EARLY-RISER-blog

I’ve been busy. Really busy. In fact whenever I think about how much stuff I have to do, I get super annoyed at some article that came out last year how we only are as busy as we force ourselves to be — it felt a lot like blame. I can’t help but wonder if the person who wrote the article as children, a medical condition to take care of, freelance clients to manage, wood to chop for heat etc, etc….Anyway. I make mixes for my friend who is also teaches my pilates/booty barre classes. So, I thought I should start sharing the mixes more. I’m mostly on instagram these days, because I’m lazy, or I’m busy. I’m busy lazy? Crazy lazy busy?

Click here to listen to Early Riser on Spotify. Now you know all about my corny taste in music.

There are a few things that I have been working on that I am super proud of. Ill post more on that later.


quick

That back to school feeling has always been my favorite. Excitement mixed with fear as you leave your kid’s hearts in the hands of others for the majority of the day. You hope that the other kids will see how you see them, that teachers and staff will love them how you love them. While no matter who you are it’s a mixture of relief and happiness when you watch them walk in, it takes a little something else to know that their lives are literally in their hands. You hope they will realize that the sudden tears might mean his blood sugar is crashing, you hope that this year a kid doesn’t try to rip off his dexcom, that he won’t catch a stomach virus and end up in the hospital, you hope that everything is as easy as it can be for him considering and you pack glucose in his pencil box and cry just a little, in the darkness of the early morning kitchen, and you’re awake because you had to treat a low. Here’s to all you parents out there, the ones with kids who don’t need juice boxes to save their life, the ones who raise compassionate friends who help when our #t1d kids are low and high, to the parents who know the fears that I am talking about. You got this. We got this. Let’s go.


I met Maggie during one of her most vulnerable moments, as she sat in Children’s Hospital, 8 months pregnant with her 4 year old son, Angus laying in a bed, hooked up to IVs, needles being poked into his fingers, with the new diagnosis of Type 1 diabetes. My heart ached over what she was going through, I sent her my obsessive list of what she should get for home when she was discharged. Henry started to make videos for Angus to help him through some dark times. Henry had only been diagnosed about a year earlier.

Then Buzzfeed picked up the article, Mom.me among others. We had no idea that so many people would be captivated by our little boys sending each other messages. These kids HAD to meet. They just had to. But how? Henry LOVES water, in fact, water is the second fastest way to lower his blood sugar. Swimming, waves, water is his miracle in combination with the number 1 medical marvel, INSULIN (please don’t tell me that he just needs to drink Okra water…seriously don’t, I will crush your face in if you even whisper to me that Okra will cure him). Three words came to mind Great Wolf Lodge. And I thought, hey, I met Maggie online while she was going through something traumatic, why not meet for the first time wearing bathing suits? That’s also pretty traumatic, me at my most vulnerable. Haha.

We were in contact with Great Wolf Lodge, they were so sweet and interested in the story between Henry and Angus and offered to host the meet up.

Great Wold Lodge magic wand
We arrived a tad bit earlier than Maggie and her crew and Ry and Henry could not wait to meet them. Henry was ready with his wand.

9a76e93ead8911e3aef612141806e92c_8

They even put up in two suites across the hall from each other, though we should have just built a gerbil tunnel because they were crossing the hall so often, or waiting outside each other’s door every other hour.

So we decided to slowly torture all of our kids with THE BIG SURPRISE (and our instagram followers) over the course of 2 months, offering weird random clues, like “long hallways, magic wands, water, lots of pillows, pretend animals….” Ry, figured it out way before anyone else but she pinky swore that she would not tell a soul and she didn’t (this girl is prime best friend material, seriously). The last few days, we let the secret spill and the kids were LOSING IT. Why didn’t we tell them before? Because they were losing it for three days prior, imagine two months? The staff at Great Wolf Lodge was amazing, the lifeguards understood that we had to store our kits under their stations, the servers were kind to bring our kids food quickly, because it was later than normal when we ate dinner and the boys were crashing. We could not have asked for a smoother trip.

meeting-angus-henry-gwl
I joked to Maggie that it was like we had been online dating and were going to meet in real life, that Henry was actually a 400 lb Russian dude in mayonnaise soaked sweatpants. Close, but not really. The boys were a teeny bit shy, Henry greeted Angus in his speedo. I’m fairly certain that Isla will take down anyone who tries to date Henry in the future, she barreled into our room more than once demanding to know where he was, convinced that I was hiding him, when he was already down at the pool with Thor.

CUPCAKE
At dinner, we tested blood sugar and gave I even gave insulin to Angus who was sitting right next to me, the way he looked at me, for the brief injection was along the lines of “someone else knows how to do this!” and I wont forget that look he gave me.

maggie-sara-gwl

Our families exchanged tips and tricks, compared foods that cause blood sugar spikes, and breathlessly chased our shared brood from pool to arcade to storytime and finally to bed.
The experience was unforgettable for the kids. Days later, Henry still hasn’t taken off his Great Wolf Lodge bracelet.

hotelline

We can’t wait for the next time the two boys with the blood sugar bromance get together, and hopefully what started at Great Wolf Lodge will be a tradition that they hold for the rest of their lives. Also, are you jealous of Henry’s bathing suit?

If you want to follow the insta-pal relationship between Henry and Angus (and sometimes the sisters get int here) just search for #henryandangus. The boys love to hear from other kids with T1 as well! So send them a message and who knows? They might even respond!


I designed a new blog for my friend Lisa Congdon, and it’s up!

COMPUTER-SCREEN-CONGDON

It’s so nice to work with people that are creative because they totally get it. You should seriously check her work out, she’s super awesome…

Comments Off on Hey guys….

BLOOD

Miss Manners just enraged a lot of T1 Diabetics and their families recently over here.

“DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic. I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later.
Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies.
Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?

GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.
The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.
You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.”

————————

Dear Miss Manners,

How dare you suggest that I cram myself and my 6 year old son into a tiny disgusting airplane bathroom (or any public bathroom for the matter) to give him life saving insulin? Your response likening my child’s medically necessary insulin to him actually pooping on a table in a restaurant or peeing directly on an airplane seat is repugnant.

Have you actually seen a blood glucose meter? In recent years? The amount of blood that is required to read his blood sugar levels is so tiny, a paper cut would cause more blood. On our next flight should I get up and go with my 6 year old son to the bathroom to test his blood sugar 5-8 times or whatever is required during a stressful travel day? Oh, better yet….Should I wake him up while he is so peaceful and quiet, make him grumpy, drag him or carry him while his feet hit passengers faces because he’s so tired he can’t walk and then test him? What if I drop some of his diabetes supplies down the toilet? Will you reimburse me? What if you are waiting outside of the bathroom each time I have to test my son? What if the drink cart is there when I get out? What if he passes out from low blood sugar because the line was too long to get to the bathroom and my glucagon is in my carry on in the overhead bin? Should I mime to you to get the glucagon? I know I shouldnt say anything out loud, how rude. Will you then get it for me? Can you adminster it? My arms are tired from carrying him. Wait, now all three of us need to cram into the bathroom. Are you uncomfortable? It’s quite tight in here. Oh you thought the insulin needle was gross? Wait until you see the huge glucagon needle!

We have taught our child to NEVER be ashamed of his insulin or checking his blood sugar. He is 6 years old and has a lot of responsibility and burden that most 30 year olds don’t have. He sometimes has 8 shots in a day, over 12 finger pokes and a metal wire inserted in his arm each week. Could you handle that?

Recently at his after school program they asked that we give him insulin in the bathroom and we said no. If he ever has to get a shot in his butt and we pull his pants down of course we would go to the bathroom but under no circumstances will we be shunned into a place where people relieve their bowels and bladders to give him life saving medication.

Many of the parents of T1 Diabetic kids are working full time, parenting full time and suddenly expected to be full time nurses specializing in endocrinology with 4 days training. We rarely sleep through the night, we count carbs all day long, even if we aren’t with our kids while we are eating we calculate what they might have to take for the carbs we see before us. We lie awake at night even when our children have nice blood sugars thinking about those stories we read about children with Type 1 never waking up, we think about organ damage, we wish and hope with all of our might that we could take Type 1 from them and have ourselves instead.

Now on top of all of this you want us to make our children feel ashamed of a disease that has already robbed them of their innocence, a disease that nearly killed them before they were diagnosed. You want us to feel ashamed that our children have Type 1 and need medication.

Next time you are on a flight maybe you should just stay in the bathroom, and spare anyone that might have to sit next to you.

Shame on you.

Sara Jensen


It’s our favorite holiday around here.

IMG_0335
IMG_0377
IMG_0419
IMG_0452
IMG_0428
IMG_0459
IMG_0413
IMG_0310IMG_0587
IMG_0580
Hope you are having a sweet one.
oxoxox


Photos by Sara Parsons. Sprinkles by Oh Joy.


LBF-VALENTINE-RY

I made these little Valentines for Ry to give out to her class. We also ordered some cute inexpensive heart sunglasses to attach to them from U.S Toy.

LBF-VALENTINE-HENRY
I also created a more macho version, truth be told Henry rocks the pink.
I thought I would share with you.

Free Download for the Pink Valentine
and
Free Download for the red Valentine.

You can print these on cardstock on 8.5 x 11 paper, I even made a little empty box to write the sender’s name. Ry plans on writing on the back to address them. They are standard Valentine size, 3.5 x 2.5.

Have fun!


IMG_0325

I don’t think that I ever shared the details of Henry’s Type 1 diagnosis. It was a Thursday, Henry said that he felt too sick to go to school (red flag right there), he was pale, had bags under his eyes and now looking back he was quite thin. It’s quite painful now to look at those photos and think, how could I have missed this? The night before he had gotten up to go to the bathroom several times after pizza. I mean like DASHING out of the bed, peeing like a frat boy after a keg stand, over and over again. Two days earlier, I had just lost my birth father to Type 2 complications.

Something wasnt right. His preschool teacher had brought something up a couple of weeks before and we both agreed that something was not right. For about a year before that I kept saying “It’s the weirdest thing, when Henry eats Cheerios and 2% milk he turns into a psycho.” What was happening though is that his blood sugar was slowly going up and up and up. In fact after his diagnosis we gave him low carb cereal and cow milk and his blood sugar level (should be 125-180) went up to 399.

I had given him a bunch of pears that morning 2/7/13 but I could not shake the feeling that something was wrong. So I texted my friend Kim who is an AMAZING ARNP (fancy nurse lady) and told her that I was scared. She told me to come in. We did. We took a blood test (super traumatic), took a urine sample (very bad aim) and sat in the lab room and waited. Typically Kim will stay and talk with me since we love each other. But she was gone, for what seemed like a long time. I started to get nervous. She sent a text telling me she would be right back.

Then she came back. Months later I would start to think to myself, what had Kim felt like? To have to come back and tell your friend that her son had Type 1 Diabetes? Kim knew that my birth father had just died two days ago. If I were Kim I would have like run out of the hospital and never come back or I would have come back into the office sobbing and blubbering making the parent cuddle me. Good thing Im just a designer.

What had taken her so long is that she had taken the time to contact Seattle Children’s Hospital and tell them that she was sending us over. She came back in and told me, we called my sister in Boston who is also a nurse and they spoke medical gibberish (it was gibberish at the time) Ketones, blood sugar etc. Now this gibberish is part of my every day and I try to remember that most people, like me at the time have no idea what I am talking about. I just said “He just had a lot of pears, pears have a lot of sugar.”

But he had Type 1. And when I told him the very little I knew about it he looked at me and asked “Will they give me medicine to grow my legs back?” and I died inside. My birth dad had lost both his legs to poorly managed Type 2 (he was wickedly stubborn). I told him that he would not lose his legs.

IMG_0317

But now, a year later…Im speaking in Diabetic code, we are almost perfectly guessing carbs when we dont have a scale. Henry lets us give him insulin with very little fuss and he gets it. His sister just sat on the couch and warmed up his insulin under the blanket so it would not burn him when he got an injection. His great grandpa bought him his Dexcom and his Omnipod as his birthday present. His Aunt Mara (nurse) when she visits gives him injections and helps us. It has taken a village, it has taken a huge support network of parents P.O.K.E.D (Parents of Kids Experiencing Diabetes), his Endo Dr. Taplin and his nurse Cindi Smith. I’ve been pulled out of dark moments by all of these people, my husband etc. Mostly though? You know who has been the light at the end of the tunnel? Henry. Henry Jared Llewoh Jensen. This brave, hilarious, crazy, crazy smart, sweet, loving boy.

IMG_0318

“Happy” Anniversary Henry. You have rocked this year. I can’t wait to see all you do as you grow up into a beautiful, talented, hilarious strong boy (with both legs). I love you.

And Kim. Thank you. I know I’ve said it, but thank you. You saved my son’s life. You listened to me, you have been so loving and kind. I am eternally thankful and so very teary thinking about you at this moment. I love you so much I can barely handle it. I will never ever forget what you did for us.

3f96e2248f9511e3972a0e52a5db715e_8

If you have questions about the symptoms of Type 1 Diabetes, check out this link. And if you ever even have the slightest feeling that your child may have Type 1 ask to get them tested and don’t take no for an answer.

These first 3 photos are some that I asked the insanely talented Sara Parsons to take for me during our family photoshoot. Sara, thank you for your support and being someone that I can share my fears with over this past year it has meant a lot.


LOST-BIRD-FOUND-RY
This one. She’s feeling shy lately. We had a talk about sharing her story, and she decided that she doesn’t want to share it for awhile…so I’m going with it. Don’t go thinking we forgot about her. She’s very here, quite loud and of course the best girl in the whole world. Henry is lucky to have such a sister and we, I can’t even describe how much we love this little gorgeous, insane, silly little nut.
If you have questions about being a foster adopt parent I am more than happy to answer them. It was one of the best things we ever did.


LOST-BIRD-FOUND-T1-1
When Henry was diagnosed with T1 this social shift happened. It felt like about 95% of the people I knew and counted as friends went running for the hills. I could imagine how they felt though, I could not understand how they got there. But everyone is different. Like, I can imagine how someone could abandon their child but I could not imagine or understand myself doing it. People do things for all kinds of reasons, and you can’t really know why, unless you are them and you never will be. At first I was full of a lot of anger, hate, rage, deep terrible sorrow. Guys, I’m a messy crier, I tried to do this privately at the time to spare the world. So people might not have known how hard of a time we were having. But really, if someone saw me crying from a distance they would contact the Center for Disease Control, it looks that bad.

But anyway, I had it in my head that I had to keep it together, that I had to be calm with Henry and for the most part I was, I didn’t want him to internalize that panic, to know that something was really terribly wrong. He knew enough to know that it was a crappy situation. I had it my head that I couldn’t ask for help, I didn’t want help, I refused contacts that people sent me like “My friends kid has T1 you should talk to them.” I’m like “but they don’t have my kid, no one feels as bad as I feel I am the only person in the world.” It was a dark time. While I was in carb training (it’s a thing) this other set of parents was in the training and they had 2 kids with T1 and they said to me “Don’t worry just eat nothing but packaged food. It makes things easier, you know like Eggos and cereal.” and in my head I was like “F*CK YOUR EGGOS” what I really did was look at them and started to messy gross cry and muttered something about my homemade waffles. I’m not saying that other people would have reacted this way, it’s just my charming way. I’m a total jerk. If something happens to someone else, I’m like borderline smothering, “Do you need a sandwich? Do you need me to take your kids overnight? Do you need me to take you somewhere? Text me any time, I’m there..etc.” I’m not saying that this is better…but now you can see how crazy I am.

When something like this happens though, you quickly see how people divide up. I imagine it might even be the same way people would react if your spouse died, there was divorce, like “Eeeek I’m so uncomfortable…I’ll just walk backwards, slowly and fade away because I don’t know what to say.” But you know what you say? “Crap, this is so out of my comfort zone, I don’t know what to say.” Chances are the person (me) will laugh and say “Me either!” or you can say “I’m sorry this SUCKS!” and the person (like me) would be like “I KNOW IT SUCKS, I NEED A BEER.” and then you are like “LETS HAVE A BEER I CAN DO THAT!”. Dont be scared to feed the newly diagnosed family. Just pretend that you are feeding a family on the Atkins diet, that’s the easiest way. Be like “here is a roasted chicken and some vegetables, you do the scary carb part!” We have already had like 4 days of carb training, we are WORKING on it, we can work on the meal you make. Don’t be scared of us. Eventually, the whole “play date” situation arises. Uh oh. Will you kill my kid? Not likely. Treat him like a gremlin and just don’t really feed him stuff, unless we’ve packed it. If they are a little older, at that point they should be able to navigate food stuff on their own. We will give you lots of info if you are ready for it, if you aren’t ready for it, don’t feel bad, let us take your kid for a play date. That’s fine we don’t mind. We want our T1 kid to feel as normal as possible, and we wont be sending them off for play dates if we don’t trust you, so–major props to you first play date friend you are 100% awesome in our book.

LOST-BIRD-FOUND-T1-2
Here Henry’s future wife Maddy checks Henry’s blood sugar, which she calls and offers to do when she knows shes about to see him.

To the teachers who don’t understand how the newly diagnosed T1 kid still acts crappy sometimes think about the T1 kid like this. The kid, just got told that he/she is sick, that they could have died, that they can die if they don’t have medicine. They are a kid. Up until this point it might not have ever occurred to them that they would die, that life was ponies and rainbow sprinkles up until this point. They have to get a shot if they want to eat Goldfish crackers, they hate shots, but they love crackers, they feel hungry but they don’t want a shot. Its hard. Or, think about how you are all packed up to go on a huge exciting road trip, you are packed perfectly, there is gas in the tank, you have a deadline of getting to your destination by nightfall…ready to go, right? But, now you can’t find your keys. EVERYONE is in the car, getting antsy in their seats, they are READY TO GO, but crap where are your keys??? Hours are flying by and it seems like you will NEVER get to where you are going and the whole trip is ruined…feeling frustrated? That is what its like having a high blood sugar number. No matter what anyone says to make you feel better, you can’t find those diggity dang keys and you feel like crap.
The alternate is that you had your keys all along and your trip is AWESOME and you are like an hour into the trip, no traffic, awesome weather, best music, everyone is in a good mood, you just passed the sign that said “next gas station 50 miles” and then your car stops, in the middle of nowhere and you realize that your tank was empty. You are scared, your phone doesn’t work, you can’t call anyone to bring you gas and there is not another car in sight. That my friends, is low blood sugar.
read more…