Vacationing with Diabetes

Having just returned from vacation, I would normally be sharing the highlights of the trip.  But I'll save that for other social media.  Here on the blog, I want to discuss the experience of taking Diabetes along with us on vacation.

You see, Diabetes doesn't just visit us occasionally, he barged into our lives 10 years ago and will not go away.  Our vacation prep started by trying to pack and tie up loose ends, but also included shelling out big bucks to make sure we had supplies to manage the kids' diabetes while on the road: extra insulin pods, extra insulin, syringes, test strips, glucagon shots, ketone strips, juice boxes and skittles and PB crackers for lows... 

Once all that was taken care of, we loaded up and started on our trip.  On the second day of the trip, we hit our first bump in the road: apparently, of all the extra insulin pods (Omnipods, the brand of pump we use), we apparently had over half of them from a bad lot which kept failing.  We usually change pods every three days.  Planning on being gone 9 days, that means, at minimum we needed 3 pods per kid, or 6 pods.  We packed 15.  By day two, we had already run through four pods because they kept failing, requiring us to discard the malfunctioning pods and apply new ones.

Traveling means long stretches of inactivity while riding in the car, coupled with boredom and a lack of healthy snack foods means we typically have higher BGs when on the road.  That is not usually a big deal, as we compensate for it with insulin intake and extra BG checks.  However, on this trip, we were fighting blood glucose lows instead of highs.  We went through lots of juice boxes and snacks and had to be extra vigilant for the first leg of our trip.

Sherly watches over the kids as they explore the Grand Canyon

After our first long day of travel, we spent day two at the Grand Canyon.  It was breathtaking.  It was amazing.  It was a place where memories were made.  Of course, diabetes wanted to make some memories, too.  After being cooped up in the car, the previous day, diabetes came with us as we hiked along the South Rim.  I wish we could have just enjoyed the view, but we had to stop every couple of hours and make sure the kids' BG were in range.  All in all, it wasn't such a bad BG day though.

Day three at the Hoover Dam was a blast, but keeping up with supplies and keeping the kids' kits stocked was a challenge, because we were burning through juice boxes.  Turns out, while Amelia, MH and I were touring the visitor's center, we got a call from our traveling companions that Ethan had left his glucometer in the car, which was parked in the parking structure.  Not an insurmountable challenge, but it highlights one of our challenges.  If he had left his wallet or his camera, we would have said something like, "Oh, well.  You need to learn to keep up with your things, mister."  But we cannot NOT go get his glucometer/controller for his pump.  I want to point out that 90% of the time, both kids are very responsible with keeping up with their kits, but those 10% when they forget, it is almost always inconvenient.

We drove from Hoover Dam to Las Vegas to have dinner on the strip and got to see some amazing things, like the fountain in front of the Bellagio and costumed vendors hawking photo opportunities for "tips" (I'm sorry, but the standard tip is $5, sir...)  On our hike up and down the Strip, MH had a low and we discovered that neither of them had restocked their kits with extra juice or crackers, but we managed (this will be a theme for the rest of the trip).

The next morning, we got up and made ready to travel to the end of route 66: The Santa Monica pier!  But before we left, we needed to change MH's pod and... you guessed it...old pod off and two pod failures from the bad lot means three more pods unusable.  We are now three days in and we've gone through half our pods.  The rest of the drive to the coast was scenic as outside we saw the environment change from desert to mountain to coastal plains.  We spent the rest of the day playing in the Pacific and on the pier.  It was fantastic. 

One of the side effects of traveling, we discovered, was the stress it adds to an already stressed out Diabetic Alert Dog.  Aside from having her routine interrupted and rollercoaster BGs with the kids, she didn't eat very well and developed an upset stomach.  Sherly started exhibiting signs of distress and we ended up having to take her to the vet the morning we were supposed to head to Disneyland.  We ended up letting her stay at the vet the first day, but it put us a couple of hours late.  Then, after only one ride, we stopped to check BG and Ethan's pod failed.  And then the spare he brought with him failed.  And MH didn't restock her kit from the day before so we had ZERO pods and ZERO extra supplies.  So, Ethan and I left the park and went back to the house where we were staying to gear up and restock.  That put us back to Disneyland at about 2pm, having only experienced the parking facility and Cars Land (in California Adventures).  The rest of the day went by without a significant incident until, at the end of the day, when we were watching the Wonderful World of Color, Ethan started crying.  I asked him if everything was okay and he made some nonsense reply and I immediately sat him down to check his BG: he was low.  Luckily, we had supplies, so we quickly recovered and enjoyed the rest of the show.  

I won't bore you with the minute by minute details of how diabetes follows us around and makes us jump through hoops, but the following pictures are typical of every couple of hours (or sooner), we would have to stop what we were doing and make sure that the kids weren't about to get sick from high BG or pass out from low BG. 

     

After all the pod failures, we panicked a little and had the Endocrinology team at OU call in some Lantus and backup supplies to a Wal-Green's in Anaheim.  We figured that at the rate we were going through pods and supplies, we had better have backup in case we ran out and had to revert to using Lantus and Novalog injections.  Unfortunately, with it being the beginning of the year and our deductible not met yet, that set us back another $1,000.  OUCH!

I guess the only other big event that happened was our 2nd day at Disney, we had extra supplies in Amelia's backpack and had even had Ethan repack his kit so we could use the backpack for extra supplies.  At one point, Amelia and the girls all went for a special lunch with the Princesses and I was with Ethan and his best friend, Jonah Mace, and their family.  Ethan said he felt low and checked his BG and he was 53.  I told him to go ahead and drink a juice and we would get some lunch.  At that point, we had this exchange:
Me: Okay, get a juice and some crackers in you, brother.
Ethan: Um, dad, you told me to clean out my backpack so mom could use it for supplies.
Me: Yes.
Ethan: So I did, but all of my supplies were in the backpack that mom has.
Me: You didn't restock the kit you have with you?
Ethan: No, I just have my glucometer...
Me: *sigh*

We powerwalked through the crowds, trying to get to a place to buy him a juice and some carbs.  Everywhere I looked, there were long lines for the food vendors (it was lunchtime, remember) and I was worried that he was dropping and would pass out.  Luckily, I was able to get into a store and buy a pretzel and some Apple juice (and two juice boxes for spares) and bring up his BG pretty fast.  I couldn't help thinking that if circumstances were just a little different, I might have had to call emergency services.

MH had one instance where she felt so shaky that she sat down in a store at Disney to check her BG and one of the staff told her she couldn't sit in the middle of the aisle.  MH was so low it was all she could do to scoot over to one side and continue to treat herself with fast sugars, but it upset her.  Amelia spoke to the supervisor and educated them about how to approach someone who was in the midst of checking BG.  She said, "The supervisor had a reasonable expectation that people should not just sit in the middle of the aisle, but when someone obviously has medical equipment out and is checking their blood sugar, a more appropriate response is to ask if she is okay, not to chastise her for sitting down.  I pointed out that it would have been worse if she had passed out while standing up and hit her head on one of the kiosks and bled all over their floor.  The supervisor got my point and apologized."


The return trip home was fine, with no diabetes issues.  But to recap: our vacation was fantastic, but the diabetes part was a drag.  Rollercoaster BG due to diet and exercise changes on the trip, pump failures and supply costs, vet expenses for our poor stressed puppy and trying to manage responsibilities with the kids restocking their kits...

I walk a line of being thankful that our diabetes is manageable (usually) and being resentful of having to manage it at great expense of our time, energy, health and finances.

Diabetes, I hope you enjoyed your time on our vacation.  I wish we could take a vacation from you.

Everyday Miracles

It has been a while since I blogged.  Let me catch you up.  Since July, I have completed my (additional) licensure hours and been granted full LMFT status by the state!  Yay.  Also, the company I was working for renewed their contract with the state, but it included some changes that were not optimal for my situation, so I made the transition to full time private practice (www.texasfamilyinstitute.org).  So, the past few months have been busy for me. 

The family has been busy, too!  The kids are all back in school and prospering.  Amelia is also back in school and juggling all of her roles: wife, mom, student, employee, volunteer.  So we are keeping busy.  One area that has kept all of us busy in the last week or two has been a fundraiser for our D.A.D. (Diabetic Alert Dog).  Some of our beloved church family intiated this event on our behalf and I think the original intent was to just have a garage sale and gift the proceeds toward our fundraising efforts.  The reality of it turned into a more detailed level of involvement on our part.

You see, garage sales are a lot of work.  As it turns out, fundraising garage sales are an order of magnitude more work.  The call went out for donations for the garage sale and, boy, was it answered.  Of course, this necessitated picking up some donations.  Then more sale items were offered and more were dropped off and more were picked up and the next thing we knew, it was a week away and we had not one, but TWO garages (ours and my in-laws') full to overflowing of items.  It was a mixed blessing, because of course, we needed items to sell, but the more we received, the more work it was to store, organize, and price them before the sale.  Of the items, Amelia said, "We got a lot of items you'd expect to find a garage sale, but we also got a lot of really nice items." 

With the date of the sale looming, we were a little discouraged at the amount of work required and our available time and energy.  Then our friends and families rallied and stepped up and we spent hours alongside some wonderful people who helped us prepare.  At about 2am on the night before the sale, we put the finishing touches on the signs for the sale and I walked the nearby streets to post them for the next morning.

The day of the sale, we expected some early aggressive garage sale-ers because of the advertising we'd done, but surprisingly, at our start time of 8am, we only had our helpers who had shown up at oh-dark-thirty to help set up.  However, lots of folk came by after we opened for business and we did great business all day long.  At 2pm, we started to allow haggling and sold off a lot of stuff that way and at 4pm, we shut it down. 

Now, I've titled this post: Miracles, but nothing I've written so far sounds particularly miraculous, does it?  The real miracle had been happening all along and I just didn't have eyes to see it until my friend Brian shared some insight with me.  He mentioned that sometimes it seemed like he prayed for miracles and in his mind, he was thinking of something big and supernatural, like when we pray for a cure to a sudden illness and we pray for a specific situation and a specific outcome to our problems.  But what he noticed was that God was blessing us with all the things, all the ingredients, all the relationships necessary for us to receive the financial blessing of the fundraiser.  The love that prompted our church family to initiate the event started years ago.  The loyalty and friendship that drove the donations and support didn't spring up overnight from nothingness.  There was some seemingly random kindness in the process, but when we think about God's mysterious movements in our lives, it is easy to conclude that the miracle of this garage sale has been in the works before we knew we would need it.  God's hard working hands manifested in the muscle requrired to move everything.  God's comforting arms appeared in the guise of hours of help with pricing and organizing items.  Our Father's feet trampled in and about our garages for eight hours on Saturday as people showed up in droves to purchase the offerings.  A miracle, supernatural in its very mundane-ness. 

But God has ever worked this way hasn't he?  I'll never put it past God to use flashy supernatural means, but it seems he likes to work through his people.  God's greatest miracle is relationship.  It has been that way from the beginning.  The pinacle of his creation was mankind, who was formed in God's own image, endowed with the ability to choose.  God initiated a relationship and has spent all of human history chasing his beloved creation and wooing us and invited us to know Him and be known by Him. 

This weekend, despite long hours and hard work, I was blessed to be able to grown in relationship with our church friends who came to help us out.  I met and got to share our situation with neighbors and strangers.  I got to share the joy of our fundraiser's fantastic success with the congregation who loves me and my wife and my children.  Miracles all around. 

And now, may you have eyes to see the blessings God has showered around you.  May you have ears to hear his invitation to get to know him by knowing his church.  May you receive the blessing of relationship with God through His people and come to know how much you are loved.

Family Vacation

The Emery family just returned from a fantastic vacation in the beautiful mountains of New Mexico.  Amelia's family has several cabins in Cloudcroft and we took a 1,350 mile round trip through the southeastern part of NM this week.  We left on Friday, July 6th, which also happened to be our 16th anniversary.  We drove to Carlsbad and made our way to Sitting Bull Falls in the  Lincoln National Forrest.

Then we made our way to the cabins in Cloudcroft, where we helped Nana and Papa clean them out and prepare them for our week's habitation.

 

We made our way out to White Sands National Monument, south of Alamogordo and played in the dunes for a while.  Ele was leaping joy!

 We took advantage of our proximity to several hiking trails, exploring our bit of the mountain with the California Cousins.  This trail was just around the corner in Cloudcroft and took us up to a scenic lookout where we saw the remains of the famous wooden "S Trestle".

 Back at the cabins, Papa put his engineering ingenuity toward repairing/rebuilding the deck on the front cabin.  Everyone pitched in and helped.  By the end of the week, it was 90% finished. :)

 We took a drive up the mountain to the Sunspot observatory.  It is a huge telescope devoted to measuring and observing cosmic events relating to our Sun.  It was way cool!

 On our way back down the mountain, we stopped at a scenic overlook and took in the beauty of the Tularosa Basin.  What a view!

 We enjoyed all sorts of rustic cooking and camping fare, but this treat was wonderful, if a bit sticky: S'mores!  Made with huge-mongous marshmallows.

 We actually got to take two trips out to White Sands, our second was after the California Cousins arrived.  On our second trip, in addition to playing in the dunes, sliding down and drawing in the sand, we also played with "light writing" with my camera.  Below, you can see a stormcloud I drew with a flashlight.

Nene and Nana put up a hummingbird feeder and we had quite a show with several of these marvelous birds fighting for dominance and feeding rights.

 On Thursday, Amelia and I decided to treat the kids and cousin Zach to a horseback trailride.  It was magnificent, fun, and helped us understand what 'saddle sore' means.  It was my first time to do any significant horseback riding and I loved it (maybe as much as Mary Hannah did!)

 We took a second nature hike out to Bridal Veil falls, but were unlucky because part of the trail was closed and we never actually got to see the purported 45 foot falls, although we enjoyed the hike.

 On the way home on Friday, we traveled north to the Three Rivers Petroglyph site and the kids tried to count the reported 21,000 individual glyphs.  I think they only got up to around 500, but it was a commendable effort.

 After that, we drove up to Carizozo and saw the Vally of Fire, where ancient lava vents spewed molten rock up into the basin and created a huge field of what is now cooled lava.  The lava is non-porous and helps sustain a variety of desert wildlife, but is hard on shoes and will shred your footwear if you try to walk on it for long.  Still, it was fun to visit.

 All in all, it was a fantastic vacation where we got to see fun things, have some great experiences and make memories with family.

But the wonderful people pictured above were not the only ones who came on our vacation.  We had an uninvited guest: Diabetes.  I know I have talked about living with Type 1 in our family before, but during our vacation, as much as we tried to just enjoy a normal time, we had to make accommodations for our implacable foe.  On Sunday, Ethan went low in the morning while we were at church in Cloudcroft.  Over the course of the day, he had to check his BG 20 times and was low 17 of them.  We were constantly trying to stuff sugars in him and it got so bad that we almost had to use his glucagon shot.  The nearest medical facility was down the mountain 16 miles away (the trip takes 30-40 minutes because of the steep grade to get down the mountain).  We had to call the emergency pager system from our Pediatric Endocrinology team at OU children's medical center.  They were a big help and at about 4 am on Monday morning, we finally were able to rest and get back to 'normal'.  I remember when we were packing for our trip, a friend who was visiting commented to Amelia when she was packing the first couple bags about getting everything packed up.  Amelia told her that the first few bags were just the medical supplies we have to take.  With two Type 1 Diabetics, we had to have supplies for the entire week, as well as backups for everything.  Extra insulin pods for their pumps, extra Novalog, extra Lantus, extra syringes, extra juice boxes, extra sugar treats, extra alcohol wipes, extra test strips, extra ketone sticks... extra everything.  Enough for two kids for one week.  We don't get a break, even on vacation.  Most of the week, the kids' BG were okay, but everything we did required extra vigilance on our part... hiking?  Check BG before we leave, restock juice and skittles in case we have a low due to more exertion.  White sands?  Great fun, but we have to interrupt every so often and check to make sure we're in range.  I don't know whether it was the extra exertion or the altitude or what factors contributed, but it seemed that the kids were either too high or going low whenever we checked them.  I'm not complaining so much as explaining.  As you can see from the pictures above, we don't let it stop us, but it sure does slow us down.  Cousin Zach was sleeping in our cabin, but on Sunday night, when Ethan was fighting his lows and feeling pretty emotional (due to his BG and the situation), Zach got so freaked out at the scene, he ended up sleeping in another cabin because it scared him to see his cousin Ethan screaming and crying about hating diabetes and not wanting to have to get a shot of glucagon or have to do injections because we took his pump off him while he was going low, to try and bring his BG back up.  I can't help thinking that if we had our D.A.D already, it would have tipped us off to the lows and helped us combat them before they got critical and sent us on a roller-coaster ride of BGs that lasted almost 20 hours.  We continue to hope and pray for a cure so that maybe someday, our family vacation will not include that dastardly diabetes.

-jeff

Requiem

Working as a chaplain at the hospital, I was regularly summoned to be present for traumatic events: removing someone from life support; delivering news to waiting family that a loved one did not survive a surgery; responding to a multiple-car wreck ambulance call... and the worst kind of all: fetal demise.

Just thinking about having to endure any part of those situations is emotionally difficult for many people.  Medical staff, emergency responders, and law officers are trained to deal with them, but most folks just crumble when they think about it.  Of course, those situations are devastating for the families and individuals who have endured them.  Many times, a family member would comment to me, as everyone was leaving to mourn in their own way, "Chaplain, I don't know how you do your job."  It is easy, in a way, to remain compartmentalized in my thinking, my feeling about grief and loss.  Today, however, there was no way I could keep from feeling the enormous sense of sadness and emptiness that accompanies the death of a child.

This morning, we learned that the daughter of one of Amelia's lifelong friends died in her sleep, likely of hypoglycemic shock, or low blood sugar, and complications with her Type 1 Diabetes.  I was stricken with grief on several levels.  First, my heart broke as a parent, for our friend and her family.  Second, anxiety and fear for my own children, two of whom have T1D, gripped me and wouldn't let me go.  I shifted into crisis mode to make it through the day.  I went to my wife, to offer comfort and to be with her in joint grief as partners/parents/friends and we wept together.  Amelia took the rest of the day off work to tend to her grief and her friend.  I went to see my mom, because that is what moms are for.  Where I felt I needed to be strong for my wife, I felt I could just be a scared boy with my mom, so I got some more of my anxiety out.  Then I went to work, where I tried to be productive.  While I was helping other families deal with their dysfunctions and crises, I was fine, but I couldn't focus to do any of my paperwork.

I spent the evening with my kids, going to a play practice and then a homecoming football game, but now, as we get ready to put kids to bed, I'm faced with doing battle with a wicked team: Diabetes and Anxiety.  Although we live daily in the shadow of the specter of Diabetes, we are protected by an illusion of normalcy that allows us to believe that we have things under control.  Tonight, the veil we rely on to help us function has been ripped away by the death of our friend's daughter.  Tonight, we can't ignore or pretend that this reality doesn't exist for us: Death is always at our doorstep.  No matter our vigilance, our precautions, our education, our habits... Diabetes stands ready to claim the lives of our son and our daughter.

Earlier today, I asked a dear friend and fellow T1 sufferer, Sarah Ray, for some advice.  She has lived with the same issue, the same disease for many years.  She helped me to be able to come to terms with today:

"...Sarah, just wanted to let you know that _________'s little girl, _____, died in her sleep last night. I am not sure if you know them or not, but ____ was Type 1 and she had difficulty with seizures and such from her lows. _______ and Amelia have been friends since they were little girls. We are all pretty sad right now. Haven't told the kids yet, as they are at school, but would appreciate prayers and maybe even some pointers on how to help MH and Ethan not have anxiety over going to sleep.
love you,
jeff..." 

Sarah Ray
"... I am praying and very sad as well I had seen posts on Amelia's wall about her but had never gotten to meet her and I believe u guys have talked about her to me. Not sure how I did not connect with her. I am sorry its so close to home and I will try to think of some thing for MH and Ethan but I am just as scared some nights all I can have is faith that God is not done with me yet. I know having the Cgms will maybe help for MH and Ethan to feel safe sleeping. It scares me too,
Love Sarah..."

Sarah reminded me, helped me remember what my grief and fear caused me to lose sight of... God is in control.  He is in control not only of the life and death of my children, but of everyone's life, including my own.  I am not saying I believe that God caused the death of this precious child, rather, that God is ruler of life and death.  I agree with his servants the prophets who declared that his ways are higher than our ways and his thoughts, our thoughts.  I take comfort knowing that despite the tragedy we experience living in this broken world, God is a god of redemption.  He works to redeem not only people, but situations.  Tragic, awful, devastating situations.  Nothing is beyond God's ability to redeem for His glory.  So, while I mourn for my friend's loss, I rejoice knowing God is at work.  While I grieve for our sadness, I also sacrifice my anxiety on the altar of faith.  I think tonight, as I struggle to sleep, I hear God's voice whispering to me, "Dear child, things will never be the same, but trust me... it will be alright."  Come, Lord Jesus.  I'm ready for some tear wiping...

C.O.P.s

In our Bible class the other day, we had an interesting discussion about 2 Corinthians 3.  In that chapter, Paul the Apostle is talking about how one goes about getting known by others.  He rhetorically suggests that some sort of 'letter of recommendation' is the worldly standard.  However, those who are in Christ, he asserts, don't need some letter written in ink.  No, those are insincere and easy to fake.  A follower of Christ should have the Spirit of God writing spiritual information on those that we are surrounded by.  In effect, those who know us ARE our living letters of reference for those who do not know us.  And it is not ourselves, but GOD who writes about us on to others' hearts, when we are walking in the spirit.

Wow... what a heady thought.  The passage emphasizes the difference between the outward and the inward.  The written Law vs. the inward changes of the human heart, shaped by God's spirit.  So, as the Bible class was wrapping up, the facilitator mused something to the effect of, "I wonder what it would take for us to really incorporate this type of living.  To be totally infused, taken over, changed by this idea so that every moment of our lives allows us to be that aroma of Christ..."  Immediately, I knew the answer to her question.

There are a few situations in our lives that, ideally, should change how the think, act, and feel about life.  Worldview changing events that usually happen suddenly.  For instance, getting married ought to be one of those events.  Done right, the marriage relationship reshapes how one thinks, acts and feels.  From "I do" onward, every waking moment, every decision will now be filtered through a new filter.  Married persons should throw away the "What is best for me" filter and be prepared to use the "What is best for us" filter from here on out.  That is... until one has children.  Then, the world shifts again.  Or it should, anyhow.

Anyhow, my point is... those events become what I have termed, "Central Organizing Principles".  The fact that a person has become married means that he/she should no longer consider him/herself as an individual, but as a unit.  You don't have to throw away the 'self', but you DO have to incorporate your "other" into your oneness, or things are bound to go wrong.  Every decision made will be made with the new situation in mind.  If a person goes around making decisions based on the old standard of simply 'self'... see how long that organizing principle works for you.

Sometimes, people are blessed/cursed with other life situations that become COPs for them.  Just ask anyone who has ever been in a debilitating accident and lost a limb.  Everyday, they have a physical reminder of what has changed for them.  For my family, we had a COP enter our lives in December of 2004, when my 18 month old son was diagnosed with Type 1 Diabetes.  Quick recap for those who don't know: Type 1 is different than Type 2.  It is an autoimmune disorder where one's body attacks one's pancreas and basically shuts it down, preventing your body from making the hormone: insulin.  Without daily injections of artificial insulin, a Type 1 diabetic will die within days.

So, our lives began to be shaped by this COP, diabetes.  We don't eat a bite without being aware of how much insulin to give.  We don't leave the house without supplies to manage diabetes: insulin pump, extra syringes, candy for quick sugar boosts, ketone strips, apple juice, etc.  We don't sleep without checking blood sugar levels.  We buy clothing based on what is comfortable to wear over the insulin pump so not too many people will notice it.  We don't go on dates without knowing that someone who is knowledgeable about diabetes will be watching the kids.  Although it isn't real to them just yet, diabetes will eventually have a say in who they choose to marry because it takes a special someone to deal with the added stress and health risks; my oldest daughter, who was also diagnosed with T1 just a few years ago, will also have to worry about whether to have children because of the added complications of her diabetes.  It doesn't go away, but it does fade into the background.  It is normal for us to check blood sugars before we eat... our COP has become normal for us and, thankfully, it is not often that we feel oppressed by it.

But, as I considered the question from my Bible class, it struck me that the Apostle Paul was writing about how Christ should be the COP, the Central Organizing Principle in the lives of those who claim to follow him.  One's decision to follow Christ should be a commitment that is life altering and should permeate every aspect of one's being.  What we eat, what we wear, how we treat others, even how we THINK of others... who we marry, how we do what we do, how we take care of our health... That is why I said earlier that some people are blessed/cursed by other situations that become COPs for them. 

In one line of thinking, it is certainly a curse.  I wouldn't wish diabetes (or any other chronic illness or debilitating accident) on anyone.  However, there is a lot of redemption that goes on for those who are willing to view it as a blessing.  Diabetes has taught my family to be strong in many ways.  Diabetes makes us rely on each other more, look out for each other, be more aware of each other's limits and abilities.  Diabetes has forced us to rely on God's blessings of family and friends, and in doing so, has exposed us to the influence of some amazing people.  As much as I would willingly and immediately throw off the oppressive influence of diabetes as a COP, I am grateful for the effect it has had in drawing us nearer to the heart of God.

My desire is to allow the influence of the Spirit of God to become more of a Central Organizing Principle in my life and in the life of my family.  Unlike diabetes, which forced it's way in... God waits to be invited in.  Once he receives that invitation, he begins to write my life on the hearts of others with whom I am in a relationship.  I hope to expand my portfolio of 'letters of reference' as God's love becomes my central organizing principle.

When even "normal" gets overwhelmed...

I had a really great day today. Really great. A good day with the family. We attended worship services at the Abilene Mission church, which was a interesting experience for us. Afterwards, we fellowshipped with two great families all afternoon. Great worship, good food, friendship, swimming and even a nap. Not bad for a Sunday!

So why did I get overwhelmed this evening? Because sometimes it all just catches up with you. Let's rewind....
On Friday, we had our quarterly A1C checkup at OU Children's Hosptial. This checkup allows us to get a glimpse of how Mary Hannah's and Ethan's bodies are handling their blood sugars, and consequentially, allows us to know if we need to make adjustments in our Diabetes Management strategy. In general, we feel like we have a handle on how our family copes with this chronic illness that has afflicted my older two children. When people ask us how we deal with Type 1 Diabetes, my response is usually that it has become our 'normal'. Yes, it was traumatic when we got the diagnosis for Ethan. Yes, it was a kick in the pants when we got Mary Hannah's diagnosis. Yes, if I stop and think about it, we are affected everyday in a million small ways by how Diabetes gets to dictate how we go about living our 'normal' everyday lives. But the truth is that most of the time, we don't stop and think about it, we just do it. I asked Amelia recently what she told people when they asked her about our coping strategy. She said something like, "I tell them that we just do it. People usually are pretty sympathetic and say stuff like, 'I don't know how you do it...' and I always just think, 'The options are: you do it, or :your child dies, so you just do it."

Well, I don't know what combination of factors fed into how I was handling things tonight, but I got a little overwhelmed this evening. After a great time today, we got home and I started making some dinner for Ethan and Eleanor (Mary Hannah was spending the night with a friend). Ethan's blood glucose has been high most of the day, and so I opted for a meal with few carbohydrates. See, this is one of the things that I usually don't think about. As a family, we can't just decide what we want to eat based on what we're hungry for, or what we have on hand to cook. We always, always, have to be aware of how what we eat will affect blood sugars. Because Ethan had been running with high BG all day, it indicated to me that for some reason, he was not getting the insulin he needed to process the sugar in his blood. It could have been an occlusion in his pump. It could be that he is getting sick and despite having insulin to cover his BG, his liver could be dumping extra sugar into his blood to help his immune system. It could be that Ethan was sneaking food and not telling us (doubtful). It could be a ton of different things. Anyhow, I figured that a low carb meal would be best, so we had what we call 'homemade lunchables'. Basically: lunch meat (effectively zero carbs), cheese (again, very low carbs), crackers (just a few carbs each), sugar free pudding (just a few carbs) and flavored water drinks (zero carbs). I told Ethan to go ahead and check his BG again before dinner. Turns out, he left his insulin kit at our friend's house. Now, in our case, leaving the insulin kit isn't a big deal if we are at home. We have extra syringes, extra insulin, extra glucometers, extra everything here at the house. But in principle, we're trying to help Ethan grow in his responsibility for managing his diabetes on his own. Part of that is remembering to take his kit with him wherever he goes. I gave him the ol' pep talk about being responsible and we sat down to eat.

After dinner, it was time to change Ethan's pump site. For clarification, Ethan has an Omnipod insulin pump. It is a nifty little pump that has all of the component parts contained in a 'pod' that is about the size of a small pager. We fill the 'pod' with insulin and affix it to the site and a spring loaded needle inserts a short 1/4" plastic cannula into the subcutaneous fat tissue and the pump begins delivering insulin to the body. The pump's computer is programmed with all the information about Ethan's insulin needs and does for him what your pancreas and endocrine system do for your body. Back to the story... there are basically only a few sites on the body with enough body fat to serve as sites for the pump: the abdomen, thighs, upper arms and buttocks. Over time, if the same site is used over and over, it builds up a resistance to the insulin absorption and becomes less effective. Thus, it is considered to be 'best practice' to rotate the sites you use. The site is usually changed every three days or so, so if you use all the available sites, each site will only have to bear the burden for three days every couple of weeks. On a little boy who is experiencing growth spurts and losing his baby fat, this process can be challenging. Ethan does not like to use his legs, as he says it is uncomfortable for sitting and when he is lying down. However, after our visit to the Endocrinologist, we were reminded of the necessity of rotating sites. So, I told Ethan that we needed to use his legs, too. He whined and fussed at me because he really didn't want to place the pump on his legs. Incidentally, MH doesn't like to use her abdomen and prefers her legs and arms. Ethan continued fussing at me. I reasoned with him:
Me: Hey buddy, look at your fingers. (he holds up his fingers) How many do you have?
Ethan: Twenty.
Me: Count again, just fingers.
Ethan: Oh, ten.
Me: How many have callouses because of how often you have to prick them to check your sugars?
Ethan: (counting his callouses) Four.
Me: Okay, so those fingers are getting worn out, right? It makes it harder to check your sugar when you overuse those fingers. The same thing happens to your pump sites. We really need to be using your legs, too, buddy.
Ethan: But I don't like it with my 'pod' on my legs!
Me: I know, brother. But, listen, I can't take the Diabetes away from you. All I can do is help you do the best job taking care of it, and I'm telling you that even if you don't like it, this is the best thing to do.
Ethan: (crying now) I hate it. Why did God even have to invent... (he catches himself here...) Why does God allow Diabetes to happen?
Me: ...
Ethan: I hate it. It... (looks at me right in the eyes) it SUCKS!
Me: Yes. Yes it does. But until someone figures out a cure, we just have to do the best we can, alright?

We go on to get the 'pod' affixed to his thigh and the spring loaded needle inserts the cannula with a *pop* and Ethan just explodes with crying and fussing. I know that it hurts to some extent, but we've been doing this for a while now and I know that his crying is out of proportion with the actual pain and has more to do with the mileage he's getting in attention from Daddy, but I'm feeling pretty sympathetic to him right now and so I just let him fuss. I drew him into an embrace and just let him cry. After a few minutes, I sent him back to his room to get ready for bed and promised to come read a story in a few minutes. Ethan left the room and it was as if his emotionality had been transferred to me. All the unfairness of Diabetes, all the sh.. stuff we have to deal with on a day in-day out basis, all of the expense, all of the vigilance, all of the equipment, all of the .... you get the idea... The frustration of having to hold my son and not have an answer for him about why *he* has to suffer from this condition, it all just hit me and I cried. Not for long, and not very loudly, but I cried. Amelia had been watching me and asked if I was okay. I told her that I know we usually just consider all this to be our 'normal', but that the experience of having to reason with my son, to just accept the suck-iness of this disease... it is an experience that I shouldn't have to have. I don't cry about it often, but tonight it just really got to me.

So, Amelia held me for a few minutes while I cried and then I sucked up my fussiness and read my babies a nighttime story and tucked them in to bed. I told them that I love them and that God loves them and that everything is okay. Then I went back into the living room and Amelia and I sat, reading books in companionable silence till the phone rang. It was from Mary Hannah's friend's mom letting us know that MH didn't have extra insulin so that she could change her 'pod'.
Amelia: Do you want me to go?
Me: *sigh* Nah, I'll do it.
Amelia: (lightheartedly) Well, I managed to pack extra test strips for her glucometer and an extra 'pod' for her because I knew she'd need to change sites tonight... I just forgot the insulin.
Me: (kissing Amelia) 'sokay, baby. This is our life. Be back in a bit. You want anything while I'm out?
Amelia: I don't *need* anything, but if you manage to bring home a sweet tea, I wouldn't mind.
Me: Back in a bit...

And I'm back to 'normal'


*I am not looking for sympathy here. My purpose in blogging about this is to heighten awareness about the social/emotional toll of chronic illness. For people who don't deal with it, I hope it will raise your awareness about some of the challenges that families face on an emotional level. For people who read this and identify with the emotions and struggle, I hope that this narrative will reassure you that your feelings are normal and acceptable. Often, caregivers get stuck feeling like they can't express their feelings because they'll be seen as whine-y, or misunderstood, or pitied, etc. I appreciate what you are going through and I hope that you have a way to cope with and find strength in doing what you do best: caring for and loving your families despite the way that the illness tries to tear down and control your daily life. May God richly bless you. - jeff

Anger

Dear Wal-Mart Pharmacy:

Tonight I was frustrated with you at a level I rarely reach. I came in to pick up a prescription that my wife had called to refill at about noon. I arrived at about 6pm and was told that the prescription was not yet ready. Incredulous, I asked why and got the brush off from the employee at the pharmacy register. "I'm sorry, sir, but I don't control the order they get filled. I've noted that you're here waiting and we'll try to get it out shortly, if you'll please step over there (gestures toward a knot of other hapless souls waiting for their unfilled scripts)." Me: "I'm just surprised because it has been about six hours..." Cashier: "You can check with the folks at the drop-off if you like..." Me: "Would that help speed things along?" Cashier: "Probably not..."

So I waited. For 30 more minutes. Sitting there, waiting, I started brooding, which is probably not the best thing to do. Full of righteous indignation, I called Amelia to explain to her why I was not home yet.

Wal-Mart Pharmacy, I don't understand why you are unable to efficiently fill my scripts. This is the third month in a row that you have messed them up. I understand slow computers and poor communication between people when you're swamped with other issues. I get that you have bad days and grumpy employees and annoying customers. I will even grant that there are myriad complexities about pharmacies that I just can't comprehend. But how do you keep managing to screw it up? It is the SAME script.

I have two children who are type I diabetics. I'm not upset about the occasional mess up with a new cough medicine, but this is something we've been filling with you consistently for months. Is your computer system so complicated that you can't make a note in our file? You said you did, twice. Their diagnosis isn't going to change. They have an incurable disease, for which we have to purchase monthly supplies. Test strips for glucometers, insulin to manage their blood sugars. Because of our insurance, if you'll follow the notes you claim to have put on our files, you'll help us save $50/month on the test strips. Over the course of a year, we'll save enough on the test strips to keep our children alive with their life-sustaining medicine for another 10 months. You see why this is important to me?

Yet, for three visits over the past months, you have managed to make this process difficult. One month, you were out of test strips. That was okay, you said you'd reorder and call. You didn't call. We waited a week and then went back, only to find that they hadn't been ordered. A WEEK LATER! I know we are not the only family who needs test strips in the area.

The next visit, you overcharged us again and it took more time to straighten out. So can you understand why I was so frustrated tonight? To be concise:
- I want you to have the proper test strips on hand (because, you know, I come in every month to get them)
- I want you to have persistent, clear notes in your system that allow your employees to fill the scripts correctly and communicate with my insurance so that I am properly charged.
- I want some consistency with your service so that I can be confident that if I give you SIX HOURS to fill a prescription that I fill EVERY MONTH, you'll be able to come through.


Let's get this cleared up, k?

Sincerely,

-a frustrated customer.

Training exercise

This week should be pretty exciting for me and for my co-workers and for some kids who come from some hurtful backgrounds. I recently accepted a job working for New Horizons, a company which works with families and children who are either at risk for all sorts of legal, physical, and emotional problems or have already experienced them. Specifically, I'll be working as part of the direct care staff at the Audrey Grace House, a residential treatment center for troubled adolescents.

As part of our training, the staff of AGH spent some time at the Ranch, in Goldthwaite, TX, another of New Horizon's facilities. Early in our training, the instructor, Randy Fry, led us in an exercise that was designed to give us some perspective into the lives of the kids we'd be serving. He asked us each to take a sheet of paper and tear it into three smaller pieces. On each slip of paper, we were instructed to jot down a person, place or thing that was important to us, personally. Nobody shared what they wrote down, but we were further instructed to stack them in order of importance. Silently, we each weighed our connection to the person/place/thing on each slip of paper and sorted them accordingly. Then Randy said, "Now that you have listed and sorted the three things that are most important to you, take the third most important thing, crumple it up and throw it away. Imagine that it was ripped from you." We each did as we were instructed, crushing the slip of paper into a wad and tossing it into the middle of the circle of chairs. "Now, you've lost that important thing, but what if your next most valuable thing was also taken away from you? Throw away your next paper." Slowly, we processed the implication of what Randy was saying. Several of us hung on to our papers, the weight of what they represented in our lives holding us back. "Go on, throw them away, " said Randy quietly. When we'd all tossed our crumpled treasures in the middle, he instructed us to do it one final time. "Now, take that thing that is most important to you and throw away too." As each of us considered the person/place/thing we'd written on the slip of paper, the paper became more than a paper, it was a real thing. It represented, for most of us, a spouse, a parent, a child, or a relative. We sat in silence for a few moments. Then Randy said, "This little exercise that we've just done is what happens in reality for most of the kids that come to us. They have had their homes, their families, their treasures all ripped away from them. It is understandable that they are scared, angry, fearful, resentful. Most people have a hard time seeing the kid underneath their acting out behavior."

We spent a while processing what we were feeling during the exercise. For me, I'd had a bit of a dilemma trying to select what three things were most important. I have three children and a wife... those are four things and I only got three slips of paper. On one of the slips of paper, I'd written the name of my son, Ethan. I had decided to let him represent all three of my kids because he has been the child who has, until recently, demanded so much of my attention because of his diabetes. When it came time to crumple up and throw away that slip of paper, I couldn't do it. Intellectually, I knew that it was just a piece of paper and this was just a training exercise. Emotionally, I was experiencing a shadow of the pain and hurt that losing him, losing any of my children, would bring. The thought occurred to me then, in the middle of the exercise, that because of his medical condition, the possibility of losing him was more of a reality than I'd like to admit. All it would take is a lapse in our vigilance with his diabetes and he could be in a coma within a day.

The point of the exercise was to help this group of staff, who will be working directly with hurting kids, develop empathy, an ability to see past their anger and acting out and to love them. It was a good exercise.

Keep the Audrey Grace House in your prayers as we begin a journey with this new facility.

God, be with the staff as you bring these kids into our circle of influence. Give us eyes to see them as you see them. Use us as your arms to comfort them, your hands to guide them and your voice to encourage them to grow and prosper despite their trauma. Be with the kids and help them to be responsive to the love that we have to offer them. So many of them have developed a hardness, a shell meant to protect them from being hurt or disappointed yet again. Bless the work of the treatment center as we help the kids to learn about themselves and learn to function at home, at school. Heal the hurts and let your grace and mercy abound, in their lives and in ours. Shape us into the instruments of your love and mercy, as we have received them from your Son.

Initial Impressions about the Omnipod insulin pump

At the end of May, we switched Ethan's insulin pump out and have been trying out a new type of pump. Ethan was diagnosed with Type 1 diabetes in December of 2004 and has been using the Minimed Paradigm pump since spring of 2005.

All in all, we've been very pleased with the Paradigm pump. For those of you who are not familiar with insulin pumps, here is a brief description:

(image ganked from here) The pump is about the size of a pager (remember those?) or a flip phone (closed). It has a slot for a reservoir which is filled with insulin and the electronics which dictate how quickly the screw-driven pump will administer the insulin. A minimal amount of buttons on the face allow users to input blood glucose readings and adjust the dosage as needed. The pump itself is connected to the body via some tubing, through which the insulin must travel to reach the infusion site. The infusion site is a place on the body where a small canula is inserted using a disposable needle. Once the needle has placed the canula, it is disposed of, leaving the flexible plastic canula inserted in subcutaneous fat just below the skin.

As I mentioned earlier, we were pretty content with the pump, as it offered us greater control and less hassle in managing Ethan's diabetes. The high points were:
1) Typically, we only had one injection (the infusion site) every three days, which is how often we had to replace the site and reservior. Before the pump, Ethan got at least 5 shots of insulin each day, more when needed (which was frequently).
2) Whenever we did have a problem with the pump, the company, Minimed was FANTASTIC about helping us solve it. The most extreme (and impressive) case was one Friday morning, when the pump inexplicably shut down. Although we had backup supplies and were prepared to weather the weekend using syringes, Minimed jumped through all kinds of hoops to get a new pump there by the following afternoon. Unable to find an overnight delivery option, they purchased a commercial airline seat for the pump, put it on a plane and had it flown into Abilene regional airport, picked up by private courier and delivered to our doorstep within 24 hours. This was all without us pitching a fit. We were perfectly okay with waiting until Monday, but given Ethan's fragile medical history, the company decided on this action on their own.
3) Online ordering and billing was easy and we never had any problems getting supplies.

The downsides of the Paradigm pump for us were:
1) The infusion process. We tried using the quickset infusion set, but the springloaded device didn't work well for us and we had a lot of misfires that resulted in unusable supplies (when you use three sets to do one infusion, it adds up quickly). Also, it was a little painful for Ethan. So we switched to the Silhouette inserter, which worked better but required us to stick Ethan by hand using an inch and a half long needle every three days. For various reasons, the angle and depth of the infusion was different everytime, affecting the absorption of the insulin, and thus, it's effectiveness.
2) The tubing. Anytime we had a high blood glucose reading, the first culprit was the tubing. Air bubbles, kinks, and even outright disconnection from the pump while not common, were also not uncommon. Also, even though it didn't happen very often, there always remained the chance that the tubing would be caught on something and damaged or get pulled out. Admittedly, this only happened twice in the four years we used it.
3) The canula. Again, it wasn't common, but it was also not uncommon to have the adhesive wear off a bit and the canula work it's way out, delivering its payload of insulin on the surface of the skin instead of underneath. This also tended to be painful for Ethan and a source of great discomfort.

Soooooo.... when we heard about the Omnipod, we were pretty jazzed. It addressed all of the main concerns we had with the Paradigm pump. It was self-contained (no tubing) and the infusion process was precise (always delivering the canula at a 45 degree angle 1/4 an inch below the skin, every time. It is spring loaded and instead of the two-three second process that happens by hand, it happens in 1/250th of a second, minimizing the pain). Also, the pump has a window on it so you can see for sure that the canula is inserted in the skin.
(image from here)

So, after using it for almost a month, here is my review:

Overall, I'm impressed. Ethan's blood sugars have been more consistent and lower than we were able to typically manage with the Paradigm pump. The process of changing sites doesn't take as long nor is it as complicated. It seems to be less painful, according to Ethan's reactions and recovery time after site changes. He's been to Karate and been swimming with it and it functioned as promised.

Here are my concerns:
1) Adhesive. The backing that attaches the pod is not adequate. I understand that it is probably difficult to find a balance between something strong and durable enough to last for three days but weak enough to be able to remove easily and painlessly. However, it is just not up to the task of keeping up with a 6 year old boy... We've had to use medical tape (the type they use to secure IVs in hospitals. This works, but is annoying for several reasons a) we shouldn't have to take an extra step to secure it and b) the edges of the adhesive attract lint and when we remove the tape, the remnants stay on for days, despite attempts to use alcohol, acetone or other adhesive removal liquids.

2) Pod malfunctions. In four weeks, we've had two malfunctions that have required replacing the pump. Not only is it distressing to have to put Ethan through the process before the three days, but it is expensive, as well. In addtion to the expense of the pod, we are also out the insulin that is in the reservoir. Even when insurance covers it, insulin is EXPENSIVE.

3) Canula. I am glad that the window is there, but the combination of a poor adhesive and a pod malfunction left us in a high blood glucose situation for two days before we figured out that the canula never went in. After almost 24 hours of inexplicable high BG numbers, I finally gave Ethan an injection with a syringe and treated his ketones. Amelia was the one who noticed that the canula wasn't in.

4) PDA device. I know they're trying to keep expenses down, but this is just poorly engineered. The buttons are clunky and not very intuitive. The interface is too multilayered. Although it is designed to communicate wirelessly with the pump and displays the last BG reading when you activate it, that feature only works when you are within a foot of the pod. If Ethan is in another room and I'm just looking at his numbers, it takes four menus to get to his latest BG reading. Also, one of the times we had a malfunction - a communication error, the PDA instructed me to change the pod immeditely. However, my more immediate concern was to check Ethan's glucose. Because the PDA is also his glucometer, I was unable to bypass the ERROR screen and simply check his sugar. I had to dig a spare glucometer and check him (and then dose him, as he was high) before I could change the pod. There should be a manual override so you can use the PDA as a glucometer regardless of pod malfunctions. The PDA includes an onboard library of common food items and their nutritional information. This is just gimmicky. Any competent diabetic (or caregiver) will know this stuff by heart or will have access to a better source of information. Remove this function and save space, memory, or ... something.

So, am I happy we switched? So far, I think it is almost even between the two pumps. They both have strengths and flaws. I haven't interacted with Omnipod's customer service, but I need to call them and address my concerns and find out what our options are for recovering some of our expense when their product malfunctions. I'll try to keep you posted. Cheers!

Highs and Lows

I've posted a lot on diabetes recently and with good reason: having Mary Hannah's condition in the mix is a big change. Overall, her blood sugar readings have been more consistent and predictably reactive to insulin. For instance, if we give her 1 unit of insulin, her blood sugar levels respond pretty consistently by lowering her BG by about 100 points, or covering 25 carbs eaten. Ethan, on the other hand, continues to be an unpredictable roller coaster ride. 1 unit of insulin may have no immediate discernible affect on his BG or it could, who knows. We're looking forward to seeing how he responds to a new pump in a few weeks.

On the behavioral side of things, MH is still adjusting to being diabetic. Not long ago, when her after-school BG reading was really high, she admitted to having a snack at school, but instead of choosing candy, she made a healthy choice: an orange. (For those of you who are confused at this point, oranges and grapes are the two fruits with the highest natural sugar content. A 6 oz orange has about 2o carbs worth of sugar in it, versus a candy like a Jolly Rancher, which has 5 carbs).

Anyhow, I was a little concerned after learning that a few days ago. MH had a cookie at school. She'd figured out how many carbs it had and gave herself a shot to cover it. While I am glad that she is taking the initiative to learn how to do all of this for herself, I'm still not comfortable that she is attentive enough to all the complexities (how much active insulin she has in her system, whether she's been exercising, if she is ill, etc) to be able to do it all without a knowledgeable adult to oversee the procedure. So, I told her that I was proud of her for taking care of herself and that her mommy and I want her to do that, but we still want to be 100% sure that everything is exact, so in the future, if she has the opportunity to have an extra snack at school, to call one of us and verify things before she goes through with it. She agreed to do that.

Fast forward a few days: MH calls me and says, "Daddy, they had some candy at school and I wanted to have some, too. It is a Jolly Rancher and I looked it up, it has 70 carbs. Can I have it?" Now, I remember these types:
but the ones I see most often are a little smaller:

So I said, "Mary Hannah, 70 carbs is a lot of candy, are you sure?"
MH: "Yes, I looked it up."
Me: "Baby, I believe you looked it up, but 70 carbs is a lot for a snack, how about if you save it for lunch time and I'll double check it when I come to give you insulin for your lunch?"
MH: "Dadddddyyyy... please? Everyone else got one. Please? I want it."
Me: "Baby, I know you do, and I'm very glad that you called me to check, but now I need you to trust me and obey, even when you really, really want it. I think that is too much and I am not saying you can't have it, just that you can't have it right now. You need to obey me and wait for just a while."
MH: "I have to get off the phone now, daddy. Please can I have it?"
Me: "No, I'm sorry, but you really need to wait for me. I promise we'll look it up and it can be part of your dessert for lunch."
MH: (sighing) "Okay. Bye."

As it turns out, when I got to lunch, I looked it up in her Calorieking guidebook, she'd been looking at the calories, not the carbs. It was 70 calories and about 5 carbs (the small, assorted kind). If she had given herself 3 units of insulin to cover 70 carbs, her BG would have dropped 300 points. That would probably have put her into seizures or worse. >shudder< I praised her for calling me to check in, as instructed. I told her how I was proud of her for obeying me even when she REALLY wanted the candy and for trusting that I just wanted her to stay healthy. She had a good lunch and got her Jolly Rancher for dessert.

Now, for MY feelings. First, I was was a little bit afraid when she called because I was 99% certain that she'd misread the information. I was glad that we'd had the talk a few days ago about calling to verify things. My heart is both joyful and pained about the situation, though. I am so proud that she was able to obey instead of giving in to the temptation to indulge. It may not sound like a big thing to those of us who can process sugar with no side-effects (spare tires and assorted flab notwithstanding). But I am reminded of a friend who told me about a time when her adolescent son was at a camp one time and all the boys were segregated for talk about "girls and temptation". They passed out slips of paper and asked the boys to write down the thing that tempts them most. Other boys mentioned different female body parts, or flirtations. Her son wrote: "Sugar". So I'm proud that she resisted the temptation to have unauthorized sugar, the temptation to disobey her daddy. However, my heart breaks again when this stuff happens and I am reminded that my baby has to worry about something like this. I hate diabetes.

Thank you, Lord, for the abundant blessings. You surround me all day long with your love and keep my cup full to overflowing. I am assaulted by bitterness when I think about the ways that you want to bless me with diabetes. You give me an everpresent sense of reliance on you for strength. You give me empathy to reach out to other families who are stricken with chronic illness and to comfort them and strengthen them. You help me to overlook obstacles that would weigh down other families because they have not walked where you have caused us to walk. But Lord, oh, Lord... when will you take this disease away from my babies? When will you heal them of their infirmaties? I am aware of both blessing and curses, suffering and healing, but I admit, I don't always understand what I am supposed to feel about these things. Be with my children, your children, and help them grow strong in you, oh God.

Narrative Exercise

One of my professors recently assigned us the task of externalizing an issue/feeling/hurdle that I am facing at present. We were instructed to describe it in visual or kinesthetic terms.

Diabetes is a constant companion for our family. It influences the activities we can participate in, what food we can eat, the time we can travel, the money we can spend, how we handle our health decisions, sometimes even how much sleep we are able to get each night. Like a cruel taskmaster, just when we began to be comfortable with Ethan’s insulin regimen, Diabetes attacked our daughter, Mary Hannah. Now, we are relearning the initial stages of the disease. Although very similar, Diabetes has manifested itself in very different ways in each of them. This causes anxiety for me and my wife as we have to treat them differently from each other in terms of how often they have to check their blood sugar, how much they can eat, what items they can eat (they have different foods that trigger higher than normal reactions in each of them). Also, Diabetes has also realigned the structure of our family system. Instead of Ethan being the one child getting the most attention because of his condition, with Mary Hannah and Eleanor feeling a bit neglected in terms of attention, now Eleanor is the odd child out, being the only one without a chronic medical condition that demands our vigilance. In our marital relationship, Diabetes sometimes sits between us and keeps us from having time alone because of our anxiety around child care for us to enjoy our alone time. For Ethan, although Diabetes is a dark monster that afflicts him, it is also a friend that made him special and now he shares his uniqueness with his sister. It is a bittersweet turn of events. For Mary Hannah, who has been “normal” up till now, she is dealing not only with the physical changes in her body, but the social ramifications of Diabetes. The unintended consequences of her disease have made her feel “weird” to her friends. She is the subject of intense curiosity and even a little fear from her classmates at school. Diabetes has teamed up with Depression and Anger to torment Mary Hannah when she tries to go to sleep at night and we often end up rocking her to sleep as she cries in our arms. Eleanor has enjoyed a privileged status as the baby of the family, but her coveted attention has shifted and she doesn’t like it. Diabetes laughs at our family and mocks us as we struggle to find normalcy in this difficult situation. Diabetes is an uninvited visitor in our home who refuses to leave. He’s unpacked and is here to stay. He frustrates us and constantly disrupts our daily living. We put up with him and go through the motions of placating him with blood offerings on test strips and ritual torture of daily injections of insulin. However, he has also brought us closer together as a family. We rely on each other to remind each other to check blood sugars, eat responsibly, exercise together and manage this disease.

The picture above is the plastic jar that we deposit used "sharps" or needles after we are finished with them.

By the numbers:
Average number of finger sticks done daily: 5 per kid. That's 10 lancets used. 10 test strips.
Times each month the kids check their sugar (based on 5 per day): 300
Cost per test strip: (before insurance) $1
Syringes used daily: 5-6
Infusion sites changed per month: 3-4
Amount of carbs consumed before having to get stuck again with more insulin: 25 (that is about half a peanut butter sandwich or 15 M&Ms)

Items that must be carried with the kids at all times in their insulin kits:
1) The kit bag containing all the supplies.
2) Calorie King guide to almost every food and how many carbs each contains.
3) Extra syringes
4) IV prep, alcohol swabs to prevent infection when giving injections
5) Writing tool used to keep a record of Blood Glucose and carbs eaten and insulin given.
6) Fast acting, bolus insulin. MH also has to keep her Basal Insulin with her.
7) Emergency Glucagon shot. If BG drops dangerously low and the individual is unable to take fast sugars orally, this shot chemically tells the liver to dump all the glucose it has stored into the bloodstream. It is designed to be injected through clothing into muscle. Extreme measure.
8) Glucometer to measure those pesky blood sugar readings.

-jeff