One of my new-online friends, Hallie, wrote an interesting blog today. Click here to read it.
It's hard to read, but exactly the way I'm feeling right now. I hope you'll go read it. She's a sweetheart.
Certainly there are other diseases worse than diabetes, but nothing else requires the daily management like diabetes. Nothing else needs hour by hour care every single day. Or night. Weekends. At parties. At the pool. At school. It never stops and so many people just don't get it. I mean....sometimes they don't even TRY to get it.
And so, they.... "hint" that the caretaker is doing something wrong. Recently I was talking with someone about Matthew's late-night highs and their first question was "Is it his diet?"
Meaning.....I'M feeding him the wrong food. I'M doing a bad job. Why can't I fix it?
Like I'm not trying to fix it?!?!?! I haven't slept through the night since Matthew's diagnosis. I am always on call. ALWAYS.
We check Matthew's blood at least 8 times a day every single day. That's a minimum of 56 times a week. I stick him with needles every single day---we're up to 35 shots a week now. I see when he feels horrible and give him sugar so he gets better....I give him extra insulin when he's high.....I count carbs for every single bite of food he eats. But it's not good enough......
And then there's the worry that he will actually eat everything you give him....like at school. The last field trip of the year, he dropped part of his lunch on the ground. Well, of course, he already had the insulin in him.....
There's always something to think about.....I'm always setting my watch alarm so I don't miss the next sugar check......always watching and thinking.....
And it will never been good enough....because this disease is not going anywhere. And I hate it.
And there are so many other families living the same way. I never knew. I never realized what diabetes was really all about. I had no idea....
Now, don't get me wrong.....I'm grateful that God gave me this little boy to care for.....and I would not change that for the world. Matthew is such a blessing in my life.......but I hate that he has to live with diabetes. For the rest of Matthew's life, he will never be able to eat one bite of food without thinking about carbs....and insulin.....and activity.....and excitement....
It's just so much.
Sidenote for my parents: It's hard to write about things like this because my parents read this and worry. So, Mom and Dad....I'm okay....really. None of this is new to you..... This blog is like my therapy......I just need to vent. Okay? Matthew just checked his sugar and it was a perfect number. We're okay.....Don't worry.....
Sidenote to D-Moms: You know what I'm talking about!
11 comments:
Oh I so do and I so know what you are talking about . Someone just this am told me carbs and sugar are the same thing LOL !!! I love it !! No they dont get it and they dont get that it is an everyday management thing and every hour on the hour type thing . I want to scream sometimes . so yes you are good and there is nothing that you are doing wrong just some people dont get it that is all . God is good and God bless you .
Sorry you are having a rough go. We all have those days. I'm glad God allowed our paths to cross so when each of is having a down day with the D we can lift the other up. Bekah had a spell where she was hitting middle of the night highs and we were advised not to correct them unless they hit 400 or higher and she corrected on her own. Our CDE said that she sees that commonly with kids still in the honeymoon phase. Maybe Matthews highs are just a weird phenomenon that will eventually correct its self. You are an awesome mom and Matthew is lucky to have you!
I totally know! We get it all out on our blogs and then log off and live. Live happily. Our lives are blessed for sure. It just would be nice if there was more information out there for the self appointed diabetes police. If they only knew...
Every single word you wrote is familiar! I know exactly what you are talking about. It helps knowing that we're not alone. Hang in there. I am too. : )
It IS a crazy life we lead. I went to visit my sister a few weeks ago and even though I had told her before what it is like taking care of Emma, she did not understand until she saw what it involves day in and day out. I felt so understood when she told me that - like finally someone gets it!
It seems the whole D-community is suffering from this right now... what is up with that?
I hope you find your way through this rough patch soon. Praying for you friend!
Ditto everything you said! I think we are all in this "funk" right now, more than usual. Maybe it is the summer heat?
Thinking about you!
HA! I was JUST talking to my mother-in-law this afternoon about this. About how people don't get it. She mentioned that she watched Dr. Oz on Opera yesterday(it was a re-run) Of course it lumped type 1 and 2 together.
I told her how much we all have to deal with people thinking we just need to "eat right" and "get active.
Well gee wiz, why didn't I think of that!?!?!?!
OH BOY DO I GET IT!!! I was laughing today as I was yelling at Joe to finish his lollipop before he was allowed to play...he was 74 with double arrows down on Dexter (the Dexcom 7+ CGM). My sister heard me and laughed too b/c we were imagining what other parents must be thinking when they see me and Joe...knowing he has diabetes...and most likely thinking I caused it b/c I make him eat starbursts and lollipops.
It is sooooo all-encompassing - truly NO ONE can understand unless they live it day-in and day-out. It seeps into everything...
xoxo
Lots of hugs! We're all here with you. You WILL get through this. Stay strong, and please email me if you need any person-to-person-who-gets-it time.
HOw did I not see this until now?!? I'm glad you liked the post. I feel it, too - you know I do! We all do. And I swear the only things that make it better are blogging and knowing there are others out there that understand! ((hugs))
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