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

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.