Tag Archives: auto-immune diseases

Eighty Dollars

What does $80 buy you these days?

Not as much as it used to, that’s for sure.

But for $80 you can get a cute pair of shoes.

You could get a cute purse to go with those shoes.

You could get a designer pair of jeans to go with said cute shoes and cute purse.

For you guys out there, you could buy a round of golf with cart, drinks and lunch.

Or you could get a Grip-Rite 1 In. Narrow Crown Stapler 18 Gauge from Home Depot….whatever the heck that is.

And, $80 is how much we spent on Sunday to take our family of 5 to the movies, complete with popcorn drinks and candy.

$80 is also how much it costs to fill my son’s insulin prescription every couple of months. (We are lucky and have insurance so for many it is much, much more.)

$80 to keep my son alive.

Seems ironic that I could either buy a new pair of shoes, or keep my son alive.

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Sleep, Come Out, Come Out Wherever You Are

Medium had a late basketball game last night. He played well and was hungry after, so we let him have a chicken sandwich and hot fudge sundae from McDonald’s. By the time we got home and counted carbs, it was 9:30. The total carbs for his “little” bed time snack was 95.

He ate his food, took a shower and went to bed.

Around 11:00 I came upstairs and looked at the MySentry which showed his BG was in the low 300’s (can’t remember exactly what it was.) A finger stick confirmation showed he was really 389 mg/dL! What the hell???

This could only mean one thing. Medium forgot to dose.

A quick look into his pump confirmed. The last bolus given was at 6:22.

UGH.

Two correction boluses, several hours, finger sticks and zero sleep later, he was back in normal range.

I hate diabetes.

I will never sleep again.

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Diabetes Playlist

When I fired up my new Prius this morning it somehow automatically started playing songs from my iPhone. It was very perplexing; I don’t remember setting that up, but whatever. I figured I would just go with it. It was actually a nice change from the morning radio talk show that I usually listen to. But the next thing I knew, I was crying. It was as if “The World’s Saddest Songs” playlist had made its way into my iTunes. The first song that came on was a real heart-wrencher, Tim McGraw’s “Don’t Take the Girl.” Kind of caught me by surprise, but hey, it’s an emotional song. Then came, “Total Eclipse of the Heart” by Bonnie Tyler. “Once upon a time I was falling in love, now I’m only falling apart.” Just rips at your heart, right? Next up, “Copacabana.” Still crying. Hmmm, well you have to admit, it’s kind of tear-provoking. Lola and Tony are in love and now Tony is dead. Okay maybe that one is a stretch.  I think it was somewhere between “Love Shack” and “Welcome To The Jungle” that I realized that it was not just the music that was making me cry.

It was the damn diabetes.

Somehow the music of my yesteryears brought on a firestorm of emotions. Wishing I could take diabetes from him and give it to myself. Shuddering at the thought of every finger stick, injection, site change and CGM insertion he has had to endure. Imagining how awful he must feel when he is sky high or bottoming out. My heart was aching for how alienated he must feel now. Wincing at the thought of how scared he must be at times, and sickened by what thoughts he might be wrestling with about his future.  It is just more than any kid should have to deal with and I wanted to take it all from him.

That’s just the cold, hard truth that is diabetes. Sometimes it catches up with you and overwhelms you. And you just need to go with it. Ride it out. Because no matter how unpredictable diabetes is, there is one sure thing; the sun will rise again.

But listening to these songs got me thinking. I need to put together a diabetes playlist. I need a group of songs that will fire me up when I am down.  Songs that will make me feel empowered to seek change, and hopeful for a cure and a better life for my son. Songs like Christina Aguilera’s “Fighter” and Michael Jackson’s “Man In The Mirror” and “We’re Not Gonna Take It” by Twisted Sister.

What inspiring songs would you suggest I put on my “Diabetes Playlist?”

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Did I Ever Tell You You’re My Hero?

Today’s theme: Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

All of the above.

Really.

I am almost 4 months into my journey as a mother of a child with diabetes, and I can ‘t believe how many amazing new people I now know because of it. (And some people for whom I have known a long time but now have a new-found respect).

We have an AMAZING diabetes educator. I wish I could just keep him in my pocket and reference his brain whenever I need to. Medium’s pediatrician and endo are awesome too. All of the staff at Children’s Mercy Hospital are at the top of their game.

Medium’s school nurse has gone above and beyond in making me feel at ease while he is at school all day long.  His teacher, the principal, all the school staff have rocked.

A woman, whom I had not met in person until today actually, hooked us up with a scholarship for Medium to go to diabetes camp this summer. How awesome is that?

The women of the DOC that I have met this week alone through Diabetes Blog Week have been nothing short of inspirational. And not just the one’s who have multiple children with T1D and husbands with cancer and other children with horrible diseases besides T1D, all of the women who are brave enough to put their inner-most thoughts and feelings; the good, the bad and the ugly, out there for the whole world to see and learn from.

My sister-in-law who, although she has lived with this disease for close to 40 years, doesn’t let diabetes define her. I have known her for twenty years and only in the last 4 months have I realized what all she has had to endure. And things are so much easier now! Even though my own sister-in-law has T1D, I never knew how serious or complicated it was because she made it look easy. It is a part of who she is, it is not her identity. She is a very creative, artistic person and is a great writer. She has always worked in publishing, and now she works for the ADA. She is a huge advocate for diabetes and is an amazing role model to Medium of what it looks like to live with type 1 diabetes. (Plus she doesn’t make me feel bad that I don’t change the lancet on the poker as often as I should!)

My mother-in-law, who went through everything that I am going through, 40 years ago when they used pig insulin and didn’t have glucometers, and didn’t even know what a healthy blood sugar was. I know that if she was able to raise my sister-in-law to be the smart, creative, kind, successful person that she is with virtually no tools to help her, then I can certainly do the same now with all of the advanced technology out there.

Everyone who gets up every morning and goes to work or school, who cleans their house and does laundry, takes care of their kids, runs corporations, plays professional sports, contributes to society and doesn’t let this disease tell them they can’t.

But most of all, my Medium. He does not complain. He does not ask why. He counts his carbs. He gave himself shots. He sticks a needle in his finger 10 times a day without so much as a whimper. He knows how to navigate his insulin pump. He gets A’s in school. He plays soccer. He plays basketball. He plays football. He loves his dog. He tolerates his brothers. He hates taking showers. He loves peanut butter crackers. He gives the best hugs. He is 10 years-old and is scared about what diabetes is going to do to his life.

But you wouldn’t know it.

He is my true hero.

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He Ain’t Heavy, He’s My Son

Today’s theme: What They Should Know

“What is one thing you would tell someone that doesn’t have diabetes about living with diabetes? Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.”

Once again, my new friend, Meri, hit the nail on the head with this one. She actually wrote the post 2 years ago, but it does a phenomenal job of giving you just a peek at what a day in the life of a diabetic is. I encourage you to read it here.  Our Diabetic Life

But re-posting all of Meri’s posts kind of defeats the purpose of having my own blog, even though somehow she has all of my thoughts in her swelly brain. So I shall come up with my own version of basically the same concept.

“He ain’t heavy, Father…he’s my brother.”

This is the motto for Boys Town, a community formed in 1917 by a Catholic priest named Father Edward Flanagan. It is located in Omaha, Nebraska, where I grew up. Basically, it is the only incorporated village in the nation created exclusively for children in need of a fresh start in life.  It is a very cool place. But I have always loved this statue and the meaning behind it. It speaks to the very core of basic humanity. It doesn’t matter how hard it is, it needs to be done and, therefore, I will find a way to do it. (Kind of the deeper, more eloquent predecessor to Nike’s slogan, “Just Do It”, which is also one of my favorites).  Maybe growing up driving by that statue is why these feelings are ingrained in me.

But that is why I do what I do in regards to Medium’s diabetes. It sucks. And it’s hard. And it’s complicated. And it is exhausting. And if it doesn’t look like that to you, that is because we are KICKING ASS at managing his horrible disease. And it is manageable. But if we don’t manage it, for even a minute, he could die.

HE COULD DIE.

So, yes, when you see me at work, or up at one of the boys’ schools or activities, or wherever you see me, and it looks like everything is just hunky dory, that is because we are not going to stop living our lives and dwell on this. We are not going to walk around with our heads down and the letter D sewn into our chests.

But just because we are happy and smiling and seem to just check a blood sugar and punch a few buttons into a pump, doesn’t mean that diabetes isn’t a horrible, complicated, deadly disease with no cure.

Just know that behind the scenes we are working very hard to hit a moving target. (Again, please read Meri’s post, it really puts it in perspective. Here it is again so you don’ t even have to scroll back up to click the link!  Our Diabetic Life).

The one thing I want you to know about diabetes, is that I do what it takes, because he is my son.

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I Am Kicking Ass Over Here!

Today’s theme: One Thing To Improve

“Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!”

This week has been so busy with school year-end activities: field trips, awards ceremonies, concerts and the ever-so-prestigious-and-totally-necessary (enter eye-roll) Pre-School graduation (hey, I am all for celebrating my kids and their accomplishments, this is just one that I think is a little silly and self-indulging, but what the hell….) that I have not been able to get my posts for D-Blog Week up until almost 11 p.m. We were done with all activities by 7:00 tonight so I thought I would be able to post sooner but alas, here I am, the late night poster again. But the reason for my tardy post is a good one. I have been overwhelmed with the amazing and totally supportive comments from all of my new friends! Just think, on Monday, no D-friends. Two days later, so many I have lost count! What an amazing community that is the DOC! Someone said it is the greatest club you never wanted to be a part of! Ain’t that the truth! I have never been so easily accepted into a group before. If you have or care for someone who has diabetes, then you are in, and in with love! Simply amazing!

Well, after all that sticky-sweet (pun intended) talk, it’s time to trash myself. I told you yesterday that I am much more comfortable at finding my faults. Actually I don’t have to find them at all, rather I try to hide them. Sigh.

So grab yourself a cup of coffee, (or vodka, I don’t judge) and pull up a comfy chair because here goes….

I need to be a better, wife, mom, sister and daughter. My family bears the brunt of most of my flaws.

I need to eat better, exercise and loose weight.

I need to stop buying bags and purses.

I am addicted to McDonald’s fountain diet Coke.

Oh wait, this is supposed to be something I could improve on related to my son’s diabetes…..sorry, I am so well aware of my flaws that they just roll off the tongue!

Hmmmm…….let’s see….something to improve on….um….well, there is….no. Well, what about….huh, no. Okay, okay how about…. hmmm……well this is awkward. I can’t really think of anything. It’s ironic. I am keenly aware of all of my personal faults, but when it comes to Medium’s diabetes, I AM ALL OVER THIS SHIT!!! Don’t get me wrong, I make mistakes, there are too many moving parts of diabetes care for even the long-time veterans to not make a mistake now again, but for a rookie such as myself, I pretty much ROCK! (Anyone else find it interesting that in the post where I was supposed to praise myself, I could barely do it, but here where I am supposed to call myself out on something I am calling myself a ROCK STAR?) But seriously, a carbohydrate doesn’t enter Medium’s body without me knowing about it, we have test strips, glucose tabs and snacks with us at all times, we have glucometers and cake gel in every level of our house and in both cars, I download Medium’s pump and pour over his numbers every 3-4 days, I buy home A1c kits so I won’t have to wait 3 months to know how he is really doing, I talk to the school nurse daily. Actually at Medium’s three month check up the other day the diabetes educator was almost irritated that I already knew everything he was going to tell us after downloading the pump; when Medium tended to be high, how close his CGM was to his meter BG’s, what his A1c was.  I am telling you, I AM KICKING ASS over here!

But it is exhausting, draining, paralyzing and all-consuming and my personal health and relationships are suffering because of it. I need to learn how to let up a little bit. I need to understand that I can’t be in control of this horrid disease at all times. I need to remember that I have two other kids who need me, too. I need to praise Medium more often for being such an easy diabetic kid to take care of. I need to remember to breathe.

Huh, look at that, I do have some things I could work on!

(You didn’t really think I was that conceited, did you?)

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A Shout Out To Myself

Today’s theme: One Great Thing

“Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!”

So you can see from the description that I am supposed to sing my own praises. I like to sing other people’s praises. I find self-deprecating behavior so much easier. I am my own worst critic. So I will start this post by singing others’ praises and we’ll see if I get around to the “tooting my own horn” part.

I was so excited to be a part of Diabetes Blog Week. I have only found a few other D-blogs even though I knew there were others out there. I just haven’t had time to find them. Being a D-mom can be lonely. You feel isolated. You feel like no one really knows what you go through on a daily, no make that hourly, basis. And if you do it well, make it look too easy, others really don’t know what you go through. So I couldn’t wait to find other D-moms to commiserate, and at times, celebrate with.

WOW.

I was overwhelmed today.

Around mid-morning at work I decided to check my personal email. Sometimes Medium’s school nurse emails me with questions or just FYI’s so I like to check it every so often. I couldn’t believe my eyes….several comments from other D-bloggers! I have had more hits today than ever before, I even had someone from Pakistan visit my blog! I’m international! And even though I started this blog for myself and to vent my feelings for myself, I have to admit, it is exciting and rewarding to know that others are reading and may be inspired, entertained, (or infuriated, as the case may be) by my words. And I have over a hundred new blogs to work my way through now! I can’t wait!

And here is the mouth-gaping-open thing I have learned about the DOC (diabetes online community). Even though yesterday none of these people knew me or knew of me or knew anything about me, today we are connected in a way that I can only share with them. It’s like when your child (or yourself) is first diagnosed with type 1 diabetes. One day you know nothing about the disease and, quite literally, the next day you could teach a class on the relationship between blood sugar, carbohydrates and insulin. Diabetes puts you on the fast track, both in education about the disease and anatomy and physiology of the human body. But it turns out it puts you on the fast track to immediate, deep friendships, too. And that part is amazing. Those blogs that I mentioned yesterday that I was in awe of, somehow each one of them found out that I mentioned them and each one of them messaged me with the most sincere words of praise, understanding and encouragement. I so wasn’t expecting it, and I actually started crying, right there at work in my chair with my coworkers looking at me like I was nuts (they do that a lot though 🙂 )

Imagine that feeling when you’ve been stranded, alone, on a desolate island and you realize that you are being rescued. That is how I felt. Those comments from those D-Moms (and others too!) were my life raft. I know it’s just a dinghy in the vast ocean that is diabetes, but I know now that I am drifting back towards civilization and these other moms are going to be my survival fuel. So a huge THANK YOU to them!  (And a special shout out to Laura of Houston We Have A Problem, for telling me how to add the banner!) I know I am going to learn so much from these women (and some men, too!) about things diabetic and not, and I am so re-energized by this. (The first piece of advice from someone will probably be to shorten my posts. I am well aware that they tend to be a little long in the tooth, but if you knew me, you would know that this is who I am. I am cognizant of it and will try my best to have relevant, educational, entertaining, passionate, SHORT posts whenever possible–but don’t hold your breath, I got shit to say! 🙂 )

So I promised to try and pimp myself out a bit, so here goes.

I am a great FAKE nurse.

I have a Bachelor’s degree (not in nursing) and worked a fancy corporate job back in the day, but quickly ditched the pantyhose (yes, we still wore pantyhose in those days) for poopy diapers when Large was born. By the time Medium came around 2 years later, I was desperate to use my brain for something other than nap time nursery rhymes and stimulating toddler talk. So I got a job as a Unit Secretary in an Emergency Room. I. LOVED. IT. I got to be near the action, but no one was going to die if I didn’t fax the correct piece of paper. I worked there for 9 years until a year ago when I went to work in the IT department for the same health system (it was time to start making a little more money for my time). I sat next to the ER doctors and nurses for 12 hours at a time learning from them. That has proven to be great training for being a D-mom.

So I do a pretty good job at all the nursey stuff that comes with having a D-kid (and there is a lot of it!) And while my time in the ER has given me more medical knowledge and experience than the average bear, I, in no way, compare to the true greatness that is a REAL nurse!

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I Have No Friends

So I am super excited to be participating in Diabetes Blog Week!  It makes me feel all official and professional and everything. It’s a place for all of us diabetes bloggers to gather and share information on the same topics and learn from each other. I so love the very few D-blogs that I have found so far and I am so excited to find and read more!

So, there is a cool banner and button to help display and promote Diabetes Blog Week, but I can’t figure out how to use them. As it is, it is 10:00 p.m. and I just got home about 30 minutes ago since leaving the house at 8:00 a.m. Today is the first day of Diabetes Blog Week and I am almost late in getting my first entry in, I don’t have time to figure out how to use the banner and button. And here is the real scary part,  (I work in IT….shhhhhhh…….please don’t tell anyone what a fraud I am!  Really, I just don’t have time right now to figure it out, if I had more time, I could figure it out…..I’m sure……)

Today’s theme is “Find A Friend:

“It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today! “

As if not being able to figure out to “grab” the banner and button didn’t make me feel stupid enough, I can’t even find any diabetes friends.  I mean, any new ones that you all wouldn’t know. I have found the “Big Guns”, D-Mom Blog, Our Diabetic Life, Candy Hearts, and Houston We Have A Problem but those gals are like legends in the DOC! (Diabetic online community–I learned that just the other day….).  Just look at their blogs, they are beautiful. I look at those blogs and all those feelings of inadequacy and self-loathing from junior high come rushing back. I want to be like them. Instead I have a very elementary looking blog layout and can’t figure out how to grab buttons (I hate that they use the word “grab” as if to imply how easy it is to just, grab, it and throw it on your blog…..pouring salt, twisting knife).

But I have 3 kids and a full-time job outside of the home and I have only been blogging for a little over 2 months (my 10 year-old was diagnosed with T1D about 3 months ago) so I don’t have anyone new for you to read. I guess that new blog is ME! I am my own new friend!  And admittedly, I started blogging for me and only me. I have always been a person who expresses herself best with the written word, so it is my therapy to blog it out. I really didn’t care if anyone read it. But then a few people did read it, and they gave me feedback and all of the sudden I wasn’t just writing for myself anymore. I am writing for an audience and I just want to keep my audience happy. I guess in the end, if my simple, button-less blog layout turns everyone off and no one is reading it anymore it doesn’t matter, because I was just writing for myself anyway. And the last time I checked, I can’t un-friend myself.

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Happy Mother’s Day

Medium had his 3 month endocrine appointment the other day.  We got an A+ from our diabetes educator.  He liked our numbers  and what we were doing with adjustments and such. His A1C was 6.5–at diagnosis it was 11.4–a “normal” A1c is between 4-6, they don’t actually want it much lower than 6.5 because that probably means that we are having too many lows. So we are doing great! I say we as if I am the one with diabetes, but diabetes is a team sport. And I am the captain. Both the diabetes educator and the endocrinologist asked Medium if he had any questions or concerns.  They asked how he was doing with diabetes and if having diabetes was miserable or if it was ok.  He looked at them like they were speaking Japanese. He has taken all of this very well and is relatively unbothered by it…..for the most part.  There are times when he is frustrated, like yesterday when all the siblings of Small’s baseball team got to have the extra juice boxes and he couldn’t have one. Or when everybody wants to go to Sonic after a game and he can’t have a slushie. But he gets over it almost immediately. One of the best things about Medium actually is that he has virtually no short-term memory, he gets mad about something (REALLY mad sometimes) and then poof, he’s moved on.

I’d like to think that part of why Medium seems unaffected by diabetes is because I am doing such a good job of keeping his sugars in tight control and making sure he is leading as close to the same life as he was pre-diagnosis, as possible. But it probably is really because he just goes with the flow. That part of him has me in awe. I wish I could be more like that.

In any event, he is doing well.  We are kicking some diabetic ass over here! It’s hard work, but so worth it. I would move heaven and earth if it meant my kids would be healthy. There is no greater Mother’s Day gift than three thriving kids!

So a happy Mother’s Day out there to all the great mom’s I know.  Especially the ones who sacrifice everyday, go above and beyond, never have time for themselves, endlessly worry about their kids’ futures and then get up the next day and do it all over again.  In short, happy Mother’s Day to every mom!

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It’s My Blog And I’ll Cry If I Want To

I have been writing a lot about myself lately. This life-changing curve ball that has been thrown at me has really knocked me off my center and I am struggling to find my way back to equilibrium. And, this is my blog so I’ll cry if I want to. But I do want to make a few things clear.

#1-No matter how bad things seem on some days, I am well aware that they could be much worse. I know there are people out there who might look at my situation and think it was a walk in the park compared to what they are going through. And I know, and am related to, some people who would probably give their right arm to have our issues instead of their own. I never want my writing to sound whiny. I know that despite the hand we have been dealt, we are still abundantly blessed and I try hard to remember to find those blessings each day.

#2-I am not exhausted because my kids are over-involved in after school activities. I am exhausted from 3 continuous months of fragmented sleep. Period. Each kid only has one activity right now, and to be totally honest, thinking about going to watch one of them play or perform on the weekend is the only thing that gets me through the work week. So yanking them out of their activities will not solve my exhaustion problem.

#3-My husband is not nearly as affected by all of this as I am. I guess you could chalk it up to men just being a more simple creature than us complicated women folk. My husband pointed out to me after reading some of my posts that we have very different feelings about the way things are going. While I am exhausted, stressed, overwhelmed, worried, anxious and sad, he is just, well, fine. I mean, he doesn’t over analyze anything. It just is what it is for him. How I wish it could be that simple for me. I guess in a way it is good that it is so cut and dry for him, because I don’t know what we would do if we were both wound as tight as I am, but conversely, he knows that I am worried enough for the both of us, so managing Medium’s diabetes has fallen 100% on me. A friend commented the other day at how well Medium seemed to be doing and my comment was, “yes, he is doing great, because he isn’t the one managing his diabetes, I am.” I am the one running around with a net making sure that if, despite my best efforts, he falls, I will be there to catch him and he won’t get hurt.

#4-Having just said that Medium isn’t managing his diabetes, is kind of not true. I mean, he doesn’t make his own endo appointments, and he doesn’t make sure he has enough supplies and then call in his refills to the pharmacy or pour over doctor/hospital bills, but for what he can do, what a 10 year-old is capable of, he is a ROCK STAR! He makes me so proud. Other than a not-so-minor problem of him sneaking food (the chocolate chips and who knows what else he got into last night had him in the 300’s all night) he is all over the details of his disease. He accurately counts carbs, has mastered giving himself a bolus and all of the settings of his pump, and is very in-tune to how his body feels. He also understands the somewhat complex (at least for a 10 year-old) relationship between specific foods, insulin, his blood sugar, and his continuous glucose monitor. He told me that today his pump kept beeping at him to alert him of a low while he was at school. I asked him what he did. He said that he didn’t do anything because he knows that there is usually a lag between his CGM reading and what he really is, and he had just eaten a snack without dosing so he knew he would be fine. I seriously had to fight back tears. Tears of sadness that he has to mess with all of this when he should just get to be a 4th grader at school, but tears because I am so proud of how he learned all of this and how he just accepts that it is what it is.

#5-If I could learn to just accept that things are what they are sometimes, I would probably be a lot less stressed. My husband and Medium are the two least stressed people I know. When I am done crying, I will work on that!

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