I am excited that my son has Type 1

I think I thought about diabetes at least 1o times today.  Probably more than that.

I don’t think Brayden gave his diabetes a second thought at all today, maybe not even all week. And he was the one getting all the shots and finger pricks.  He’s been the one taking all the needles for almost the last 3 years.

All 19,000 of them give or take a few hundred.

(8 shots a day, up to 10 finger pricks a day x365 days a year x 3 years)….yup, 19,710 needles my son’s fingers, legs, arms and butt have taken since he was 14 months old.  And for the most part, he really hasn’t cared one bit.  He’s even starting to introduce his family in public as Julian his dad, Cari who is a vegetarian and “I’m Brayden and I have dialabetes.”

In this world of Type 1 I find it is 95% of the time the mothers who are the ones who have taken on the role of their child’s pancreas.  Every single day, 24/7 we are calculating, counting, making our babies bleed and sticking them with syringes to keep them alive.  19,710 needles by our “diaversary” on December 31st of this year.  Holy crappies, how on earth did we survive that?

When I go to yoga & teacher training I have my cell phone glued to my side and will only leave it outside the room if Julian knows I am unavailable for an hour and I know what Brayden’s insulin doses and his meals are doing for the hour I’m away.  I know that Julian is more than capable of being a pancreas himself and he does an amazing job at it.  But our early months with having a baby with Type 1 left me so shaken, maybe even to this day, that I find it necessary to be diligent in knowing what is happening with Brayden’s blood sugar numbers and knowing he is okay.

Within the first year of living with this disease, Brayden had some incidents where he became limp in my arms and was barely conscious.  His insulin had peaked too much and had rendered him a rag doll, leaving me to shove fruit snacks into his mouth and squeeze his cheeks frantically and repeatedly, making him chew to keep him from going fully unconcious and needing to call 911 or administer glucagon (think epi-pen sorta only for those with diabetes).  I’ve run to the help desk at the Y, have ran to a neighbors house, brought my limp boy to the lobby of restaurants with him beating me up through his low blood sugar fit while I struggle to keep him awake long enough to keep him safe.

Brayden hasn’t ever had an incident like this without me by his side, and the idea of me not being there for him to help, or that a low wouldn’t be caught in time scares the living daylights out of me and then some.

Now than I am venturing out into the world beyond leaving our son to go grocery shopping and attempting a small and hopeful career teaching yoga so we can maybe enroll him into PreK in the fall, I am finding my instincts twitching and feeling strange driving an hour away from Brayden for sometimes an entire day at a time.  It’s hard when your entire being has become conditioned to work off of what someone is eating, playing, doing or not doing and how much insulin was injected verses what kind of food was eaten when and if they are running around a lot at McDonalds or sitting and playing with their happy meal toy can be the difference between danger and safety when it comes to what is happening in your child’s blood.  Welcome to my brain…uh, Brayden’s pancreas, I mean.

But Brayden?  He’s awesome.  He dances in the rain.  All he wants to do is roll around in the snow.  He swims until we have to bribe him out of the water.  And he loves to point out butterflies and caterpillars to me b/c he knows they are pretty and they are for Mommy.  Anything that is red makes him happy because Lightening McQueen is red so that is his favorite color…and he will be sure to point out what are his family member’s favorite colors and that a certain color would have made his aunt or nana happy to see had they been with us at a specific moment using a public restroom while he sees their favored hue on the tiles of the floor.  Anything and everything is special and makes Brayden happy and he shares that with everyone around him.  Fears?  Only if you don’t snuggle with him enough do they come up.

I’ve struggled at times to understand the difference between my instinct talking to me and my fears holding me back.  As I purposely leave the little body to which my pancreas mind is attached and drive away from him, something inside me can want to give up anything I am doing to stay rather than leave.  That feeling was incredibly strong for the first two-ish years, I’d say.  (First 12,000 needles in case you’re counting).

I used to have a quote on my freshman college dorm wall.  It said “Get something.  Grab hold of it for yourself and don’t let go for anything, not wind, rain, fire or hell.  Hold on as though it were the only thing you were ever going to have, and let it be not hell that rips such a passion from your hands, but let it be that which brings you through to the other side.”

As much as I love my son, he is not a thing and the circumstances surrounding him sometimes could be considered that which I have to get through, so I can’t say he’s that “thing.”  My instinct tells me that this journey is a marathon, not a sprint, and that I need to do things to make sure we make it to the finish line not only in one piece, but triumphantly and in great shape.  This disease doesn’t leave room for mediocre.

My fear says stay by his side and make sure he is stable and okay.  Uhhhhhmmmm, welllll????  Good idea in theory, but when he’s 16, I don’t think he’ll be having much of that.  I think if he still wants a lot of snuggling at 16, there’s gonna be a whole host of other issues we’re dealing with, there people!

So the instinct is telling me to move forward and do things to make life better in the long run.  The fear is telling me to stay still and just be okay.  I don’t know about you, but I have these crazy lifespan goals in my head.  I’m gonna make it to 122, Julian to 129 since he’s 7 years older than me.  If people are living into their early 100’s now, and will hit their 120’s in our generation, then Brayden’s gotta see the ripe fabulous age of 150, right??

I just gotta think big and think forward and think great.  Sure, 19,000 needles in 3 years could sound devastating and low blood sugars that could lead to seizures and worse  could make me want to curl up into a ball and just watch every Pixar movie known to a kid rather than repeatedly returning to scenes of diabetes lows and disease-imposed stresses.

Or I could say how incredibly PROUD I am of such a small child.  How HONORED I am that he is in my life.  How EXCITED I am for him that for some reason (no it wasn’t jelly beans instead of Cheerios on his high-chair tray, too much breastfeeding or the fact my eyes were crossed while I was in labor) that he is among the 5 & under population that is being diagnosed at an alarming and unexplainable rate.  Because in his lifetime of 150 years of FABULOUSNESS, he and his Type 1 peers are going to see some AMAZING & INCREDIBLE medical developments with this disease that are just going to be AWESOME.

Take that, fear.

 
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7 thoughts on “I am excited that my son has Type 1

  1. Keerie, I didn’t see this until today. You and Julian are amazing and so is your devotion to that wonderful little boy, Brayden! Our lives are so much better with all three of you in it! Love, Mom

  2. Thank you so much for sharing your story! As tears run down my face from your encouraging words I am laying here in a cot sized window bench bed with my husband as my beautiful 11 month old baby girl is asleep in a big metal crib in the middle of this hospital room….the first night out of the ICU and the first night she is sleeping soundly unhooked from all the machines. She was diagnosed with type 1 diabetes 3 days ago. It’s been the longest, most heart breaking, most emotional days of our life. But she started smiling again today. We heard her giggle again. She’s waiving her chubby little hand again (that even 48 hours ago had lost all it’s chub)….but life is sweeter than it’s ever been because of her spirit…even though I’m terrified of the road ahead…reading your story gave me so much hope. This disease will not beat me! It certainly will not beat my little girl. I needed your story as I lay here so exhausted and mentally drained and spent yet unable to sleep. There is so much hope. Thank you for reminding me!

    1. Oh, Katy, just 3 days in??? I sent you an email, I am here if you need someone to talk to! I remember being in the hospital crying and so drained and unable to comprehend what was happening to our baby. I am so glad to hear that she is giggling! That metal crib is just the worst, I remember that. I hope this message finds you home and comfortable and Diapers & Diabetes will be there for you when you need support! Hugs hugs hugs! ~Cari

    2. I, too, remember when Cari’s son Brayden was diagnosed at 14 months, because I am his “Nana”. The whole family was in shock, but Cari and Julian have done a wonderful job of taking care of Brayden for over three years now. He is the most delightful little boy! It seems like an overwhelming job, and I am sorry you have to learn about how to do it. But it can be done successfully. There are many families on Diapers and Diaetes that will help you through. Prayers for you and your little one.

    3. I’m in the same boat right now. It’s Saturday night and we went into the ER on Tuesday night. I never expected to be told we were dealing with diabetes. I expected them to send me home and tell me its totally normal for my 12 month old to drink a lot of water in the summer and be cranky, probably teething. Take some tylonal. Instead we started IVs and began poking around for hidden veins. It was brutal. But she is better today, curled up beside me sleeping. I’m tired too but feel like I need to keep searching for more answers to my questions. Like how on earth does a baby wear a monitor.

      1. Hi Lily,
        Oh goodness, still in the hospital? How is your little one? I’m so glad you found us, we have a group on Facebook and there’s over 1000 of us from all over the world here to help you and answer all your questions we can!!! It’s a daze in the beginning and it takes time to adjust, do what you need for you and we are here for you, please find us on Facebook and request to join the group, it’s amazing. Hugs from one t1 mama to you. ~Cari

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