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Can I be honest for a moment? That girl above is my daughter. My baby girl. She is 10 years old. Some days, she looks a lot older to me than she really is. Life with a disease forces you to grow up a little faster. I like to talk a lot about all the things she can do, she can eat, she can be, even with the life long diagnosis of type 1 diabetes. But I’m going to let you in on a secret…

Sometimes I get scared. Sad. Fucking angry. As much as I like to tell you she can do anything, the reality is there are still things she can’t do. See, when I was 10 years old, the greatest day of the week was Saturday. On Saturday morning, I would wake up, run into the kitchen, pour myself a bowl of my favorite Cap’n Crunch Crunch Berries cereal with milk, maybe add a banana, and sit down and watch TV. I didn’t need to wake up mom. In fact, I think she liked Saturdays just as much because she could sleep in a little. I was able to do things for myself.

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Breakfast at our house now requires finger pokes and blood tests and a breakfast bar or a measured cup of “healthy” cereal (because the sugary stuff plays HAVOC with her blood sugar, all though we occasionally sneak one in for her), a measured cup of milk, and a banana only on occasion if my wife and I are feeling adventurous, because banana’s make us chase highs for hours.

Fair warning, this post is disjointed. We had a bad week in the type 1 world this week. And it wears us down sometimes. I appreciate you allowing me this space to vent a little. Thank you. When I hear about other children suffering, or of families mourning, it reminds me just how close we come. Every day. And I remember why I started this page. To let you in. Show you. Hope that you will join us in the fight to eradicate this horrible disease.

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Seeing video like this breaks me up inside

 

Knowing that an 8 month old baby died this week because the Dr assumed the baby had the flu and sent them home crushes me. How fucking hard is it to do a damn finger prick test? Why isn’t this mandatory yet? My wife and I do 12 or more a day! Is it cost? Insurance companies? How many more children need to die from “flu like” symptoms? If a child comes in with the flu, CHECK HIS BLOOD SUGAR LEVEL!

I apologize. But knowing that in different circumstances, if my wife didn’t know what to look for, if she didn’t already know for sure what it was, and had we gone to the Dr’s office instead of the ER, well, who knows…

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I remember being a kid and taking off on my bike by 10 am, and being home for dinner. Playing with friends all day. Stopping at 7/11 for a Big Gulp, or Thrifty’s for an ice cream cone. Those things are still possible. Just… harder. More… dangerous. Everything requires planning. Supplies. Education. Do the other friends know what to look for? Would they know what to do? There aren’t anymore spontaneous trips to the fro-yo place or to Baskin Robbins. Those trips require planning. Timing needs to be right. We don’t like to double stack insulin often. So we plan those trips. We don’t tell the kids, so they think it’s a surprise, but all the details have been worked out already. Shhh, that’s a type 1 parent secret.

Innocence lost. I talk often about just letting her be a kid. And as far as she knows, she is. But I know better…

Know the warning signs. And if you’re concerned, ask, no, DEMAND a blood glucose test

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I’ve included a new page on my site with the signs here: Type 1 Warning Signs

Hug your children

Team Blackdogsrule

 

 

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5 Comments

  1. I was just looking at my 10 year old this morning, and I thought the same thing. She acts and looks so much older sometimes. I wonder if at 10 years old I would have been able to handle this disease as gracefully as she does. Don’t get me wrong, she has her moments, and initially accepting it was difficult, (also still has it’s moments) but the way she takes things in stride amazes me. Checking her BG every 30 minutes when not attached to her pump, or going from going to the nurse every once in a while (pre-dx), to going there every day…..she doesn’t complain, she gets mad sometimes, but she is handles it so well.

    Sometimes I think that family and friends think I am overreacting, or that diabetes isn’t that rough, and then you hear about a baby passing away! Or see a post about an early morning seizure leaving a little girl unable to speak for hours, it’s all just so scary. We need a cure.

  2. Don’t every apologize for feeling what you feel. I’ll “ditto” everything you just said. We need a cure.

  3. My brother is not even a child and it just breaks my heart as to what he has to do. Again, thank you so much for spreading awareness. Because of you, Jimmy was able to get the correct diagnosis.

  4. I posted this to my Facebook status the other morning – 🙂
    So this morning I have to post about trust!
    Trust is defined as reliance on the integrity, strength, ability, surety, etc., of a person or thing; confidence.

    Prior to a diagnosis of diabetes I would say I was a trusting person…I probably got taken advantaged a little for always wanting to trust since diabetes ….trust is a demon!

    Last night is all about trust and numbers! Yesterday all day…CV ran High! Nothing was different about the day (the day before similar day and blood sugars were amazing!) during the day I can mentally handle numbers! So at bedtime I got 327 (too high) but she just had good deal of insulin at dinner! I send her off to bed knowing I will check her before I go to bed in few hours….so 10pm comes quickly….I get our meter, strips, lancet and head to her with baited breath! I poke her finger while she sleeps soundly and wait 5, 4, 3, 2, 1…….the magic number 227 UUGGHH she didn’t come down ( well she did come down just not what I was hoping for) this means I need to give her a shot! So I draw up the extra insulin, inject my sleeping baby and then head off to my own bed!

    Side entrance stage left – my demon…trust!
    After giving her insulin….I begin to to ponder how much I trust my little machine! I make life or death decisions for my baby based on a machine! Am I being dramatic – NO! If her machine was inaccurate and I gave her insulin when her sugar was say 150 – I would send her plummeting and well heading to the ER and if sugar was already low and The machine reads it wrong and I just go to bed- she may plummet and then there is if she is higher than she really is and I don’t give her enough insulin! I have seen how close she came to death when she was diagnosed….it is a very harsh and a very real reality! So no…no drama just what it is!

    SOOO now my newest bed friend joins the party….Anxiety! In bed I am now pondering how much I rely on the integrity, ability and surety of these mass produced tiny little devices…..I ponder what if she was low and I am asleep and don’t know she is going into a coma, what is she stops breathing….and well my other friend anger didn’t want to miss all the fun….we are really getting this party train going now!! Now I am just pissed! Pissed here I am having to trust a little machine for accuracy to keep my child alive, pissed that I even have to have my husband ask “so how were her numbers today”, pissed that I hate math, pissed that I am now having a “party” at 11 pm! Then I realize I am not pissed I scared to death the my baby will not make it through the night – every night! Why because of numbers! Numbers that are perfect one day and then for no explainable reason drastically change the next! Fear that the machine i rely on will and might not be accurate 100% of the time….it is massed produced!

    So I pull the emergency stop on this party train….get out of bed! Grab said supplies! Poke her again she is 233! Take a deep breathe add an Ativan to stifle the party…..I need quiet to rest and try to sleep! I drift for a little and wake up at 1 (alarm is suppose to go off at 2-lately I don’t even need the alarm – I probably don’t trust that either LOLOLOL) check her she is 155! Thank you insulin! Back to bed…

    Now I don’t post this for anything more than letting whoever reads know what type 1 is really like! It is a disease filled with demons who sabotage you 24/7! I grew up with family members with type 1, I have known other children and their parents with type 1 and had NO CLUE! Sure I am a ridiculous mother that worries, stresses and well has a party at 11 but I know am not alone! Type 1 the moment I heard those words changed me in every sense and way!! I struggle to see the good of those changes….I try to find one positive every day…I’ll be honest most I don’t but I am grateful for the amazing people who we have met over the last 8 months that might be on the same train! I am deeply sorry there is even a train to be on…but I am glad we found each other! I am also incredibly grateful for all the love and support we have received from our friends and family! CV is surrounded by love and well that is all that really matters!!!!

    Thanks for reading….now I must go get my bestie…COFFEE!!!

  5. Thanks to all you parents that take such meticulous care of your type 1 children. It’s not a disease of just the child–it’s a family disease. When I was diagnosed almost 57 yrs. ago (will be 57 in mid Oct.), my mother had to take over my complete care. My best friend’s mother learned to take care of me too so that when I was at her house, she knew what to do. I was able to attend diabetes camp at age 11 where I learned more about taking care of myself. My best friend was later my suite mate in college & she (a nursing major) helped me to care for myself. I later married and had a son who learned as a toddler to help his mom watch for my signs of low glucose level and still helps some to this day. Since the days of the pump and a meter, it has been much better to control; however, I’m still hoping that Medicare will someday pay for CGM and supplies.

Speak!