Wednesday, February 18, 2009

5 Months and Counting

So, it's been 5 months since her Diagnosis (March 6th will be the date)! It feels like almost second-nature now, yet, was such an uphill battle for the first few months. I thought I'd share a little more about where we are and what day-to-day sometimes looks like. I hope it doesn't sound like complaints or redundancy, just a process.

As I've written before, the day-to-day details can be so overwhelming at first. I was afraid I seemed dramatic to people at times, that I was so concerned for her very life. I would hear, "Diabetes is manageable." Or, "I know someone with Diabetes...they're fine." Which was, well, the truth, yet not what I could talk about at the time. To say it's manageable sounded like it was easy to me. That may not have been the intention, but, it certainly isn't easy. There's never a day off, or a time you can just be lazy about it. Every morsel counts. When I have let her have a few extra carbs just because she wanted a little more and I didn't want to have to give her a shot, her blood-sugar has always been high later. So, it is not something that can be fooled around with or taken lightly.

To be clear, blood-sugar that is over 200 can begin to take it's toll on the body, attacking key organs, like the eyes and kidneys. A healthy child and adult tend to run between 70-120. A diabetic child should be between 80 and 180. The guessing game as to ratios (how much insulin per number of carbs for each meal), and figuring in whether she's exercising enough for her current blood-sugar, or too much, or should have a snack for that level of activity, gets exhausting at times. Factoring in mood swings: Is this just normal 5-year-old dramatic behavior? Is this high or low blood-sugar behavior? Is this grieving over her situation or outside circumstances? Yeah those are fun questions to answer.

Another struggle is not feeling like we have much freedom to leave her with anyone. 3 small children is a large enough load on any given babysitter. We have let our favorite teen-sitter watch her for a couple of hours where no shots were needed. I also dropped her off at our co-op one day when I needed to take Norah to the Dr., and one of the mom's who's a nurse gave her the lunchtime shot and all went well. So that felt good. But, suffice it to say, it's not a quick learning-curve for any of us. The other day I had to leave Joe with all of the girls while I helped with a baby shower and was gone several hours. He had to feed them lunch, and take them to a birthday party and figure out carbs on cake cones and give appropriate shots. He's not afraid to do any of it and is more than happy, but had to call several times to make sure he had all of the correct assumptions and ratios. He was wonderful, and I was grateful for the morning away, but it solidified that even 4 months alongside this process, can still make him feel very uncertain about what's "right." So, it's hard to imagine in the near future having much time away. Before October 6th, we had planned on taking a trip for our 10-year anniversary this coming October, but for now are hoping to take a family trip instead.

Don't hear that as a complaint. I'm very happy to be taking care of Sophia and I have peace about her future. It's not a forever sentence that we won't go away alone. We're very content with a family vacation for our anniversary, it would be a true reward. Even that seemed impossible a few months ago. We couldn't imagine all of the eating out and the planning it would take. I hear life gets easier on a pump, which she should go on in another month. The pump automatically dispenses the insulin in very exact amounts, and the injection site is changed every few days, but she won't need daily shots (for the most part). I've watched a friend of ours on the pump, and you don't even notice when he's dispensing insulin, and he's of course been estimating carbs for most of his life, so it's much easier to guess. It is astonishing to see him guess so easily. We still have a long way to go to be where he is, but he's got about 20 years on us.

The other aspect that I've barely mentioned, which contributed to the "uphill battle", was the extreme angry behavior that she had. I couldn't even talk about it for a while, but in case this ever helps someone someday, I think I can now. She was traumatized by it all, I believe. For the first few weeks we treated her like she was sick, which in our house means lots of pampering and tv time, and no schedule, and "you're the special one." Then I suddenly realized I couldn't obsess over her every moment of the day and had to get back to "normal." I couldn't let the other girls think Sophia's needs always trump their's. We couldn't watch that much tv. And we needed to stop letting her think of herself as "sick." Now, she is definitely brave, and a superhero, but sick is not how I want her to view herself.

So, Momma turned off the tv, and put limits on our behavior and started holding her accountable again. (Oh that was the other thing, she was getting away with everything, because I thought maybe she couldn't help it all because of her blood sugars). Now there may be some truth to the fact that it is much harder to control anger and irrational behavior and feelings when your blood-sugar is rapidly changing. However, we had to teach her to cope, and to believe in her ability to "help it." Because, if I heard "I can't help it!!" one more time, I was going to have to quit my job. Just kidding.

All that to preface the fact that Sophie didn't react well to the changes for a couple of months. She started using physical force against me, and saying I hate you! (Which, I really didn't think I'd hear until she was at least 13!). She was suffice it to say, out of control for most of the day every day for a couple of months. It was depressing. I could barely talk about it. Most people with kids my age could not relate. Well, most 5 year-olds are not struggling with their behavior that much, so I understand. But, I felt so alone. Joe and I would just beat ourselves up every night trying to figure out what we were doing wrong.

A lot has changed since then, and I'm happy to say it is MUCH better. Some of it was definitely us. We were ready to put our family in counseling. It's not a bad thing to do (I mean come on, I am a counselor, I should be supportive of such a measure). But, I really didn't need one more appointment, expense, or thing to put Sophia through. I didn't want to have to explain to her that we needed to go yet another "doctor" to help her, because now we just couldn't handle her. Anyway, one night we watched a parenting help DVD and there was this one key line that said, "Good feelings don't bring about the good behavior, it's the good behavior that brings about the good feelings in kids." In other words, just making them talk about it in a counseling session isn't what was going to make her better. Helping her find solutions to her behavior and owning her decisions, and accepting limits would bring about happier feelings. All I can say is, my attitude changed, my approach changed, and she quickly responded to the limits, and her emotions improved.

Sound over-simplified? Maybe it is. Nothing is ever that simple. You know we were praying...a lot! Desperately seeking God's face and His will for Sophia and for our family. And I absolutely believe there was a battle there. She was a key player in the improvement. She prays. She asks Jesus to help her on her own. And I believe, with God's help, she's learning to not be a victim in life. We have some deep conversations for her age. She knows that she can't feel sorry for herself because she has diabetes. Now, sometimes she complains about the finger-pricks or shots hurting, and we let her. We acknowledge that it sucks. I would seriously be struggling with feeling much more sorry for myself than she does, I know. But, I quickly realized as we were walking this thing out that for one thing, the world doesn't understand diabetes and what it means. For another thing, they aren't going to treat you special just because you're different or you have this challenging disease. So, we've been helping her and ourselves change our attitudes. We can't be victims. We have to enjoy life.

Let me leave room to still complain in the future...I know I'm good at that, and we have to use our gifts. But, in the meantime, I'm going to try to control my attitude and help my family do the same. Feeling sorry for ourselves just doesn't work. There are too many people who need our help in this world.

The high notes: She's reading REALLY well (I can brag right?), and she's enjoying ballet and growing in her confidence and grace. She has friends that are 8!! Two exclamation points, because that makes her feel soooo cool. And she has 2 sisters who really enjoy and adore her now. Norah has a new name for her since Sophia's not so easy to say, it's "Go-Go." Sometimes I look at her and can't believe she's already 5, and other times I can't believe she's only five because of her immense maturity.

Jossie and Norah have a ton of fun stuff they're doing too, but I've written so much on this one, I think I'll call it good for now. I know some people have wanted an update. I actually started writing this about 3 weeks ago, but didn't have the free space to really think it through til tonight.

Life is fun.