Thursday, October 30, 2008

No help, no time.

That would be this week in a nutshell.

Not that I can blame anyone. That's not even entirely true. I did have one friend offer to come help me clean and organize so I could get on top of things (does that ever really happen?). But, then I remembered Sophie's first follow-up appointment was that morning. So, she watched Jossie and Norah while I took her. Good thing too, because it was almost 2 1/2 hours long! More of the same..."How do you define Diabetes? How do you prime her needles? What do you do when she's 'high'? How should you treat when she's 'low'? How many carbs should she have before exercise? Don't forget, if she doesn't exercise right away after those carbs, she should have a shot."

Yes, yes, I got it.

My questions: Are her eyes going to fail? Does she need to see an opthamalogist? Oh, she could have a lot of cavities from this? Are you sure I shouldn't wake her in the night to test? How will I know if she's having a seizure in the middle of the night? (reply: You'll hear her knocking into the headboard. Yep, pit in stomach returns).

And then there's what I couldn't ask in front of her: Are these mood swings of hers normal? Am I just being manipulated, or does she really feel that bad? Do we need counseling?

So I politely said instead: "Yeah, we're adjusting just fine."

Each morning, I wake up optimistic. I think about how I'm going to take charge of the day, and we're all going to be happy, prayerful, peaceful, etc.

Then someone screams at me, then someone else desperately needs me at the same time, and someone else spills something, or pees on something, and then I need to test blood sugar, and prepare a meal, count carbs, give shots, etc.

Why can't I keep up with the laundry, the dishes, the clutter, my personal time, giving some attention to my husband, and making each child feel equally important through it all? I don't know.

Today actually ended better than most. I was getting flustered, as usual. I declared that everyone in the house was going to use calm voices and there would be no more yelling, including from me. (I know, you can't imagine me ever yelling. I hope you do feel that way, and I hope you keep that image of me). And we agreed that even Mommy and Daddy would have consequences if we yelled. They thought that was pretty funny. And then, for whatever reason, (well probably for the reason I just mentioned) the yelling stopped.

Jossie for the rest of the day kept catching herself and going, "oh, I meant to say, 'Mommy can you please help me?'" And Sophie kept trying to help around the house, and worked much harder at being peaceful. And somehow Norah must have caught on and blessed me with a little peace as well. I needed it. Truely.

Sophia really hates it when she gets moody. She's been very self-depricating when she's in a funk. It's a bit concerning. It's so extreme at times, and so sad to watch, yet so maddening too, because I can't let her set the standard in the house that screaming, hitting and throwing things are acceptable behaviors. She always apologizes later, and says things like, "sorry I was stressing you out." Or "Sorry I made us have a bad day." Even her apologies make me sad.

This too shall pass, right?

I have to just pray for them all. God is sufficient to get us through.

The details of diabetes are getting easier, but we'll still take all the prayers we can get.

Wednesday, October 22, 2008

Nudey Booty

Don't worry.

Tonight, I managed to make dinner (small miracle, and not the point of the story).

Sophie had just gotten home from ballet with Joe. He quickly tested her and got her shots ready. She had on her practice leotard and tights and had to pull the whole thing down to her ankles so she could get her shots. (OK, I don't know why all the way to her ankles, but that's where they ended up).

So, Norah's screaming at me from being overly tired, and tired of being in the highchair for too long. Jossie's playing around with her food and the flowers on the table, and between the two of them, I don't notice Sophie come back to the table. We get all the way through dinner with her eating without her leotard on (since I don't like her to spill dinner on it, I always have her take it off or put on jammies first). I don't know what made me do it, but just before I got up, I thought I'd look under the table to see if she still had her tights on. Much to my surprise, she'd been totally naked the whole dinner.

I said, "You're a nudey booty!"

She giggled and stood up. "No! Hee! Hee! They're still around my ankles!"

You have to admit, we all wish we were that carefree sometimes. Key West, here I come!

Just kidding! Eeww!

Saturday, October 18, 2008


I haven't posted in a bit for a number of reasons. Mostly, very busy trying to wrap my brain around all of our changes.

I've thankfully had constant help since last Monday. My dad was here, then my sister-in-law, Christy, then Jeanette (Joe's mom), then my momma. I can't explain what a blessing it's been to have the extra set of hands. I'm not a queen multi-tasker, so to meet everyone's needs and keep a together house...not really happening on my own. I thought I was busy and falling behind with adding homeschool to my life. Ha! Ha!...heh, heh, uh, (crazy lady laugh here). Everything I've whined about in the past, I take it back. Not that the Lord doesn't give me fresh perspective daily. There is always someone I can see who is struggling with a much worse circumstance than us, yet, with apparent grace and strength. Which doesn't make me feel bad, it just motivates me to find the positive in each day.

So, I've pretty much been that hermit I mentioned previously. It's so much easier to just stay here and not try to add many activities to our lives. Not a hermit enough though (more of that to follow). I had no idea what all juvenile diabetes meant, and how many misconceptions I had. I still feel like I have much to learn as I slowly emerge from my fog and can possibly do personal research. What I have learned is that it is not much like Gestational Diabetes (which I had with Norah), or much like Type 2 (though they can get as insulin dependent I understand it). It is not controlled or reversed or made better by simple diet and exercise. Her pancreas doesn't make insulin. So, every morning I wake up and think should I go check on her and make sure she hasn't crashed in her sleep? Don't be paranoid, but I am...hmmm. Then I go to what am I going to make her for breakfast? Will it make her shoot high in glucose? Then I have to carefully measure with measuring cups and spoons every aspect of her meals. If it's measured in grams or ounces, then I have to use my food scale. If she doesn't eat it all, I have to weigh the remainder, and hope my algebra skills don't fail me as I try to calculate how many carbs she missed for the insulin I gave her, and then give her something to make up for it (luckily for her, it's generally a little sweet). It goes against my mother instinct to make her finish everything I give her. I feel like I'm feeding her more than normal, because I was so thoroughly educated last week on the balance of fruits and veggies, and proper numbers of carbs for her age/size. By the time I meet all those desired goals, she has a huge plate of food. Plus, I have to take into account any stress she seems to be under, or any exercise she's had or I anticipate her having. Then I have to figure her shot based on carbs on her plate, current blood-sugar, and all those other factors. Ugh.

Before I give her the food, I have her plate completely ready, then I make her test her blood sugar, then I give her the shot(s), then her food. Then, I try to rush and make meals for Jossie, who at this point is going "Hey! Where's my food Mommy?," and shove Norah in the high chair with something to tide her over until I can focus on her. Once my helpers are gone, I may forget about feeding myself or making coffee for a while.

Sophie has gotten so much calmer about shots which is good since she has to take 4 at a minimum. She even willingly takes one to have an afternoon snack. She's also been fairly stable with her sugar levels, even at night, which helps us sleep a little better.

Now to the Seriously? part:

Today, Sophie woke up with a stomach bug.

Yep, you read that right, a stomach bug.

This is one of those things that people have said in the last 2 weeks, "Oh, you really want to avoid that at all costs. That really throws diabetes off, and you're not even used to diabetes yet."

Uh-huh, that's what happened though.

She's done ok with it, and her blood-sugar hasn't gotten as crazy as it could have, or they expected it to go. I don't know if the doctor on-call appreciates us for calling him several times today, but he kept assuring us that she was ok. He adjusted her insulin down. Her blood-sugar was still low before bed, which makes us nervous. We get to test her a couple of times during the night though. Should be fun. She doesn't exactly sleep through it, we've learned. It's a HUGE deal to her. The more crying and screaming she does, the more her sugar can go down too (or up). I think that's the most frustrating about this all, is how unpredictable it seems sometimes.

I was reminded by a friend last night, to call on the Lord by name, and He will be there. She also reminded me to live in the present and not to worry about the future. It was a good reminder.

I trust He'll get us through. On another post, I'll mention some of the deep insights Sophie has shared. They're actually quite special. She's ridiculously mature for 5 sometimes.

We of course still welcome all prayers, especially in the next couple of days. In trying to get back to "normal," they're having to realize that discipline is still a part of our lives, and t.v. isn't the only activity we can do. due time.

I'm so thankful for all of my family. I'd much rather have Diabetes to deal with, than to not have my beautiful babies and loving husband.

Sunday, October 12, 2008

The Ups and Downs

Well, we're trying to adjust to our new "normal." I know eventually it will be this tiny part of our lives that doesn't make us sad, it just is. But, as a parent, we're still grieving in a way. We can't just jump back to life as normal. Eventually, I assume, we'll have a feel for what her body does and the Dr's will know if they have her on enough insulin or not. Until then, I am still struggling with doing last-minute activities and meals, etc., which is really how we've operated until now.

We left from church today and realized I'd left the "correction factor" worksheet at home. Sophia's blood sugar was 315, and she was fighting mad, and I didn't enjoy trying to reason with her in front of others at church. I knew she was probably high, but then was frustrated that we couldn't go out to eat, because I'm not going to guess at how much extra insulin she's needing at the moment. Plus, I'm getting the sense that a lot of fast food places may have their "nutritional information" available, but then their portion sizes are not what the worksheet says. So, it totally messes with my guessing for the insulin.

It's hard not to want to just become a hermit. I'm not up to risking her carb intake at this early stage, and I'm also very paranoid about germs right now. I was nervous about going back to church today. You can say that you could pick up a germ anywhere, but the truth is, my kids get sick on Tuesday nights or Wednesday mornings, and I know they got it from church. It happens all winter long for us. We'll deal with a cold, but the stomach flu will throw us into a real tailspin for a while. If she can't eat and she's vomiting, it's a whole new ballgame, as they say. I know it does no good to worry about these possibilities, but I'm also just a little fragile right now. I want to get this new lifestyle ironed out a bit and to feel confident in her getting back to close to normal before juggling another stressor in the mix. Does that make sense?

Another one of our battles is to guess if her angry behavior is blood-sugar related or typical 5-year-old stuff. How much do you punish? Do I prick her finger every time she's being rude? Do I overlook high blood-sugar behavior? I'm pretty sure I'd be unreasonable if I were at a 400 and I was supposed to be at 100. But, I don't want her to just be hateful either. How much control does she have at that point? I just don't know. It's all still affecting Jossie and Norah too. They are still quite demanding in their own rights, and we're not always as patient with them as we'd like to be in the moment. It's still early in our struggle, but it's hard not to beat yourself up and think I should be better at handling this. Is this a test and I'm failing?

Sophia is getting better and better about shots. She was hungry this afternoon and said, "I want a real snack. I don't mind if it means I get another shot." She also reminded me after dinner that I had forgotten to do her bedtime shot. She's a rules girl, and she knows how many shots she gets and when. Yesterday she was so hungry for dinner, she was laying on her bed with her butt hanging out waiting for her shot, and I was still in the other room getting everything ready.

Tonight we went bowling. We'd never taken the girls before. It was a lot of fun. They seemed to enjoy it. Well, Jossie enjoys everything. She danced around and didn't ever pay attention to how many pins she knocked down. We didn't say the words diabetes or carbs the whole time, and that was really nice.

Thank you all for crying with us and praying for us. We feel carried in a way right now. Like others are sharing our tears, so we don't have to cry as many.

I stumbled upon these verses earlier. I know it's a famous passage, but it wasn't to me and I found it so comforting and empowering:

Psalm 91

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

This I declare of the Lord: He alone is my refuge, my place of safety; he is my God, and I am trusing him.

For he will rescue you from every trap and protect you from the fatal plague.

He will shield you with his wings. He will shelter you with his feathers, His faithful lpromises are your armor and protection.

Do not be afraid of the terrors of the night, nor fear the dangers of the day, nor dread the plague that salks in darkness, nor the disaster that strikes at midday.

Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch you, but you will see it with your eyes; you will see how the wicked are punished.

If you make the Lord your refuge, if you make the Most High your shelter, no evil will conquer you; no plague will come near your dwelling.

For he orders his angels to protect you wherever you go.

They will hold you with their hands to keep you from striking your foot on a stone.

You will trample down lions and poisonous snakes; you wil crush fierce lions and serpents under your feet!

The Lord says, "I will rescue those who love me. I will protect those who trust in my name.

When they call on me, I will answer; I will be with them in trouble. I will rexcue them an dhonor them.

I will satisfy them with a long life and give them my salvation."

Thursday, October 9, 2008

The Good, The Bad, and the Poetic

This is a picture of Sophie and I at a birthday party on Saturday. A lot has happened in the last few days. It feels like it's been a lifetime, yet, it still feels like anytime now, I'm going to wake up from this nightmare.

First: The Good

Some of the sweet things we've seen in the last few days:

Norah playing peek-a-boo with PaPa and laughing hysterically at him.

Sophie has started to prick her own finger for her sugar tests.

Jossie rubbing Sophie's back when she was crying during a blood test, and then laughing when Sophie tooted, and saying, "OH! I must have rubbed it out of you!"

Norah singing "PaPa, PaPa, PaPa" as I'm trying to rock her to sleep.

Friends bringing meals...that really takes a load off at the end of the day.

Sophie singing ABC's to distract herself during a shot.

The nurses and helpers at the clinic are so impressed with Sophie's fast progress and her taking initiative in her own care so early on.

The girls' laughter at PaPa moving his scalp without touching it.

The touching words of encouragement and countless prayers from our dear ones.

Family members taking care of us and carrying us.

The Bad

Diabetes Sucks! I truly hate it. I know I should be thankful that it's something manageable, and she can live a mostly normal life, and blah, blah, blah. But,'s awful. To say it's life changing is such an understatement.

Our education has been for 2 days, learning the in's and out's of shots and balancing carbs, and when to be alarmed, and "oh by the way, you shouldn't need this, but here's a special shot for if she's ever so low that she's having a seizure or is passed out and you can't revive her. Just shoot it into her leg, and she might throw up, and it might be the longest 10 minutes of your life waiting for her to come to, and you might need EMSA, but don't lose sleep over this stuff, and certainly don't wake her up in the middle of the night to check and make sure she's not too low...that's just silly." OK, maybe it wan't that cold, but it felt that awful to listen to.

I think our low point has hit us as we've watched the fear and sadness come over Sophia. I nearly screamed at the phlebotomist as she was scolding Sophie for screaming in fear of the needle she was about to draw blood with. I kept saying to her, "she's really been through a lot in the past two days," and when she finally saw she'd had other recent pokes, she said, "Oh, have you been in the hospital? Well, no wonder you're upset." But, come on now, who scolds a child for being so afraid of the needle. Does that ever help??!! On top of that, making her scream over every shot has been heart-wrenching. She's slowly getting better, but it made me sick to learn yesterday that every snack she has during the day doesn't fall under the meal-time insulin, it instead gets it's own injection if it's over 5 carbs. So, if she wants more than 12 goldfish, she gets a shot. So, with food scale in hand, I get to weigh and measure, and think about, write down, analyze, and give insulin for, every single morsel.

The sadness was overwhelming this morning as I lay in bed (not sleeping anyway) and listened to Sophia screaming in her sleep, "NO! No! Don't prick my finger. No! I don't want a shot!" I just grieve for the loss of her simple life and simple childhood. Just the other day she said, "there are so many good things in this world," and I wonder if she'll keep that belief through this all. And it may be that God will use this for great things some day, but honestly, I just feel a bit robbed right now, and I feel Sophie is robbed. And the "someday things will be better" thoughts just aren't helping right now. It's just sad. Period.

And, I can't help but wonder how my other kids will fare through this all. Jossie has had potty accidents of both kinds...totally not like her. They both are so clingy and cranky, it's not even funny. How do you balance out your time and attention, when so much of your time is going to one child?

I know we'll all get better eventually, but I won't put on a fake smile and say, "Oh, it's all OK" right now. It's hard not to question God in it all. Yet, I don't want to try to go through this without Him.

The Poetic

From "The Magician's Nephew" by, C.S. Lewis

[Aslan asks Digory a question] "Yes," said Digory. He had had for a second some wild idea of saying "I'll try to help you if you'll promise to help my Mother," but he realized in time that the Lion was not at all the sort of person one could try to make bargains with. But when he had said "yes," he thought of his Mother, and he thought of the great hopes he had had, and how they were all dying away, and a lump came in his throat and tears in his eyes, and he blurted out: "But please, please--won't you--can't you give me something that will cure Mother?" Up till then he had been looking at the Lion's great feet and the huge claws on them; now , in his despair, he looked up at it's face. What he saw surprised him as much as anything in his whole life. For the tawny face was bent down near his own and (wonder of wonders) great shining tears stood in the Lion's eyes. They were such big, bright tears compared with Digory's own that for a moment he felt as if the Lion must really be sorrier about his Mother than he was himself.

Tuesday, October 7, 2008

The Road to Diabetes

Most of you have heard by now that Sophia was diagnosed yesterday with Juvenile or Type 1 Diabetes. I hope to get the facts out in this post.

As I put the pieces together in my mind, this has been developing for a long time. Sophia has always been what we called "strong willed," but the mood swings we'd gotten in the last couple of years were so strong. Her sweet moods were so amazingly sweet, and then all of a sudden she would snap and would be screaming, or throwing things, hitting, running away from me, etc. I say all of this, because this was a big part of what tipped us off yesterday.

The last few weeks she has been more tired and complaining of that, even often asking for a little coffee in her milk to help wake up. She's struggled to have energy for much at all, and mostly begs to watch tv all day. I was out running to the doctor for Jossie on Friday, and then out running errands with Sophie on Saturday. Everywhere we went those two days Sophie was begging to use the bathroom and had plenty when she went. I of course just thought it was a behavior thing, and she was just cranky and trying to get under my skin by using the bathroom everywhere (good reasoning, huh? Feeling proud of myself there). On Saturday, I Googled frequent urination in children, and had "urinary tract infection" and "diabetes" come up. I thought, well she's not complaining of pain, so it can't be UTI, but it can't be diabetes either, because our nephew just got diagnosed with that and I'm just being paranoid...reading into the symptoms too much.

So, I dismissed it for the rest of the weekend. Took her to our church dinner on Sunday, where I looked like quite the mother of the year snapping at her, as she was screaming at me everything she wanted on her plate. I mention it, because it was part of what pushed us to thinking something is seriously up. I reasoned it to be that she just doesn't get enough sleep and we need to move her bedtime up by 1/2 hour.

Monday morning came, and she was cranky from the start. She had a major blow-up right before Joe left for work. He said, "you need to take her to the doctor." I told him that I needed to just test her with my glucometer first (I had gestational diabetes with Norah and had a glucometer). So, right after he left for work, I found my glucometer and forced her to be tested (she was not happy with me). It said "Warning! High Glucose Level! Over 600" I did my best not to panic, and assumed that it was just an old strip or I had done something wrong. I immediately re-tested her and it said the same thing. My heart sank. I knew what it meant immediately. I knew that there was no other explanation, but I didn't know how bad it was going to get.

I, through trembling hands, immediately called the doctor's office to find out if we should come there or the emergency room. Called Joe, to tell him to be ready to leave. Quickly ran around the house, desperately trying to keep the nice mommy face on and pretend everything was OK. Though inside, I thought I was about to scream. As we were gathering snacks and drink-cups, and throwing clothes on everyone, I had to tell Sophie that she probably had diabetes like Forest, her cousin. She started crying and said, "but I asked Jesus that nobody else in our family would get sick!" Ugh! How do you even go there? But that's Sophia...she has such pure faith, yet she has this uncanny ability to work out her theology in the midst of whatever is happening in life. We hugged and cried for a minute and prayed for a cure and that we would all be brave and peaceful as the day went on. We had that prayer answered for sure.

I'll try to shorten it from here. We got to the hospital and they did blood-work and confirmed it was diabetes, but that thankfully, we had caught it much earlier than most, and would not be requiring hospitalization. So, they sent us to the pediatric endocrinologist, and Joe's parents took Jossie and Norah home. Within a couple of hours time, I learned to administer her first shot of insulin, and within a couple of hours of that, she began to feel a little better. Of course, I was heartsick with it all...watching her being pinned down and screaming while getting her blood work, the fact that our lives are going to forever change, and so many other aspects.

It's still been crazy today. She's just on a long-acting insulin shot until tomorrow, when we'll start our education and her regular mealtime shots. So, today she started off in the normal range (164), and by lunchtime was up to 512 (which I suspected when she started randomly screaming at me...I'm learning these cues). Then she went to over 600 again. ugh! Joe had to come home to wrestle her down so we could give her another long-acting shot. We checked blood-sugar about 6 times today, and she's learning to deal with that OK. I pricked my own fingers a couple of times today to show her it wasn't a big deal (but I have to tell you, it really stung more than I had remembered, and I felt even sorrier for her).

Our families and friends have been so supportive in these last two days. We're so thankful. Thanks for the calls and the emails, and especially for the prayers. Pray for us in the next few weeks as we adjust and help her little body adjust. The one positive, is that when her blood sugar has been down in the normal range, she's so sweet and on top of her behavior, and it's quite an exciting thought to think she'll have a lot more times of feeling good than she has clearly had in the last few months or possibly years.

Well, I have so much more I could say about it all, but can barely keep my eyes open.

Hopefully the funny stories will return again soon! :-)

Sunday, October 5, 2008

Jesus Put His Hands on Me

Jossie had been sick again...yes, indeed we only went another 4 days without sickness in the house.

This morning she seemed a lot better, with no fever. She says out of the blue, "hee, hee...Last night Jesus just put his hands on me and made me all better."

Me: "while you were sleeping?"

Joss: "yeah, while I was sleeping, he just put His hands on I'm all better."


How do you argue with something like that? Give me any critic or doubter, and I'll give you her childlike faith and experience. That was her true experience, unprompted and untainted.

People Can't See You

Tonight we had our annual chili/dessert cook-off at church, where I one first place in the pie contest (honk, honk...that's me tooting my own horn, and this has nothing to do with the story). We were getting in the car around 8:00 and it was dark outside.

Sophie says to Joe, "Daddy you have to be careful out there at night. People can't see you. Your skin is too dark."

Joe says, "Yeah, I better not wear all black outside at night...I'd just disappear."

Sophie: "Yeah, you would."

Saturday, October 4, 2008

So Yummy

I love Norah kisses. Well, I love them from all of my girls, she's just the only one who still loves giving them. I know that eventually they'll be much less frequent, so I'm soaking up every one I get. I've warned them all that I will kiss them every day until they're 25! Jossie told me the other day, "you have to stop, I'm 23!" I said, "good, I still have 2 more years." To which she got angry and eventually remembered the number was 25. Now she runs away from me every time I say "Jossie, come here," and she screams, "NO!! No Mommy! I'm 25. You can't kiss me." Then I have to sometimes forcefully remind her that I'm 33 and she's 3, and I'm going to kiss her. I don't always get my way on as many things as I'd like, but I win on that one. :-)

Thursday, October 2, 2008

Sorry about the rant

So sorry about the previous rant. I don't know that anyone reads this much anyway, but if you do, funny stories will return soon. Getting the house as caught up as possible today, then I'm hoping my sense of humor returns. :-)

I got a lot of kisses from Jossie today, which made me tear-up, I was so gushy happy about it. I also got some serious hugs and giggles from Norah. And, Sophia's first baby tooth fell out today! I feel like she was just my baby, and now she's losing teeth. She was so proud of herself for pulling it out. So cute. She's colored a picture to leave for the tooth fairy. We're gonna have to give the fairy a call tonight. :-)

Motherhood is sweet on so many levels.