Monday, February 2, 2009

Just a part of our life...

*Preface: So many of you have asked that I decided to write a post on this certain aspect of our lives. I know it's a little long, even for one such as I... never prone to writing anything short. But it's simply what our days are. Ian's reality.*

He's a normal kid. We live a normal life. Baseball. Gymnastics. Church. Friends. He loves to ride his scooter and is super proud of how far he can cross his eyes.

He doesn't mind if you want to watch him prick his finger and squeeze the blood out. He'll even show you the reading on his monitor. He might flinch a little when he gets his shot, but you can watch that, too, even though he gets them in his "hiney." And if he wants to impress you, he'll smile while the needle goes in.

We have the insulin and the test kit with us wherever we go. Everywhere. We keep glucose tabs in case he's low. But if he IS low, we don't freak out. We just move quickly. Same as if he's high. He often won't be symptomatic until he's VERY low, though, which can be cause for concern. When your blood glucose level is supposed to be between 90 and 130 but goes down to 30, you need to move pretty fast. (Many people start going unconscious at 40.) So, we take everything everywhere with us. And, if it's a warm day at the baseball park or soccer fields, we take a little cooler, since it all needs to stay below 85 degrees or so.

It's just a part of life. Testing before and after meals. Before he goes to bed. I sneak in before I go to bed to check once more, because night times can be a little unpredictable. I won't be able to sleep if I don't make sure he's alright before we turn out our light.

He gets shots with every meal... if we miscalculated his carbs and he's too high in between meals... if there's a special snack or dessert... plus the long-acting one he gets once a day. There's so little fat on his five-year-old body that he only wants us to give him the shots in his rear. Stomach would work, too, but he says it hurts more. So, we rotate injection sites, and his cute little "hiney" looks like it has the chicken pox. He thinks that's funny.

We count carbohydrates in everything he eats. Everything. Every. Single. Thing. Until we had to start doing that, I never realized nearly everything contains carbs, which is just a fancy sounding word for sugar. Meat and cheese are fine. So are pickles, for the most part. Nearly everything else has to be counted. He gets one unit per 15 grams, approximately. And I now keep a Splenda bowl in the cupboard next to our sugar bowl so we can still sweeten his Cheerios. But at baseball games he can have all the sunflower seeds he wants, which is a lifesaver when all the other kids go running to the snack bar. He only needs one unit for the little boxes of Mike & Ike's, though, so sometimes he opts for those if I'm feeling lenient about junk food.

He can have that cupcake for someone's birthday at school, but most likely I've got to run over and give him a shot. Or we can put it in a baggy and he can have it after he gets home, which isn't as much fun as eating it with friends at school. And if we visit a doctor's office and they have suckers, he balances how badly he wants one with whether or not he wants to get a shot right then. Sometimes he forgets, and when a well-meaning mom at a soccer game offers him a granola bar, he may scarf it down before remembering to get a shot. Then his eyes get wide and he comes over, "Mooommmm..." Or sometimes we won't find out 'til a while later when he's grumpy and out of sorts and says his head hurts and his eyes are blurry. Then we'll test him and find out he's high. Then he'll remember the granola bar that he didn't get a shot for.

When it's snack time we try to lean toward salami and cheese, both of which he loves and doesn't have to have a shot for. But when the other kids are having an orange, or crackers and milk, he'll usually go for the shot so he can have what they're having. And if we're celebrating report cards and go to Hometown Buffet or Cold Stone, there's just a lot more testing and a lot more shots. We we're running around crazy between sports events and errands and whatnot, we tend to frequent the fast food restaurants that have the nutrition information on the wall or in a brochure. It's hard when they don't, because then we have to guess how much to give him. It's all trial and error.

We work with the nurses at school, who job share. Each one sees things a little differently, so we figure out what works best with each of them. I always have my cell phone so they can run something by me if his numbers are off, which happens quite often during the week. When I go out to the base or up to SLO I always have the thought in the back of my mind that he will be high and the nurse won't be at the school (they cover quite a few in the district) to give him his shot. She could take half an hour to get back to the school, and he'll be dealing with the effects of being high for that long. But, that can't be helped. If I'm home, I'll often just run over and give him his extra shot so it will take five minutes instead of twenty or thirty... like with the cupcake.

It's not that it's hard... it's just... constant. But it's the only reality he will ever know. That is, until he is healed or until there's a medical cure. We just do it. It's our life. It's his life. Really, this is his life. What we do now will determine his quality of life down the road, his health, the length of my youngest son's days.

But it does get emotionally difficult when someone who doesn't know tries to give us advice. Or, even worse, when someone who knows a little tries to give us advice. Because I realize your aunt has Type 2, and I know there are some things that really work for her. But that is a whole different world than Type 1. They shouldn't even be called the same thing. And I know your 25 year old daughter was just diagnosed, and I love to share stories and form a bond over our experiences. I really, truly do. But, please don't tell me what is going to help my five year old son as he experiences growth spurts that completely throw his numbers off, because your daughter never had to go through that. She was diagnosed as an adult. It's hard to hear, "Well, I guess you guys are going to have to learn to eat better. Too bad you didn't start that sooner." Because Ian's Diabetes has nothing to do with what he ate or what he did. It may not even have to do with genetics, because there are no other Type 1's anywhere in either of our families. Most likely he had a virus that attacked his pancreas. The doctor's just don't know. Medicine as a whole simply doesn't now. We don't know how it happened, how he got it. And we don't know how to keep our other kids from potentially getting it. Our family eats the same now as we did before, he just gets insulin before having that glass of milk, and I use sugar-free jelly on his PB&J. (But sugar-free does NOT mean carb free! This is an important tip to the newly diagnosed.)

Sometimes people's words hurt. But, they don't mean them to, and I remind myself that. We all say things out of ignorance. I do the same thing. We're mostly all just trying to be helpful and supportive. Then there are times when someone DOES mean to judge me, and those are hardest. They DO mean to tell me what I am doing is wrong and hurting my son. They don't mean to hurt me, but they do mean to pointedly explain how we should be doing things differently for Ian's benefit. Those are the times when I force a smile and say, very slowly and calmly, "We're working with our endocrinologist and doctors to make sure we're doing what's best for our son. His last two A1C's have been 6.something. So, I think we've got things under control. But, thank you for your concern."

I'm thankful for a wonderful friend who has learned and continues to learn how to test and give shots and what foods are easy and how much insulin Ian should get for other things so he can go hang out with his best buddy and be a normal kid who plays at a friend's house.

I'm thankful for my three other children who have stepped up and learned how to test him, how to give the shots. Nate and I can go out on dates (Woo-woo!) and not worry, because my oldest son is a great babysitter. The kids are protective of their little brother and watch to make sure he doesn't forget and eat that granola bar at the soccer game. They read the carb count on the backs of packages and have learned to divide the numbers to figure out how much insulin he needs.

Today he is home sick from kindergarten. He's been fighting something all weekend, and his numbers have been high. Yesterday we just could not bring him down, which means his little body is fighting hard. Not only does he feel icky from whatever it is, but is even more out of sorts because he's high. So his head hurts. And he's whiney. But he doesn't mean to be.

He's still five. And he still whines and disobeys on purpose. And we still have to discipline him. However, the lines get blurred because if his numbers are off, everything is just exacerbated. But that doesn't mean whining and disobeying are okay, and we still need to be consistent. Yet, consistency has become subjective. Bad behavior usually includes getting out the monitor to see if his blood sugar is playing a part or if it's fully Ian being a five-year-old.

And, it may just be a mother's heart, but I firmly believe... Nate and I both firmly believe... beyond just a belief... it's a feeling in my gut... a faith... that Ian will not have to struggle with this his whole life. He will be cured. My Jesus died on the cross. And when He died, he covered my son's disease with His blood. He paid the price of this imperfect and fallen world so we wouldn't have to. (We don't have to pay the price! Did you hear that? Do you get it? The price is death, and we don't have to pay it! But so many people still chose to. That's another topic for another post.) I know Ian's healing in this present world is possible. I pray for it every day. Every. Single Day. I believe for it. And I know that, whether or not healing manifests itself in this world that we know, it has already happened. Jesus already covered it. We just may not see that healing until we're in God's kingdom. Remember? This is not God's kingdom. This world has another ruler. We are in this world, but not of it. My son is healed, and I pray he will see that in this world. (John 17:14-19)

So, my five year old son has Type 1 Diabetes. He's not diabetic. We choose not to identify them that way, unless we have to on a medical form or in conversations with yet another new school nurse. He is not limited. We, as a family, are not limited. We are just careful and have learned to plan. But we are not limited by diabetes. My son is not limited by diabetes.

He has a disease. The disease does not have him.
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Lalena said...

I love you my friend.

This is a beautiful post. And I'm believing with you.

Ratzlaff Reflections said...

Thank you SO much for posting this. Beautiful, Tootsie!

I love you guys! Squeeze your kids and your hubby for me! Oh, and you too!!

Anonymous said...

So, Yes I am crying. You know we are believing with you. Every nigth we pray. As Christian prays, "Jesus, heal Ian as you can" I believe-God cannot resist the faith of those precious little ones.

Susie said...

Thank you for sharing your heart and Ian's testimony- I love that everyone has stepped up to keep him safe in his numbers. I feel a little bit more informed tonight, Angela. GOd bless you guys.

Thany said...

Thank you so much for this. I think about it all the time and totally wonder what it is like.

I like the ups and the downs and what NOT to say. Especially the NOT.

Your Faith is inspiring to me. The strength and the sureness. I need a good dose of that.

Love you and your family so much.
Thank you again.

Mrs. Stoe said...

You made me realize something - that our sons are already healed, in God's Kingdom. But in my tears right now, why do I think that's not enough?

I love you - thanks for your words!

Andrea Stoe