The Tip of The Iceberg

We recently celebrated Sugarboy’s 6th diaversary (anniversary of the day he was diagnosed with diabetes).

Why do we celebrate such a thing?

We celebrate life.

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Sugarboy was in DKA at diagnosis (diabetes ketoacidosis – very serious and dangerous – life threatening actually).  We spent 5 nights in the hospital getting Sugarboy better and learning how to keep him alive.

I didn’t want to leave the hospital. I felt safe in the hospital. Nurses and doctors where just steps away if something went wrong. I didn’t feel like I could do all that needed to be done to keep my boy alive. They made us leave anyway.

Those days in the hospital; learning how to fill a syringe, prick his finger, calculate insulin ratios – that was just the tip of the iceberg in the diabetes world. I didn’t realize that. To me that block of ice was huge and threatening and had sharp edges. I hadn’t yet begun to see beneath the tip or to understand the depth in which diabetes reaches.

I was focused on the physical pain I was going to have to inflict on my 2-year-old son multiple times a day. I focused on how diabetes wasn’t going to go away anytime soon. I was thinking about how I would need to restrict his diet and limit sweets.  Those things are above the water – it’s what we see at first and they are scary by themselves.

The days following the hospital Sugarboy got used to the shots and the finger pokes. We learned how to count carbs and calculate insulin. We didn’t miss random cookies. My boy still played soccer, went to mothers-day-out, played with friends and begged to stay up late. I relaxed a little. That floating ice above the water seemed easier to navigate. Still I didn’t see beneath the water.

In the following weeks I started reading more about diabetes. I read an assortment of books and websites. Many focused on healthy diets and exercise. A few discussed issues that teens have with diabetes. Some focused on the complications that can be caused by diabetes. Learning about the complications in my very sleep deprived state is what pushed me over the side of the iceberg and gave me a glimpse of the dangers that hid beneath the water.

That’s when I realized that the shots and finger sticks are the smallest part of diabetes – they are the logistics of diabetes. The larger parts (the ice beneath the water) are the emotional, social, and physical toll imposed by diabetes.

Sugarboy has now spent 3/4 of his life with diabetes. He doesn’t remember a life without diabetes. I do though. He doesn’t remember – maybe that is a “good” thing? Maybe because he doesn’t remember he doesn’t resent diabetes as much as my daughter who was diagnosed at age 9. Sugarboy doesn’t get angry at diabetes often – maybe twice a year he will voice anger about diabetes. Sweetstuff gets angry often – she is angry more than she is not – she is also 13 and her hair makes her angry daily. (not trying to dismiss the emotional toll of diabetes – just saying everything makes my 13 year old angry)

Yet I fear the storm is coming. I fear that as Sugarboy grows and becomes an adolescent he too will begin to resent all that diabetes is, does, requires.

For now – we make cupcakes to celebrate life. We congratulate him for his courage. We celebrate that he is with us. Too many kids are lost to a missed diagnosis. Each year on his diaversary (and many days in between) I tell him I’m proud of him and I tell him we fight for a cure that we will see in his lifetime – then later when I’m in the shower, or on a walk, or doing dishes late at night while I wait on a high or low blood sugar to return to a safe range – I cry. I curse diabetes and other things. My chest aches because my heart breaks.

It’s not the tip of the iceberg that can sink us. It’s the hidden monster beneath that can rip us apart and tear holes in our souls if we don’t acknowledge that it’s there.

I see you diabetes. I recognize your power, your depth, your sharp edges. I see you – and I raise you the love of a mom, the strength of a community, the power of knowledge.

 

The Unintentional Conversation

Today is Day 3 of the National Health Blog Post Month

The NHBPM prompts are great and I’m thankful for them but I had a untentional conversation today that I’d rather share.

Today my dear daughter was selling Girl Scout Fall Product (nuts and chocolate) outside the local grocery store. I’m sure y’all have seen the Girl scout tables in the winter with the cookies – well here in CA they do the same for fall product. Good times.

My daughter invited one of the passerby’s to purchase nuts or chocolate. The gentleman inquired if there was a low sugar or sugar-free version of chocolate. My daughter said “no sorry but we have nuts” The man replied “no – guess they (girl scouts?) don’t like diabetics. Then he walked away.

My daughter and her fellow girl scout friend (who also walked with us for the JDRF Walk To Cure Diabetes) looked shocked and my daughter a little hurt.

The man had walked over to a group of tables to enjoy his Starbucks. I told the other girl scout mom I was going to go tell him what he had said was hurtful to my daughter. The other mom suggested I not and I considered not walking over but seeing my daughters face pushed me forward.

I approached the man who was reading something on his phone. I apologized that the Girl Scouts do not offer a sugar-free chocolate product. The man waived that away and simply said “Its normal – hard to find a low sugar or sugar-free desert.”

I went on to tell him that the young lady who invited him to purchase fall products is my daughter and has diabetes. He shook his head and said “I shouldn’t have said that. It wasn’t necessary and the girls don’t need to hear it. I’m sorry”.

I was pleased. He got it. Then he went on.

My son was diagnosed with Type 1 when he was 18, he is 31 now. He uses an insulin pump. I’m not taking shots. I try my best with diet, exercise and oral meds, been 5 – wait 9 years now – wow time flies.”

Huh – that surprised me. Here I had pegged him as an angry recently diagnosed person with Type 2. He does have type 2 but I doubt all his frustration comes from his diagnosis. He has spent over a decade hating diabetes – not for him but for his son.

Yes I skipped the NHBPM prompt – but I just thought Id share a conversation that I hadn’t expected. We talked for a good 20 minutes about complications, which type is ‘worse’, what foods cause his sugars to spike more than others (rice btw), how many times he tests a day, and how his son struggled for a good deal of time managing his diabetes prior to getting a pump.

I fully expected an argument when I decided to approach the man. I was ready to berate him for his insensitivity. Turns out I received a lesson about making assumptions.

Post Script –

Have you done the big blue test today? Learn about it now HERE.

 

Leg Transplant??

You’re Gonna Give Me Your Leg?

Sweetstuff has had some really cruddy numbers the last few days. Pump is working fine – it’s her brain that is malfunctioning. In the last 72 hours Sweetstuff has forgotten to bolus for a meal 3 times resulting in numbers in the “Hi” range. She forgot twice to put her pump back on after a shower resulting in numbers in the 400’s.

Tonight at bedtime she was 403 – which resulted in a WTH (heck – she was kind enough to use the G rating) comment. (This was one of the times she had forgotten to put her pump back on after a shower 2 hours earlier).

At this point she said “I’m just so overwhelmed lately”

I told her that it is a stressful time for our family with the impending move to a new state. I reminded her that it is the end of the school year and she has had some fairly large projects to work on and also that her big solo at the choir concert is tomorrow. It’s a lot to handle for a 12 year old.

She replied  “If I am making this many mistakes now how will I manage when I move out, go to college, get a job, and have kids?”

I told her about so many of my DOC (diabetes online community) friends that are living well with Diabetes – most have full-time jobs, are parents, successfully navigated college and have no complications.

She replied again “But what if I keep making mistakes – and my leg falls off”

I told her first that everyone forgets things, mistakes can be fixed, that the fact that she cares enough to correct her mistakes means she is doing things right. I also told her that her leg wouldn’t fall off – it would have to be removed. (I said the last part with a sarcastic smile of course) Then I added “and I will always be around.”

To which she replied “You would give me your leg?” (also with a sarcastic smile)

I love my sweetstuff – she will be just fine.
Tomorrow she will sing “A World of My Own” from Alice In Wonderland
She has also decided that from henceforth her pump shall be called Alice