sad and mad and hurting and confused and disappointed

The past week has been an emotional one for me.  I don't really love to talk about my emotions, and sometimes I like to just pretend I'm a robot without any wild emotional response to current events... but not this week. I am sad and mad and hurting and confused and disappointed... My thoughts are usually more organized than this, so I apologize for being all over the place. 

I am sad.  I am sad that someone was hurting so much that he decided to go into a school, a safe place for CHILDREN and shoot and kill 17 people who'd done nothing to deserve that.  I don't care what the background of that individual was, I am sad that ANY person would get to that point in their life and decide to commit such a heinous crime.  I am sad for everyone who got out of that situation alive whose lives will never be the same, whose school experience will be forever changed, and who will have to try and go back to "normal" after what I expect is a life-changing event.  I am sad for those precious lives that were lost, and promise that they had that was unfulfilled.  Schools are supposed to be safe, and theirs wasn't. I am sad for the families whose loved ones didn't come home.  I can't help but think of my own little people, and what I would do if something happened to one of them.  I get teary now thinking about it, with a sick feeling in my stomach.  

I'm mad.  I'm mad that there have been so many school shootings in this country, and that so little has been done.  And I am mad about how so many conversations about that go.  I like to believe that everyone can agree that there is a gun violence problem in this country.  And while I realize that the guns aren't violent on their own--they are certainly used violently far too often.  I read something on facebook that said something to the effect of "If my kid hits someone one with a stick, I don't blame the stick--but I still take it away from my kid." THIS.  

When they realized that too many people were being injured in car accidents, they installed seatbelts.  They didn't blame the cars or make people stop driving them or take them away--but they made change.  

When it was clear that pseudoephedrine/ephedrine products were being used in the manufacture of methamphetamine drugs, they regulated them and now you have to give them your ID to purchase the "good" cold medicine.  You could even argue that most cold medicine users are responsible and are using the drugs for a cold... and they still regulate them.  

People make the same argument for guns, and it makes me mad every single time.  I believe that most gun owners are responsible citizens, same as I believe most people who buy cold medicine are. But when there was a problem with cold medicine being used for things it wasn't meant for--something changed.  When guns are being used for something that they weren't intended to be used for--can't there be some discussion about how we can make changes to that part of this culture and tighten some things up?  

It hurts that in my job as a MUSIC teacher, I have to think about what to do in case someone comes into my school building with a desire to hurt me and/or my students. When I became a music teacher, it was because I wanted to help to create more beauty and joy in the world and share some love and light to my students' lives.  I still believe that music is super important and that I am adding beauty to the world... but it is disheartening to know that as a teacher I may be at some point expected to protect my kids---and they are all my kids while they are in my classroom---from someone who may want to harm them in some way.  When I was in school (and I realize that it's been a few years since then...), this wasn't something that was ever a reality or something that we really needed to think about.  I know times have changed...  and it hurts to think about how much.

I am confused.  I am confused by those elected officials who have the power to make change, who say that change needs to happen, and then who do nothing.  I am confused by those who send thoughts and prayers and then do nothing further.  I am confused by the fact that there have been so many school shootings and so little change to come from them.  

I am disappointed that there are so few productive discussions to come from this. When I suggest that there be some common sense restrictions on guns, I am often met with horror and immediate dismissal.  I don't want to take everyone's guns, I don't think all guns are bad, I don't think all gun owners are bad.  I am disappointed that it feels like guns are more important than children.  Let me just say that again.  I am disappointed that in this country, it seems like unfettered access to firearms is more important than children's safety.  And probably that's a bold not entirely true statement to make... but right now, it feels that way.  

And so this is what I want.  I want people to have real discussions.  Uncomfortable ones.  How do we fix this?  How do we BEGIN to fix this?  I think there need to be some limits in place.  I think that things in schools need to change.  I want to understand where people who don't feel as I do are coming from.  I want to not have to worry about being safe in my workplace.  I want my kids to feel safe at school. I don't want anyone to ever feel like going into a school and shooting children is a solution to any kind of problem. I want my job to be more about creating beauty and less about emergency flip charts.  

How can we be the change?  Seriously?  Can we discuss?  

Type A-Ish

Sometimes at summer camp, people will do "trust falls" as a bonding experience.  You know the ones.  Someone stands up, crosses their arms over their chest, and falls backwards with the understanding that their team will catch them and not let them fall.  Tonight, as I am pondering as I often do late at night, it seems to me like the entire business of of having a kid with Type 1 Diabetes is a giant years-long trust fall.  We for sure won't let him fall all the way down... but there may be bobbles here and there and it sure won't look perfect.  He has blindly put his faith in us--his team--and we have little option but to be there for him.  I mean...  if I'm not, well, you know.  And so I am, and I do what I need to do, and I put my metaphorical arms out to catch him multiple times a day, and will continue doing so for many more days and nights, weeks, months, years.

Being a parent of any kid is much like an extended trust fall... one that starts and then just never stops. Probably ever.  I'm learning that being the parent of a kid with an illness--no matter how well that kid is handling things (he's a freaking rock star...)--is like a two-fold exercise in trust.  "Do I trust myself to make sure that his needs are being met?" and then "Are his needs being met?".  It's one thing to know that you're making silly choices as a parent...  Because we all do those things.  Ice cream for breakfast once in a blue moon?  Can't hurt.  Sleep in until 11?  Why not.  One minute you're flying by the seat of your pants, and then the next minute the world stops and changes direction, and all of the sudden what's up is down, and the chaos that existed before is thrust into an awkward order that doesn't feel right.

I've always been a self-identifying "Type B" personality.  Ask my parents... Ask my husband...Ask my friends from school... Ask my siblings...  Ask pretty much anyone who's ever spent a great deal of time with me. I just feel more at ease with my life if it's "chill" or "zen" or some hybrid of those two things. But diabetes?  Diabetes doesn't really do "Type B".  Diabetes will come into your "chill" and "Zen" home and go all "Type A" right on your ass.  Gone are the days of "anything goes", and in come the days of regimented and plotted out.  My formerly carefree (haha, not really... but it's a nice image to have) days have been replaced with a giant color coded spreadsheet courtesy of my much more "Type A" husband, a routine that's not one I chose, and parameters for things that were imposed on our family rather than chosen. 

This newfound order is chaos to me.  I'm not used to the language of strict routines or having many set rules to follow as a parent.  No more.  New in my vocabulary are things like "Don't forget to poke a different finger...", "pick a different site tonight...", "Did we change the lancet....?'. "How many carbs were your snack?", and "yes, I know you don't want a shot before dinner... but you want dinner...  so you have to have a shot.".  None of these things that former "Type B" me would have said.  Or thought.  Or wanted to think or say.  But this new "Type A-ish" me has to.  And so l do. 

A couple of mom friends with other special kiddos were having rough days today, and I saw as much on Facebook. And I so wish I could hug them both and say to them that former me sure wouldn't have understood, but now I do.  That they are good enough, that their little people are in their lives purposefully...  That they aren't alone...  That I know how much they wish they could be the more "Type B" people they once were.  That Type A-ish is OK.  That they are doing such tough and important work.  That it will be OK.  That someday, they/we will miss these hard days and need to be needed again. 

And so I will continue doing the hard work that I do... Checking the homework and sorting out friend issues for the Queen Bee.  Preparing pasta made from beans (that looks like worms) and agreeing that Diabetes "Sucks and is stupid" with Son Number One.  Remembering that The Feisty One is only three and still needs his mama hugs and loves, and that feelings are hard for little guys to process, and that talking Transformers to him is as important as talking weather or politics with grown-ups.  Changing poopy diapers, picking up every tiny thing that he tries to grab on the floor before it reaches his mouth, and soaking up all of the toothy little smiles that come from the Baby Sloth...  Remembering that it's OK to just tread water sometimes to keep from sinking.

And trying to be about as "Type B" as I can with all of the new "Type A" requirements in my life.  And that Type "A-ish" may be the best I can do some days.

Living the Dream

The other day, I was meandering idly through the internet, and stumbled across this gem of a video.  Take a minute and watch it.  Being from the midwest (we're neighbors to Minnesota, so that basically counts, right?), a handful of these things are things that I regularly hear, and a couple are things that I regularly say.  Notably, "It could be worse."

People often ask how I'm doing.  (Lately, it's been REALLY OFTEN... probably because I look kind of frazzled at all times, and like I haven't slept in weeks... both of which are accurate...).  I know that mostly it's the polite thing to do, and that often they really don't want to really hear about how I'm doing, so I will pass it off with a simple "Oh, Could be lots worse..." or "You know me, living the dream as always." And most days, I kind of mean that.  I know I could have it lots worse than I do

When we were inpatient at the hospital last month, we saw firsthand how long some of those kiddos had been there, and we know we could have it so much worse, and we're grateful that Son Number One required a relatively quick stay.  A mere hundred years ago, a diagnosis of Type 1 diabetes was a death sentence.  Insulin was first successfully used in human patients in 1922. When I think of how much of a bummer it is as a mom to have your kiddo diagnosed with T1D, I try to think back to those mamas who had to watch their babies waste away to nothing and die within a few months of diagnosis only a hundred years ago.   So when I say "it could be lots worse" when someone asks about him, I truly and sincerely mean it.

When I wake up in the morning after a short night of sleep that's been interrupted by a hungry and growing baby who needs snuggles and a bottle, or a three year old with bad dreams and cold toes, or a 6 or 8 year old kiddo who just needs some extra mommy time, I try to have the perspective that they won't be little for long. I've somehow made it past the baby stage with three kids already, and I'm trying to savor the fleeting moments of baby snuggles I get these days.  And I know that my big kids won't always think I'm as cool as I am today, but for now, it's kind of great. And my house always has the "it looks like there's been a struggle" look, and dishes are always piled up, and laundry is always piled up... and trash needs emptied, and the cats need to be fed... and I always wish I had a few more hours in the day.  But I love them all, and I love my life--despite the relative chaos I live in--and when I say I'm "Living the dream", usually I mean it.  (except maybe when Baby Sloth decides to poo in his pants EVERY. SINGLE. DAY. as I am trying to leave for work...  Maybe not so much then.)

"I am happy because I'm grateful. 

I choose to be grateful. 

That gratitude allows me to be happy."

--Will Arnett

These days, I just don't have the extra energy to be unhappy.  It's simply easier for me to choose to be happy, and so I am.  So if you ask me how I am, and I tell you "It could be worse", it's because I'm grateful that it isn't.  And when I say I'm "living the dream", it may not be your dream, and it may not even be my own at the moment... but if I stop to think about it, it probably is, and I really am. 

What's Going on Your Paper?

I am often guilty of doing that thing parents do when their kid hands them a stack of papers that they've completed that day.  I glance at them, give a "great job!" or two, and then toss them.  I never claimed to be mom of the year (other than sarcastically)... but the amount of paper an early elementary student goes through is really something.

I had papers from all three of my "big" school kids the other day.  It's an unusual treat that they all remember to show me.  Usually, it's a week later and something will finally make its way to me only to realize that it should have been turned back in already.  I'm sure this surprises nobody...  I maintain a she's-got-it-together vibe for the most part, but I'm pretty sure you could ask any of my children's teachers and they will nod and smile and not acknowledge the flaky parent that I am every now and then...  (and nobody wonders where the Queen Bee gets it from...)

The Feisty one brought me some artwork from one of his preschool centers.  He told me with great excitement how the stampers worked and how he had made this particular picture with me. Lots of blue, lots of stamping in a sort of blobby oval shape.  He was proud of it, and I was proud of him. 

The Queen Bee had some artwork to show me as well.  This particular day, it was as it often is... cartoon woodland animals in various habitats.  It was burrowing squirrels this day as I recall.  If it's small and furry and "adorable", it's her style. And so we talked about her charming renditions of the squirrels and their burrows and the backstory that accompanied them (because what piece of art is really anything without a backstory...) and it was good.  And I was as I always am.  Proud of her and her gift of creative expression.

And Son Number One had work to show me also.  A few math worksheets that were finished, which are some of his favorites, something that he had "drawn a volcano" over (which to my untrained eye looked like a lot of black scribble), and a couple books that he'd made.  The first one was a book about vehicles (vehicols).  He'd taken great care to draw a variety of different vehicles, one per page, and for a 6 year old, it was good stuff.  And there was his family members book, with one family member to a page.  "Sloth is cute. Queen Bee likes fuzzy animals.  Dad likes to snuggle. Mom is warm. Grandpa gives me rides in the semi. The feisty one goes to preschool.  A is my cousin. I have diabetes." His cheerful figures were charming, with the Sloth in a sweet stroller and Dad with some impressively prominent facial hair.  I was proud of his work, and as always, of him.  But his self description struck a nerve.

"I have diabetes."

I totally get that we are still in the first mile of what will be a marathon journey with all that being a Type 1 family entails.  We get that.  We are all adjusting.  But it breaks my mama heart a little bit to know that instead of saying something like "I run fast", or "I am a good friend", his fact about himself is the diabetes one. One of my (many) fears for him is that people will look at him and see his diagnosis instead of seeing him for who he is as a person.  And I know deep down that I shouldn't worry about that, not only because we surround ourselves with people who are awesome and wouldn't be that way, but also because he is way more awesome than that... but moms worry. And for my little first grade guy to list that as his identifying fact... well... it just sucks.

Being a parent is that thing in life that's a hundred times harder than you imagined and a hundred times better.  The good times are the easy ones.  The birthdays and holidays and vacations and moments of pride and gratitude.  The wet kisses and hugs around your legs and snuggles at night and "I love you"s that don't quit just because the lights go out.  Those are the good times.  The movies with popcorn and the kid who wants cold hot dogs, and the kid who loves cheesecake and the kid who loves his brother more than anything and the kid who will talk transformers for hours and hours and hours and....  Those are the good times.

The times when you can't fix things, though?  Those are the times that make mamas lose sleep.  The nights spent awake with sick babies, the nights that you want to sleep more than anything but the baby wants his mama more than anything...  The low self esteem days when friends are being unkind... the overtired days when one wrong look and they all dissolve into tears... the days when my patience level is at zero, but my babies demand more...  the weeks when the hours of sleep can be counted on the fingers of one hand...  when your six year old sees himself as a kid with diabetes instead of a kid who has so much more to offer.

What do I take away from all of this lengthy musing?  Think of what you'd want to be on your paper as a metaphor for your life.  Like my feisty one, make sure it's colorful.  Like my Queen Bee--Make sure that it's something you love, whether that's fuzzy animals or something else equally awesome. Like my Son Number One?  Choose wisely the one thing what you want people to recognize about you, and don't allow something to define you that doesn't.

Getting There

Most 6 year old boys like to watch cartoons and run and play Nerf guns and eat junk food and do silly 6year old things like telling knock-knock jokes and making random fart noises. My six year old does many of those things... but he also has the soul of someone much older and wiser. He is only a few weeks into his lifelong diagnosis on Type 1 diabetes, and for a 6 year old (and his overwhelmed mama) that's a pretty big deal, and yet, he amazes me every day with how well he has done with that reality. He has embraced it. It is part of the fabric that makes up Son Number One now. And it's beautiful, if a diabetes diagnosis can be beautiful.

Let me back way up. I remember going to my ultrasound when I was pregnant with him--before I knew he was a "him". I remember laying on the table with my belly exposed knowing that I would have another perfect little girl to be a sister for The Queen Bee. They'd wear matching dresses and be best friends and our home would be overflowing with pink and sparkles. And then the little sister I imagined turned out to be the little brother I never even really considered. I was pretty sure I didn't know what to do with little boys--mine or otherwise. And so I tried throughout the rest of my pregnancy to connect with this boy I wasn't sure what to do with. And I remember right after he was born, I held him and told him I was sorry, and cried, and told him that I would figure out how to be a boy Mom. I have told him that story a bunch, how I knew he'd be a girl (and how I knew his brothers would be girls...) and how I wasn't sure I wanted a boy... and how he changed my mind.

This is the boy who would never take a bottle from anyone. He would go all day to the sitter while I was at work and not eat til I came home. This is the baby who was afraid of grass, who had the most beautiful hair for a little boy, who adores trains, and who genuinely loves every single person in his life. He puts me to shame. He cares on a level that I'm not sure I do all of the time. I have thought countless times since our first conversation that I didn't deserve this kid. He is completely pure of heart. I try to be and fail pretty regularly.

I pulled him aside tonight to give him his evening shot of Lantus (which he prefers to call his nighttime insulin), and injected into his tummy. You could see that it stung more than usual. And you know what this kid said? "Sorry you have to do that. I know you are just trying to keep me healthy, Mom."

He apologized to ME. My 6 year old who has to get poked 8-10 times a day apologized to me. And he genuinely meant every word.

I have been presented with information on a research study for a drug that may prolong the beta cells in a newly diagnosed type 1 diabetic. Son Number One meets all preliminary requirements, and so Superdad and I think it'd be a good opportunity for him potentially. But since he is aware of everything, I want him to have input, too. So I pretty directly explained to him what it entails... notably it would require IV infusions periodically, and I wanted him to be aware of that. And so I carefully and in great detail explained everything I could, including that it may not help at all. And without missing a beat, he said this. "Mom, I want to do it. Even if it doesn't help me, it may help other kids if they get Type 1. Maybe then nobody would have to get it." My 6 year old will voluntarily sign up to get more IV's and do extra stuff not because it may help him personally, but because it may help others. And then he apologized for making me cry. And thanked me for helping keep him healthy. And made my cry some more.

I have made many screw-ups in my life. I am disorganized, I like to gossip every now and again, I don't exercise like I should, I am jealous of things that others have that I would like... but I am a good mom. I may be an epic failure at many things--and I am--but I am a good mom. I totally don't deserve any of my amazing children, but I adore them, and I love them, and I pour every bit of myself into ensuring that they know they are loved as they are for who they are. Tonight, For a couple minutes, it felt like maybe I was doing the Mom thing right--even if I thought I didn't know how to raise boys.

I'm getting there.