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.

Again?!? C'mon, God!

So, we're in the hospital again. It is 9:20pm on Feb. 3, 2009. We've been here since about 6:30pm. It is issues with diabetes, but the patient this time isn't Ethan, it is Mary Hannah. In retrospect, we've seen the signs over the past week. She's been drinking a lot, going pee more than normal... I noticed her breath was stinky-sweet and commented on it the other day. But again, we wrote it off to her being sick recently. However, yesterday, MH started complaining of some unusual things and Amelia got nervous and we questioned whether we should check her blood sugar. Part of us didn't want to check because we thought we might be overreacting because of our experience with Ethan. But, we ultimately figured that it was a small price to pay to make us feel a little less anxious by assuring us that there was nothing wrong with her blood sugar.
So, this afternoon, I got out Ethan's glucometer and we all checked our blood. Mine was 104 (normal adult BG is 80-120). Nana's was 119. Ethan was running pretty high at 440, but I gave him some insulin from his pump and he was good to go... then I checked Mary Hannah. Her blood glucose was 494! Amelia checked her later this evening and it was only down to 414. So, we brought her to Hendrick and they confirmed our fears. MH has been super brave and they've got her on a saline drip to help flush her blood out and get her BG back to normal. Tomorrow, I suppose we'll get with her doctor and start working on a plan to get her on an insulin regimen. Thank you all for your concern. Medically, MH is fine and we know how to deal with diabetes... but emotionally, we're kind of reeling. We've come to terms with Ethan.... but ... man.. this sucks. More ranting/venting later. Keep us in your prayers. We love you all.

-jeff & am