The Procedure

Sometimes you have an experience that is too surreal for words.  And then you try to apply words.  And don't fully do justice to the experience, but you feel like the experience needs to be documented.  This is one of those stories...   One that I won't soon forget.

I’ve had issues with dry eyes for years.  Maybe even decades by now… I’m old enough to measure my life in decades these days.  Anyway, my eyes are always dry. I can’t think of the last time I’ve cried a real tear.  Not my wedding, not the birth of any of my children, not a sad movie… I just don’t. Because my eyes just don’t. And so after being even more miserable than usual for several months with my dysfunctional non-tear-producing slacker eyes, I decided to go seek professional help.  Since I’ve had this issue off and on for years, with little relief from the standard treatments, my ophthalmologist recommended something that she referred to as a “gentle type of heat treatment” (trade name withheld intentionally) that I could try out as a new option. And being a fan of both my ophthalmologist and new treatment options, I decided it seemed worthwhile, and the appointment was made.

I arrived on time, and cheerfully greeted the somewhat less cheerful receptionist.  I checked in, waited only a few short minutes (which in this clinic is nothing short of miraculous), and then I met Marcia.  Oh, Marcia…

We walked into the treatment room, and the fun began.  “Have they explained what exactly we’re doing today?” I have a pretty well-known habit of playing Dr. Google on the interwebs, and so I gave a confident “Yep! Sure have!”.  Her chuckle should have given her away, but didn’t. “Well, our treatment is in four parts…” she continued. Given my full confidence in my google-ing the previous night, I didn’t pay it much attention.  She handed me a couple of brochures, sat me down in the chair, and tipped me back. Within a couple short minutes, I was ready for what I expected to be something akin to a spa treatment for my eyelids. “If any of this is too painful or you need me to stop, just let me know, and I will stop…” she said.  It was then that I realized that maybe there was a red flag off in the distance. Like… Did I really need a safe word for my eye spa experience? Really? REALLY MARCIA!?

Phase One.

“This part is what one gentleman jokingly referred to as “The Dremel”...” she said with a light chuckle in her voice.  [Uneasy laughter from me] “It’s kind of like going to the dentist.” [Internal panic level rising quickly] “See, look. (she showed me what looked like a polishing tool at the dentist but with a little flat disk on the end instead of the rubber one that holds the tooth polish.)  It’s kind of like the tooth polisher at the dentist. This little silicone disk with these cute little nubbins on it will clean your lid margins.” I realize the term “nubbins” was supposed to make it seem less like a medieval torture device, but to no avail. “And if you need me to stop, I can.” Oh no, Marcia… I’m good.  I pride myself on my relatively high pain threshold. I’ve given birth after all, I can handle pain.

And then it began.  

If you could imagine the sensation of purposefully turning your eyelids inside out and then walking into a sandstorm in the Sahara?  Maybe. Broken glass crumbs blown by gale-force winds directly into your eyes? Could be. A Dremel rotary tool? That gentleman hit the nail right on the head.  I’m not sure the type of pain was even remotely similar… If it was possible for eyes to curl into the fetal position, they would have. They’d be rocking in a corner somewhere. A normal person would have been in tears I have no doubt… But since my eyes are effectively the Atacama desert as far as ocular moisture is concerned (thanks David Attenborough for the knowledge to toss that name around), there was only a wish I could cry.  A wish and no tears. If I was a smoker, I’d have needed a cigarette after that. But I’m not. And so I didn’t… But if I were…

It’d be a hard call on whether or not being in labor was worse than this. No exaggeration. I’d have to give it some serious thought.  Imagine someone filing out the rough spots on the inside of your eyelids with a small power tool. Sounds unpleasant? Sounds like something you’d steer clear of?  Well, dear reader, that’s exactly what it was. And then imagine that the person is trying to make cheerful small talk about her (presumably lovely) grandchildren.  Because she was.

Phase one complete.

Phase two.

 

My new friend Marcia then gladly informed me that we were moving to the next phase of treatment.  I asked if she meant “the part where you melt my eyelids?” and she chuckled and said that they preferred to call it a “heat treatment” or “eye spa treatment”.  Whatever the title, it sounded less traumatic than the violation I’d just survived. And for 10 minutes, she held the little heated device over my eyelid to encourage the tear-production fairies to get their crap together and start functioning (my words, not hers).  “Are you asleep yet?” she asked, assuming i was in a deep state of relaxation. “No ma’am, pretty sure all hopes of relaxation left when you used the previous torture device.” She chuckles again. “I keep thinking I should get some relaxing music in here to help people relax more.” I don’t have the heart to tell her that she’d have to follow that with a full bottle of wine in order to make that even a remote possibility.  This part of the treatment wasn’t awful. I remember naively thinking to myself, “I can get through this.”

Phase two complete.

Phase three.

“This next thing, which was designed by one of our very own staff is affectionately called the shoehorn.” THE WHAT?!?  She shows me what does indeed look like a small metal shoehorn. What in God’s creation does my eye need a shoehorn for?! “I’m just going to slide this in between your eyeball and your eyelid so I can apply some pressure to eyelid and not injure your eyeball…” Great, Marcia.  You just go ahead and GENTLY SLIDE THAT PIECE OF SHOEHORN INTO MY EYE AND I WILL JUST BE SITTING HERE FULLY FRIGGIN’ RELAXED.  “Here, I’m just going to give you one of these eye drops to numb up your eye.”  Small favors. She puts drops in, and goes right to shoehorn-ing my eye. And pressing on it so that it feels like she’s trying to more or less scoop out my eyelids.  I’d be lying if I said it was a great feeling. But she’s cheerfully chatting on, and so I assume that I’m not mortally wounded yet. “Did that hurt?” “Yeah. That really hurt.”  “So do you mind if I do it one more time??” Did Marcia really forget the &%@#$ safe word?!? “Oh, look at what I got out of THAT one….” she says as she gleefully shows me the freshly removed shoehorn… Generally that kind of thing doesn’t bother me, but after feeling like my eye has been violated for the past 20 minutes, I can’t even really feign enthusiasm.

Phase three complete.

Phase four.

“Ok, my dear.  Time for the last part.  I’m going to put some coconut oil on a cotton swab.  Just the generic brand of coconut oil, no need for name brand.  Put it on the edge of your eyelid just so, put a tissue over your eyes, and then this heated mask will stay on for 10 minutes. You should order one of these for yourself… You can charge it by USB.  Pay attention to laundering instructions, though, if you have to wash it too much, you’ll lose the lovely lavender scent…” Lavender is not my scent. But the ten minutes of relatively undisturbed eyes under the mask wasn’t terrible.  Not compared to the dremel. Or the shoehorn.

Then there was some more small talk and the discussion of when she’d see me again and then I escaped that fresh hell.  I can’t say I didn’t learn some lessons, though. Ask for more detail. Be skeptical of everyone named Marcia (Sorry, people named Marcia.) Pick out a safe word for every procedure well in advance.  

Make sure there’s a coffee place on your way home so you can drown your sorrows.

What a difference a year makes.

Tomorrow marks an anniversary that we never knew we'd look forward to.  Not because it marks something that's super worth celebrating, but that we've survived.  Collin has survived, the other kids have survived, and we've survived while getting everyone from point A to point B for a year.

A year ago tonight, I went to bed a normal frazzled mom of four healthy and normal and wonderful kids.  I woke up the next morning to a three year with with an earache and a six year old who'd peed the bed again, a day's worth of sub plans to scramble to get together, and if you know me, you already know what happened.

What a difference a year makes.  It would have been very easy for us to wallow and feel sorry for the hand that Son Number One was dealt, but as we've told him hundreds of times, we love him just as he is, and Type 1 Diabetes is a part of him now. Some days it would be easy to grouch, gripe, or wallow, and then I remember how much easier it would be if I were a 7 year old kid.  And so we will plaster on our smiles and press onward, and do our best.  Some days it's good, some days it could be better, and every day is a new day.

From the very first day of his diagnosis, I've been blessed countless times by the kindness of others.  From our awesome pediatrician who doubted my mom-diagnosis, and then stayed extra with us to tell us about her Type 1 son once our diagnosis was all but sure.  Every staff member we interacted with at the University during the hospital stay, especially our amazing nurse Laurie whose laugh was a bright spot in some tough days.  The friends who took great care to prepare some diabetic friendly meals in the days after we came home from the hospital.  The nurses and researchers who have helped care for him when we're at the hospital for clinical trial visits, and who take great care to make sure he picks something really cool from the prize closet.  The staff--teachers, associates, bus drivers, secretaries, and our school nurse--at school who constantly are going above and beyond for him. The local Lion's Club who came to me within a couple of days of being home from the hospital to tell me that they'd love to send him to a summer camp for kids with diabetes.  The staff members at Camp Hertko Hollow--every single one of them.  To the parents of other Type 1 kids who have been a source of information as well as support. To our family and our friends who have been learning so much right along with us... People I didn't know would find their way into our lives, but to whom we are eternally grateful.

I've administered more shots to my child than any parent should have to, become a pro at counting carbs for meals and predicting the subsequent changes in blood sugar.  Our home has sharps containers sitting around, and you'll probably find more than one diabetic test strip laying around (because 7 year olds...).  We've learned the difference between sugar free and no sugar added... We know we can carry OUR bag into Kinnick stadium when others can't (this was kind of a big deal!)...  We've come to rely on technology to alert us of high or low blood sugars, and a plethora of other details that we never expected to be important.  But that's not the big stuff.

We've learned that we can count on our seven year old to know what to do and how to respond in a situation that may be scary to others.  He knows when he needs to eat carbs, when to test ketones, when to calibrate his glucose sensor, how to administer his own insulin, and how to tell others about diabetes.  We've learned that the emotional roller coaster he is sometimes on must seem bigger and scarier to him than it does to us, and so we have to model calm as much as we can.  We know that he is still destined for greatness, even if the path he's on to get there may have gone a slightly different direction.  We've learned that he probably won't be an astronaut or a fighter pilot--and we are ALL good with that.

Everyone would do well to take a page from Son Number One's book.  Be grateful always, even when you're 7 and have more shots every day than most people have in a year.  Be kind.  There's literally no reason not to be.  Look on the bright side.  Could things be better?  Always.  But they could always be worse, too.  Take every opportunity you can to educate yourself and be your best advocate. Doesn't matter if you're 6 ot 60--knowledge is power, and the sooner that you realize that, the better off you'll be.  Ask him, he is really active in his care.  (He has an appointment next week and "can't wait" to see what his A1C is...  Because of course he can't.

Anyway.  It's been a year.  It's been a long year, and a year that I didn't hope to have, but that I'm grateful to have survived along with one of the best kids a mama could ever hope for.

Camp Hertko Hollow, C’s First Year

It’s been amost 6 Months since Son Number One’s Type 1 diagnosis. He was diagnosed on a Monday, discharged from the hospital on a Wednesday or maybe Thursday, and by the Sunday after he was diagnosed, I had already been approached by a community member I’ve known since my own childhood about camp. I was on my way out to run an errand, and Ruth was walking by and stopped me to ask about how Son Number One was doing, as she had heard of his diagnosis. I told her we were doing as well as we could be. And in the next breath, she said “Well, The Lions Club will help send him to camp in the summer.” And that was that. We got materials for camp and got him signed up VERY early, and life happened for a few months... and then last week, he went to camp.

And it was the best experience for him.

Camp Hertko Hollow is held at the Des Moines Y Camp outside of Boone, Iowa. It’s a drive out into the country, down some nondescript Iowa gravel roads. Being our first year as a Diabetes camp family, we didn’t know what to expect after driving 3 hours to drop off our 7 year old for a few days with strangers. As soon as we turned into the parking lot, his eyes got big, and he was more excited than nervous. He saw that there were cabins with two levels, and he wanted to be in one of those. After a thorough check-in process that included meeting with medical staff, talking about insulin dosages, and the obligatory camp head-lice check (which he passed—thank goodness! Ha!), we set off to unpack his stuff and get him settled. Much to his delight, he was in the top floor of the very cabin he hoped for—Deer Valley. (It was the one we hoped for, too, since it’s the one we parked right in front of....!) We met one of his counselors and he picked his (obviously top) bunk out. There were already a couple of other campers there, so he was at ease right away. And then his other counselor offered him a snack of Cheetos (only 14 grams of carbs, mom!!), and he grinned and that was that.... he was hooked, so we gave our hugs and were on our way home.



I picked him up on Wednesday morning and the highlight reel is as follows...

1. Food was good! I loved it all!
2. They came around and checked blood sugar every night, which was weird, but fine.
3. The rock climbing wall was awesome.
4. My counselors were awesome, one has Type 1 like me and was diagnosed when he was 2!
5. We had S’Mores!
6. Even my nighttime insulin was in a cool pen here.
7. Swimming was fun. I didn’t pass the test... but they had cool goggles.
8. I for sure want to come back next year for a whole week.
9. The girls wouldn’t let us see the frogs they found... (this really bothered him!)
10. “I think I’d like to be a counselor when I’m older, like my counselors. I could help kids, too!”

There were more, but it sounded like an amazing time, and we’ve already made plans for him to hang out with his “BFF” (his words) from camp who lives pretty close to us. I am so grateful he had this opportunity to go and become a part of such a community. Type 1 is not a blessing... but getting to know all of these awesome people certainly was. I can’t say enough good things about the camp experience for him... it was just that good. My mom heart was bursting when I saw his huge grin when I picked him up, and it still is when I think of what a whirlwind the last 6 Months have been for him, and how far we’ve all come.

I am having issues getting photos to upload; I will work on it again when I’m by my laptop. Technology on my iPhone is holding me back tonight.

Only 51 weeks until next year’s camp! ;)

Hello Summer!

As one would reasonably expect with a family like ours... there is always something going on. The past couple of months have been full to the brim of activity for all of us as the school year FINALLY wound to a close.

We participated in our first JDRF OneWalk for Diabetes research and had a good time with that. Our team raised over $2000 this year, which was a great accomplishment in our minds! Son number one was delighted seeing all of the other teams there, and said it was good knowing he’s not alone. I think that while we can tell him this until we are blue in the face, it is so much more real when he sees others like himself . Great event, we are already planning for next year.

All four kids have had birthdays since I last wrote here... so we now are the proud owners of a 9 year old, a seven year old, a four year old, and a one year old. I can’t believe how fast time is flying.... and how slow it seems to go some days. The days are long, but the years are short. I still try to soak up all of the things they do at all of their ages, though... because I know youth is fleeting.

We have done a little bit of traveling in summer so far, but most of our vacationing is still upcoming. Collin did go to camps but I am saving all things camp for another post. Mostly, we are staying up late and sleeping in, and loving life without strict schedules. 6 weeks left of break... :)

Keep on the Sunny Side...

It's a little... shall we say... "retro", but I can't help but have this song going through my head pretty frequently these days.  It speaks to me.

If you know me, you know it's been a crazy few months.  If anyone would have told me a year ago that this is what the next year would be like, I would have been skeptical. I would have maybe done some things differently, but probably not most of them.  It's been a roller coaster ride.  I used to like roller coasters. I don't anymore.  The literal ones or the figurative ones. But that's what it's felt like.  

There are still plenty of highs...  like when the kids are all asleep by 9...  or when we get to see friends... little boys laughing in the bathtub... movie night with the family... snuggles on Saturday mornings... weekend adventures as a family of 6... students who make me proud to be their teacher... the unexpected and humbling kindness of strangers...  the expected kindness of friends and family. 

And there are lows... Not always being able to meet every need of every kid at the moment I'm needed... disappointment... needles... insulin... sick kids... watching the news...  constant sleep deprivation... your 6 year old sobbing and telling you he hates his life now...  dwindling patience...

But they are all worth it, and are the things that make mamas (and dads) strong.  And sometimes even when  the sunny side isn't too bright. We will continue to be hopeful, we will continue to seek joy, and we will try to remember to always be grateful for the life we are living.

Well there's a dark and a troubled side of life

There's a bright and a sunny side too

But if you meet with the darkness and strife,

The sunny side we also may view

Keep on the sunny side, always on the sunny side,

Keep on the sunny side of life

It will help us every day, it will brighten all the way,

If we keep on the sunny side of life

Oh, the storm and its fury broke today,

Crushing hopes that we cherish so dear

Clouds and storms will in time pass away

The sun again will shine bright and clear

Keep on the sunny side, always on the sunny side,

Keep on the sunny side of life

It will help us every day, it will brighten all the way,

If we'll keep on the sunny side of life

Let us greet with a song of hope each day

Though the moments be cloudy or fair

Let us trust in our Savior always,

To keep us, every one, in His care

Keep on the sunny side, always on the sunny side,

Keep on the sunny side of life

It will help us every day, it will brighten all the way,

If we'll keep on the sunny side of life

If we'll keep on the sunny side of life

Songwriters: Ada Blenkhorn / Howard Entwisle

If you know me, you know it's been a rough few months.  If anyone would have told me a year ago that this is what the next year would be like, I would have been skeptical. I would have maybe done some things differently, but probably not most of them.  It's been a roller coaster ride.  I used to like roller coasters. I don't anymore.  The literal ones or the figurative ones. But that's what it's felt like.  

There are highs...  like when the kids are all asleep by 9...  or when we get to see friends... little boys laughing in the bathtub... movie night with the family... snuggles on Saturday mornings... weekend adventures as a family of 6... students who make me proud to be their teacher... the unexpected kindness of strangers...  the expected kindness of friends and family. 

And then there are lows... Not always being able to meet every need of every kid at the moment I'm needed... disappointment in people I shouldn't be disappointed in... needles... insulin... sick kids... watching the news...  constant sleep deprivation... your 6 year old sobbing and telling you he hates his life now...  snapping at your own kids who don't deserve to be snapped at after spending a day with other kids who used up my patience before my own kids had a chance to...

But they are worth it.  And sometimes even when  the sunny side isn't too bright. We will continue to be hopeful, we will continue to seek joy, and we will try to remember to always be grateful for the life we are living.

You Look Tired.

If you've ever been a parent, you know what tired feels like.

If you have ever been a parent of more than one child, you really know what it's like to be tired.

If you are a parent of a baby, you know that kind of tired.
And three-year-old-obsessed-with-transformers tired. (that's a more elusive kind of tired, though, I think...)
And if you have ever been a single parent or had your spouse/significant other go away for any number of days every week, you know that tired.
And then there's the tired from lack of sunshine that winter brings, and the tired of extra job stuff... And the tired of when your house is sick and the kids and husband drop one by one...
And then the kid with the chronic illness gets it and that involves a whole slew of new challenges...

I am tired. 

And then the baby needs your time because you're the mama, and only you know how he likes to have his back and bottom patted as he falls asleep when you're holding him and wishing he'd settle down... and only you know how he needs to be put in the bed just so so when he rolls over he doesn't bump the side and wake himself again and make you start rocking him all over again...

And then the three year old needs you because you cut his sandwiches the right way, and you can talk about transformers with him and look at picture after picture of old transformer toys while he tell you the names of most of them... And when his feelings are hard for him to process and he needs his mama, you are there. Of course.

And then when son number one needs an insulin injection or a ketone test or wants to talk about carbs and how much his life has changed... you talk to him about it often. And try hard not to worry about what the diagnosis entails for him.

And then the 8 year old needs mom time because girl talk is the best kind of talk. And to talk about fantasy books with magical spells and about how much she likes cheesecake (a lot), and to talk about boys as needed...

And the husband needs me because he spends the weeknights on his own, and has two days a week and change to really be present as part of our family...

And I try to do all of the things, and to be where I'm needed.
And everything is important, and every kid's need...
And I love them all...

But you get exhausted. I do.

But I don't know if I'd change anything. The same people who make me question my sanity on a daily basis are the same ones that I don't know what I'd do without. 

And so if (er... when) you see me and I look tired, just assume that I am tired. Really tired. And know that I know this already, so telling me is optional.  (and not encouraged)

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?