes a point of saying how hard he can see that we all work in this family towards the best possible outcomes for Connor.

He's a good doctor. I am glad to know him, even as I am angry that we need to. I am glad that he believes in us. We were referred to him to work on feeding and aspiration issues. The idea came up in 2008 to install a feeding tube in his abdomen. We were against it. This doctor is too. In 2013, Connor has had a feeding tube for exactly no days ever.

Leaving his office, I was struck by a thought while I raced him to the car through the rain. They can tell me he's going to die as an infant. They can tell me he has to have a feeding tube. They can tell me many things. It doesn't matter. They can't have Connor. He's mine, and he fights like we do, and we are never, ever giving up fighting for him. Never.

Thursday, April 18, 2013

More on Glee and how it mishandled last week's episode

I've had some additional thoughts that I wanted to get down before they escaped me. What really bothered me, after a little reflection, is that Glee had a chance to take on the gargantuan topic of how we handle students and other individuals who are special needs when they "age out". It would have likely been simplified, but at least it could have started a dialogue about it amongst their viewers about what we do as a citizenry. Instead, they cheapened a character who is truly in a class of her own, and rendered their advertisements of the episode handling shooters in school toothless.

My son receives a lot of services. I probably couldn't account for them all as they have been with us for so long I don't even notice them anymore. I am grateful every single day that we have support for things like his therapies, his durable medical equipment pieces, even his medications. He's had somewhat underwritten therapy since the week after he was diagnosed. It can take a lot to fight for his DMEs, but we fight and we get them, eventually. Our various health insurance carriers have worked with us regarding his medications, and we have Medicaid to cover him when insurance won't cover it.

Yet, when we were informed that we had to go to court when he turns 18 (assuming he gets there) to have him declared incompetent so that we could retain guardianship over him it was a shock. Hadn't occurred at all. That was a rough meeting. Connor's personality is subtle, so I cannot imagine what it's like for a parent of a vivacious, loving DS child having to consider what will happen once their son or daughter won't have school to attend? When their friends go away to college?

Families with DS children are my heroes. They handle so much more than I do. To see them diminished by this program makes me angry, energized, and bloggy.

So thank you for reading my thoughts. There may be more to come, but that is all for tonight.

Glee and Guns and Schools and Mental Health and all of it

So I've had a few ideas in my head that I wanted to write about recently here on the blog, but they all got knocked aside last night.  Sunday night, a virus raged through the family, sparing no one and laughing maniacally at me as I lay crumpled on the floor in the bathroom, just to save Lee from having to wake up to me getting up AGAIN.  Monday dawned, and the virus retreated, but not before depleting me in a way I have no been since I hiked three hours in the mountains of Guatemala along centuries-old pathways on what was described as a "gentle walk" but really reflected something akin to 7000+ feet of elevation covered without water, food, and almost breaks.  But I digress.

So last night I was still in recovery mode, plopped on the sofa and plodding through my shows - my Stories! - on the DVR.  First up, the rest of the Community from last week.  Then Parks & Recreation.  Laugh, laugh, laugh!  Then I started in on Glee.

To be honest, I have watched Glee since season 1, and the first season was really well done.  The second season started poorly, and then improved.  It had one standout episode that I now judge all the other episodes by (and no, I'm not talking about the episode with "Teenage Dream" though that is my favorite song they've done because the arrangement is freaking amazing).  The third season was really quite bad.  This season I wanted to see what would happen when many of their mainline players had graduated.  The dreaded 90210 syndrome.  What do you do when your stars age out of your show by your show's very premise?

The episode started like many others, fun, frothy, weird, musical number, GLEE namecard.  As an hourlong program, you can rely on First Act - setup & music, Second Act - action & music, Third Act - action, occasional twist, & music, and Final Act - moral of the story, frequently told through...music.  The other "good" episode featured a big SHOCK in the second Act, and so did last night.  Last night, at the beginning of the second Act, the kids gathered in the Choir Room and were starting to get ready for their "lesson" when shots were heard in the hallway.  This has been a topic of much discussion in preceding months, of course, but as it turns out, imagining it and watching it are two very different things.  I felt pushed down into the sofa, and I watched these non-kids do truly wonderful acting as terribly, horribly frightened children in a dark classroom trying to keep it together.  All I could think about was "Oh God, my little babies...they would be so scared..." mixed together with the out-of-body commentary as to who is doing a good job and who wasn't.  Our favorite, Brittany, crouched on a toilet seat with her hands bracing her in the stall, and tears running down her face and dropping into the toilet below her - possibly the most convincing thing she has done on the show.  Teachers, quietly as possible, hauling someone who wants to be a hero into a smaller interior room whispering to him that he is endangering everyone there with him. 

It was a nightmare and I could not stop watching.  Coupled by the fact that I managed to watch it hours after the Senate failed to pass any kind of gun reform made it extra nightmarish.  Lee came in while I was mid-Act and wondered why I was sitting on the couch crying about Glee.  Fair question.

And then.  THEN.  Then they took what was so promising, turned it over, and ended it in a way I'm sure the showrunners thought was Noble and Important and Sent A Message.  Well, FAIL, idiots.

There was no one shooting at people in the school.  Instead, the truth of the story is that a scared student (and recurring character) who has Down Syndrome had brought her father's gun to school because she is close to aging out of school and she is scared about the future and wanted to protect herself.  She dropped it while trying to hand it to her teacher and mentor while explaining and her fear, and the drop caused it to fire.  WHAT?  So, instead of really addressing the issue of person to person violence and the ability to purchase weapons without background checks, or steal weapons from people (parents), suddenly this show is saying, "Developmentally disabled kids do things like this."  OH. MY. GOD.

I was incensed.  I remember being a teenager.  Even while learning (and I learned well) I still had foolish black-and-white opinions about things that I have completely reversed with maturity, higher education, living, and common sense.  No teenager has maturity, higher education, living and common sense at their disposal.  They have Ideas.  They have Hormones.  They have Opinions.  I did.  I wasn't all that atypical.  And now, maybe some of them (the show is, after all, geared towards young adults) think that developmentally disabled children mainstreamed into public schools can't be trusted to not do something like bring a gun into school. 

I recognize that I have a filter that not many other people have on this.  But seriously, blame the kid who isn't like the others?  That is just sloppy, lazy, thoughtless storytelling.

It is hard enough for our kids to be mainstreamed into schools.  Connor sort-of is, and at first I feared daily for him.  Not because I feared violence, but because I feared that he would be teased.  I worry that his brothers will be teased for having a disabled brother, as if that was something they caused.  Connor's school has it's strengths and it's weaknesses, but one thing I have noted and become more comfortable with is that the students embrace him and his classmates wholeheartedly.  A few years ago, the younger sister of a schoolmate (not a classmate - someone else who goes to the same school, that's all) made him a valentine because she saw him every day at drop off.  When her mother asked her who she wanted to make cards for, he was in her list.  I got the card and cried like a baby.  I emailed her mother and thanked her profusely for the card and told her how wonderful her little daughter was.  Kids are pretty nice.  Teenagers are still unknown to me at this point.  They were mean sometimes when I was a teenager.  I was mean sometimes as a teenager. 

Glee, I may be done with you once and for all now.  You have taken a show about keeping the arts in education, and how creative teenagers are put down and bullied at school, and turned it into a personal soapbox were the soap now muddies your own messages.  You just left it there - she did it, no one knows but the teacher who covered for her and lost her job as a result, and left a terrible taste in my mouth about how you handle members of the special needs community.  Up until now, you have been an ally of the special needs community, but I think you did all of us an enormous disservice with the episode "Shooting Stars". 

Wednesday, April 10, 2013

Dreams...

So last night (okay, okay, this morning when I fell back asleep when I should have been up!) I dreamt about Connor.  I do not usually dream about him, but when I do it's a very uplifting experience. 

Last night/this morning's dream centered around him sitting in Tucker's room.  Tucker was playing with him, throwing stuffed animals around for him to track.  All of the sudden, Connor broke out into the most enormous smile I have ever seen.  He laughed and laughed and laughed.  I ran in to the room and grabbed the only camera I could find, which was the toy one Tucker got for Chirstmas, which has an approximate pixel setup of 1 pixel by 1 pixel.  But I was determined to get a picture of this event. 

I woke up happy, and wishing I really had the picture.

Back 4 years ago, as I waited for Tucker to be born while living in Tiny House, I dreamt that Connor came walking, almost running, out of the screened porch, across the yard and into the street.  Nothing bad happened.  He was just moving, and looking amazed with himself.  It seemed, in the dream, that he knew he could walk all along and he just decided to do it.  There he went! It was fantastic.  I woke up so happy that day too.  I love that in my dreams, when he does stuff, it's the things we all wish he could do, and that doing them makes him so happy.

I don't really remember dreaming about the other boys.  Perhaps that's because they get to live out the dreams all around me.  But given the strange dreams I've had through my whole life (Jerry Garcia as Lamaze instructor, anyone?) these are the ones I cherish the most, and will keep record of for those days when I need a pick me up.  I didn't need one today, but who knows when the next day will come when I do?

Take care out there, friends.  Let your dreams fly, and try to live them.

Tuesday, March 12, 2013

Lemonade

I am pretty sure that when I was a little girl, I was sunshiney and happy.  I don't recall being Wednesday Addams in the least.  Then, adolescence struck, and I gothed HARD.  Music - check.  Dark, mysterious "sadness" - check.  Melodrama - check.  As I've noted - I had a pretty good life, and somehow I still found a way at 15, 16, 17 to make it sad and solitary.  How many people with 4 siblings can find themselves alone?  I did.  I can't believe my parents did not laugh in my face.

So as I gradually transitioned to an adult, I let some light back in.  People who once found me difficult and thorny (read - classmates in high school and college) are amused and surprised to hear me described as tactful, kind and friendly.  WHO??  Right, I know.  I guess I just figured out the best way to make lemonade.

I am trying to teach the boys to make lemonade.  Both in the literal, to-be-imbibed way, and also in the could-be-worse way.  When one of them makes a comment about how they wish Connor were more like them, we say, "Wouldn't that be great? I bet he'd be so much fun and wrestle with you all the time.  Isn't Connor lucky to have such a nice family who wants good things for him, and can take care of him as he is?"  And they emphatically agree.

Drew has started figuring out that if he does good things, he gets "privileges".  This is helping out considerably.  Lee was away all last week, and all three boys were FANTASTIC!  By Thursday night, they had kind of lost their minds and just started wrestling with reckless abandon.  But they got up, ate, went to school, and went to bed without complaints.  Even with the late snow day on Wednesday, they were awesome.  Maybe I was overreacting a few weeks ago when I worried that I was diminishing their childhoods?  I hope so.  I'd rather make lemonade from that experience than have it be the water we have to drink every day.

Tuesday, February 26, 2013

On the doctor's advice...

We have found out how to handle success with Connor.  We change directions completely.  After years of battling his lack of weight, we've had to move away from overloading his food with calorie additives.  His regular doctor's appointment was yesterday, and he has gained another 4 pounds, and developed a fat pad (medical term!!) in his abdomen! 

Our doctor asked, "How is he?"

"He's fat.  FAT.  We have to fix this," I replied, and pulled up his shirt to show the gut spilling over his waistband.  It was nice, for once, to worry that he was too fat instead of too skinny.  Very new for me.  We've decided to back down on the additives because we don't want him getting too heavy for his physical therapy and his mother to maneuver him around.  So now he's not exactly on a diet, but a close approximation.

Unfortunately, I also had this experience at the office: as I pushed his stroller back through to the pre-exam room, a nurse said, "Oh, I wish I could be pushed around in a stroller and sleep all day!"  I don't doubt for a second she was trying to be nice.  Unfortunately, it was a complete fail.  My upbringing kept me from spitting back, "Well, I wish my son could walk."  Instead, I made a non-commital noise, and got him safely weighed and measured by his nurse, who knows well enough not to say stupid, thoughtless things to parents of special needs children.  I did start the appointment with the doctor telling him about the interaction, because I felt he should know.  I mean, what if they started losing patients because they employ a nurse who doesn't know "acceptable" from "offensive"? I apologized for being the bearer of bad news, but told him I felt it was important to provide the information and feedback.  Then I cut the tension by telling him that it was awkward because Connor wanted to get up and defend my honor, but he couldn't.  I got a smile for that.

I hope our doctor knows how much we trust him and rely on him.  He has been through thick and thin with us (now literally!) and we are so grateful for all the advice, care and advocacy he has provided for Connor.  I know he would do the same for our other boys, but I am relieved that they do not need extra advocates at this time. 

Wednesday, February 20, 2013

When it rains...

Last week, one of Connor's classmates lost the battle.  It's the first time we lost someone in Connor's circle, and it's a gut punch.  They were classmates last year, and they were as close as kids like them can be.  My heart is broken for her family.  I can't even find the words to write in a condolence card to them.  My heart is aching for my son, who may or may not know what has happened.  And it's all in the background, because we don't want to make a huge fuss over it to Drew and Tucker.  While they are aware that Connor is different and will always be, and will always need care from another, we don't want to introduce that his lifetime with us may be shorter than most.  It's a subject we practically can't discuss ourselves as his parents.  But that's the fact, in the plain light of day.  Connor was expected not to live past 2 years, really.  And now he's 9.  We are on borrowed time with him.  When you have children, there are a lot of new worries that pop into your life.  With Connor, the worry that lies just beneath the surface is "When will he pass away?  Will his brothers be old enough to understand? Frankly, will I be old enough to understand? Can I be as strong as I will need to be for our lives to somehow continue?"  Along those lines.

I think it's starting to bleed through in my parenting of my other boys.  Drew has already asked us why we love Connor more than we love him and Tucker.  He was mad at us, and he knew that question would upset us.  Well played, sir.  But he already knows that if Connor needs something, we make it happen then and that he and Tucker have to wait until we are ready, and that there are things we cannot do because of his older brother.  Like go as a family to an amusement park.  Or almost anywhere are a family. 

I am wretched with the boys sometimes, because things have to get done and sometimes it's only me (and some nights, it's only Lee) who is there to care for them.  It's no fun for anyone.  I have drained the life out of my son's lives.  How do I get it back??  I don't want to be wretched.  I don't want to tell people everything is good when it isn't (though I will continue to do so because that's what's socially acceptable for the time being).  What I want is for us to find happiness in the every day again.  It's all well and good to have a vacation now and then, but the day to day is what needs to be better.

Friday, February 08, 2013

Birthday 2013

As many of you noticed on my last posting, we struggle each year at gift giving time to come up with ideas for Connor.  Since he does not excel at expressing himself, it's hard to determine what he will enjoy and what he won't.  And the many activities that are adapted for those with disabilities are usually not adapted *enough*.

But no more moping!  Instead, here are my thoughts about the birth of my first son, and pictures of him on or near his birthday through the years.

Connor, on the day you were born, I spent a long part of the day lying down.  Normally, that is fantastic, but this time, it was because I could not get up!  I had to have drugs that numbed my lower body so I could continue working towards giving birth to you without becoming exhausted.  Since you started to come at 4:45 am and you finally CAME at 7:57 pm, that made for a very long day.  I was not allowed to hold you for almost an hour after you were born.  You were held by the nurses, and your father, and your grandparents, but not by me.  I was too busy demanding to hold you and wolfing down food.  And then they handed you to me and I became a better person...just like that.  All the anger and rage I had carried around in my life which wasn't really that bad to begin with just went away.  I had you, and you were there with me, and you were so perfect, and despite knowing that I had spent the previous 39 weeks building you in my body, it only just occurred to me once you were in my arms that I had built you and that you were miraculous.

It is good that you helped me let go of anger and rage.  I do not know if we all could have survived your infancy if I had not.  Your first gift set a basis for me that made me be a better mom to you than I could have thought would be needed.

First birthday

 Two...

Three...

Four...

Five...

Six...

Seven...

Eight...

The night before you turned nine, your brothers made you gifts and wanted to take pictures with you.  For all the things you cannot do in this world, you have made compassion and strength a daily life component for Drew and Tucker, and they love you without question. 
 
Happy birthday, my special boy.  I love you with my whole heart.

Monday, February 04, 2013

Birthdays...

So Connor will be nine at the end of the week.  We are utterly hamstrung.  We have no idea what to give to him for his birthday to commemorate this incredible day.  Since he doesn't seem to get much joy out of toys, and struggles to interact with them at all, getting more toys that he can't or won't use is not the solution.  He has more clothes than he needs.  He has equipment he needs.  I found something I thought would be lovely, and it cost $6000.  You read that right.  $6000, not $60.00. 

Ideas, dear readers?  When Connor was a baby this was easy.  Now he's big, and I am utterly without inspiration. 

Tuesday, January 29, 2013

Another picture

Since there has been some clamoring for pictures, I submit to you this one, snapped yesterday, as he models the hat his Ani & Pop-pop got him on their trip to the Baltic last year.  It should be plenty cold enough for him to wear it laster this week, but not today.

It's been a tough week here.  Everyone who is male had some variation of the stomach virus that is going around, which resulted in a lot of bed linen changes, a lot of laundry, and a lot of Gatorade.  Luckily, though, no virus for me.  Fingers crossed that it lasts!

Have a good one.  I hope I can post something more fulsome later this week once life has been righted again. 

Wednesday, January 23, 2013

 
Finally!
 
This is Connor on New Years Eve.  Didn't quite make it to midnight.  Then again, neither did I...

Belly...

So as I've mentioned before, we've been working really hard to get Connor's weight up.  It's finally working.  It's working too well!  He's got a gut hanging over the waistband of his pants, especially after dinner.  We've kind of tabled the moving downstairs discussion for now, just because there are more pressing issues.  It's the first time I have wished for more pressing issues in a long time.

I recently found the boys' keepsake boxes.  I had a milestone calendar that a friend thoughfully gave me before Connor was born.  Once it became apparent that he was not going to be meeting those milestones, I dumped the calendar into the garbage and got a keepsake box instead.  I went through the house and found many things I've been meaning to put in them, if only I had the time to unearth those pesky boxes.  Well, mission accomplished.  I found all kinds of little treasures, including the clipping from his first haircut at 4 months old (he was a very hairy baby) and of course, that tooth.  The first one that he lost that he didn't swallow.  It's all in his box.  I added things to his brothers' boxes as well.  They have less.  As much of a packrat as I am, I did not do a very good job on this.  Now that I've made them accessible, I'm going to make a true effort to put things in those boxes instead of stashing them in places they don't belong.  It will be nice to go back and read the cards sent to my boys when they are older.

I am still working to get pictures updated.  I promise.  I just downloaded the required software and need to populate with pics of the little man.  He turns 9 in a little over 2 weeks.  Nine is fine!

Monday, January 07, 2013

Ooops...holiday busy-ness equals no posting!

Well, the holidays were certainly lovely and interesting, but they did make for poor, poor posting etiquette.  I apologize.

Christmas was truly full of family for us.  Between December 21 and January 2, we had one full day without family visiting, and it was fun.  It was a lot of fun!  The boys all got lots of extra family time, which is always a premium for me.  Connor also slept a lot, but also spent a lot of time playing and being awesome.  His brothers helped him open his gifts, and Tucker's relentless joy over each gift, for anyone, was infectious.  He opened up one of Connor's gifts and exclaimed in his ridiculously adorable voice, "A sweater!  Just what he wanted!"

He said that for every. single.  gift.  :)

He went back to school last week and while it was only a 2 day week, he had two really strong days.  I have high hopes for 2013.

However, we have started to face the reality that it's becoming time to move him from his cozy room 10 feet from my room to the downstairs bedroom we had created when we renovated in 2009.  I am very conflicted about this.  I do not want him that far away from me at night.  How will I hear him?