A Different View

Sometimes you have to look for the rainbow in the midst of the rain and you will find it. Having a child with Type 1 Diabetes can be that way. Our son has had a pump for almost a year. They are a great invention. He doesn't have to give himself shots, it works more like your body with a continuous delivery of insulin, better control, etc.

There is a downside to the pump. When you take shots, you are on two kinds of insulin, a long lasting insulin that helps cover the day, and a short burst of insulin you take with food. With a pump, you have one kind of insulin, the short burst. This is because of the pump delivering insulin to you throughout the day, the long lasting isn't needed. The downside to this is, if anything goes wrong with the pump and it doesn't deliver correctly, you don't have that background of insulin helping you through the day, so pump has to be carefully monitored. Checking your blood sugar consistently is very important. This means even in the night. Tubing could get kinked, your sugars could spike because of activity during the day, a number of things could do wrong during the night.

This means that he needs checked during the night. Considering he is only11, and still needs his sleep, my husband and I check him. We are up every night at 12am and 3am. It's like having a newborn, except there is no hope of him sleeping through the night in a few weeks. This can get draining, but we've learned how to cope. We've learned who does better getting up at what time and we've learned, sometimes it's okay to skip either one check or both. After about a year, my attitude is getting better with this also. Sometimes.

The other night it hit me, I get the opportunity to see my town as few other people do. We have a window on our porch that doesn't have any covering over it that I always glance out of as I'm getting things ready to check. This particular night it was foggy out. I wondered to myself if it would be foggy come morning and that's when I realized it. If the fog wasn't there in the morning, how many others would know about it besides me? Who else would had the opportunity to see the that halo around the streetlamps? Or the pretty orange/pink color the fog and street lights gave everything?

And I decided something at that moment. From now on, I would consider myself blessed. Blessed to be able to get up in the middle of the night. Blessed that my son had medicine that helped him live. Blessed to have him home with us and not in a hospital. Blessed that he has a great attitude and tries to take care of himself. Blessed we have a God that knows all and sees all and will never leave us. Blessed that when God looks at our lives, He has a different view of that life than we do and he knows it's perfect for us.

Yea, though I walk through the valley of the shadow of death, I will fear no evil, for thou art with me. Thy rod and thy staff they comfort me. Psalm 23:4

Do you know one of the first things that the nurse said to us when our son was diagnosed with Type 1 diabetes? "You are privileged parents. You get to do something not many parents can do. Each day, you can give your son life!" I remember I thought she was crazy. :) But, it's true, everything we do for him each day, we are choosing to give him life. If we don't change his pump site, it could get infected, it could close up and he wouldn't get the insulin his body needs. If we feed him and don't make sure he takes his insulin, he could die within a day or two. If we choose to ignore his celiac diagnosis and feed him regular food full of gluten, he would eventually die from the damage his body would do to itself. If we choose not to buy his horribly expensive allergy medicine, it would cause so many complications with his other diseases, he could die.

We are living in the "shadow of death" each day, we've just gotten used to it and know what to do. It's like the Fire Swamp. We've learned how to deal with all the dangers, anything else happening would just be a myth. And just like Wesley was wrong, so was I.

We learned a new doctor specialty this week, pediatric nephrology. Apparently, there is a whole sector of doctors out there who only focus on the kidneys. Who knew! Our son is now spilling large amounts of protein in his urine. What does this mean for him? I have no clue. The internet says it could be everything from cancer to kidney stones.

So, once again, we are in the Valley of the Shadow of Death. We have turned a new corner and new danger awaits us. This could be it. This could be the final danger, but I believe in happy endings. Wesley and Buttercup escaped the Fire Swamp and eventually the evil Prince Humperdink. Frodo and Sam made it through Mordor and back to the Shire. The Psalmist says, even in the Valley, God is with us. God is still leading us even during this time. When the psalmist says, "your rod and your staff, they comfort me" it's a reminder that God is physically with us, guiding down the right path. How does a shepherd guide his sheep? He sometimes gives them a gentle tap to lead them down the right path.

We are a little fearful, we are apprehensive, but we will follow the Good Shepherd all the days of our lives and when those lives end, we will dwell in the house of the Lord forever. I know this is true for our son as he has accepted God's free gift of salvation, so everything else is just my human nature wanting to hold on.

I always thought I'd be the cool mom. The one who everyone liked and no one talked bad about behind her back. Everyone would love to come to our house because I'd have cookies for them and know the cool songs and what they were into.

Then my son was diagnosed with Type 1 diabetes. After yesterday, I have decided I have to be the mean ogre mom. The one who no one can stand and the one who everyone avoids. The one that is so rigid and strict with her kids that no one invites them over because of the rules and no one wants to come over for the same reason. All so my son can live.

I have tried so hard to keep my sons life normal since he was diagnosed with Type 1 almost 3 years ago. The hardest part has been letting him hang out with his friends and go to friends houses. At first, everyone was really concerned and careful about what needed done. And I wouldn't say they still aren't. It's A. He seems to take really good care of his diabetes. He seems to do exactly what he needs to do. He's so good at it, that people take it for granted he's doing what he should. No one questions him.

He has been at a friends house and gone 8 hours without testing. He didn't even test for his meal that night. He ate three hot dogs for supper because they were protein and he knew they were gluten-free. (Also an issue for him.) Yesterday takes the cake though. After staying at a friends house for almost 30 hours, I almost had to put him in the hospital. I sent a note to the mom telling her the things he has to do and what things he usually forgets, so I thought we'd be okay. I prayed, I put him in God's hands. I asked for God to remind him of what he needs to do. When I got home at 5:00, he was sleeping. I figured that was the best thing for him, so I let him be. I woke him about supper time and had him check. He was 502. Ketones were moderate. This often happens when he goes anywhere overnight and doesn't get his sleep. Before calling the nurse, I decided I'd check the meter and pump so we knew how he'd been. The only time he had checked or bolused all day was at 10:30am that morning. I kid you not. I about went into orbit. He hadn't done too bad the day before, not great, but not that bad. But, ONE check all day? Seriously, A. you're 11 years old, you're not new to this, you know you have to do this!

So, no more overnights, no more going to friends houses, period. What can I do? I'd like to have my son see 18. This disease is manageable, you can live with it and control it. It's doable, not fun, but doable. But you have to do it!!!

I have heard of kids losing their friends because of the disease and I could see that happening now. We aren't the fun house to come to. We don't have a Wii, we don't have a trampoline, I limit movies and TV. We have always had a limited budget, but when A. was diagnosed, our older son had had his tonsils out the week before. We got hit with 14 different doctor bills at once. It has taken us this long to feel like maybe we'll make it. We don't randomly go to movies, if we do it's planned and budgeted and taking other kids along and paying for them makes me shudder. Same for bowling, or laser tagging or paint balling or, or, or.......so, telling kids, he can't come there, but you can come to our house, isn't usually received with joy. But, if he won't take care of himself, he's not going without one of us.

He has a basketball camp next week, guess who will be going and doing her college homework on the sidelines so I can make sure he test every hour as he should? We also got a birthday invite in the mail today for a paintball party. I have no idea how to handle that situation. I'd like to toss the information and never let him know, but our town is small enough, he'll know. I may just invite myself along. I don't know.

I don't know that anyone ever reads these or that anyone cares to read this rant, but I needed to get it out somehow. I know God is bigger than all this and that my sons life is more important than what everyone thinks of me, but it's one of those hard things for me to break though. This will be hard.