Friday, February 6, 2009

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

1 comment:

David said...

Human words don't seem adequate. Just....I love you son. May God watch and protect you and your family.

Love,
Dad