Tuesday, September 27, 2016

When School is your Job

My little Drama Queen started middle school this year...  seventh grade! Ack!  My attention has been so focused on Tiny for the last year that I feel like I've missed the point at which she suddenly grew up.

Middle school presents a whole new set of problems with the social structure restructuring as elementary schools funnel together, and with academics getting split from hybridized subjects taught all at once to six rigid stop and start of six different subjects taught by six different teachers in six different styles.

DQ has always been a little lazy about schoolwork.  I'd say she's pretty smart, catches onto new topics quickly, but she is a Bigger Picture person and often misses important details like writing her name on the paper or seeing that it must be minimum 300 words.  In the past, with an elementary grading system, they were a little more flexible if she showed true comprehension of the lesson.

But middle school is straight points.  Miss an assignment?  Sorry, your A average is now a C.  Didn't get all of your participation points because you were sick? Oh well, you didn't need those anyway.  Pop quiz the day after a new concept was introduced?  Hope you didn't have any questions!

In the end, I think this is probably a good thing to transition to at this age, because high school and college are both numbers-driven, and she needs to learn how to survive before it is really super important to her eventual career choice. 

When I was in school, the competition of the grade itself was incentive enough for me to hold my 4.0 throughout.  When a teacher announced that only five students would earn an A in his class that quarter, I made sure I held the highest A.  But DQ isn't like that.  She's a THING person.  She responds to getting things and experiences and making memories by doing fun stuff.

So how do I enable her to work hard and feel like she has a reason to push herself to do better?  Every kid needs a reason...unmotivated kids, whether unmotivated internally or externally, tend to do poorly and simply not care enough to participate.

We've decided to pay for good grades.  Let me make something clear:  I'm 100% against paying kids to contribute to housework ("traditional" allowance) when they live, sleep, and eat in the house they're cleaning.  They should help because they live there.  So we have run into this tiny problem where we are facing difficulty teaching effective money management because...DQ doesn't have any.

So.  The Dollar System was born.  Every Friday, I check her grades.  For every A+ she has (over 100% in the class), she earns $2.  For every regular A, $1.  For every B, $.50.  For C's, $0.  And for D's and F's, she pays us $1 and $2 respectively.  So this last Friday, when she had four A's and two A+'s, she earned $8.

There's a couple rules, though.  ANY overall C or below gets her removed from all of her extracurriculars until her grades come back up.  And she must save 25% of her allowance in a separate account.  She is responsible for paying for her own fun extras (Starbucks when she's out with friends or dance tickets or a yearbook, e.g.).  We use the RoosterMoney app, which also allows her to set her own savings goals and add to them.

So far, it's been a good exercise for both of us.  Every week, I check her grades, which keeps me on top of what's going on in school, and award her allowance based on them.  And when an A slips to a B, or a B to a C, we discuss how averages work, go over the syllabus together, and open the grade book to talk about whatever is dragging her grade down.  She's become a little bolder in asking for extra credit, and she's also been exercising better personal responsibility over her homework and making sure it's in on time.

And this last weekend, when we attended Geek Girl Con downtown, she was thrilled to have her own money to spend.  So I think all around, this has been a great way to start the school year.

Wednesday, September 7, 2016

Special Needs, Interrupted

Normal Activity: Tree-Spotting
Every day, I wake up and think, "Today...today is going to be a good day."  I'm not always right, and I'm not always firm when I think it, but every morning when I crack my eyes open between six and seven, I try to be optimistic.

Today, I sent my daughter off to middle school.  We've been prepping for it, essentially, all of August.  She needed EVERYTHING...clothes, supplies, outerwear, boots, backpack...That kid is harder on clothing than either of my boys, I swear it.  I forgot to get her a haircut, but I guess that's okay.

Next week, a week from today, in fact, Tiny heads to preschool.  So not only do I have DQ starting MS, I have Tiny in Pre3.  I feel ridiculously old this week.  There are nine years between DQ and Tiny.  There's sixteen months (two school years) between Tiny and Squeaky.  And yet, quite often, I feel as though I have a teenager and twin toddlers.  DQ seems years older than she should be, and with Tiny delayed as he is, he and Squeaky are pretty much on par verbally.  They are worlds away from each other cognitively and physically, but it's hard to remember that when Tiny can't even ask for a certain toy instead of pushing.

Having a special needs middle child is kind of this weird interruption of normal life.  Here we are, having kids...  DQ is smart and funny and sassy.  She does well enough in school, finally finds her tribe of friends, and really starts flourishing as a kid.  And then on the other end of the divide, you have Squeaky, who is often too serious, but has bouts of silliness that make you wonder what's really going on in his little brain.  He plays well, he's sweet, and out of the three...he's the easy one.  Good-natured and laid-back, that's my Squeaky.

And then smack in the middle of everything is Tiny, with all of his problems and struggles.  He doesn't understand cause and effect, he steals toys and shoves, he cries and bangs his head in frustration.  We are coming up on D-Day (diagnosis day) for him, and the closer we inch to it, the more I realize how wonderful and carefree our first two years with him were, before we knew.  Having a special needs kiddo as my middle makes all "normal" behavior in our family stutter and falter as we try so hard to keep up with his needs; I often wonder what life would be like if we had been dealt a better hand.

I find myself looking forward to the "normal" things I'll get to do with Squeaky, once Tiny is off to school.  Things that Tiny can't handle, like the Children's Museum, because it's too busy and noisy all of the time.  I'm looking forward to library sing-alongs, which we haven't been able to go to because Tiny can't tolerate singing.  I'm looking forward to baby dance parties in my living room, which we don't normally do because Tiny gets upset when he can't make his body do what he wants.  I can't wait to play in the play area in the mall with Squeaky, which I avoid now because Tiny is so distracted by the mall shops that he won't stay in the play area for more than five minutes after arrival.

Sometimes I feel like TS has interrupted our life so badly that I can't even remember where we were before it happened.  Like we suddenly lost power in the middle of a good movie, and I keep trying to rewind to find our place.  And everytime I get close, the power goes out again.  Don't get me wrong:  We still do have good days, but we rarely have "normal" days - normal by NT standards, anyway.   Our days tend to have quantitative benchmarks attached:  I only yelled once today; I got five loads of laundry done; Tiny got BOTH naps; the boys were happy in their swings for more than ten minutes; I drank five ounces of my iced eight ounce espresso before it got gross and watery.  I guess I'm looking forward to a little less interruption, even if it's only three hours a day, four days a week...and a little more normalcy while Tiny gets the help he needs.

Monday, August 29, 2016

The Guilt of Growing Up

Cleaning buddies are the best!
As D-Day (that would be Diagnosis Day) approaches, I find myself reflecting a lot on the past year.  I've read some of my previous posts and hurt all over again for where I was and what I was feeling on those bad days.  I've counted my blessings.  I've thanked my stars.

In one week, I'll have a middle schooler.  In two weeks, I'll have a preschooler.  In that time, I'll be left with only one little one here at home with me, one who has never really gotten one on one time with mom.  I keep thinking to myself....what will I DO?!  More laundry?  SOME laundry?  Maybe it'll actually regularly make it into the dryer!

I keep looking for opportunities online to take Squeaky to things that I've always wanted to take him to, but couldn't, because Tiny gets so overloaded.  Things like storytime where they -- GASP -- sing songs!  Tiny screams and covers his ears when people sing, but Squeaky stands up, claps, dances, and tries to sing too.  Things like the petting zoo, where I have no doubt at all that Squeaky will do that cry-and-pet thing he does when he's afraid but really, really wants to try.  Things like apple picking, which is just too hard all on my own with two little people running in opposite directions.

For once...I feel like there's freedom on my horizon.  It feels like warm sunshine on my skin after a month of rain.  It feels like the smell of cinnamon and chocolate spinning in the air as cookies bake.  It feels like the lift you get off a trampoline on the rebound, soaring high into the air before plummeting back toward the elastic.

It. Feels. Indescribable.

And then I feel guilty, because the only way to achieve this is to put Tiny in a developmental preschool, because his brain is broken.  I feel bad for feeling SO GOOD.  But even that three hours a day, four days a week feels like heaven after the slog and burn of being so trapped at home for three years.

I try to console myself... the last three years weren't ALL bad.  There were a few rays of light among the dark clouds as they rumbled and grumbled by.  Hell, prior to D-Day, except on the topic of sleeping, I was fantastically happy as a new mom.  It was hard, but at least I was happy.  I remind myself of a few things:

  1. I've done everything I can think of, everything I've researched, and everything I could do to get my child all the help he needs.
  2. I've done my best to be fair and kind.
  3. I've tried to remember that I also have two other kids, and treat them appropriately, even when I'm having a rough day.
  4. My kids are happy, (mostly) healthy, (mostly) clean, well-fed, clothed, and loved.  And that's what matters.
  5. ...All kids go to school eventually...  And many mothers with only NT kids rejoice just as I have.
So as I tick things off the back to school list for my TWO school-aged kids, I try to tamp down the guilt that hugs hotly around the base of my neck.  My mantra lately is, "I'm doing the best I can.  I've done the best I can.  I will do the best I can."  Still, even though I was adamant that Tiny needed to get to school for all the great things it will bring him, I know that as the day approaches, my doubt and guilt and desire to keep him home mounts.

Tuesday, August 23, 2016


Growing up is hard to do!
In about twelve hours, my baby will be three years old. 

His birth was a 52-hour long struggle, culminating in an emergency C-Section.  But he was strong, and the doctors were amazed at his Apgar scores and good nature.  I was the weak one, having bled so heavily that we had to stay in the hospital for a few extra days.  He refused to nurse, lost 10% of his body weight during our stay.  And then, there was the Cystic Fibrosis scare - thankfully, it was a false positive, but as he was my first baby, I was petrified at what could be.

We struggled with illness so much in his first year.  Nine ear infections alone, plus bronchial and sinus infections with them; we ended up getting tubes placed right after his first birthday.  But he was happy through and through, taking his meds like a champ and babbling adoringly at me after.  He was such a congenial baby, but he never slept well.  By four months, the hubby and I would look at each other and say, "Any day now, he'll start sleeping longer."  By six months, it was a mantra.  By ten months, we were exhausted and frustrated.  I let him cry it out too long, and still, he didn't sleep.  I remember watching the minutes tick by on the clock as he screamed for me, begging me with his tears to come help him sleep.

Year two rolled around, and our happy boy still wouldn't sleep.  But worse, the language gap that I saw forming from his first years was widening.  He wasn't talking.  I referred to EI to get him some help right before he came down with Hand, Foot, and Mouth Disease, running a 104-degree temp for several days.  He got over it just as quickly as it set in, but not even a week later, I started seeing him twitch and duck his head.  Concerned, I took him to the doctor, who referred us to the First Seizure Clinic at Children's, who did an EEG...He was put on anti-convulsants, and an MRI was ordered.  Not long after that, he was diagnosed with Tuberous Sclerosis, and our lives -- already so changed from the perfect image I'd imagined -- altered even more drastically.

This last year has been a crazy mash of therapies, tests, medications, preparations, frustrations, and love.  If anything, I'm honest here, because it's important to me that those moms out there with special needs kids understand that this life we lead is no "miracle" life...it's no "warrior's life"...it's no "special" life.  It's all-consuming, immersive, and exhausting.  But...it's also an amazing teacher of patience and perserverence.

This last year, I've learned more in how to appreciate the cuddles and kisses instead of wasting time dwelling on the frustrations.  And now, with my baby so big, going off to school in less than a month, I find myself misty with nostalgia for those days where it was just me and him in a big, quiet house, snuggled up on the couch together.  I mourn less and less for that ideal, normal life as he forges forward in the only life he knows, exploring and getting into heaps of trouble -- much to my exasperation most of the time.  It's hard for me to express in words my hopes for him, so for now, I can only say that my biggest hope for him is a good year, a seizure-free year, a year of learning and catching up, and a year where the smiles and wonder come back faster and brighter each time he expresses them.

Happy Big Three, baby boy.

Thursday, April 7, 2016

Dear Impatience...

This morning, there I was, minding my own business in line for coffee, two tots in the shopping cart minding THEIR own businesses (they're good shoppers, and we needed sandals today for everyone).  The lady in front of me struggled a bit with her form of payment, but she and the cashier worked it out in under five minutes.

The twenty something texter behind me muttered under her breath impatiently about it, "Don't know WHY I come here..."

My turn.  I smile at the cashier, and ask, "May I please have a tall coconut milk with a bit of strawberry in it, no whip, split into--"

The muttering ramped up again, "F**king hippie, non-dairy ordering b*tch taking a million years..."

"--split into two cups with flat lids and trimmed straws for my LACTOSE INTOLERANT CHILD," I turned and looked directly at the mutterer at that point, and smiled, finishing my order, "And a caramel macchiato, skim and Grande, please."  The cashier repeated the order and I nodded.

Still holding the eye of the Bitchy McBitch behind me, I told her sternly, "Patience will bring you many good things in this world, but that mouth of yours will not."  I set an extra $5 on the counter and told the cashier, "That's for the last behind me.  Be the change you want to see and all that."

The girl watched me, jaw slack, as I collected my cups and went on with my shopping.

What a way to start the day.

Tuesday, April 5, 2016

He's Never Said, "I Love You."

Today, I was absorbing the adorableness of a maybe two-year-old at the Y as she pranced around the lobby in tiny black tap shoes, singing nonsense, when all at once, she took her brown, curly pigtails and zoomed over to her mama, enveloping the woman's knee in the biggest, squeeziest toddler hug that she could muster.

"Love you, Mama!"

I had to pretend serenity, collect my things and head for the restroom as tears gathered in my eyes.  I have good days and bad days, like any other SN mom - like any other TODDLER mom - but this morning, I held my breath and shoved the door shut behind me before losing it.

Instead of "I love you" from my son, I got "Tuberous Sclerosis" from his doctor.  Instead of,  "Mom, can I...Will I...why is...?" I got "masses in the brain...seizures...delays..."

My son cannot verbalize love, and it breaks my heart.

Don't get me wrong, I'm an epic translator of Hamlish, the mash of sounds and grunts and gestures mixed with half-formed toddler talk and repetitive syllables.  I KNOW my son loves me.  He hugs me often between playing games with his brother, touches my face gently when I'm sad or tired, snuggles me as he winds down to sleep. 

In the dark of the night, he scoots closer to me and tucks his giant noggin under my chin.

I know, as a mother, that my son loves me.  He doesn't need to say it...

...but reclaiming those stolen words would be nice.

Sunday, February 28, 2016

To Mourning a Diagnosis, To Parents, on National Rare Disease Day

Today marks the end of the first six months since Tiny's seizures began.  When Tiny's diagnosis was handed down, I'd never even heard of Tuberous Sclerosis Complex (TSC),  which was weird -- I'm a nursing student with a penchant to find and research rare diseases in an effort to educate myself, impress professors, and help my work stand out from the others they teach. 

I remember getting the EEG result before diagnosis: abnormal.  Okay, I can handle epilepsy, I told myself.  Thousands upon thousands have seizures and lead perfectly normal lives.

I remember getting the results of the MRI before diagnosis: abnormal.  Okay, so there's something in there, I told myself.  It'll probably have to be removed.  Given his symptoms, it's probably not cancer.  Okay, I can deal with surgery.  It'll be scary, but I can do it.  Tiny is strong and robust; he'll recover.

And then we sat down with the neurologist.  It's TSC, a rare genetic disorder...  I blinked, glanced at my husband, frowned.  His face was blank, too. ...characterized by masses in the brain... His brain was compromised.  I knew that.  I could handle that.  ...heart, lungs, liver, kidneys, and eyes...  uh, say what?  You mean that this isn't just his brain.  ...It can cause seizures, developmental delays, mental retardation, organ complication, and sometimes in severe cases...  tears sprung to my eyes.  Please don't say it.  Don't say the D word.  My baby's only two.  Please, please, please.


The Neuro proceeded to point out the problems on the MRI as numbness clawed from the top of my head, from the tips of my fingers and toes, and seep into my lungs.  Breathing?  I'm not sure I was getting proper oxygen into my lungs.

I went home and cried for the rest of the day.  I drove in circles around the farmlands while the boys napped in the back seat, and finally pulled over, put my head against the wheel and sobbed.  ...We won't know how Tiny is affected, as the range of cases is so wide...

I gave myself one more day to cry, stayed in my PJs, hugged my babies a lot, ordered take-out for dinner, hugged my husband a lot, and cried. ...If the masses grow, he may require surgery or medication to shrink them, but the damage may be irreversible...

In the months since, we have had a barrage of tests, most of which I had to help hold down or snuggle my son through.  I didn't cry then; crying in front of Tiny won't help, especially when he was already stressed about the tests.  ...He may not be able to do the things other kids can.  His seizures may not be able to be suppressedFor now, we watch and wait

I've had my days where I could barely hold it together.  Days where I'm angry at everyone and everything.  Days I'm so fearful and grateful and mindful that I'm overwhelmed by emotion.  Days where I just don't care anymore.  I swing between the stages of grief, and I know them all intimately...all, except acceptance.

I don't accept this diagnosis as the end of my Tiny.  I don't accept the well-meant, but misplaced platitudes from people who try to make me feel better about it.  I don't accept that my child will miss opportunities just because he won the genetic lottery.  I don't accept TSC, and I don't accept that I'll ever be okay with the fact that my son is fighting it to live a normal life.

I do, however, understand that this is the new normal, and I'll strive to make it as close to everyone else's normal as I can.  For Tiny. For me.  For our family, which is also affected by Tiny's tubers.  ...You should find a support group, so you're not alone, so Tiny has kids like himself... Doctors mean well, but there is nothing more torturous than knowing that you can't fix your child's problems, that he'll have this disease forever.

To all those dealing with rare disorders, I know today isn't a day for celebration for you, but it is one of recognition:  of your fight; of your passion; of your pain; of your babies; and your love.  I wish you the happiest of National Rare Disease Days and the best of wishes and outcomes for those who are hurting - parent and child alike.

Monday, February 22, 2016

Mindful Cooking with DQ

Mindfulness has become a buzzword in recent days, to the point where I try to go out of my way to avoid using it, but in the case of my tween becoming more teenag-ery, it's a good word.  Caught up as I am with the demands of a pair of toddlers, I often expect DQ to "figure it out" when it comes to entertaining herself, studying and homework, and snack-making.

I admit that this may not be fair, as I'm comparing 11yo DQ to myself at 11, twenty-some years ago.  I do think she's capable of feeding, clothing, bathing, and cleaning without being told to do those things.  She's proven her capability many times over.  But my former 11yo self differs quite a bit in personality from DQ.

- DQ is super social; I preferred my own company.
- DQ requires constant acknowledgment; I was motivated to stay under the radar by an abusive stepfather.
- DQ is not self-starting; I was independent by eight years old.
- DQ is desperate to learn from me; I self-taught myself.
- DQ takes everything to heart; I didn't allow people's words to get to me.

So, when she asks, "Can I help make dinner?" my first instinct is to deny her because I can do it faster myself.  But then that word mindful floats through my head, and I try to mask my reluctance. 

In truth, once we get going, I really do enjoy her company.  She gets super focused and careful when we cook, listening as I babble on about why we use this temperature or that knife, or how to substitute ingredients.  And she recalls the information and steps well.  She's like a completely different kid in the kitchen, one I'd like to see continue to develop.

After dinner, if she decides she likes the meal, she grabs her journal and records the recipe from memory, asking questions as I pick up and put away the leftovers and load the dishwasher.

The real reward, however, is when her mom hails me over IM to let me know that DQ made dinner tonight, and it was delicious.  I hope that, in twenty years, she forgets the fights and rules and remembers our time at the stove.

Tuesday, February 2, 2016

That's not Potato!

Helping in the Kitchen during CSA Time
"Can I help you make dinner?" DQ asked last night.  I admit, I bit my tongue against a sigh.  She's eleven, and she really does have a desire to learn how to cook things, and that is GREAT..I just..wish dinner was at noon when I had the energy to give proper instruction and didn't need to be by myself to recoup before the chaos of the dinner table.

Being an introverted mama is ridiculously hard.

So I pushed a smile onto my face.  "It's only soup," I told her apologetically, "so it's mostly just reheating and stirring."  Her face fell. "But," I hedged, "if you want to pull up a stool, I'll walk you through how to make it."

She did, and I grabbed a bag of leftover mashed potato from our last CSA box in the fall, a bag of frozen corn from the $1 sale, a bag of frozen sweet peppers I'd cored and quartered in the summer, and a sandwich baggie of cooked, frozen bacon from the freezer.  Soup is my JAM. 

I asked DQ to get me the carton of chicken broth from the bashed bin at the market -- generally, I make my own, but we haven't had a whole chicken in this house since Halloween.  Then, after adding my potatoes and some broth to dilute them to the pot, I handed her the whisk to bring them together and started chopping broccoli to roast.

"I could never do that," she commented seriously, watching me cup the larger florets in one hand and slice the stem with the other.

"Stir," I reminded her, then told her that if she was going to learn to cook, she couldn't be afraid of ovens or knives.  I dipped my spoon into thickened broth and tasted.  What the...?  I'm sure my face was a mask of confusion because THAT was NOT potato.  I handed DQ the spoon, "Try it."

She tasted, frowned, shook her head, "That's NOT potato."

"I know," I told her, "It's Alfredo.  Garlic Alfredo Sauce."

"Still tastes good," she decided, tasting again.  

I'm kind of like my grandma, in that when I cook, it's a bit of this and a bit of that and a lot of tasting.  I almost never use a recipe unless I'm trying to make a dish with which I'm unfamiliar.  The problem with that method of cooking is that it's very hard to pass on the recipes, which means much of what I grew up with has been lost with the death of my grandmother more than ten years ago.  I'm hoping that by actively teaching DQ how to cook, some of our favorites will live on, even if not in writing.

DQ's Crab Bisque

(Makes 4 Servings) 
  • 1/2 Jar Garlic Alfredo Sauce
  • 4c Chicken Broth
  • 1/2 Head of Broccoli, Roasted or Raw
  • 1/4 Bag of Frozen Corn
  • 1 Can/Tub (8oz) of Crab Claw Meat
  • 1/2c Chopped Sweet (Bell, Mini-Bell) Pepper
  • 2 slices Bacon, cooked and coarsely chopped
  • Pepper to taste
  • Parsley to taste
Add alfredo and broth to soup pot, whisk together until combined.  Add rest of ingredients except spices, stir into soup until warmed through.  Add parsley and pepper to taste, serve immediately with toast triangles or biscuits.  Soup can be stretched by adding more broth, alfredo, and vegetables, to taste.

Wednesday, January 20, 2016

Look Who's Talking Now

Bubbles for everyone!
Tiny has a 30% speech delay, so he has a language that is pretty much all his own - we affectionately refer to it as Hamlish. It's a mixture of English, Toddlerese, grunting, gesturing, and repeating syllables. It also often contains a word or two that is a place-holder for what he really means, e.g. down means both up and down. His brain has trouble juggling some opposites, it seems; this isn't unusual for TSC kids, so it's something we've got a therapist for and are working on.

On top of it, Squeaky is only 16mos younger than Tiny, so my Irish twins also speak some amount of cryptophasia at home (also know as "twin speak"). As Squeaky becomes progressively verbal, he's catching up to Tiny's point of delay, making them even more similar to actual twins.

This morning, I was mixing both boys medicinal cocktails (Tiny's seizure meds into milk with ovaltine, and Squeaky's bronchitis antibiotic into a chocolate-vanilla pediasure mixture) in sippy cups, when I heard this exchange:

Tiny: EHYEE. No no, no dana dana danana, no no. (Squeaky, no touching! Danger!)
Squeaky: <incoherent yelling> (Don't tell me what to do!)
Tiny: Mamama no no no danana Ehyee no no DOWN EHYEE DOWN. (Mom said no, Squeaky! Put it down!)

(Now, keep in mind I can't actually SEE through the wall between us, but I can tell they're arguing over either the wall charger wire or the tv cord.)

Squeaky: WANNAWANNAWANNA Waaaaaah! *crash* (But I want to! *gets pushed over by Tiny*)

At this point I intervene, brush Squeaky off and repeat what Tiny was telling him, "No no, we don't touch cords, Squeaky. Danger!"

Tiny puts his hands on his hoops and nods smugly, agreeing, "Danana! NO NO EHYEE. Up! No up no <incoherent garble, grunting and pointing>."

Squeaky frowns at him and gets to his feet, going chest to chest with his big bro ... Which is kind of funny, because it's something like watching a squirrel belly up to a penguin. Squeaky tips his chin up and explodes with a giant burp, followed by a VERY pointed garble that I can only translate into something along the possible lines of, "Don't be a jerk - you're not the boss of me!" And then he turns and stomps off.

Tiny looks contrite a moment, then runs over to give me a big hug like I'm still your favorite, right, Mama?

Monday, January 18, 2016

Living at the Doc's Office

Dr. Tiny prescribes more crayons in your diet.
Living here on the Preserve, we usually have really awesome mild weather.  Our Spring starts out muddy and wet sometime around the end of March, and lasts until about Memorial Day.  June kicks off with a sunny stretch that gets gradually warmer and warmer until summer starts mid-July.  Summer ends right around the end of September and Fall stretches through Christmas. 

And all those seasons are awesome, except perhaps a short, two to three week stretch of hot, hot days in the end of August, where I melt.

Did you notice I didn't mention Winter?  That's because Winter SUCKS.  Here in the PNW, we don't get a gorgeous winter wonderland that others get, or milder sunny days that the warm regions see.  NO.  We get slush, ice, and flooding. 
And from the time school starts until the end of March, it's cold season.  If you can count, that's a whopping SEVEN months.  With two toddlers and an 11yo who may herself not get sick, but brings home EVERY bug (including lice last year) and infects the younger two.

We spend a lot of time (and money) on doctor visits - and I'm not even referring to all the specialist visits we have now for Tiny's TSC, but normal, cough and cold and injury doctor's visits. 

So riddle me this, Batman...when you spend a zillion hours in a toyless doctor's office, going back sometimes twice for the same child and cold after it mutates and hits them again, how do you keep them entertained while waiting for the perpetually-late doctor to appear in the doorway and agree with the Mom-dx of an ear/sinus/chest infection?

Well, let's just say sometimes we get creative.  We steal the pens from the front and let the babies draw on the sanitary paper on the exam bench, grab the (non-watermarked) referral pad and write "prescriptions", build paper cup towers, make a water table out of popsicle sticks, the sink, some cups, and paper tape, or just plain take rides around on the doctor's stool.

Today, Squeaky has bronchitis, and we left the Office with an rx written on a prescription paper that was also colored with purple, green, and red crayon.

Thanks, Tiny.  Nice work!

Thursday, January 14, 2016

Tweenaged Dramasomnia

DQ thinks eleven is hard.  Sixth grade is hard.  Practice is hard.  Sleep is hard.  Everything is hard.

She whips herself up into such a fervor that she stands in the doorway and SOBS instead of laying down, closing her eyes, and at least attempting to relax.  And at 11pm with two toddlers whose eyes will unavoidably snap open at first light, sleep is more precious in my life than chocolate.  And let me tell you, I LOVE chocolate.  And ice cream.

"How do you want us to help you?"  We ask.

"I DON'T KNOW!" She sobs.

"You can't fall asleep standing up," we say.

"I KNOW!"  But she refuses to move out of the doorway.

"Go read a book, play with something quietly, write in your journal until you feel like sleeping."


"So what is it that you want us to do?  Conk you upside the head with a frying pan?" I ask, completely annoyed that she refuses to try and help herself.


"Then what?" I prompt.

She glares at me like she's trying to melt my face off.  Her dad tries really hard to keep from rolling his eyes, sighing as her hollering has now woken Squeaky a second time.

She stomps off to her room and slams the door.  Tiny, who shares a wall with that doorframe, starts shrieking in terror, flying out of his room and desperately racing down the hall to find me.  I scoop him up, my eyes rolling so far into my head I can see my frontal lobe.  DQ whips the door open again, glares at the two of us, and does the angry, ugly crying that often accompanies her tweenaged meltdowns.  It's an act at this point, an attempt to manipulate me into there-there tutting and soothing.  Her cries are definitely put on, lacking the passion of frustration.

After repeating the order to get.in.bed. FIVE times, then to take deep breaths until her breath stops shaking THREE times, and telling her that I realize she's anxious about her choir concert tomorrow, but that this isn't helping anyone sleep, her especially...She finally calms down enough.

I wish her goodnight, close the door, and put Tiny back to bed.  Midnight.  What is it about this age that is SO HARD that they can't even see the unreasonableness of their own actions?

Wednesday, January 13, 2016

To Washington

The fear of losing him is inescapable.

They tell you things like, "Everything happens for a reason", and "God only burdens the strong", and "You're a good mom; he doesn't even look sick."  As though I could stop it if I wanted to.

They don't know how it feels in the middle of the night when Tiny starts nodding and shrugging.  When all I can do is hold my baby and cry and whisper, "I'm sorry, Baby, I'm so sorry..." and count the seconds until it's over.  To hold him and stare at the ceiling for the next hour after he's nodded off again, watching the clock as the hand winds itself past the three, past the six, past the nine, and finally, past the twelve, because if he has three seizures in an hour, I have to give him a medication that could cause his breathing to stop... and then call 911 so the EMTs will come.  They -- with their empty platitudes and cliches -- don't understand the meaning of the word "insomnia".

They most certainly don't know what Tuberous Sclerosis is.  I'm a medical student, and I'd never heard of it.  "TSC is a rare genetic disorder categorized by mostly benign masses formed on the soft tissues, primarily the brain, lungs, heart, kidneys and eyes," the doctor told me, empathy radiating outward from his voice like a slow, heavy fog.  Two weeks after the seizures started, a month after his second birthday, that was our diagnosis.  It pained the doctor to give it to me; I could see the hurt behind the glint of his lenses.  I lost the feeling in my fingertips and toes momentarily, the rest of my body buzzing as my mind raced through my family medical history.  "Two thirds of all cases are mutations," he supplemented, seeing where I was going through the mental files.

Well, wasn't that ironic?  I can't win the lottery to save my life, but my kid hits the jackpot before he's even born.  Angry?  Yes.  Scared?  Yes.  So I did the only thing I could do in that situation:  I hugged my son tightly and asked, "What can I do?"  To save him.  To help him.  To keep from crying.  To keep that light from dying out of his eyes.  Medicate.  Suppress.  Test.  Watch.  Be vigilant.  Hope.  He won't be allowed to sleep alone because the seizures come at night.  He may require special education, therapy.  He may not be able to keep up with his little brother in school.  He may not have friends, because he may be different.

I replay that memory over and over.  I tell myself every night as I lay down on my floorbound twin mattress that tonight, there won't be any seizures.  Tonight, the medicine that makes him so grumpy and tired will work.  Tonight, I will hold him, and he will snuggle against me, because we both want the comfort instead of need it.  And tomorrow will be a better day: a seizure-free day.

Everything happens for a reason, they say.  I want to know the reason.  Why?  Why us?  Why him? Why me?
God only burdens the strong, they say.  I'm strong because I have to be.  No one loves my son like I do.
You're a great mom; he doesn't even look sick, they say.  Well, he is, and the powers that be must be cold and calculating to let this happen to someone so amazingly beautiful and innocent and full of promise.

Tonight, as he sleeps next to me, I'll cry, so that I don't cry tomorrow.