How to build back up - Creating a new "norm"....


If you've walked this journey with us, you know by now I'm not a fan of Type 1 Diabetes. You know I cry in my pantry on hard days, call my daughter's Dexcom her brave patch & constantly promise my son he does not have to ever have needles like Pip. 



And those that know me closely, know I am really struggling. I'll have a few good days, where Pip's levels seem stable, her energy is good & where I finally feel I'm understanding carb counting & insulin corrections & have prepped everyone who is in her life about the Glucagon injection. And then WHAM, they'll be days that hit me in the face with the stress & heaviness of this disease...

 

Last night my husband and I had to change Pip's Dexcom. Youtube inserting a Dexcom, gasp in horror, pour a drink and chug it for us. Doing this is ABSOLUTELY horrible but also ABSOLUTELY necessary. Because at this point Pip can't express verbally when she is feeling her blood sugar drop & if it's in the middle of the night when we can't see physical signs, the Dexcom has an alarm that lets us know. Pip needs it. I need it. It could be the matter of life and death.



So despite, the nightmare to insert, it is worth it. Not only has it been so helpful at school, it is allowing me to sleep a wee bit in the night. And I say a wee bit, because it's so staggered. Little pockets of sleep, deliriously painted with vivid wacked out dreams. I've seriously never know sleep deprivation like I have now - This is worse then when Pip was in heart failure and I had to pump every 2-3 hours for months around the clock. I mean, not only am I still nursing Theo & rocking him whenever he wakes {I absolutely dare someone to leave a comment about how he is 10 months old and shouldn't be waking in the night - I won't want to punch you in the neck or anything!} but I'm still despite the Dexcom, checking in on Pip all the time. 


I've even gotten to the point where I include Noal in the mix everytime & he knows it. A few nights ago him & Deacon seemed to be sleeping so I went in to kiss his forehead. Just as I was about to plant my smackers down, his eyes popped open and he squealed "Gotcha momma". Was very horror movie-ish until his little boy giggles stopped the wee bit of pee that was thinking of coming out.


Point is we are all trying to make this our new "norm", but Sweet Jesus, I wish we didn't have to. But like anything Pip has been through, she constantly is showing me over & over what a warrior she is. Last night as I rocked her to sleep, I couldn't help the tears from falling. It's almost our thing now, she holds me while I have a good cry. Every couple of minutes she would pop up, hold my face in her two little hands, kiss my nose, whisper & sign "love you" & then honk my nose three times and say "beep beep" to make me giggle through the tears. It's like she knows I need these moments to rawly {is that a word? It should be} lay it out & as I do, we build back up strength together. 



And speaking of strength - This week our "Fight the Good Fight" shirts are being printed & once mailed I can't wait to see #PipsArmy rise together & lift up my little girl. I can't wait to see y'all wearing them and the doses of light it will bring to my family, the awareness it will inspire & hopefully the fight for a cure it will embark. 

For more info about #PipsArmy shirts see here:

To pre-order your #PipsArmy "Fight the Good Fight" shirt click HERE
To pre-order your Calendar & shirt combo click HERE

2 comments:

  1. Bless your family. ��

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  2. Diabetes is really hard to explain to people who don't live it. My daughter was diagnosed seven years ago right after she turned three and three years after that she was diagnosed with celiac disease. My daughter has been using a Dexcom for six years. It's an amazing tool in diabetes management but you're so right in that it is awful to insert. I'm wondering if you are using Emla (lidocaine) cream? We call it "magic cream" over here. A pea size amount covered with a piece of tegaderm for 30 to 40 minutes then wiped clean with a tissue and then an alcohol swab really is magic. We use it for every insertion. The doctors tend to minimize how much it hurts to put in a sensor but I don't care...I ask for the prescription and they give it to me. Diabetes is such a pain (literally and figuratively) that if I can do something to minimize my daughters pain then I will do it. Hang in there. It WILL get easier because you will get better at managing it...and in the meantime a good cry does wonders. I cried everyday for the first three months at least!

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