Hanging By A Moment

I grew up Lutheran. Well I have parents that were Lutheran. Although my mom was Catholic and I was baptized Catholic but then my mom converted to Lutheran.

On Sundays when it suited my dad we went to church. I attended catechism classes at a Lutheran church and was confirmed in the church. Mostly during classes my BFF and I would scribble notes. I remember one note that we scribbled was a picture of a thumb with a red circle with a line through it – we called it WAT – Woman Against Thumbs. I believe it was during a lesson about how a woman should serve her husband. Yup I had a little feminism in me back then – ok still do.

When I was 16 I didn’t want to go to church on Easter Sunday. My mom didn’t have to go. Ok she had worked until 2:30am and wasn’t feeling good, but since she didn’t have to go I didn’t want to go. After a screaming match with my dad where he “gave up” I decided I would go screw around with friends only he had removed the spark plugs from my car. No church – no friends.

Sometimes my folks would let my older sister and I skip early service if we agreed to go to late service. We would get into her car to go, stop by the church and pick up the church program then go out for breakfast. We were such little sinners.

In college I proclaimed I was an agnostic. I barely know what the heck that means now let alone then but all my college friends were the same so I assimilated.

While in basic training in the United States Air Force I attended church service. It was a nondenominational service. They played great music. It was two hours a week where the TIs (Training Instructors – think drill sergeant) couldn’t yell at us or pop us in the forehead with the brim of their TI hat. Once during service the pastor asked those who felt the spirit of the Lord to stand and at that moment I did so I stood. (Although I may have just been hungry and thus light-headed). Still in letters home to extended family (aunts, uncles, grandparents) I wrote about a new-found love for the Lord. My mom told me some of them were afraid I’d joined a cult.

After basic training I attended technical training. I was learning to be a contracting agent for the USAF. Basically learning how to spend tax dollars. It was a lot to study and thus church on Sundays didn’t continue – also church got in the way of hanging out with other airman and watching TV.

Despite my requests to be stationed abroad – Germany, Italy, and Spain I was assigned to Lackland Air Force Base – the same base I completed Basic Training and Technical Training. That worked out well though since I met my dear husband in the contracting office.

We were young – early 20’s. We fell in love and were married. My folks pastor at the Lutheran church where they lived agreed to marry us despite the fact my husband was not Lutheran and didn’t practice any religion. (I think my parents might have lied to the pastor but I went along and so did Chad.)

We didn’t attend church at all during our four years in the service. Our first child was born and we took her back to WI to be baptized in the Lutheran church. It’s what Lutheran’s do – baptize – so we did. We both finished our 4 years in the service and became civilians again. Chad started a new job that allowed me to stay home with our daughter. When she was nearly two I wanted her to be in a mothers-day-out type program to be around other kids and I wanted to work a little. Thus I became a mother’s-day-out teacher in a Christian mothers-day-out school at a Lutheran church. Being around the church and teaching Christian lessons in my class drew me closer to the Lord once again. I got more involved with the church, attended service occasionally and my spirituality grew.

Our second child was born and we baptized him in the Lutheran church I worked at and had joined. I had to stop working while he was an infant although I continued to volunteer in the nursery on Sundays, teach music to the students at the school and attend church. At some point, and I can’t remember exactly why but I think it had something to do with the pastor retiring and me not liking the new paster, I switched Lutheran churches. Our third child was born and we baptized him in the new church. The pastor of the new church seriously ticked me off the day of Sugarboys baptism so we stopped going.

It would be two more years before we stepped into a church again and it was because I wanted to teach again. I was offered a job at a Lutheran Pre-school and I accepted. Yes – yet another Lutheran church – there was something comforting in knowing I could attend church then go out for beers and wings with the pastor and congregation members after late service.

All was going well. I started attending service again, began teaching Sunday school and felt my spirituality returning although watered down.

Then Sugarboy was diagnosed with diabetes. Oh that day sucked. It was a Wednesday. After we checked into the hospital with my tiny little 2-year-old I had to go collect my older kids from a neighbors. I hadn’t cried in the hospital. I didn’t want my baby to see me cry. But after I left the room and got in my van all bets were off. I sobbed. I wailed. I asked WHY WHY WHY. It was rush hour on I-35 in Austin, TX. So many cars. I couldn’t see straight because of the tears. I had to pull onto the left shoulder of the highway. I sat there slamming my fist into the steering wheel. Screaming and cursing. I knew I had to get it together. I had to get my older kids, feed them dinner, explain what was happening, take them to see their brother.

I turned the radio on in my van. A song had just begun.

http://www.youtube.com/watch?v=a4_woZ-LUvM

I hadn’t heard it before. I listened for a second. Then I felt something I had never felt. It was a whoosh feeling as if something had entered my body (picture some movie where a spirit/ghost takes over a body). The tears stopped. The shaking stopped. I could see – I mean SEE. I felt strong. I felt angry but with purpose like I was suiting up for a fight and I had an awesome coach whispering strength in my ears and I was pumped.

Over the next couple years the Lord and I became closer. I was reading the Bible and was very much involved with the church. It felt good. It felt right. It gave me the strength that I needed to be what I needed to be for me and for my kids.

Alas, the pastor of the church retired. A new pastor was called upon. He was fun, made jokes, and things went on. Although unrest with the congregation grew. Changes the new pastor was making with the school and church were not fully supported by many of us. I still had my faith but I wasn’t sure the new direction of the church was going to suit me and some of the things being said and done to co-workers was challenging my commitment to that church.

Then my daughter was diagnosed. With a faith already being challenged I was weak and this time I got angry. I got angry at God. I’ve been angry for nearly 4 years now. I quit teaching at the church school at the end of the school year. I stopped attending church. I put up my Bible. I gave God the finger basically.

I never stopped believing – you can’t be as angry as I’ve been at someone you don’t believe in.

The thing is – I’m tired of being angry.

I desire faith.

I long for and miss the feeling of a living spirit living within me.

I miss the strength I had felt after Sugarboy’s diagnosis.

I miss hearing the words of songs I love. I still listen to my playlist titled “moms spiritual music”. I mean it’s good music. Only over the last 4 years I would find myself listening to pop Christian music while rolling my eyes at the same time.

I still pray. Only I never pray for myself. I pray for others.

I really am just tired of being angry. I’m open to suggestions on how to stop being angry. I’m open to ideas on how I can forgive God because it has always been my understanding that He either makes something happen or allows it to happen. There is no middle ground. He is all-knowing, all-powerful, he is ALL. So why does he let so much ugly happen to the children, to us?

Yesterday I knew it was going to rain. My daughter knew it was going to rain. She didn’t take her umbrella. As it poured I considered taking her an umbrella. Her school doesn’t have a hallways – the students have to walk outside to switch classes. I had her umbrella in my hand at one point. I had to will myself not to take her an umbrella because I can’t always protect her from bad decisions or bad planning. Is it like that? Is God just not doing the helicopter parenting thing? Because that would suck. Diabetes isn’t because of a bad decision or poor planning.

 

I’ve rambled for a great deal of time. If you’ve read this whole post you are awesome (or have entirely too much time on your hands). This post was for me. Writing sometimes helps me recognize actions I need to take. I could use a map though. I tried putting God into map quest but it came back with – No results for “god”.

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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.

 

Did You Dose?

So Sugarboy took a shower before school Friday. Then he came down to eat breakfast. He tested prior to the shower and was high and he corrected by dosing insulin via his pump. Which (and he would be totally ticked at me for sharing this – but alas doesn’t read my blog) was why he needed a shower since he had an accident in his bed. It happens sometimes when he goes high at night. I thought he was good to go Thursday night when I went to bed at midnight with him at 178 with 0.6 units of insulin still working in his body. Unfortunately he wasn’t so he went high and thus the accident.

He finished his shower. Got dressed and came down to eat breakfast. He ate breakfast and I asked him to dose. He used his meter to dose his meal insulin (Animas Ping pump can bolus via his Ping meter). He ran off to brush teeth and hair. He had time to spare so he and his brother watched some TV while waiting for me to take them to school.

I stopped in the boys bathroom to turn off the light (they never turn off lights).

From the bathroom I yelled to Sugarboy: “Did you dose for breakfast?”

To which he said “yes”.

I said “no you didn’t.”

He said “yes I did”

I went downstairs, stood in front of him and said: “No, you didn’t.”

Without looking up he said “yes I did”

“no, you didn’t because I have your pump.”

At that point he patted around his waist, looked up and saw me holding his pump.

He had dosed using his Animas Ping meter which sent the bolus information to his pump to deliver the insulin. The pump and meter heard each other and the pump followed the instructions the meter sent remotely from another floor. Basically the pump dosed the bathroom counter.

Marcus reconnected and used the “fill canula” option to dose his insulin. He did not use the regular dosing features to dose since his pump believed he had already dosed. Dosing a second time would lead the pump to believe he had more insulin in his system than he did.

We love our Animas pumps but like any technology things can go screwy. Sometimes (although rare) the meter and pump can be less than 2 feet from each other and the meter will tell us it can’t communicate with the pump. Then there are these times (even more rare) that the meter and pump will talk to each other from an entire floor away.

From what I have heard the Animas Vibe – does not have the remote bolus feature. It had to be removed to allow for the pump to act as the Dexcom G4 receiver. Since the Vibe is not available in the US yet, and the Dexcom G4 is not approved by the FDA for people under 17 (thus not covered by our insurance) we don’t have to make any decisions regarding leaving the Ping option. But it will be a tough call once all the pieces fall together with the FDA and the Vibe. We love the remote bolus feature. Especially on nights where I need to actually use the pump to set temp basals while the kids sleep. (Remote cannot be used to change pump settings)

I do have a couple of suggestions for Animas though:

1 – provide a blood sugar check reminder alarm that can be set to alert user two hours after each meal or correction bolus.

2 – allow for multiple low cartridge alarms (blogged about that previously here)

I am grateful for insulin pumps – they make managing my kids diabetes much easier. I look forward to getting my kids the Dexcom G4 Continuous Glucose Monitors when the FDA approves for under 17 – when we test drove the Dex G4 it was the best diabetes week ever for me and both my kids. (Wish I could tell you more about our G4 experience but as participants in the G4 study to get FDA approval we was asked not to specifically blog about it)

I do want to say that I am not a pump snob. I believe that all the current insulin pumps available offer nearly the same features and get the job done. It is really just a user preference. Each pump available has slightly different features that may appeal to different families.

If you are considering an insulin pump I suggest discussing it with your doctor’s office, researching each pump online, calling the various manufactures to talk to experts, asking for opinions on twitter from people who use different pumps, consider your or your child’s life style, consider how much insulin you or your child uses in a three-day period (Animas holds 200 units – other pumps hold up to 300 units), and lastly although least important in my opinion – color options.

Here are some links to the pumps currently available in the USA.

Animas

Medtronic

T:Slim

OmniPod 

Happy Pumping all.

 

Spare A Rose

Valentines Day is past. Candy is on clearance (now is a good time to stock up for lows and the inevitable emotional eating of chocolate). Hallmark is clearing out the shelves to make way for St. Patrick’s Day, Easter and Mothers Day. By Sunday Valentines Day will be a warm memory for many. But today and tomorrow there is still an initiative happening that can make everyday a day of love and life for children around the globe with diabetes.

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The goal – provide life for a child with diabetes via the Life For a child program through International Diabetes Federation. The initiative is Spare A Rose Save A Child. I will not be able to do the program justice as well as Kerri from Six Until Me has, thus please check out her post (by clicking the Spare a Rose link above) and click the links in Kerri’s post to help make the program successful.

 

Diabetes In A Cup

First, let me apologize for not having blogged in some time. 2013 started off crazy busy, then there was the flu that took down my boys and me, followed by a week of catch up with life, followed by a great visit with friends from TX that included sneaker waves, boobie cars, and stupid dune yard people. I wish I could explain all of the shenanigans but some stuff is better left unexplained.

So what prompted a great need to blog today a week ago? Ignorance and Youth. (yes I started this a week ago – someone please stop the merry-go-round – I’m getting dizzy)

My dear daughter has guitar lessons each Thursday evening. Unfortunately those lessons take place during the same hour that DSMA hosts DSMA Live a Blog Talk Radio show with amazing guests and hosts. Sorry I digress – although you should totally check out the show which is on Thursdays at 8pm central time. You can find links on the DSMA webpage.

Ok so each Thursday while my daughter is in her lesson I step next door to the coffee shop (you know the one). Nearly every Thursday the same baristas are working. The manager has learned my name as well as  my favorite drink and she greets me kindly while pulling a venti cup for me while the younger gal rings up my order. Both are very friendly and my drink is always spot on delicious.

The young one – (oh to be young and have only 2 decades of footprints on the earth) is sweet and always smiling but alas she has no filter between her brain and her mouth. I’ve witnessed her naivety and her immaturity numerous times with regards to sharing too much personal information about her boyfriend and how painful her nose piercing was.

Her willingness to share a bit more than most, and her lack of awareness of the people (guests) around her never bothered me. I shrugged it off – she is young.

Until – last night while fixing up a number of blended mocha caramel frappa type drinks she refered to them as “diabetes in a cup”. She wasn’t talking to me but when I hear diabetes my ears perk up since it is a language I speak. I was reading an email while I waited for another employee to grind my coffee.  She was talking to the other employee. That employee didn’t hear her (or chose to ignore her) because she said it again – “Yup, Diabetes in a cup”. Of course at the second mention of it I inquired as to what she was referring. She explained she was making drinks for her boyfriend and his mom since it was the end of her shift and they requested she bring them drinks. She explained the ingredients and again said – “so its diabetes in a cup”. (Im not sure the coffee company would be excited about her renaming items on the menu.)

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HUH???

At this I said, “I have two kids with diabetes.”

Of course she stopped in her tracks and looked at me like a 2-year-old caught reaching into a candy jar. Then she opened and closed her mouth a couple of times, clearly unsure of what to say before she finally said “oh I’m sorry”.

I told her they have Type 1 diabetes which isn’t caused by eating too much sugar. Which she replied with, “so they were born with it.”

I explained – No, not born with it. They developed it years later at different ages. They didn’t get it from eating the wrong things though. It’s an autoimmune disease. They didn’t do anything wrong to get it and I assure you I wasn’t giving my 2-year-old mocha caramel frappas. There are different types of diabetes but you should also know that some people get Type 2 diabetes without being overweight or eating poorly.

Of course then she told me her grandpa has diabetes.

Ok – out of curiosity I asked “Which kind?”

She didn’t know. I then asked if her grandpa uses insulin.

She said, “Oh no, it’s not that bad.” (Yes I cringed)

Thus I said, “ok well if he doesn’t use insulin which is a medicine that allows people with type 1 and many with type 2 to stay alive than I would guess he has Type 2”

Her response – “I don’t think so, he’s not fat.”

(Didn’t I already cover the fact that a person doesn’t have to be overweight to have diabetes – was she not listening – I’m educating her – she should listen)

During our conversation she was kind, polite, respectful. She apologized numerous times. Although at this point she was glancing at the now melting frappas sitting in the drink holder waiting to be taken to others. I wanted to let her off the hook but needed her to understand her words affect others.

I told her (after her 5th apology) – “I’m not mad. I know you didn’t mean anything by what you said. But I hope you will consider what you say in the future. For all you know someone else overhearing your remarks could have diabetes or love someone with diabetes.”

At this point she thanked me. Im not sure exactly what for. Perhaps for not tattling to her manager. Perhaps for educating her. Perhaps for imparting a real world lesson about filtering ones thoughts before allowing them to escape via the mouth. Perhaps for just letting her off the hook and allowing her to leave.

I hope she heard listened to something of what I said. She is young and has so much to learn about – well everything. She is also kind and meant no harm and while I was angry about it initially I understand why she said what she said. The general public – (which until Feb 7th of 2007 included me) isn’t educated enough about diabetes. Commercials, adds, even crack pots like Dr. Oz don’t share facts effectively.

More education is needed about diabetes. Pediatric doctors and school health offices need posters hanging in the exam rooms that share the symptoms of Type 1 (this would save lives), primary care physicians need to provide nutritional counseling to adult patients (not after a person is found to be at risk but before) and Hollywood needs to learn about diabetes before including it in TV shows, reality shows, and movies. IMHO.