Our long story shortened...

20 years of being in love

14 years of marital bliss

5 years of infertility

9 months of a high risk pregnancy

2 perfect boys (at the same time)

1 heart failure

1 type 1 diabetes diagnosis

1 happy life

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I am a stay at home mom who is raising twins. One of my guys has type 1 diabetes and one does not. I am writing this blog to unite type 1 parents or twin parents. Comment on my posts or in the "what's your high?" and "what's your low?" to join the community of parents just trying to do the best we can!

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7/5/12

23.





                                                                  

"Mom, I feel low"

"Ok, honey, hang on. Michael, can you please go get his monitor?" Michael trots fifty feet up the hill to my in-laws house, while my sister-in-law and I talk about whatever we were talking about. Rocco continues to stand next to a pond trying to capture a frog in his net.

"Mom, I can't really focus right now"

My smart sister-in law has the where with all to say, "Well, let's get you away from the water then," She grabs him and pulls him up over a little fence that protects kids from the pond and leads him close to me. "Thanks", I say, as I hold her baby, my super cute newest nephew. Michael returns with the blood sugar monitor. Checks him. Beeeeeppp. The machine sounds a low sugar warning. Then Michael hollers"SHAR! He's at 23!!!"

At this point Michael grabs his hand and I cry "Carry him!" I hand the baby back to my sister-in-law and say to her, calmly, "Yeah, he’s conscious, but 23 is pretty much the lowest he’s ever been. His ideal number is 123" as I run behind Rocco and Michael to the house. I am not sure if I said this to her or to myself. Talking myself into grasping the severity of the situation as everything around becomes slow motion.

We give him grape juice, which is super-high in carbs. He asks for candy. My father-in-law gives him a piece of chocolate. He asks for a Healthy Choice fudgesicle and we give him one. Of course, his brother and his cousins are now all requesting fudgesicles.  Sure. I calmly sit next to Rocco touching his hair and looking him over. Oddly enough, I’m usually calm in a crisis. My usually swirly brain has an uncanny ability to focus into calm rational thoughts. These thoughts are then executed into even calmer directions. The time when I panic, is after. Way after.

We wait ten minutes as several of us sit with him and check him out. Then we check him again, and his blood sugar is now 44. Oh thank God, he's on his way back. He begs me for a hot dog, saying that he’s starving and can't wait until they are cooked on the grill. He wants to eat one immediately, frozen and starts to cry and yell at me, asking me why I am not getting up to get him one. Seeing him irrational and panicked starts to scare me. "Stay calm Shari. This will be over soon", I say in my head. We wait ten more minutes and his blood sugar is now 106. He is back. Now we have to stop with the sugary foods. When his blood sugar is rising this fast you have to be careful not to send him straight into the 300's or higher. We wait ten more minutes. He and I just sit together, not speaking, just sitting. The rest of the family mills around acting normal, but I can tell we are all somewhat freaked out. At one point I hear Zeke tell his four year old nephew, "He has diabetes and his blood sugar is 23."

The rest of the day he stays in the low 100’s. Thank God! I hold it all in until we get home and I finally close the door to their room after kissing them good night, I see Michael in the hallway and fall into his arms and start to sob. He is surprised by the tears but also understands. He says, "Shar, we are doing the best we can and sometimes there are going to be very scary lows. We just have to learn from them".

My reasonable head understands that this is just one blood sugar. But, my PollyAnna side just got slapped in the face with reality. 

The reason he got so low is sort of a long story but I will try to shorten it.

Rocco had spent the past week in 85-9degree heat at diabetes camp, eating a lot of high-fatprocessed food snacksI will write another post about camp soon. On top of that, the kids spent a lot of time in the lake or squirting each other with water guns, so they all took off their insulin pumps at these timesThe change in diet and activities can lead to high blood sugars. And with Rocco, they did. His blood sugars ran from 70 to 450 during the week. Many more 200’s and 300s than we like to see. So we had been giving him extra insulin to compensate for these highs. We had changed the infusion sets for his pump four times that week, concerned that blockages might be causing the highs. We just could never seem to get his blood sugar down and stable.

So, when he was 275 before we left for my in-laws and 369 halfway through the hour-long drive over, we decided to change his infusion set during the drive. By the time we stopped to do this, he was at 419. Ugh! We gave him a dose of insulin including a little extra. Just trying to get the level down, wishing for some readings in the 100’s. Be careful what you wish for.  We did get the level down all right, all the way to 23 a couple hours later!!

So flash forward to me sobbing into my husband's chest. Total panic had finally set in, with thoughts such as:

  • How can I trust what I know now, I was confident in caring for him, now how do I trust a gut that has betrayed me?
  • How could I have looked at my little man and NOT known he was in trouble?
  • With this failure, how can I trust everything I have taught myself about diabetes the past five years?
  • How can I let him out of my sight going forward?
  • How is he going to go to college on his own?
  • How can I ever let him go to bounce-house birthday party and just drop him off?
  • How am I going to accomplish the required vigilance over him without cheating his brother Zeke out of the attention he deserves?
  • How can I watch him catching frogs and not wonder, are you at 23 right now?
  • How will I ever forgive myself for getting him to a 23?
  • How will I ever forget the number 23?


I have said it before, I usually am pretty PollyAnna about things in my life. I usually live in the "That can't happen to us" zone. But, I have to tell you, this did it for me. This made my knees buckle. This has opened my eyes. This 23 blood sugar, so close to 0 blood sugar, or a coma, has shaken me to the core.

No more acting like our situation is normal. As normal as everyone around me wants it to be. People don't like women to be over dramatic. So I usually don't act that way. But, I don't really care about the people that judge me that way.

Also, if you want to judge me for getting my child to a 23, then you can come here tomorrow morning, wake him up, check his blood sugar and then live it for just one day.

If you don't judge me, thank you. But, no worries, because I judge myself. So you are off the hook. My child could have passed out into a coma today, maybe without coming out of it. My child that I tried so hard and so long to create could have been gone. By me. Not a car driving down the street. Not a head injury after a fall. But by me. His mother that would kill herself before letting anything bad happen to either one of her bear cubs. By me. What a terrible shitty disease. There I said it. I probably won't say it again, because it really does no good and I don't like Rocco or me to be victims. But, for once and for all, I will just say it!  I hate this stupid, shitty f*%ing disease! I hate this situation and I don’t think it should be allowed! I don't want to do this anymore. I can't do it anymore. No. I am done. He is done because I say so. Done.

I just want this to be over. I am tired. I am shaken. I am weary. I am done. I am exhausted. I can't imagine how he feels. My poor precious angel.

But, there's no way out...










14 comments:

Conny Coon said...

Started the day with a decent cry thanks to this. We're just several months in with my 11 year old, and our lowest has been 47 (when I wasn't home with her, of course). Much mommy guilt there. I agree wholeheartedly. This effing disease sucks for everyone ... One blood sugar at a time is the only way to handle it, I've learned. Even though that doesn't make it any easier on anyone. Thanks for sharing the ups and downs, the highs and lows. Although I wish there weren't so many of us, there's definitely strength in numbers. And we all know "numbers" more than any of us would like.

Kristin Drummelsmith said...

Oh Shari - this just is heartbreaking. I remember in the hospital hearing about counting carbs and thinking that this would be no problem. But what they don't tell you is that in the diabetes world, 1 + 1 does not always equal 2. Savannah started the summer low, low, low and now she is consistently running in the 300's for the past few days. Why? WHO KNOWS!! I am just starting to get used to this - used to being puzzled by her readings. This is just the nature of the disease.

Missy's Twins said...

Shari-I am a type 1 diabetic, have been for 32 years since I was 13, and you did everything correct! It is just a crappy disease to have because you never know when you are going to be low one minute, high the next, and in range on any given moment of your life. I have 10 year old twin boys who both have a 1 in 4 chance of developing type 1 diabetes, they were in a study at birth and that is the number that came back that scares me every single time I start to think about it! I am so glad I found your blog and I intend to follow it closely. If you ever have any questions just let me know I have been doing this for awhile, made it through adolescence/young adulthood sucessfully (well some minor scares here and there), had two beautiful boys when I was told not to even think about getting pregnant and I am looking towards the future to stay healthy and be around for a long time!! Hang in there and keep up the great work!
-Melissa

Melissa W said...

I "heart" you. I do judge you and find you to be guilty of having an amazingly big heart, being a ridiculously wonderful mother, and a having wicked keen sense of what your children need. I've said it before, it's a bum f@%*&ng deal and stinks to high hell, no doubt about that. But, thankfully, Rocco has you because your a mother like no other and everyday you are setting him up for success. I have never seen a kid so aware of himself and have such self control. I'll never forget the 4 pieces of candy (m&m's or skittles, I think) that he held in his pocket - just in case.

Cynny Jones said...

Boy do I know how you feel. I am such a diligent mom when it comes to my son's diabetes and anytime something slips past me; leaving the house with an empty container of strips; running errands without stopping for lunch; leaving every glucose tab, juice box and speck of food in my OTHER knapsack; I hate myself.

Jenny said...

Hey! I stumbled upon your blog totally by accident, but you pulled me in and I ended up reading your whole about us, along with this and some other posts. Thought I should tell you I really enjoyed it and admire what you're doing for your family!

Shari said...

Conny, thanks for your comments and support! One blood sugar at a time sounds like a nice way for me to remind myself not to get overwhelmed. Thanks so much for reading and for commenting here and on Facebook! I do feel like we have a tribe out there! I I hope your daughter has a good day today! Therefore, you too!

Shari said...

Hi Kristin, thanks for commenting! I feel the same way lately. I think there is a point in this disease where you almost get cocky and think " I got this" , but then I think this is like trying to catch a fish in the ocean in a rainstorm. You just never know where that perfect blood sugar number will be. It breaks my heart for all of our little ones. It's just such a long vigilant road. Thanks again for reading and being so supportive to us!

Shari said...

Missy, ok now you have me crying! Your story is super inspiring! Twin pregnancy isn't easy I can't imagine doing it with diabetes. Thank you for your offer of letting me contact you. That made me cry;) because I actually do have a lot of questions about Rocco's future. Would you mind e-mailing me from the contact us part of the blog? It's on the right hand side of the home page. I would live to chat "off-line". Thanks for reading and following us!

Shari said...

You are one of the blessings in my life that has been there since the beginning and has seen or been cried on for almost every high and every low. You are a treasure to me! Thanks Lissa!

Shari said...

Cynny, you crack me up! Thanks for admitting your faults also in solidarity! I appreciate the support! You are a great mom and your super cute son is lucky to have you! Go D moms!

Shari said...

Jenny, I am so glad we found each other! Thank you so much for extending your nice words on a comment. I will follow your blog called Vegetarian Hates Vegetables too! Thanks for reading.

Anonymous said...

Hmmm, that story is very scary indeed. Just shows that diabetics and their families need to be very educated which it seems like your family is.

Nothing is as scary as coming home and seeing a family member unconscious on the ground which happened to me when my father passed out from too low blood sugar.

Keep up the good work !

April J. said...

I was looking for pictures for my son's project on Type 1 Diabetes and came across your blog. I see this was posted a while ago. December 22 2011, my baby at the age of 2 soon to be three was diagnosed. It was a rough transition emotionally. Then in April of 2012 my baby girl was diagnosed just shy of her 5th birthday. It has been a roller coaster. I just wanted to let you know I get it! Thank you for sharing your thoughts and experiences. It is so real! I can't tell you while reading this how many times I heard my own voice saying tall those same things. Thank you!