Thursday, September 6, 2012

Ramblings

 
This blog is a ramble.   Three or four ideas in one because Im tired.  
 
(Im always tired.)   
 
Sometimes caring for Reubens diabetes is like having another child to take care of.  
 
Its needy and demanding and stomps and rants.   Its constancy is exhausting.  
 
Even though its a part of him, when I think of my son, diabetes is like somehow a seperate thing.   A compartment I can tend to and then keep on treating him like a normal child.   As normal as can be, considering.   With his multiple daily injections I will be honest and say its morphed into a highly routinised life - despite what they told us at diagnosis.  Hes finally eating a full sandwich, or full serving of breakfast cereal.   Amounts I can quantify and carb count more accurately.   Full units of insulin that fit with those meals.   
YAY for that.  
2 years coming.  Props Reubs :)   
Right in time for his 3rd Birthday! 
 
I think back to the difficulty of all those 'guessed' quarter units with a syringe and wonder how we did it.  Shovelling food back into a cup to re measure and finally guess what he ate.  Then a guess at how much insulin to give to match the guessed food intake (argh!).   This picture below reminds me of the full first year.   I felt ragged.   Like I wasnt going to make it through.     
 




 
We did make it through.  D-Parents do it tough.  Anyone that says differently hasnt walked a mile in our shoes.
When I sneak into his room to poke his fingers through the night, I hold my breath.  I check hes breathing.  I look for the rise and fall of his little chest.   I peek at his hands to see if hes twitching or shaking.   He remains asleep but must sense my presence and  holds a finger out for me.   He inadvertantly begins sucking because this is our routine.   I feed him carbs in his sleep to stop his blood sugar dropping dangerously low.    And, I kiss his soft button nose, and chubby cheeks.    I hold his hand and he wraps his fingers inside mine.  Sweet Jesus look after my baby tonight help him wake safely in the morning.  The gravity of the disease is heavy.  He trusts me to keep him alive.   He does as I say and endures the needles, the pokes, shovels in the sugar to treat lows.   Lord, please never let me let him down.    Simple prayers, but desperate and full of love.

So far, we're a good team. 

Love to you all xx

17 comments:

  1. This is exactly how I feel this week. That photo made me laugh, Gawd I love that photo.

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  2. You are more than a good team you are GREAT! Many prayers and hugs being sent your way today and every day as we all try and keep our little ones alive each and every day. xoxo

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  3. Gosh! Has it really been 2 years? It seems like just yesterday Jules.

    Love your prayer...I do the same...the looking for the breathing...a movement...hoping that Joe is OK...as he sleeps.

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  4. Two years... must seem like a lifetime. So difficult with these very little ones; it will get easier. You will keep him alive and you won't let him down. I know it's possible, have to be a fool not to realize it is possible, but I believe the odds are still in very much in our favor. I have slept through alarms, many times, out of exhaustion. She has been fine. God, or someone upstairs has not let us down yet.

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  5. Jules I just wondered the other night if all d mama's do that, the whole watch for breath first before even reaching for the hand to check. Isaac starts nibbling at the air before I even poke him sometimes, a sure sign he is low or dropping for sure.
    That picture of the chicken is completely how I've felt lately with D. I never knew how much the ups and downs of d would effect me, our family, it isn't always an easy ride is it?!
    Happy Anniversary - you guys are an amazing team ;)

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  6. Hi Julie, not a day goes by I don't think of all of you! Miss you guys and pray we can still reconnect one day. Please say hello to Anthony, Evander, Jojo and Reubs. Krystal xx

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  7. Hi – Will you please post a link to your important Blog at The Type 1 Diabetes Community at vorts.com? Our members will really appreciate it.
    Members include: Those living with Type 1 Diabetes, their families, friends, experts, caregivers and support groups.
    It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, Photos, and Videos if you like.
    Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
    The Type 1 Diabetes Community: http://www.vorts.com/type_1_diabetes/
    Thanks,
    James Kaufman, Editor

    Also: The Juvenile Diabetes Community: http://www.vorts.com/juvenile_diabetes/

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  8. Happy 3rd Birthday gorgeous boy! Hope you have a very special day and many more to come. Lots and lots of love Aunty Krystal, Uncle Brenden, Chase and Jackson xxxooo

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  9. I Like this article vary much.its vary appreciabe.Diabetes is a vary common health problem for every family. Healthgenie provides full range of diabetes care products online,healthgenie provides wide range of Accu Chek products accu chek lancets ,active meter, Blood Glucose Meters,test strips.

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  10. Have been away from the blogosphere for a while, and the picture of the ragged chicken is one of the first things I saw - it does sum things up! The first year is insane - we're 3 years in, and it has gotten better, though nighttimes are always a bit unnerving. You have one tough little man.

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  11. My fiance was diagnosed with type 1 diabetics when he was a year old. His mother had to be a brave strong woman and took care of him. Today, he's 33 years old and still has low blood sugar problems. There have been mornings when I've woken up next to him and he has low blood sugar. Just last week he had an episode that drastically changed his behavior unlike before. Usually I could feed him honey but that morning he refused it so I called 911. They didn't do anything other than check his sugar and it was 42. So the paramedics stuck around until it got over 80 then left. So like you, I check on him to make sure everything's ok and there's no cold sweat. I wish there was an easier way to manage his diabetics.

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  12. im not sure how i came across your blog right now, but let me just thank you. my son was diagnosed at 19 months. this month is his 1 year anniversary. we have most certainly come a long way and although i feel overwhelmed and consumed periodically throughout the day, i usually feel "okay" with it all. more of an "ive accepted it now lets move forward" sort of thing. reading some of your posts have brought back many emotions i havent had in some time now re: diabetes. i have literally laughed and also cried. how refreshing to hear some one else's words so appropriately express the feelings of my heart. my heart ached for you and your son as i read some experiences. i pitied you, and then realized i was only piting myself. i pray for a cure everyday. and too pray for the safety of my son. thank you for publicly sharing some of your thoughts. it was nice to feel some emotion again.

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  13. Hi Becky, thanks for your note, I appreciate hearing from you. Sorry to hear of your sons dx, and so young :( Its hard work for sure and we just have to take it day by day. Having done your first year, the steepest learning curve by far it does get better. I relate to what you are saying completely. I can cry for other peoples type 1 kids but not my own - for him I have to be strong. Whatever we have to do to cope. BIG HUGS to your and your son xx. Jules.

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  14. My daughter was diagnosed at 17 months and its been three years already. It's very scary but what we have to remember is that it could always be worse and we are lucky that our children get to come home with us after they are done in the hospital when they are first diagnosed. My daughter has had 2 dangerous lows (bs-24) but I was able to get her to drink juice and have never had to give her glucagon. There are some nights I get up every hour to test her to make sure she's ok. I barely get sleep but since her health is of the utmost importance, I do what I have to.

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  15. Hi anon, I agree, we are fortunate to have our kids. absolutely blessed to have been dx quickly enuf, and have insulin to keep them alive. its hard without help but I do what I have to also to keep him safe even if it means running on no sleep! We are staring down 3 years now, its definitely time I wouldn't want to do again. we are in a much better place now. love to you andyour daughter.

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  16. I haven't been blogging (or reading them much) but just had a little catch-up on yours today.
    "Lord, please never let me let him down" is my prayer too. Loved this. My little man is not so little now. He's is nearly 13. He grew 14 centimetres last year. Nearly 3 years since diagnosis and yes, I do think it gets easier, but the worry never goes away. All the best Mel (www.tuataragirl.blogspot.com

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  17. Wow - I don't know how I came across your blog. My little guy is 15 months old, diagnosed at 13 months.. so we are brand new at this. Thankfully I am a registered nurse (8 months in) but it doesn't make it any easier when it is your baby to care for. The picture of the chicken is EXACTLY what I feel like at this moment. His sugars have gone soo low at night and I am afraid that if we sleep through an alarm, we will wake to him in a coma. He is doing great - resilient as can be, definitely handling everything better than I am most days. I feel like I am constantly on alert and it makes me feel better that there are more awesomely brave parents out there going through the same things as we are. Your comment about the nighttime made me cry. That sums up what I feel perfectly. Thank you for keeping this blog and for expressing yourself.

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