Just being born

A while ago, I had a counseling session with a couple that made me evaluate myself. That happens a lot, you know. I think a good session works both ways, shaping the client and shaping the therapist. That is a good thing.

Anyhow, this client couple was in my office for a variety of reasons: marriage, communication, anger, infidelity, family of origin issues... you name it. Over the course of the hour, one phrase that jumped out at me was, "All I ever wanted to do was make my dad happy. Man, how I tried." I asked, "Did it ever work? Did you ever manage to please him?" The client thought about it and responded, "Well, he came to visit a few years ago and I think he was really pleased with what I've done." I may be reading too much into that reply, but what I *didn't* hear was very interesting to me. The client didn't say, 'My dad was proud of who I am' or 'He told me that he loved me'. He said that the Dad was pleased with what was done... What does it say about a person's identity to feel that one has to earn a parent's love? Part of me felt that the dynamic was all wrong. Perhaps that was just my adult sensibilities.

When I got home that night, all three of my kids attacked me when I got in the door. I had to beg them to quit hugging on me so I could set my things down and hug them properly. After bathtime, Ethan came running and stood on my lap (that is right, he was standing on my thighs). I made him sit down and said, "Ethan, I have a serious question for you. I want to know what you think you have to *do* in order for me to love you. (I put special verbal emphasis on the word DO)" Ethan thought about it for a minute and said, "Nothing. Just be born, I guess."

I don't know why any parent would want things to be otherwise. I'm glad that even at age 6, Ethan knows that he doesn't have to do anything to earn my love. He knows that I love him just because he is. I may get angry, I might be disappointed by his behavior or choices, but he doesn't have to *do* anything to make me love him and he is secure knowing that no matter what he does, he can't make me *not* love him. The same goes with Mary Hannah and Eleanor.

I believe that this is a glimpse into God's point of view that he sometimes blesses parents with: the gift of reminding us that he sees us much the same way we see our children. God loves us because we are his. Not only that, but he loves us much more than we can ever love our children. We had a role in creating our children, but God individually created each of us. Even more than that, he redeemed us, adopted us, sanctified us and restored us into relationship with him. We are greatly loved by our Eternal Father. How much more reason do we need to love others because they are loved by God just the same?

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.

As I lay dying

DISCLAIMER: This post may be disturbing to some. Reader discretion is advised


So, many of you know that I work as a hospital chaplain a few nights a week. In that role, I have been present, in the room even, with families as their loved ones have passed on. Sometimes, it happens quietly, as those assembled share stories and memories. The machines that monitor the patient’s vital signs display numbers that continue to fall until the only sounds are gentle sobs and hands rubbing on backs, offering comfort in grief.

I often get comments from people about how tough my job must be. “Man, I couldn’t do your job…” or, “How do you deal with being around death so much?” I usually reply something about how it can be difficult, but it has its own rewards. This is true, but each situation is unique. Some deaths really bother me. I hate the “failure to thrive” deaths on the maternity wards. Those are the worst for me. Next up are trauma deaths that involve an innocent party (mostly drunk driving ones). A lot of deaths that I get called for, I am able to focus my attention on the living. They are the ones that I am usually called to comfort. It is rare that the patient actually needs me. Most of the time, when I am called by the nursing staff because of an imminent death, the patient is so far gone that there is no interaction. I am called to comfort the family. That is a lot easier for me, interacting with the living. It is usually pretty emotionally charged and sometimes there are deep-seated family issues that pervade the room and stifle the grief, but those times are rare. All in all, I think I manage to walk a fine line between being emotionally involved myself and remaining calm and stable for the family. I usually manage to pull it off. I don’t lose sleep, but am able to climb back into my bed after being called out in the middle of the night with a peaceful heart, knowing that God used me to be his arms of comfort to a family in a crisis situation.

But last night, whew. I had a full fledged panic attack. It wasn’t even linked to any one experience, but I just couldn’t hold it back. First of all, I was really tired. It had already been a long day and I was getting ready to go to bed at about 2am (a typical bedtime for me, being a night owl). As usual, I went to check on MH and Ethan, to make sure that their blood glucose was in range overnight. As it turned out, MH was 70 (too low) and Ethan’s registered HIGH on the glucometer, meaning that it was over 600 (WAAYY too high). I woke MH up and gave her some juice and crackers to get her BG back up and woke Ethan up to have him check his ketones and drink some water. Then I had to stay up for another hour so I could check their numbers again. Anyhow, by the time I stumbled up to my bedroom, it was 4am. My mouth was really dry and as I lay in bed, I did that little trick to try and create some saliva in my mouth so I could get my palate to be comfortable. It didn’t work. It felt kind of the way it does when you have a cold or sinus infection and you swallow over and over trying to make things go where they should go, but you can’t get your mouth and throat to feel right. Am I making any sense? Anyhow, suddenly, I imagined that I was laying in a hospital bed, dying. Awake and aware, but unable to communicate that my mouth was dry. All my memories of seeing people in the ICU with tubes in their noses, BiPAP machines taped to their faces, mouths held open and gasping for breath as they struggled to get air into their bodies… they rushed into my head and I couldn’t stop myself from feeling terrified. My rational brain asserted itself and said, “Jeff, you’re not in a hospital. You can get up and get a drink of water.” But for some reason, I just kept lying there, waves of panic gripping me because I imagined myself with my hands in restraints in a hospital bed. Some patients get their hands tied down because they unconsciously pull at their IVs and tubing.

Again, I imagined myself as a person dying, tube in my throat, preventing me from talking or being able to close my mouth, the dryness in my mouth unbearably annoying and I, unable to slack the thirst, panicking. I couldn’t stop my brain from taking me into a scene where I was surrounded by people crying over me, but not really seeing or hearing me as I silently pleaded with them to get me some ice chips or water or something.

This lasted for about 5 minutes last night. I even sat up in bed and tried to get a grip on my overactive imagination. Finally, I was able to generate enough saliva to swallow and get my mouth feeling back to normal and the panic-y feeling went away. But for five minutes, it was terrifying.

Does this weird stuff happen to other people or is it a by-product of the hospital work? What do you think?

Thirteen

Thirteen is considered to be an unlucky number by some. In 1911, there was even a word coined to describe the fear that some people developed due to it's unlucky reputation. But I don't consider it to be unlucky. I'm not superstitious or anything, knock wood. In fact, 13 holds some pretty good memories for me.

For instance, when I turned thirteen, I asked for a Casio Databank watch for my birthday. It was SOOO cool. Not only did it have a calculator, it also stored telephone numbers. It even had a function to PASSWORD protect up to 10 telephone numbers. 'Cause, you know, a 13 year old has certain... sensitive... phone numbers he might want to... um... protect from... er... prying eyes who happened to have access to a device he wore on his wrist most of the time. Okay, so, in reality, it wasn't as suave and debonair as I first thought, but it was still a really cool (read: geeky) watch.




Anyhow, 13 holds no unfortunate connections, references or tidings in my mind. In fact, on July 6th, 13 will be a very happy number for me because it will mark the number of years that Amelia and I have been married. So, at the risk of being teased for my blogging, I present to you, my wife, and you, my readers: 13 lists of 13 things regarding 13 subjects that I spent at least 13 minutes working on so that 13 people might be impressed about the importance of this, the 13th anniversary of the date of my marriage to Amelia, which if pulled would destroy the world, the universe and everything in it.... whoops... wrong joke; seriously, I am thirteen times more determined to mention 13 exactly 13 times before I formally end this "thirteen" themed sentence than I was 13 minutes ago when I came up with idea for this love note to my wife of (almost) 13 years: Happy 13th, Hunny.

List the first: 13 things I love about being married to Amelia.
1) I love doing the dishes. Not all the time, not universally... but I love the fact that there is something that Amelia REALLY doesn't like to do and I can do it for her.
2) I love travelling with Amelia.
3) I love the clothes she buys for me so I don't have to shop.
4) I love playing board games with Amelia, even when my win/loss record for Boggle is 1/3 gajillion.
5) I love giving her massages.
6) I love snuggling and watching movies at home in bed with popcorn and M&Ms.
7) I love listening to her sing.
8) I love the fact that though she is probably vastly more intelligent that I, she still makes me feel smart.
9) I love how Am sticks her tongue out when she is really concentrating on something.
10) I love that she likes to scrapbook and has chronicled our life together over the years.
11) I love the memories we've made together.
12) I love the babies we've made together (!). :)
13) I love her tolerance of "Emery time", adding at least 30 minutes to any estimate that I give her of when I'll be through/ready/finished/home.

List the second: 13 phrases Amelia says
1) I love you, hunny.
2) Thanks for doing the dishes.
3) Come look at what I've scrapped.
4) The kids need new clothes.
5) Guess what Ele did today...
6) Pirate!
7) Nobody will play Boggle with me.
8) *sigh* I've got to get some laundry done.
9) (quoting the movie, French Kiss) "My ass is twitching. You people make my ass twitch."
10) (again with the quotes) "Fester, fester, fester. Rot, rot, rot."
11) Check your blood sugar.
12) What's for dinner? Shaddupandeatit.
13) I'm more comfortable than you are.

List the third: 13 items within reach of Amelia's bedside
1) The latest book(s) she is reading.
2) Tylenol, advil and at least three glasses that she's brought to bed but neglected to take to the kitchen the next morning.
3) M&Ms or some other candy.
4) The TV remote
5) Kleenex
6) (at least overnight 80% of the time) one of the kids, sleeping on a palette on the floor.
7) A flashlight
8) Massage lotion
9) A lamp
10) Decorative pillows that adorn the bed on the rare occasions it actually gets made up.
11) Debris from pockets that have been turned out when she's changed clothes.
12) Her glasses
13) Her hunny. :)

List the fourth: 13 things Amelia likes to do.
1) Travel
2) Watch certain movies in the background while doing something else
3) Scrapbook.
4) Spend time with good friends
5) Bake
6) Decorate (and eat) sugar cookies.
7) Spend quality time with the kids
8) Voraciously read.
9) Correct grammar. :)
10) Play board/card/dice games.
11) Be involved with meaningful activities: School supply drive; teaching Bible class, charity work.
12) Mixed Martial Arts.
13) Sleep.

List the fifth: 13 things Amelia doesn't like
1) Bad grammar
2) Doing dishes.
3) Working all the time so that she has no time to do other things.
4) Having a headache all the time.
5) The unfortunate reality that the laundry is never done.
6) Times when children's fussiness overextends her patience.
7) Diabetes
8) Milk
9) Late fees for library books.
10) The way in which it only takes 13 nanoseconds to messify a child's room she just spent hours cleaning and straightening.
11) Administrative bureaucracy
12) Nasal congestion
13) Not having her hunny at home.

List the sixth: 13 places Amelia has been with Jeff
1) Rome, Italy
2) Kress, Texas
3) North Platte, Nebraska
4) London, England
5) Plainview, Texas
6) Denver, Colorado
7) Enid, Oklahoma
8) Cloudcroft, New Mexico
9) Paris, France
10) Lubbock, Texas
11) Eindhoven, The Netherlands
12) Kaiserslautern, Germany
13) Innsbruck, Austria

List the seventh: 13 jobs Amelia has performed (for fun or for profit)
1) Wife
2) Mother
3) English Teacher
4) Burger King worker
5) Bible class teacher
6) Classified Ads sales star
7) School Supply Drive coordinator
8) Retail sales manager
9) Office Supply store worker
10) Youth Minister (I was only the front man, Amelia did lots of the behind the scenes support work)
11) Editor
12) Graphic designer
13) Supermodel - seriously... ask to see her portfolio

List the eigth: 13 Memories I have of our wedding day
1) Heat (It was July 6th in Texas, after all)
2) The Sherriff looking for the escaped prisoner.
3) Corn Dog breath
4) My best man and little sister, in collusion, supergluing the ribbons tying the rings to the pillow so they wouldn't come undone easily.
5) My nephew stowing away in our getaway car, forcing us to drive back and dump him in the parking lot.
6) Losing my breath at the sight of Amelia entering the room.
7) Writing our own vows and having Amelia try to insert my promise to continue to love her..."In floorings and in wall coverings"
8) Rikki Lane fixing us a "to go" basket because neither of us got to eat at the reception
9) Being skinny *sigh*
10) Tuxedo mix-ups
11) Phil crying during the ceremony.
12) Using Dad's ring during the ceremony (mine was stuck on the pillow, remember?)
13) The kiss

List the ninth: 13 pictures of Amelia I happen to have on my hard drive right now.
(it was easier to upload the pics and insert a slideshow here of 13 pictures)



List the tenth: 13 gifts I wish I could give Amelia
1) A trip to the Great Barrier Reef. I know this is on your bucket list
2) A new wedding ring (with some sort of insurance against accidental loss)
3) A operating budget at work. I know you would do even more amazing things, given the resources.
4) A surprise party with all her favorite people from all the corners of the world.
5) A cure for Diabetes
6) A lifetime supply of Reese's PB Cups
7) All the cool scrapbooking toys she wants.
8) A house to decorate and live in.
9) Maid service
10) A new(er) vehicle
11) A laptop
12) Extra time in her day so that she can do what she *wants* to do.
13) A trip to San Antonio with her favorite husband and kids. (1 out of 13... whew).

List the eleventh: 13 hats Amelia wears at work
1) Assistant Manager
2) Web master
3) Receiver
4) Stocker
5) Cashier
6) Accounts Receivable
7) Opener
8) Closer
9) Graphic Designer
10) Special Order Clerk
11) Bible imprinter
12) Underpaid, under appreciated employee
13) Special Events organizer
(Yes, I know that other people work there, too... but Amelia is pretty amazing with all the hats she wears there.)

List the twelfth: 13 things Amelia does in a typical day.
1) Showers
2) Checks the kid's blood sugar and administers insulin
3) Cooks a meal
4) Works an 8 hour (at least) day.
5) Mixed Martial Arts workout
6) Reads to relax
7) Laundry
8) Runs to Wal-mart (sometimes multiple times a day)
9) Organizes some extra-curricular activity (bible class, scrapbooks, plans for the kids to do something, etc)
10) Wears cute socks
11) Checks her email/facebook/jde95f.blogspot.com :)
12) Tells me, "I love you, hunny."
13) Falls into bed, exhausted but able to read just a few chapters in a book.

List the thirteenth: 13 Web links that Amelia likes (and you might enjoy, too)
1) http://www.failblog.org
2) http://www.facebook.com
3) http://www.theonion.com
4) http://www.aes.acu.edu
5) http://www.hulu.com
6) http://cakewrecks.blogspot.com
7) http://comics.com/pearls_before_swine/
8) http://www.aslpro.com
9) http://graphjam.com/
10) http://www.jdrf.org
11) http://www.acu.edu
12) http://www.bartleby.com/
13) And a good way to round out a list of 13s, a list of websites and the theme of love: (CLICK HERE)

So, as you sit and wonder what possessed you to read such a long post... as you ponder what possessed me to compose such a mash-up of lists... know this:

I LOVE AMELIA. With all I have, with all I am... for the past thirteen years and for a lifetime to come. Happy 13th, hunny.

-jeff

On Being a Father

It is Father's day. A day of tie-gifting, card delivering and general grilling utensil accepting. Have you ever heard the saying, "Momma ain't happy, ain't nobody happy"? Well, the lesser known corollary is, "Daddy ain't happy, ain't nobody care". Father's day always seemed to be a holiday created to give some level of balance to Mother's having their own day the month previous.

I don't want to sound too cynical, because despite it's beginnings, I look forward to it. I've been a father for 8 years now and I hear it only gets more difficult/rewarding here on out! Here is a list of things men should be aware of before becoming a father:
*Kids are one of the major causes of gray hair.
*Childrens' need for attention rises in inverse proportion to the level of interest you have in what you are doing.
*In addition to those happy times of piggy back rides at the zoo, videotaping 1st birthdays, and attending recitals, there are also times of cleaning up vomit from the carpet just outside the bathroom door, trying in vain to remove a deadly splinter from a foot after telling him 10 times to put on shoes before he went outside, having to administer an antiemitic in suppository form because they can't keep down the liquid.
*No matter how weird it may sound before you take on the title, your favorite name will be Daddy.

I've been called lots of things (to my face, and probably lots more behind my back), but my favorite name is Daddy. I love my children unashamedly, without reserve, to the point my heart feels on the verge of bursting from the love it contains. If you want to get in good with me, really fast... dote on my children.

Being a father has been my greatest adventure. My children teach me things every day. One of my daily lessons is invariably patience, a subject I fear that I must continually learn. If you want to know how you are, look at your children. They reflect you. I'm glad to say that my children are fun to be around, kind and generous to others, helpful and creative, silly and yet profound. On the other hand, they all tend to have their moments of whining, disobedience, disrespect, and stubbornness. Maybe I need to rethink my assertion....

I don't think everyone is cut out to be a father. Anyone can have a child, it is shockingly easy to do. Being a father is a task on an entirely different level. Being a father requires a man to be at once both loving and stern, level-headed and impulsive, authoritative and collaborative, flexible and unyielding. Knowing when to exhibit which trait is sometimes difficult.

Being a father makes me appreciate my own parents a little more. It has been said that the only curse that truly takes is, "I hope you have children that are just like you!" Not that I was a handful. No, I was an angel, a piece of cake, no trouble at all. Just ask my parents, they are the ones in the corner of the rubber room in the tight white jackets. All kidding aside, it is a really tough job at times. However, God has graced most parents with the ability to let the trying times fade and focus on the moments of joy.

In a drawer upstairs, I have one of the gifts I was given on a past father's day. It is a cardstock tie, cut to size and colored with green crayon (my favorite color) and decorated with random stickers. It was attached to a piece of elastic band so it could be worn. Being a father means that you wear the cardstock tie to church Sunday morning. I got more compliments on that tie than any article of clothing I've ever worn.

Being a daddy means that I'm going to be really sad the day that Ethan figures out that boys don't kiss boys. I'll miss his "kiss attacks".

In my wallet, I have a paper cutout of a key. Mary Hannah was tracing things one day and she cut it out and gave it to me. I asked her, "What is this for?" She answered, "It is the key to my heart, daddy." It is one of my most treasured possessions.

Eleanor has a spring loaded bed. I mean, she must, because she is up and out of it so many times each night, it has to be the answer. For all the frustration with getting her to go to bed and stay there, I am convinced that she gets her night-owl habits from her daddy. Some nights, after she's managed to get to sleep and then is woken up by some trifle, instead of sending her right back to bed, I'll enjoy a cuddle in the chair in the living room. Ele is the best cuddler. It takes one to know one.

Newsong has a number that connects my role as father with my relationship with God. It is called, "Your favorite name is Father". I linked a YouTube video. Check it out.









Here are some things I do with my kiddos that make me happy:
wrestling on the floor*playing on the Wii*jumping on the trampoline*coloring pictures*making French Toast*going out for Sno-Cones*running errands*hugs and kisses*combing hair after bathtime*taking pictures*shopping for mommy*singing in the car*playing in the sprinkler*reading nighttime stories*giving piggyback rides*wearing matching clothes*playing tag*being appreciative of their crafts*listening to their stories*making them laugh*cleaning out the car*taking road trips*sitting down at the dinner table with them*getting help with household tasks*picking out flowers*attending their school activities*arranging for playdates*getting haircuts*surfing the web*more hugs and kisses*


Fathers: Enjoy this day, but remember to enjoy everyday. Being a daddy is the greatest job in the world.

-jeff

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.

Cinderella

So, the other day, Eleanor got a chance to go to the Ballet with Nana and Papa. She had a special dress that she wore and had a great time experiencing "Cinderella" Thanks, Ballet Abilene!


The next day, Ele wore her dress to church and afterwards, I got her to pose for me outside. Enjoy the photos. She is my wonderful princess.

Narcissism, Celebrity Apprentice and Me.

Recently, I read a humorous story in Time magazine by Joel Stein (LINK). It got me thinking a little about how self-involved we all are, and what part society plays into this phenomenon. Dr. Pinsky's results indicate that celebrities are more narcissistic than the general population. So, do they influence us to be more narcissistic or do we feed into their narcissism?

This got me thinking about reality shows where, despite the labeling, reality is not displayed. Between behind the scenes manipulations and producer's wrangling of the circumstances and the editing process to play up the drama and tension, I doubt we get much of a sense of the "real" person, even on reality shows. This past week's Celebrity Apprentice (LINK) was a great example of the product of narcissism in celebrities. While I have to give Joan some credit for her turnaround in her behavior toward Clint Black, her initial responses toward ANYONE that she doesn't like are grounds for dismissal if she weren't a celebrity. Her name-calling and visceral personal attacks are unwarranted and immature. Melissa Rivers seems to have been burdened by some past experiences in High School and I agree with her assessment of being blocked out by Annie and Brande, but c'mon..... how personally are you going to take that?

If you can't take losing at least as well as Andrew Dice Clay or Rodman... well, Melissa, you deserve the public lashing you'll take for your behavior. NOW..... back to the narcissism discussion... do my remarks feed back into how we "socialize" our celebrities to make them narcissistic?

Here are the DSM Criteria for Narcissistic Personality Disorder:

A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:

1. has a grandiose sense of self-importance
2. is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love
3. believes that he or she is "special" and can only be understood by, or should associate with, people (or institutions) who are also "special" or of high status.
4. requires excessive admiration
5. has a sense of entitlement
6. is interpersonally exploitative
7. lacks empathy
8. is often envious of others or believes others are envious of him or her
9. shows arrogant, haughty behaviors or attitudes

I think I've witnessed at least 5 of those criteria in ALL of the Celebrity apprentice contestants at one time or another. Freud would have a field day with this crowd. And the king of them all: The Trump. Thanks for a fun, show, boss.

Take the Narcissistic Personality Inventory! Post in my comments how you did!

(I scored 14)

-jeff

In Memoriam: processing the death of a friend.

Meagan Len Holder, 1991-2009, 17 yrs

Last Thursday morning, I was making breakfast for the kids when I got the phone call. One of my kids from Gorman (a youth group I'd worked with)had been in a car wreck. She'd died en route to the hospital, in a medi-flight helicopter. I was not able to really process the information. I thanked Mr. Laminack for calling and letting me know and then I went back to cooking eggs.

Shock

That is the process by which your brain protects you from emotions that threaten to overwhelm you. Learning of the death of a loved ones typically triggers it. Over the course of the day, I began to absorb the enormity of the information. Meagan is dead. I began to go over memories I had of her. To be quite honest, I hadn't seen her for a few years. My contact with her had been limited to a few online chats or instant messages on MySpace. I knew she was excited to be a senior and was looking forward to graduating. To learned she'd been killed in a car accident... wow...

Later that morning, I got a call from her father. Despite the past 4 years of working as a chaplain at the hospital and the hundreds of families I had walked with during the final hours of a loved one's life... I didn't have any words for him. Our conversation was short, he asked me if I would be willing to speak for her at the funeral. I agreed and he said he'd let me know the details as soon as they got her body back from Ft. Worth.

In the midst of all of this, I looked to my oldest daughter, Mary Hannah. 7 years old (almost 8!). In 10 years, she will be 17, on the cusp of adulthood, ready to strike out and blaze her own trail. The following day, Friday, I was sending her with her grandparents to California. They were going to meet up with their cousins for a day at the beach and a few days at Disneyland, the ultimate memory making trip. Nana and Poppa had been planning this for months and although we were initially reluctant (a bit jealous, maybe) to let her know, we knew she would have the time of her life. This day, though, my thoughts were only on picking her up from school and holding on to her with all my strength.

I think losing a child to illness or to some random tragedy is perhaps one of the most difficult things a parent can experience. It feels more acute if you lose a child when they are young, but losing a child at any age, infant to adulthood, just feels wrong.

The funeral was very well attended. It seemed like most of the town of Desdemona, where Meagan was born and grew up, and De Leon, where she attended high school, had turned out. Many of Meagan's friends honored her by duplicating one of her trademarks: boots with the leg of the pants tucked in. Stories were shared and memories affirmed. Meagan will be missed by her friends. She'll be mourned by her family. Nothing will ever be the same for them, but in time, it will be okay again. Death does that. Here are links to her obit: CLICK HERE and to the Eulogy I delivered: CLICK HERE.

After the interment, I was waiting patiently as people came by to shake my hand and thank me for speaking for Meagan on behalf of her family. My phone rang, vibrating impatiently in my pocket. Stepping away from the funeral crowd, I saw it was my daughter calling on Poppa's phone. "DADDY! I'M IN THE OCEAN!" Without waiting for me to say more than, "hi", she shouted at me over the roar of the surf. She's never been to a beach, much less the Pacific. She told me about seaweed as big as she was and sand castles and waves and getting saltwater in her mouth. I managed to get in a few questions and exclamations before she signed off, "I gotta go, Daddy. I can't hold the phone because I'm all WET!" And then she was gone. I was smiling again. Until I turned around and saw the coffin, waiting for the crowd to leave so it could deliver it's lone passenger to her grave.

I walked back over to the Holders and asked, "Are y'all about exhausted? I'll bet you're tired of everyone telling you how sorry they are. No matter how sincere and well meaning they are, there comes a point in your grief where you really just wish everyone would love you from over there." Donald Wayne nodded. Stephanie thanked me for the eulogy and I gave Jeremy a hug. Then I took my own advice and took my leave of the family.

The drive home took an hour or so and I listened to music on my iPod. I called a girl from my Enid youth group who is also 17 and about to graduate because I felt melancholy. We chatted for a few minutes until I lost the cell signal. When I got home, Ethan and Eleanor ran to greet me at the door. "Daddy! You're home!" I wrapped them up in a big bear hug and smiled.

Meagan is still dead.

I'll be okay again soon.

St. Patricks Day poem for ya

The Wish

I caught a little leprechaun,
quite wise and very old and he said to me,
"You have one wish,
would you like my pot of gold?"

"No thank you," was my quick reply,
"But how about another...
A gift that's truly precious
and esteemed above all others?"

He offered then some emeralds,
rubies, sapphires, pearls
and a host of other treasures
that would make your senses whirl!

As I rejected all his list
his bright eyes flashed with fire
and, angrily, he said to me:
"What is it you desire?"

I said:

"A rainbow's far more beautiful
than its' supposed treasure
and the 'rainbow' that I'm wishing for
is priceless beyond measure.

"I'd like to have the dearest friends
a person ever had
to share in all the good times
and help me through the bad...

"To laugh and sing and joke with,
love and appreciate
as we live life's greatest adventure
that would certainly be great!"

"Oh, now I know you're daft!" he said
as he ran off with his pot...
"to waste your wish on something
you have already got!"

~Author Unknown~

retrieved from: This Website

-jeff

Celebrity Apprentice

I'm not a huge fan of the reality show genre, but I took notice of a promo for Celebrity Apprentice. What caught my attention was the personalities represented on the show, most notably Andrew Dice Clay and Jesse James. Clay represents, to me, a very low class form of entertainer. Not only do I dislike his humor, but his personality. So, I was very pleased to see he was the first celeb to be "fired" by Mr. Frump... er... Trump.
Jesse James, on the other hand, is married to Sandra Bullock. That is one point in his favor. Also, although I haven't watched his show, I have been very impressed with him on CA. He seems to have hidden strengths and I am interested to see how he'll do as Project Manager when his time comes.

What I haven't been impressed by on the show is the absolute chaos that ensues from each team during their projects. I am really surprised that they all are so conflictual. Very few of them seem to be able to communicate and almost all of them have self-images that are over-inflated and just waiting to be punctured by the Boss. Seriously, aren't everyday people able to talk in reasonable tones and without all the conflict or do I just live in a fairy tale world? I know that this show is 90% about ratings and entertainment, but I think it is also a remarkable social experiment putting the result of Hollywood-centric personalities in the spotlight.

For those of you who have watched the first few episodes, here are some observations:
1) I like Annie. I think she is quite possibly the best person on the Athena team. Joan Rivers carries her own self-importance as though she is afraid of breaking it.
2) I think that in the end, a female is going to win the overall competition. Team KOTU has too many disparate personalities. Despite his annoying manner and the conflict he created during Episode 2, I think they lost something in terms of creativity when Tom Green was fired last night.
3) I wonder how well the Donald would fare if he was put into his own messed-up reality program. He's done well by society's standards, but he seems to lack the same qualities that he flogs his contestants for not having.

Interesting. I look forward to seeing how the season progresses.

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

Weirdo

I remember when we moved back to Texas after spending about 6 years in Europe, moving with the Air Force. Our most recent post was in Kleine Brogel, Belgium. It was 1989 and apparently, the only memorable thing about me was that I'd recently lived in Belgium. So, my nickname at school (for a while at least) was Belgium Waffle (they didn't even say it right, it should have been Belgian Waffle). It took a while to make friends because I was not only the new kid, but I was different. In the DoDD schools, everyone moved around a lot and being the "new" kid in a class wasn't different, it was normal. Being back in the States was quite a paradigm shift for me.

Today, when I picked up Ethan and Mary Hannah from school, MH was glum. Usually, she is running around the front area, playing tag or hide and seek or looking for interesting rocks or something with other kids who wait for rides. Today, she was standing alone and looking pretty obviously miserable.

Me: What's wrong, baby?
MH: Nothing.
Me: Well, when you have a frown like that, it usually means that you're sad about something.
MH: I made a mistake today.
Me: A mistake?
MH: Yeah.
Me: What mistake, honey?
MH: I'm such a weirdo. I was picked to hand out the construction paper and I picked up the markers instead.
Me: Did you go back and get the paper and hand it out?
MH: Yeah, but I felt like a weirdo.
Me: Making a small mistake makes you feel like a weirdo?
MH: Yes, everyone was looking at me all weird.
Me: Did someone call you names because of your mistake?
MH: No.
Me: Help me understand, sweetie. Why did that make you feel like a weirdo?
MH: I don't know. I just felt weird.

Now, all along in this conversation, I knew that something was not as it seemed. MH's ego strength is better than letting a little mistake like that get her down.

Me: Mary Hannah, I'm wondering if there is something else that is making you feel like a weirdo in front of your friends? Maybe something besides handing out paper and markers.
MH: (in a small voice) my diabetes.
Me: It makes you different than everyone else?
MH: Yeah. No one else in my class has diabetes.
Ethan: (trying to be helpful) No one in my class has diabetes. I'm not a weirdo (said in an annoying voice only a younger brother can muster).
MH: (amending) Okay, so my brother has it.
Me: Hush, Ethan. MH, you feel weird because you have diabetes? Do your friends keep asking you questions about it?
MH: Some.
Me: That sets you apart from everyone in a way, doesn't it?
MH: Yeah.
Me: Well, I'm not going to tell you that you won't feel a little weird. That is part of the process, but you won't always feel weird about it. You'll get to a point where it is just normal, everyday stuff for you. So, yeah, you'll feel a bit like you are different from everyone else in this way, but you shouldn't ever feel badly about it. You didn't choose this. If you woke up one morning and decided to wear green stretch pants, a polka-dot shirt and dye your hair orange and spike it and call yourself Ms. Stupendous.... then I think it would be okay to call yourself weird.
MH: (giggles)
Me: But you didn't choose this, it just kind of happened. So, it will make things different for a while, but you shouldn't feel badly about it, k? Feeling a little weird for a while is normal. Feeling bad about it won't help anything.
MH: Okay.
Me: Okay. Give me hugs, baby doll.
MH: (hugging me) Can I have a fudge round for snack?
Me: *sigh*

So... I was sitting here thinking about my baby girl and all the emotional turmoil she's going through and I remembered how I felt different, too. However, our situations are light years apart. I was moving into a new community and had to make a place for myself. Mary Hannah is among established friends and her status has now changed. I had to find a niche and adapt myself to a new location. Mary Hannah has to redefine herself in terms of her disease and reestablish feelings of normalcy with her friends. I don't fault the other kids in her class for any of this at all. In fact, MH was so worried about this whole mess that Amelia and I went with her to class on Friday morning, the day after her first visit to the Pediatric Endocrinologist. We fielded questions about diabetes from the class. They asked some great questions (Can we catch it? Will she ever get better? What will happen to her? Will she die like my grandmother did?) and were great about listening and absorbing the information we gave them. After about 1/2 an hour, we were gathering up our stuff to leave Mrs. Miller's 2nd grade when three of MH's girlfriends jumped up and bear hugged her. That made my day. They are all good kids and I know it is going to be alright. But I'm her daddy. And right now, I feel a little bit like a weirdo, because I can't help my baby.

-jeff

Home again... thoughts on our situation.

So, here is the update you've been asking for regarding Mary Hannah's condition:

Physically, she's fine. We have insulin and all of the associated paraphernalia. In fact, she got a whole lot of cool stuff from the makers of different diabetes equipment. Here is a partial list of some of the items she was given today at our "Diabetes Education" meeting:

Rufus: the bear with Diabetes
A pink One-touch glucometer
A JDRF/Accu-Check backpack
BD getting started Take home kit
A freestyle touch lighted necklace
a pink camouflage carry case for her insulin supplies
two copies of the Calorie King nutritional guide
Several children's books about being diabetic
...and lots of other stuff

The meeting itself was pretty smooth. The Diabetes Educator (DE) recognized that we knew most of what she was supposed to go over and told us just to stop her if we needed to refresh on any particular item. One thing that we did discover (and somehow missed before) is that when ketones are high, we should treat them with water, continues insulin and inactivity. That seems counter-intuitive because exercise causes blood glucose to drop, generally. But when you are already battling high ketones, exercise exacerbates it because ketones are a by-product of rapid fat usage by the body. So, the more you exercise, the more fat is being burned and the more ketones you are introducing. So, the next time the kids have moderate to high ketones, no karate for them!

MH did well almost the entire trip. She did great getting her Lantus shot in her tummy and her finger sticks all day whenever we needed to. She has revised her position on how much it hurts ("It isn't as bad as I thought..."). Humalog shots in her arm are handled with breathing out as she gets the injection. She even tried to count all her carbs at lunch (A bean burrito, chips and queso and sopapillas). She was glad to see Grammy and Steve, who drove from Enid to meet us for lunch. All in all, a nice trip. Except for the fact that HAVING DIABETES SUCKS.

During down time in the car, MH wrote in notebook:
MH: Why did I have to get diabetes?
Amelia: I don't know, baby. I wish I had a good answer for you.
MH: Me too, Mommy. Not fair! Not fair! Not fair! Not fair! Not fair! Not fair! Not fair! Not fair!
Amelia: You are right. It is not fair. And it is O.K. to feel that way. But at some point you will need to accept it and do your best to deal with it and take good care of yourself. I love you and I am proud of you.
later, she wrote:
MH: I don't want shots, Daddy. It's not fair! I wish I didn't have diabetes.
and then, in large letters on the rest of the page: IT'S NOT FAIR!!!!!!

On the drive home, she started sobbing uncontrollably. In retrospect, it was probably a mini-panic attack or anxiety attack, but she wasn't making any sense and couldn't stop crying, even for a moment. I got out her glucometer and tried to get a reading to see if she was having a low blood sugar moment, but after three tries (her fingers didn't bleed very much and the meter was acting funky, I got very frustrated and Amelia ended up having to take over and get it done) we finally got a reading. She was over 500 mg/dl. So, we gave her some more insulin and then I held her for almost 10 minutes in the chilling wind beside the car as she sobbed. She was thinking about having to go back to school the next day and was worried about how her friends would react. What would she tell them if they have questions? What if they didn't want to be her friend anymore? What if they got grossed out because she had to stick her finger and check her blood everyday? What if.... what if... what if....

My poor baby.

I know in my head that this will all be okay in the end. Diabetes is a chronic, incurable disease, yes... but... it is very managable and treatable. I know that with few exceptions, she will have happy, healthy, normal life experiences. But as her Daddy, I grieve, I hurt, I ache for the things she'll have to put up with that other people just don't understand. Four years ago, I went through the same emotions with Ethan. But we had come to terms with his condition. We'd taken solace in the knowledge that for all practical purposes, he's never known anything different for himself (he was diagnosed at 18 months). We'd found our "normal". Things weren't the same, but they were okay.

On Tuesday, before we went to the hospital, I was having anxiety because I feared that Mary Hannah did have diabetes, but I hoped, I prayed that we were wrong. When the doctors confirmed the diagnosis, my heart broke. Shattered. All the feelings, fears, worries and anxiety that came along with the diagnosis came rushing back. Is this how cancer patients feel at checkups when they find out that their cancer has returned?

My faith reminds me that God is close to the brokenhearted (Ps. 34:18), he saves those who are crushed in spirit. I don't doubt that God is present and hurting along with us. But my faith is at war with my feelings. I have the same questions that Mary Hannah has: Why, God? Why her? Why our family, AGAIN? I have joked before that if God doesn't give us more than we can bear, then he must have a pretty high opinion of us... but I am not in a joking mood.
I'm not looking for solace here. There is no need to comment on how God is good and he will take care of us. I KNOW that.... I'm just venting. I'm told by experts in the field that this is healthy. God is big enough to handle my anger.

Mostly, after several days, I'm worn out. I want every one to be as upset about this as I am, and although I'm comforted at the response of so many people (from close friends and family to obscure people I don't remember adding as friends on FB), part of me is shocked to see how life seems to go on as normal for everyone around us. I have to give a lot of thought about how to answer people who ask how we're doing. Do I give them a full answer with technical details they will neither understand or care about or do I thank them for their concern and give them the Reader's Digest/Sunday Morning answer? That is not to say that anyone is insincere or that I am being rude by saying that most people won't understand. It just is how it is.

Tomorrow, we'll wake up and do what needs to be done: check the kids' BG, feed them breakfast. Cover their carbs and give the appropriate shots. Make their lunches and label the food items with their carb content. Make sure they have emergency supplies to carry with them at all times. Over the course of a typical day, Ethan and Mary Hannah will prick their fingers 4-5 times to make sure they have blood sugars in the proscribed range. Ethan has a pump, so he can just press buttons to deliver his insulin, but MH will have to learn (eventually) to measure out the appropriate amount of insulin, not too much and not too little, inject herself and get back to being a "normal" little girl without being embarassed or ashamed by her condition.

Again, I know, I know there are so many upsides to this situation. It could be worse. Amelia pointed out that at least, we have the *same * chronic illness between the two of them. Just so you don't think I'm sliding into the pit of despair, here is a partial list of all the ways that God has blessed us in this situation:

- we recognized the signs and caught it before she went into a diabetic coma
- it was MUCH less traumatic than Ethan's diagnosis
- MH is bright and smart and is dealing with it as well as can be expected
- We have the supplies on hand. We didn't even have to go to the pharmacy. We had syringes and insulin on hand from Ethan's backup supplies
- We are probably some of the most well educated and prepared parents for this circumstance.
- God has surrounded us (and continues to) with a support network of family and friends who shower us with concern and care and tangible help in the areas we have needs.
- We have jobs that are flexible to allow us to respond.
- We have insurance that helps us cover the medical bills
- We know the best Pediatric Endocrinologist around and they set us up with an appointment the next day. Ask other Abilenians about their DX experience.

I could go on, but you get the point. I know and recognize God's goodness in the midst of our broken-ness. But my heart still hurts for my baby. My babies. I pray that God will continue to help us in the stewardship of these precious gifts as we strive to live for him.

*sigh* it is almost 2am and I have a long day tomorrow... Night, folks. Thanks for your prayers.
-jeff

Diabetes update!

Mary Hannah says, "Thank you for the comments about me trying to get better. I read all of Daddy's notes on Facebook and this blog. Lucky Bear says 'thank you', too."

I've posted a few pictures from last night. The latest update (as of just a few minutes ago) is: our Doctor has coordinated with the Pediatric Endocrinologists at OU Children's in OKC, which is where we take Ethan for his checkups. We've got some preliminary numbers for how much insulin to give her, so we're set until we can have an actual visit. They want to see us tomorrow at 1pm, so it looks like we'll need to do some schedule shuffling, but we'll make it. Thanks for your thoughts and prayers. We love you all and are very much feeling your concerns and love flowing our way.

Kissing my baby.

Oma was driving home from Dallas and came straight up to see us.

Matt graciously let us borrow Heather, who provided moral support and Tacos.

MH got to play on the laptop and update her Webkinz. Lucky Bear kept her company the whole time.

MH was in remarkably good spirits after getting her IV set up.

Heading home after a long afternoon. Life keeps going.