Saturday, November 2, 2013

Type 1 Diabetes: One Year Later

Some days it feels like it was two weeks ago, rather than fifty two weeks ago.
 
Some days I feel like we've been doing this for a lifetime.
 
365 days can feel like many different things.
 
It was one year ago today that we took Jameson to the emergency room, for an ordeal that would forever alter our "normal."  I have to chuckle when I re-read the post from that weekend.  Some of the things I said - I really, truly knew nothing about the disease or what it entails every single day.
 
I will never forget that weekend.  Ever.  When I'm old and gray, I will still remember November 2nd, 2012 and the few days following it with clarity that I imagine will never fade.

I'll remember texting this picture to my mom, saying "Look, he's finally starting to thin out!"

Picture taken about a week prior to diagnosis. 
Weight loss is one of the main and most notable symptoms of T1D.


I will remember how he was so spaced out, getting more and more lethargic every day.

Day prior to diagnosis.
 
 
I will remember the doctor visit, a mere 30 hours prior to his diabetic state of unconsciousness, in which the doctor that we saw (his primary physician was unavailable that day) dismissed him with a diagnosis of acid reflux, after my providing of all of his blatantly obvious symptoms. 

On the way home from the doctor office.


 
I will remember taking him to daycare the following day, despite my concerns, relying on the accuracy of the previous day's reflux diagnosis. 
 
And oh, I will always remember picking him up from daycare, when things got very real and more terrifying with each passing moment.  I will remember the pallor and labored breathing.  I will remember Matt's insistence, once we both arrived home, of taking him to the hospital asap, and cancelling playdate plans for the evening.

Unconscious on the way to the ER.



I'll remember the doctor with the Latin accent (not a racist comment, just something that stands out to me) telling us that we'd discuss things in detail later, for we couldn't wait another minute to get the central line into Jameson so he could start getting better.  Then, once it was in, the doctor breaking it down for us at 1:30 AM, and explaining there was a chance that my sweet little baby could "wake up" with brain damage, due to his severe level of dka (diabetic ketoacidosis).

I'll remember staring at him in his unconscious state and praying.



I'll remember the diabetes education, and then, the weight of the realization of how much our lives were really going to change from that point forward.

I'll remember that first smile that Jameson gave us when he woke up, and how it made my heart dance with joy.





What a year it's been.  Three hospitalizations, many highs and lows (both with the blood sugar numbers AND our emotions!).  My little guy is such a trooper.  Whenever we change his "button" (infusion site), he will cry a little bit, then proudly say "I'm brave."  He won't eat until his blood sugar has been checked, and if you happen to let it slip your mind (because we're only human, right?), he'll quickly remind you!

My family has been a member of a very special group of people for a year now.  Not by choice.  But let me tell you, the D connections that we've made in the last year have been invaluable to us.  The parents who never get to sleep through the night.  Those who have to fight with school administrations to ensure proper care of their children.  Those who worry about their D child(ren) all the time (even more so than one worries about a non-D child).  These people have become dear friends to me, even those that I barely know.  Social networking has connected me to thousands of D parents, who I can always ask questions, vent, and get advice.  It's a group of people no family wants to be a part of, but since the "membership" is far beyond our control, we embrace it, and lean on others for support and strength.

It still hurts me to say it, but one year ago, my son almost died.

So today, I don't mourn diabetes.  I don't mourn the loss of a "normal" childhood.

Today, I celebrate that I get to smooch my Jameson's squishy cheeks every day, and laugh at his sarcastic and silly personality.  Today, I celebrate that Hendrix and his little brother can play together, and that I can hear both of their giggles resonating through our home.  I celebrate my 1:30 AM alarm every night, because it means I still have my sweet boy to check up on.  I'd much rather have that alarm, than face the alternative. 



Today, I celebrate Jameson. 
 

 
 




Happy 1 Year Diaversary, buddy.  Love you to pieces.
 

34 comments:

  1. What a beautiful post. So glad that God spared your child and that you are blessed to have them both.

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  2. Hi Stephanie,

    I saw your post on Facebook. I am 16 years old and my dad passed away and suddenly having no parents hit me like a ton of bricks. I was so lost and I still feel lost a lot.

    Between losing my dad, having to move and everything, I tried to end my life months after.

    When I saw your post I cried because bullying also led to my breakdown.

    Some of us don't have it easy and I did not hurt myself for pity, or because "Sally called me a bitch". A lot of things led up to it.

    I am guessing you have not experienced many hardships and I am happy for you but you really need to be more open minded and mature. I am having trouble coping and I was never coddled and sadly I don't poop sprinkles or marshmallows or anything cool like that either.

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    1. She's got a Type 1 diabetic kid. If that's not a hardship, I'm not sure what is.

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  3. http://www.youtube.com/watch?v=nlvOrTq4Bes

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  5. I came to your blog because I read your (wonderful!) post about parenting someone posted, but this entry caught my eye.

    I've been a Type 1 diabetic for 24 of my 29 years, and while it hurt my heart a little to see the pictures you posted of your son when he was diagnosed, it made me really happy to read the words you've written about it.

    I want to give you and your little boy a great big hug, because even though all of it sucks (believe me!), it seems like he's a brave little dude, and he's got a great mom backing him up. :0)

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    1. Thanks, Sarah! Some days are definitely a struggle, but T1D is a monster we won't let win! :)

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  7. Hi, Stephanie. I got here from your "Kids Are Not The Center Of My World" that my wife had just sent me. In a way we share very similar lives your family and mine. Same age, part German, also two boys, diabetes type 1, both fully employed and fitness enthusiasts. Moreover looking at the picture of your young Mr. Jameson I am starting to wonder how you managed to clone my Ian long distance :)

    Anyways this is just to say hello and commend you on your brilliant piece of writing. Our best to you and all your boys.

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    1. Vipod - that's craziness! How old are you boys? My oldest will turn 4 on the 19th of this month, and Jameson turned 2 on June 24th. Are both of your boys T1's?

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    2. Seems like we're a little bit behind than. :) Ian turns 3 in ten days and Patrick's just a baby. My wife's had T1 since childhood and I remember reading there was only a 6% chance for boys to inherit diabetes from their mother's side. Patrick, upon birth gave us a nasty scare by having blood glucose at 1.9mmol/L, but it sorted itself out in a few hours. Do you use an automated glucose pump and/or meter? We've just gotten it a few months ago and I swear to god it's driving me insane, especially the wireless meter part.

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  8. Awesome... and I'm totally stealing your Jediabetic idea.

    My daughter was diagnosed with type 1 last Jan, and she has been amazing. I appreciate the thankfulness in your attitude. My wife and I share it.. I'd rather count carbs, test and check at midnight than not have the opportunity to.

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    1. I 100% agree. They're little superheroes, right??

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  9. Just started following your blog after seeing a post on facebook that I loved, "This Young Mom Has Something To Say...." My husband and I are expecting our first child in a few weeks. Your post brought tears to my eyes. I can tell just by reading it how great of a mother you are! I know a few other little people with diabetes and know the challenges it can create. I look forward to continuing to follow your blog!

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  10. he is so precious. i am here in tears, because my then 7yo was diagnosed last year in may. please PLEASE tell me that the "doctor" who did not check your baby's blood sugar was taken back to school to learn symptoms of diabetes!? that is absolutely inexcusable!
    anyway, so thankful that he is well.
    also, love the shirt you made him. are you going to put that on cafepress or zazzle or something?
    God bless.

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  11. Hi Stephanie,

    3 Yrs Ago I Was Diagnosed With Type 2 Diabetes...I Know What Your Dealing With...I Take Both Pills And Insulin...Some Days I Just Wish I Had A Insulin Pump Attached To My Body Cuz Of How Much Meds I Take In A Day...My Readings Are Always Up And Down...Hang In There Jamison...Your A Strong Lil Boy Who Is Full Of Life!

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  12. I've loved reading your Diabetic post! I've been hypoglycemic since high school and my whole family has some type of autoimmune disorder. All this to say that some day there is a high possibility that I will develop either type of diabetes. I'm so proud of your whole family dealing with this so far.

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  13. Stephanie,
    You are a wonderful mother who obviously loves her son very much. Continue to do what you're doing and Jameson will grow up happy and healthy. T1D can become a part of the everyday routine (as you have now come to realize) and though there is always that fear of something happening or going wrong, you just have to appreciate that it's not a death sentence and that there are ways to live a full and wonderful life. I've been type 1 since I was 15 (coming up on eight years now! how is that possible?) and for a long time I let my anger towards my diabetes keep me from living. As Jameson grows you will be the one to show him that being different is not so bad. He IS brave and he is so strong for such a little guy. Take care.

    Sarah

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  14. I just found your blog as well. Congrats on all the traffic you must be getting! Time to throw some ads up on here! My husbands father has T1D and he's had it since he was your little one's age. I worry all the time that my little boy (who is just 5 months) will have it too. Your post brought tears to my eyes but I sent it to my husband because it's important that we know what to look for. Thanks for writing this and I am a new follower! Beautiful family

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  15. I understand your pain as my two sons (3 yrs and 17 mos) have a serious gastric disorder called Gastroparesis. It is evidently fairly rare in having one child with it and unheard of having siblings with it...lucky me :-) Anyway, thank you for your thought about being lucky enough to have to wake up at 1:30am for your son. Sometimes I get caught up in the symptoms and worries and forget about how much worse it could be.

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  16. I found your blog from a link to your parenting post (which is awesome! ) and the T1 post caught my eye. My daughter was diagnosed 7mos ago. I completely understand the ups and downs. It's hard on the whole family. Best wishes to your family!

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  17. Hi Stephanie,
    I came across your post and I hope I can give you something positive to think about. Jameson has a bright and NORMAL future awaiting him. My son was diagnosed w/Type 1 when he was 9 and now he's 19. After the emotional roller coaster ride we all take when we hear this kind of news we quickly settled down and his diabetes just became a part of our normal everyday routine. He was as active as any other kid and it never slowed him down. In high school he played Football and Rugby and hardly lost any pods. (BTW, He uses the OmniPod.)
    Today he's a happy and healthy sophomore at Boston University studying Biomedical Engineering and getting on with his normal life. I've met so many incredible kids, excuse me, young adults that are similarly happy and healthy and very normal.
    Good luck to you, Jameson and your whole family.

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  18. Thank you for a beautiful post about Jameson. What a terrible ordeal at first. I agree 1000% with kelex, Jameson can look forward to a great future. I've had T1 for 41 years and counting without any problems. God bless all of you.

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  19. Thank you all for your wonderful comments! He is doing fantastic. I totally think it affects me more than it does him! He's my little superhero. :)

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  20. Praise God you took him to the hospital and he recovered!

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  21. You are a rare person. Too many people would be living everyday worried sick about what they almost lost and could still lose. But you have found the best outlook, celebrate what you have and treasure it instead of worrying and wishing for "what could have been".

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  22. Hi Stephanie! I read this post after seeing your blog regarding the parenting issues (BOTH MY HUSBAND AND I COULDN'T AGREE MORE). I will have had T1D for 23 out of my 29 years of life and my sister (3 years younger) will have had it 20 years. Needless to say, we both were diagnosed spring of our kindergarten year. I was like your son; diagnosed improperly with pneumonia twice so finally when my parents could no longer find a pulse and my breathing was labored and after conversations with a rude nurse, my parents took me to the nearest ER and from there it's history. I spent 2 weeks in the hospital and was in/out of consciousness.

    It sounds like you enjoy healthy living choices (nutrition, exercise, etc) and wanted to share a change I made. While I attended college out in Bismarck a natural doctor spoke in one of my classes and I was curious as to what she could maybe do to help my blood sugars. That was 5 years ago and we (my sister also sees her now) still go out to see her (no longer live there) and can say I was blessed to carry a baby boy with a 5.9 A1C. I have never been below an 8.0 A1C in all my years growing up and I honestly believe her help had a lot to do with it. I also see a chiropractor regularly and also believe in their work to help the nerves that are connected to the pancreas.

    It sounds like your little guy has done EXTREMELY well in getting used to the new way of life and now knowing his story will keep him in our prayers along with your family. Life changes and emotions run wild, but having that support of others is crucial.

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  23. Hey stupid cunt! You know nothing bullying on bully would say the shit you habe said. You know nothing you stupid cunt. You don't like bullied daily and know one cars not even your parents. I wamt kill myself when I 7 because bullying and know one stand up for me not even my my parents you fucking cunt. Hope you get rapped them laugh and tell you toughen up and get over it stupid cunt. If you don't what its like being bullied cunts like yoy need shut their fucking mouth. You are not bullt yourself with fucking fucking attitude cunt!

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  24. Stupid cunt know nothing about being bullied and know one cares about you. Fucking cunts like you need be ganged raped and told toughen up and get over it. See you like like when are the victim. I want kill myslef 7 because no one gave shit about me, not even my parents. Cu ta lile you know nothing bullying. You were pribably still are bully.

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  25. Stupid cunt! You are nothing stupid cunt who needs ganged raped and told to get over and see how feels to be be victim. You know about bullying, cunts like you need know the pain of something bad hapi gdaily. Until you stupid knows daily daily torment ypu need to keep your mouth shut you stupid cunt

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  26. Stupid cunt you obviously don't what its lile to be bullied daily and no one gives a fuck about, not even your parens. Stupid cunts like you need to be ganged raped and told toughen up and get over it. See what feels lile whem are the victim and some cunt tell you that.

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  27. Stupid cunt needs to be torture and develop PTSD and then lets see this stupid cunt says what she said abouy about bullying. Stupid cunta like you who doesn't know what like tormented daily and have no one care about you and needs t o know the pain we suffer. I wanted to kill myself when I was 7. You are nothing stupid cunt. Hope get ganged raped then people can tell toughen up and get over it. See what like to be a victim. If you you don't know what like to be victim from bullying you shut fucking mouth you stupid cunts!

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  28. Stupid cunt! Fuck you! You will probably delete my my comment because fucking fucking coward. You can tell.people get over toughen up, but when down to it can't follow your own own advice stupid cunt. You know nothing about beimg bulid you stup cunt.

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