Patriot’s Day 2013

English: Boston Red Sox Cap Logo (Photo credit: Wikipedia)

I’ve started and restarted this entry several times, and I can’t seem to start it appropriately.  I’ve been watching and listening to coverage about the bombings at the Boston Marathon.  Even though it’s not on the same scale as 9/11 with planes versus buildings, or the number of people injured and murdered, it has a very similar feel to me.  Someone suffocated their own soul in order to cause as much fear and damage as they could on a day of celebration in one of our nation’s most famous and beloved cities.

An 8 year old child died today in the explosions.  A child the same age as my youngest daughter.  Someone doesn’t get to bring home their baby tonight.  I don’t want to imagine that.

People were having limbs amputated on the scene because otherwise, they would have died.  And this is only beginning.  It’s only been four hours.

Thank God there was already a virtual army of first responders, medical personnel, and police officers.

But don’t you know that in my Facebook feed there are already people almost taking delight, it seems, over how things like this happen multiple times daily in other parts of the world.  The insinuation being, of course, that this happens on a large scale in war-riddled parts of the world and we not only barely notice but if we notice then we don’t care.  That all of those lives lost, maimed, and traumatized are somehow… I don’t know what.  But I find it self-serving and obnoxious.  It’s like saying, “Why are you so upset? You don’t have a right to be upset about this unless you’re also upset and passionate about this when it happens anywhere else in the world! You’re a hypocrite if you’re upset about this! Especially if you don’t know anyone in Boston!”

Well, of course this hits closer to home.  It IS HOME.  People we know and love participate in the Boston Marathon and attend Boston Red Sox games.  They come from all over the country to participate.  People walk around the city before these events to get a feel for the city or to look for parking or just to walk from their lodgings to the events.  Boston is everyone’s city.  If you haven’t been to Boston as an American, you’ve at least been to a city much like it.  You know someone who has been there or lived there or gone to school there.  You’ve attended a sporting even there.  You’ve gone to the theater or a concert there.  It’s pubs and hockey and so much more.

This sort of thing doesn’t happen here in every day life.  It’s not expected.  OF COURSE we’re upset.  This shouldn’t be a way of life anywhere, and it’s not a way of life here.

The people at this event were from every area of the country and nearly every walk of life.  The Boston Marathon is one of those symbols of America.  Just like baseball and emotional patriotism (oh hey, Boston Red Sox game tonight as well as Patriot’s Day, remember?).  This was personal.

I’m not sure how I’m going to explain this to the girls.  It’s not as if we haven’t had enough practice breaking other bad news to them.  They’re not allowed to watch the news, so they won’t be allowed to watch continuing coverage.  Luckily it’s not a school week either so other children at school won’t be bringing it up and I’ll have some time to figure things out.  It’s not like we really know what’s going on yet… no one has taken responsibility for the bombs and any leads haven’t been publicized.  We just don’t know, and we don’t even know if it’s terrorism and if it is, if it’s home grown or international.

::sigh::

For now I’ll just hug them bunches and tell them how much I love them.  I’m sure they’ll squirm away and tell me how weird and embarrassing I am.  I’ll then point out that I’m not the one who clips barrettes to my lip and then can’t get them off, even though I’ve done that more than once.  Well not RECENTLY, right???

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Happy And Flappy

So sweet, this girl of mine.  Gracie is looking for songs on YouTube on my phone that she can dance to.  One song was completely annoying, but it got her going and she loved it so much that she starting hopping.  Pretty soon, she was flapping her hands in the air as fast as she could.

Here she was, bouncing and flapping to a song that I suddenly no longer found annoying, and I said,

“You sure look like you’re having fun! How flappy!”

While still bouncing and flapping, she smiled and said,

“It feels so weird! It is WEIRD!”

“Weird is awesome, huh?”

“It is WEIRD!” ::giggles::

And she kept on flapping.

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Fibro Veggie

My eldest daughter just asked me if being vegetarian was easy.  I had to be honest with her.

“Most of the time it’s easy, unless bacon is involved.”

I haven’t found a way to keep bacon in the house and prepare it for others without wanting to eat the whole pound.  As a vegetarian I would still eat bacon wrapped bacon, and then as someone with Fibromyalgia I would regret it for the next couple of days with some pain issues.  Even as I regretted it, I would consider it worth it because it was bacon.

Otherwise I don’t miss meat.  I miss some of the seasonings used.  For instance, if I’m craving buffalo wings I realize that it’s not the meat I’m craving but the buffalo sauce and dipping it in ranch or bleu cheese dressing.  I found a fix for that.  I put hot sauce on my pizza.  I also do something after that, which I used to think was gross when I heard people talk about it:  I take the hot sauce pizza and dip THAT into ranch or bleu cheese dressing.  It’s perfect.  Not vegan, but I’m not vegan.  :-)

I also enjoy seasoning my tofu with hot sauce and chili pepper, much like a taco, and while it will never taste like taco filling and will never be the same texture as any sort of recognized taco filling, I get the seasonings I love and top the tofu onto rice and black beans.  Sometimes the tofu has curry, sometimes Lawry’s salt.  Sometimes I put it in a chef salad with avocado in place of BBQ chicken.  It’s EVEN BETTER than BBQ chicken that way.

The hard part is if/when we go out to eat at a restaurant although most seem to be catering more to vegetarians these days.  It’s harder when you’re a guest in someone’s home and nearly everything they’re serving is meat or was cooked steeping in meat.  Making adjustments and accommodations is necessary, but it’s hard to compromise when it’s for health issues.  That’s what I’m slowly coming to terms with.  The rare cheat just might not be worth it.

So yeah, vegetarianism is easy when I consider the alternative.

Except when I’m confronted with bacon.

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Fighting A Fibro Cluster

Fibromyalgia Awareness (Photo credit: Kindreds Page)

New England winters are not for Fibromyalgia sufferers.  I don’t know whether to count this flare up as a new one, or a continuation of what I’ve been feeling for the past month. I get several days in a row of some of the worst pain in various areas of my body on top of my baseline pain, and then a day of relief with nothing but baseline pain.  Then I get up, it hurts to roll over in bed to get out of it, and I feel shock waves of pain as my feet touch the floor.  Reaching to remove the blankets sends rockets of pain through my back and shoulders.  I hobble to the bathroom.  It hurts to get in and out of the shower.  I feel grateful that when we moved in, the previous owners had already altered the tub so that it has handle bars inside on the walls.

As I wash and rinse my hair, I realize that I have a brand new clump of loose hair.  Not the regular that you lose while washing or brushing your hair… but twice or triple that amount.  Even though it happened several days ago instead of like a normal person with a normal amount, monthly.  I try to wash my calves, but it hurts.  I nearly trip getting out of the tub because I realize I can’t lift my legs up high enough.

Advil isn’t working.  Hydrating isn’t working.  Cymbalta isn’t working.  Positive thinking isn’t working.  Cussing isn’t working either.

The biggest insult isn’t the difficulty losing weight.  It’s not even having to use the cane and by the end of a day, hunching over from exhaustion and pain.  It’s when you have clusters of flare-ups and, as a woman, the hair loss is noticeable.  It’s when, as a mother, it hurts to hug your children because your skin is so hyper-sensitive.  It’s when, as a wife, you’re afraid that your husband thinks you’re using your pain as an excuse not to participate in certain aspects of the relationship and chores.  It’s when in spite of living a healthy lifestyle and eating well, you see positive results and think you have it mastered but then the hammer comes down and you get a solid month of, “Yeah, right.”

It’s when you wander in the fogginess at unexpected times, and it makes your usual sharpness and intellect seem dull and fleeting.  Stuttering, flaky moments, long pauses trying to find the right words… things that used to be blamed on Mommy Brain but are too far away from the newborn and toddler days to be Mommy Brain any longer.

The entire disorder is an insult.

I can’t afford to sleep all day.  I can’t afford to eat Advil nonstop.  I can’t afford to push my children and husband away.  I can’t afford to cry and use up all of my tears.  I can’t afford to use up all of the hot water to try to soothe the aching muscles and nerves.

I want a hot tub.

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A Special Saturday Gratitude

It’s Saturday, and I don’t have anywhere to be.  Strike that, my friends.  It’s Saturday and I don’t have anywhere to be THAT I CAN RECALL.  I blame it on the fresh snow and my need for coffee to help dispel this new migraine.  I’ve been awake since 7:00 AM because that’s when my noisy children started waking up and moving around.  That’s when I noticed we got a couple of extra inches of snow overnight rather than a “dusting.”  It’s also when I figured out why I was waking up with a headache that I was ready to blame on my children.

Although I count myself very lucky this morning that it’s a migraine and not carbon monoxide poisoning.  One of the first Facebook statuses I read this morning was that of a dear friend who said she woke up with a headache that turned out to be from her furnace spewing out smoke and was leaking.  They had to call the fire department and get some emergency service done to their furnace.  I’m so very grateful that they woke up this morning.  And selfishly, I’m grateful to still have my friend and her family.  It’s a good reminder to get your furnace checked and serviced every single year on schedule no matter how old or young your furnace is, okay? Please? I know that it’s a good reminder for me and The Mister.

And on that note, I’m going to get my butt up and make some coffee and indulge Gracie by making the Cinnamon Roll Cake that is her new favorite treat.  I pinned it a few weeks ago but I’ll share the recipe shortly.

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There Was A Plan

A few nights ago I was at CVS picking up a couple of prescriptions.  They blamed it on the computer system, but there was a problem filling  one of the prescriptions so I had to wait extra time.  It was late and I’d had a busy day, and my pain tolerance was waning.  I had already been there for 15 or 20 minutes and it was looking like it was going to be another 20 minutes, at least.  That’s not usually a problem, but the pharmacy tech was a new one they hired recently and she’s not particularly friendly nor is she, well, knowledgeable or concerned about moving faster than a snail.  She was paired up with a pharmacist I had never seen before, and while she was quite chummy with this handsome dude, he wasn’t a particular charmer nor was he in the running for the Olmpics 100 yard dash.  It wasn’t even very busy in there that night.  No eye contact, shuffling, moving like they lived in Jell-O.

It was annoying.  My blood sugar was low and I was thirsty.  Boo.  To occupy myself, I checked my CVS card and out printed a $1 Exra Buck so I got some Gatorade.  I sat in the chairs near the pharmacy registers and read magazine titles to amuse myself while wishing I had some Advil that I didn’t have to pay for in order to take it.

Just when I thought I couldn’t stand it any more with Mr. McSlowyson and his sidekick, Pryncess Rude’N'Slow, a tall blonde woman walked up to the desk asked for some refills.  She also stated some issues they might have, and wanted to know if one of the over the counter things she wanted to take would interact badly with any of her daily medications.  As she listed them, I recognized several for anxiety, depression, and Bipolar Disorder.  She was having trouble sleeping, she said, because her best friend just passed away suddenly and unexpectedly from a heart attack.

As the pharmacist looked up her information, I told her how sorry I was for her loss.  She thanked me, and she looked so lost but also like she wanted to talk.  I nodded to her, and she said again, “My best friend just died.  I’m devastated.”  As we talked I found out that her BFF was only 32 years old.  They had been best friends for more than 16 years.  She felt like she lost her left leg.  She told me about how wonderful this woman was, and how warm, sweet, and funny.  She told me about her children and husband, and how she died.  She told me about the funeral.  I couldn’t help but cry with her.  And then she ran out of words.

So I hugged her.

She told me I was the first one to hug her.  She had hugged so many people to comfort them in the last few days, but no one had hugged her.  No one told her to try to take care of herself.  That just appalled me, but I kept it to myself.

Suddenly my prescriptions were ready and Pryncess Rude’N'Slow was ringing me up.  Mr. McSlowyson Pharmacist brought the blonde lady to the consult area.  As I left, I wished her well, but as I drove home I wished that I had thought to ask for her e-mail or phone number.

I hope she’s taking care.

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Joy To Gracie… Please!

Cottingly Fairy topped with Christmas hats because Gracie loves fairies

This morning it’s very clear that the vacation “routine” (or lack thereof) is getting to Gracie.  She’s overly sensitive, agitated, moody, grumpy, argumentative, bouncy, and flappy.

It’s always difficult for her when she’s out of the school routine even though she would almost always rather be home.  This time is more difficult because I’ve been sick since the middle of the night on Christmas.  At least it waited, right?

She’s testing her sisters’ patience this morning, so they’re going back and forth between having some fun at her expense and trying to teach her life lessons.  In the life lessons they go back and forth between taking a hard tack and being gentle.  No matter the angle they take, they get the same result: screeches and shouting and nothing for their efforts.

Anneliese finally simply said, “Gracie when we make you mad no matter what even when we aren’t trying you just have to ignore us.”

Gracie: “No I do not.”

Anna: “Gracie, you just have to learn to ignore us.”

Gracie, clearly disgusted and incredulous: “That is not something you can ‘just LEARN!’ You can not ‘learn’ to ignore! That is hard!”

Anna: “I don’t know what to tell you.  You just have to.”

Gracie: “Brat!”

Now the trick will be getting her to allow me to get her to do some sensory activities.  She hasn’t been receptive so far.  I got a kick in a shins and a swat toward the face for my efforts several minutes ago.

It’s time to go re-teach the sisters that when their sister is on the verge of a meltdown, you back away.  It’s the whole Burning Building comparison.  If a building is on fire, would you run into it? No? Well, when your sister has days like this she’s a burning building.  Move away from the burning building.  You likely won’t teach her anything, because it will just burn up.  Wait until the fire is out and it’s been rebuilt.  And she stops using the very literal, “Wwaah” to get across the point that she’s upset and to start her wailing.

I probably should have said, “It’s time to go rescue the sisters…” and I said, “re-teach” instead ha ha.  It’s because they really are so good about teaching her.  They’re wondering teachers for her, and she pays exceptional attention to them.  Most of the time they actually can calm her down without using sensory tools.  She doesn’t want to be upset with them, and she doesn’t want to hurt them.  When things like this morning happen she comes away from it feeling like a bad sister.  In fact, yesterday she accidentally-on-purpose-but-really-accidentally ruined something Anna had set up.  It could easily be redone with some patience, but the look of hurt and annoyance on Anna’s face made it clear to Gracie that she had done something wrong even though Anna told her that it was all right.

Gracie: “I feel like I must be a bad sister.”

Anna: “No, Gracie, you’re not.”

Gracie: “I feel like I must be always doing the bad thing.  I am a bad sister.”

Anna: “No, Gracie, you’re not.”

Gracie: “But… I feel like I always hurting my sister! I not acting like loving my sister!”

Anna: “Gracie, I know you love me.  I love you.”

Mom: “Awww, girls, why don’t you hug and make up?”

Anna: “Mommy, I’m just not ready to hug Gracie yet.  She did upset me.  Gracie, you need to help me fix this.”

Gracie, sniffling: “Okay.”

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Gracie Feels Better

I left work late today.  While I was waiting for the car to warm up, I called home to find out everyone had eaten already except Frou Frou. She wasn’t interested in anything in the house.  She was probably detoxing after going back to school from two days home sick.  This morning was a mother of a meltdown because she didn’t want to go back to school.  She’s ready for a vacation, but just had to get through today and now tomorrow.  I did manage to get breakfast into her even though she insisted she wasn’t hungry.  I got her dressed in spite of flailing arms and legs landing bruises in my right side and arm.  I’m fairly certain that my ear drums were blown out and my neighbors could hear the early mornings screams of,

“I AM NOT! GOING TO! SCHOOL! I AM SICK! AAAHHH! YOU SUCK! I HATE YOU!”

“That’s okay, honey.  I know I’m a terrible mom.  But if you don’t go to school when you’re feeling well, that’s called truency and that’s against the law.  But you won’t go to jail, I will.”

“NO! YOU CAN’T GO TO JAIL!”

“Are you sure? I’m a terrible mom, after all.  You hate me.”

::squeaks:: “No I do not. Shut up.”

The bus came a couple of minutes before I was expecting it this morning, and I didn’t see it.  Miss Gracie did see it.  Suddenly, she shouts and grabs her backpack and starts to race out the door shouting,

“THE BUS! I WILL BE LATE! I CAN NOT BE LATE!”

I don’t know if it was the fear of truancy or she really did want to go to school after all, but it was like her butt was on fire.

I did have a productive conversation with her while I cooked supper last night, though.  She was distressed at having to go to school today and kept insisting she wanted to stay sick and would make herself sick if the germs were really gone.  I kept thinking how it was ironic, somehow, that THAT was the long conversation my often-non-verbal daughter was choosing to have.  Since she was chatty, albeit in a foul mood, I took advantage of it.

It’s not really school or her teachers she hates.  She loves her teacher and her friends.  She enjoys most of the subjects.  What frustrates her is that the day is not full of playing.  The work is hard.  Well, yeah… it’s fourth grade!

Worse than hard work and homework is the sensory overload.  It smells different than home.  It sounds different than home.  It’s louder than home.  There are people sounds.  Breathing sounds.  Echoes.  The lights are too brights.  The smells at lunch mix in a gross way.  There are eating sounds at lunch.  There’s shouting and screaming in the hallways.  It’s too cold and windy at recess.  People have eyes and use them to look at her.  She has to keep her coat on so that certain things don’t touch her arms in the wrong way.

And even harder than all of THAT? Is having to hold it all together at school and pretend that everything is all right.  Not wanting to seem different than the other children she refuses to ask for sensory breaks but will accept them when the teacher or her para offer them.

After she unloaded all of this burden last night, she was clearly much more relaxed.  This morning we had round two of that conversation, and I made sure she knew I would tell her teacher about it in the morning e-mail.  That eased her mind, and could be another reason why she willingly got on the bus.

The Mister said that when she got home, she was happy and went to her room.  She didn’t even notice that I wasn’t home.  I’m always the one who gets her off the bus.  She didn’t come down to eat, so on my way home from my late day, I stopped at Subway for the two of us.  She actually ate a fully stuffed Blackforest ham sub.  She’s now sitting and watching My Little Pony with her Daddy and chatting cheerfully about the show and history of Ponies and the types of  Ponies.  I’m grinning ear to ear, because it’s a beautiful sight.

Now I can go to bed, both of us stuffed, and take some Advil for my hurting, aching self.  I “get” to stay home tomorrow with Eldest Girl, who came home early with a fever today and the Worst Cold Ever.  Oh, that was a soap opera all on its own but I’ll save that for later.  The school nurse is on my shit list, suffice it to say.  The Mister said she’s been asleep since 3:30.  It’s almost 8:00.  I’ll wake her at 10:00 for Mucinex, Advil, and melatonin.  :-)  Hopefully, The Littlest won’t have a turn at this fever thing.

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Dilemma Of The Day

For the second day in a row, I had to keep Frou Frou home because of a fever.  Don’t worry, the fever broke and she’s (hopefully) going back to school tomorrow.  That’s hoping that the fever doesn’t come back and spike again tonight.  That’s not the dilemma.

Over the past weekend Frou Frou received a jewelry box with a little spring lock on it.  It’s the kind of lock with a tiny key.  She filled the box with memories and she loves this box.  Except…

She also locked the key inside the box.

How do I open the lock without ruining the box?

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Rumors Around Sandy Hook

I feel like I have an obligation to write about the tragedy of the Sandy Hook shooting.  I’m so overwhelmed that I’m not entirely sure where to start.  There’s not exactly a beginning… and I feel like some of the things I want to say will come off in a chastising manner.  I’m not really sure I’ll be able to temper that, to be honest.

I feel a responsibility to post because I live in Connecticut; because I have a seven year old daughter in elementary school; because I’m a mother; because I have strong feelings about this tragedy; because I have Generalized Anxiety Disorder and Depressive Disorder;  and unfortunately, because news outlets are reporting that the shooter “may have” had some mental health issues and then that’s immediately followed by “and Autism.” Then it’s clarified that it’s thought that he may have had Asperger’s Disorder, a type of Autism Spectrum Disorder.

I feel as if I can’t express and write about what I need to write about until I get rid of the giant pink elephant in the room: that the shooter may have had Autism Spectrum Disorder and also been mentally ill.  First and foremost, let me state in no uncertain terms that Autism is not a diagnosis of mental illness.  Can it be a co-morbid diagnosis or diagnoses with other neurological disorders and/or Depression Disorders and/or Mood Disorders and/or Oppositional Defiant Disorder and/or Bi-Polar and/or Schizophrenia and/or Psychosis and/or ADD/ADHD and/or OCD and/or Anxiety Disorder and/or other Psychological Disorders? Yes.  I’ve written about this before.  It’s very possible and very common.

Except that just like the great majority of neuro-typical people don’t go out and commit mass murder or murder their loved ones or commit crimes that land them jail, neither do people who have Autism Spectrum Disorder and comorbid diagnoses.

I have a child on the Autism  Spectrum.  She has many developmental delays, including social delays.  It’s often like raising a toddler or a preschooler, especially with her emotional level and impulse control.  She’s not inherently violent and she’s not a bad girl.  She’s sweet, charming, intelligent, funny, beautiful, shy, talented, artistic, and vibrant.  I couldn’t imagine my life without her.  That’s not to gloss over the difficulties of raising a special needs child who will be a special needs teenager, a special needs young adult, and a special needs adult.  I’ve often shared our difficulties here, so I won’t go into great detail again in this post.

Mainly, I don’t want to keep feeling as if I will be put into a position of having to defend my autistic daughter.  I don’t want to feel as if I’ll be put into a position of having to defend my parenting of her to people who have never met her and only know that she’s autistic.  I don’t want to have to worry that people who already know her to suddenly become wary of her or fear her simply because she has Autism.

If that young man were mentally ill or had Autism Spectrum Disorder or any other neurological Disorder, then I hope that people will be smart enough not to paint the rest of the community that shares that characteristic with the same brush.  Because I can guarantee that his having any particular neurological disorder is not what “caused” him to do what he did.  While I will not blame his mother’s parenting or even his parents’ divorce, I WILL say that this young man’s entire life had to  have led up to the decisions that he made.  His world must have been a very dark one whether he was mentally ill or not.   Whether he had Autism had nothing to do with it.

But I will say this one last time in this post: It has NOT been confirmed that the Sandy Hook shooter had mental illness nor Autism of any kind.  This is only based on the speculation of gossip and comments that were supposedly made to the police by the shooter’s brother whom he hadn’t seen in two years.

Maybe now I can move on with the business of mourning and processing.

 

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