Joe the Man

10 years we've been married (as of October 16). It's hard to believe, yet I feel like he's such a part of me that I can barely remember life without him. It's been fun thinking about our 10 years and realizing/remembering all of the many reasons I love that man. He's just good. He's good to others, he's funny, he protects, he enjoys his family. He makes us his first priority (besides God of course). He listens to me. He adores me. I like that. I could have made some really poor decisions before I met Joe, and am so thankful that God just didn't let that happen and He put Joe in my life. He's what I always dreamed about in a husband. I'm so blessed.

I wanted to share a couple of stories that he's done recently. They'll show some of his goodness.

In our neighborhood: He's had a heart for this very difficult family. They have a gazillion kids. They never watch those gazillion kids. It's a miracle none of the kids have been hurt by zooming cars, other people, etc. The adults, I believe, are likely involved in gang or drug-activity. My instinct is to pray for them, but never speak to them. Isn't that awful? I give them the friendly wave, and am kind to their boys (I let them help me plant flowers, give them occasional snacks, etc.) But, to be totally honest, I haven't wanted to do much to help them realize they need God and that they can change. I still, as I write this, don't have the answers for how to help them. But Joe, he's constantly trying to figure out how to reach out to them.

Anyway, one day, he was mowing the lawn, and two of the guys who frequent the house were sitting on the porch. He walked akwardly over to them and did about 30 seconds of small talk and then said, "I think God wants me to pray for you." They looked at him like he was a freak. So he says, "I'm going to go ahead and do that now. Do you have anything specific you want me to pray about for you?" The one guy just shrugs and says, "No Man." The other guy says something about how he could pray for his kids. So Joe prayed for that guy's kids and then prayed that God would haunt these men until they knew Him (outloud, mind you). Then he akwardly walked back and resumed mowing his lawn. Since then, the one that was a little more open to being prayed for has opened up to Joe a couple of times, admitting to some jail history, and that his ex won't let him near those kids. He has asked him to pray for him a couple more times, saying he always feels better. He also told Joe that he's felt "weird" since he first prayed for him, and that on that first day he prayed, he was supposed to fight some guy in the neighborhood, but never left the porch when he drove up. He said, "I just couldn't do it."

We have since learned some very unfortunate news about the main man who lives there (not the guy who let Joe pray), and our answers are fewer. Joe says, "In whatever way I can, I still think I'm supposed to show love and pray with them when I get the chance." I admire him. God protects him.

So, my other story: This one has to do with a redeeming value of our being forced to walk the diabetes road. Joe ran into Walmart one day, and while in line to check-out, the check-out lady next to him passed out. Joe quickly observed another worker saying something to the effects that "she hasn't done this in a long time," and grabbing a packet of Reese's Pieces and trying to shove them in her clamped shut mouth. Joe says to the conscious one, "do you have a pharmacy or a cake aisle?" She looks at him like he was the most insensitive person ever and said, "I don't know, I'm trying to help her here!" He says, "I know, it's for her, I think I can help." So she directs him to the cake aisle. He grabs a tube of cake frosting, and brings it back. He opens it and directs the other worker to rub it on the lady's gums. After a few minutes, the diabetic lady gains enough strength to ask for a soda. One of the other workers quickly grabs a Diet Coke (still they didn't understand what had happened). Because her sugar was low, she had passed out, Joe realized this and knew to help. He quickly realized she needed a real Coke and grabbed her one. She was better and they were grateful for his quick thinking.

It made me cry the next day when I really thought about what had happened. God clearly had Joe next to her when she lost consciousness. He was able to intervene because he knew what to do, and he didn't hesitate.

My Hero!

Why Homeschool?

Well, that's up to you...

Why am I homeschooling? I like the weird looks I get from strangers when they say to my daughter, "why aren't you in school?" and I say, "she's homeschooled." It's a thrill.

No really, it's because I like to never shop alone for groceries and just love it when my kids scream at me for a toy...who needs solitude?

Actually, it's because I love being behind in laundry and cleaning all of the time.

No, I know...it's because I am no good at diagramming sentences and don't remember much in the way of history, so I thought, "I should teach my kids. I'd be good at that."

OK, sorry....

Why am I really? Mostly because I fell into it. Now, I'm adopting the reasons why it's good for our family, but honestly, I looked into a gazillion private schools. I applied for transfers into the magnet schools, and even got into one of them, but then decided it wasn't right for us. We couldn't stomach the price of private school for 3 kids. The final straw was when Sophie's preschool suggested we hold her back a year before kindergarten so she could grow emotionally and socially. I thought, I'm not sending her to preschool for another year of ABC's when she's ready to read. She's a smart girl, and it's time to move on.

Her experiences in preschool weren't fun either. She still cried most of the year when I left. She was highly anxious, and struggled making friends. Her main memories are of a girl on the playground who teased her all year long saying she wasn't a girl, and saying she wasn't allowed to play with the others. At 4!! I know I can't protect her forever from pain, but 4 is a little early to just make her figure out how to deal with that level of teasing.

On top of that, Joe and I had to laugh the other day at how early sex education starts among peers. At 4, her classmates had already discussed their privates (though Sophie thought they were calling it a China), and her friends informed her that breasts were called boobies! I can only imagine what Kindergartners are discussing! Ha! Now, lest you think I live in a closet, that wasn't the real reason why we're teaching at home, as I know they will be exposed to goofy things kids say even at church. But, I'm OK with being the primary person exposing her to what she needs to know right now. And before you think I'm that awesome (I know you do), you should know I own a lot of really meaningless Barbie movies that have done nothing but teach my kids how to act like serious drama-queens. So I'm not that righteous.

So, I don't know what the answers are for every parent or child. I know a lot of homeschool families who homeschool some of their kids and public-school the others. I know a lot of very well-rounded families/children who do only public school, and their kids have a great love for God too. So, there's no one right way for everyone.

I have found some things fun about homeschooling, and am hoping that some of my beliefs about our future due to this decision are realized. For one thing, it's a blast watching my child "get-it." When their eyes light up that they know they just learned something they didn't know a moment before, I'm glad that I get to be the one who witnessed that moment.

Another thing, I was never comfortable with letting adults I barely knew, take on the responsibility of rearing my child for most of the day. I'm sure they would have done a fine job, but it felt like my job. I felt like I would be losing so much of my time with my kids. Sophie was supposed to be in school 7 1/2 hours a day at 5. That seemed like a lot of independence and dependence on others for such a young age. I couldn't get over the fact that I only have them with me for 18 short years, and the world has them for the rest of their lives. It doesn't seem like long to get all of my snuggles, and chats, and training in with them. Sigh... I just needed more.

I've heard people's concerns about homeschoolers turning out "weird." I'm thinking, Wow. Do you know how many weird kids I went to public school with...and they're still weird. (Sorry if I went to school with you, I'm sure you weren't one of the weird ones). I guess I believe I can encourage my kids to learn, I can push them to be confident, and I can teach them about life without them automatically becoming "weird." But, if you think Joe and I are "weird," then the apples probably won't fall far. :-)

It was such a relief to be homeschooling last year when Sophia was diagnosed with Diabetes. She needed so much, and I was so uncomfortable with all of the changes. I personally couldn't have trusted a nurse and teacher to know the right thing to do for her, or to notice her among the 30 other kids in the room when she just "didn't look right" and would maybe need to test. I felt like her life hung in the balance, and I was the only person who was going to take it seriously enough. Her endocrinologist thought it was great too..."Oh good," she said, "we don't have to try to educate a nurse or teacher." So, I have much peace from that standpoint.

I gave up on the idea that forcing my kids into all day social and stressful learning was the way to make them get better. I can't tell you how many people suggest that's really what they "need" to overcome anxiety. As a child who needed "to grow emotionally" according to her preschool, I feel Sophie has done just that. With the constant support at home, she's much less anxious, and more easily pushed into challenging herself in social situations. She enjoys friends, and is getting much better at just being a normal kid. (Remember, I'm not saying if your kid's in school, and anxious, that my way is the only way to fix it either...we all have to work these things out and have peace with our decisions).

In the last 2 weeks, since we've started daily school, it has been so much fun to see how crazy fast they are learning things. Jossie's writing her name, which she had no interest in doing before. They're listening to rich literature being read. They've learned about different religions and why it's important to pray for missionaries across the world. They've memorized the 10 commandments, the beginning of the ancient timeline, and they have an understanding of the first nomads. Sophie is starting to be less angry at math. She's reading so much better (in just these 2 weeks).

We're also part of a learning community called Classical Conversations. It is a one-day-a-week school where they learn an immense amount of stuff, and then go home and memorize it all week long. That's where they've learned the 10 commandments, the ancient timeline, the noun endings for Latin, the 5 kingdoms of living things, the parts of a bean, the name of the hair on a spider, how to count by 1's, 2's, 3's, and 4's. (Seriously, even my 4 year-old has it). They can tell you what a preposition is. They're in choir and drama there too. They love it! They make friends just like "normal" kids, and they listen to a fun teacher, just like "normal" kids. I've met the nicest and most "normal" moms you can imagine. No weirdos in sight!

I've had so many people say, "good for you...I just couldn't do it." I had the exact same thoughts up until the moment I decided to try, like Nope! I can't wait for her to go to school. I am NOT a teacher and we butt heads too much, that would NEVER work! I guess God has other plans sometimes, and He certainly equips us.

So, lest you think I'm too awesome again (admit it), I have not done a perfect job in my last year, and these 2 weeks. Someone loaned me a book called "Homeschooling with a meek and quiet spirit," and I have laughed out loud on a daily basis on how far I am from that. :-) But, I still am loving the experience. It's an adventure to carry this responsibility and to watch my little buds blossom. I didn't birth them knowing "I shall homeschool you into awesomeness," but I'm working on truly embracing the fact that I get this unique privilege.

Now someday, if I decide I'm failing miserably and must send my kids to school, I'm sure I'll post on that too, and we can all share a good laugh.

Until that time....

I guess I'll be prayin'

Jossie's New Do

Yeah, so, I wasn't exactly planning on cutting Jossie's hair....


The other day, I'm having a happy mommy moment where I am busy organizing the heck out of the girls' room and they're getting along together in the office, where they're playing beauty shop. Sophie had a little mirror and chair set-up. She had dress-up clothes, make-up, and plastic jewelry to put on the wee-ones.


She'd even colored a little salon picture so they'd know where they were when they walked in the door.


Ahh...


So sweet, my little angels. I am so blessed to have these moments where they are so happy together.


Then, as though the album of happy music which plays in my head, has suddenly come to a screeching halt:


Jossie comes in with that nervous laughter (like she thinks it's funny, but is afraid I might not so much), and says "hee, hee, hee, Mommy, don't be mad, but Sophie just cut my hair."


"WHAT???!!!"


A bit of over-reacting was to follow.


"So," I say to Sophie, "Just tell me that you did know better, right?"


Soph: "Yeah, I did." (Head hanging low).


Me: "Serious consequences if that happens again, OK?"


Soph: "Yep."

So this is pre-cut: (gorgeous, huh?)

This is the wad of hair:

And this is her running carefree in the yard:

So, bottom line: she has bangs, which I don't love, but they go with her messy free-spirit style; and she has a large chunk cut off the side, which when the humidity hits, it curls and looks decent...not great, but decent. :-) She said to me: "Mommy, I asked her to cut it." Like don't be mad at her.

I later discovered when Sophie's hair was in a pony tail, some short pieces hanging down. "So, did you cut your hair too?" S: "Yes, but just so Jossie would know what to expect and that it wouldn't hurt." (Head hung low again).

Then, I kept thinking that Norah's hair seemed to have a rather straight cut in the top. So, a few days after our event I ask, "Did you cut Norah's hair too?" S: "Yeah." Me: "So, if you could just tell me all these things up front, rather than me having to discover them and ask you...that would be great!"

I guess you have to laugh. Don't most kids do this at some point? I just thought at 6 we were past that sort of curiosity.

Jossie goes around telling everyone: "Mommy says we can NEVER do that again!"

Come Walk with Us

My sweet girl, so happy...

Her pump site (where it's inserted):

The pump up close:

Sophie putting the pump in her pump-pak:

Sophie adding carbs to the pump herself:

This is my letter being sent out to raise awareness and support for diabetes research:

Friends and Family,

Greetings from our family clan! We hope this letter finds you doing well. We have had the most adventurous last 11 months, and thought we’d catch you up a bit. Since this isn’t a Christmas letter, we probably won’t give you all of the ins and outs of the year, like Joe’s business, the kids’ milestones, etc.

We are really writing to share a bit about our journey with Sophia and Diabetes. It’s part of our healthy process to share, and to champion our little girl for the superhero she has been all year long. We are also forming a walking team to raise money for a cure, but more on that to come.

Please bear with us for a story of sorts….

Type 1 Diabetes is an illness that seems like it comes out of nowhere; one day you’re fine, the next you’re diagnosed and on shots 4-5 times a day. We have learned that it’s more of a progressive illness (though not a result of poor eating, as it may be misrepresented in the media about children), so we don’t know how long she had the illness before it was diagnosed. Last summer we had started to be frustrated by some very angry behavior by Sophia. Then one weekend at the beginning of October, she and I (Anj) were running errands together and she needed to potty everywhere we stopped. I thought it was odd since she’s not the type of kid to check out the public restroom everywhere we go. I had also noticed her saying “I’m starving thirsty” a lot, and needing many refills on her water. I came home from errands, and Googled “excessive urination in kids,” and got the results: Urinary Tract Infection, or Diabetes. I mentioned it to Joe, and we both kind of blew it off. Joe’s nephew, Forest, had just been diagnosed in July with Type 1 as an 8-month-old baby. It was on our mind a lot, but we thought we were reading too much into her behavior, so we weren’t going to worry about it. That Monday then, she woke up and immediately threw a huge fit, slamming doors, screaming, etc. Joe said that I needed to find my glucometer (I had Gestational Diabetes with Norah) and test her, and if nothing was wrong, we needed to figure out a more effective way of disciplining. So, I got the meter out and tested her blood, and it said, “Warning. High Glucose. Over 600.” I of course assumed that it must be wrong and promptly stuck another strip in and tested her again. It said the exact same thing. We don’t know how high she actually was, but apparently the meters just stop measuring once it gets past 600. (And a normal person’s blood sugar is between 70-120).

Well, I knew right away. There was no other explanation. Don’t get me wrong; I prayed all the way to the hospital that there was another answer. I hoped that my meter was broken, and we were about to waste some money on a hospital visit just for them to tell me I had a faulty meter. Needless to say, that didn’t happen.

Within a few hours, we were practicing how to do shots in a rubber cushion, and then I got to administer the first shot before we went home. They said, “Do you like Pink or Purple?” with a smile, and promptly handed her a pink glucometer and said, “OOH, you get to go to Diabetes camp next summer!” We all just stared at them in a glaze, like, “Are we really trying to convince her this is great because she gets a pink meter and gets to go to her own special camp?”

It goes without saying, it was all a little traumatizing. Joe and I held it together for the first few days, just trying to learn and do our best. The realizations have been slow and painful for Sophia. Over the last year we have watched a 5 year-old begin to grapple with the idea of her mortality. It is hard to hear her ask things like: “Am I going to have this for the rest of my life? When can I be done taking shots? Do people die from diabetes? Is this going to kill me? What if I go low in the middle of the night, will I ever wake up?” It hit us very hard when she was screaming out in her sleep a few nights later, “No! Don’t give me a shot! No! I don’t want to prick my finger!” That was it. We both lay in bed crying and realizing that our innocent child, who had not a care in the world, was now faced with a very different reality for the rest of her life.

And the reality is, Diabetes is a life or death illness. Many don’t understand the seriousness of it. We knew that Joe’s mom had Type 1, causing her kidneys to fail, and thus leading to a kidney/pancreas transplant 10 years ago. Quite honestly, that freaked me out, but for the last 10 years, I hadn’t thought much about her past reality. Well, on our second visit to the clinic, we were given a Glucogon shot to keep with us at all times. This is an emergency shot, should her blood sugar drop so low that she passes out, can’t be woken, and/or has a seizure. This gets mixed up, and slammed into her thigh. Then the Dr. says, “Next you call 911, and it will be the scariest 15 minutes of your life.” Great.

The long-term consequences aren’t pretty either. For a diabetic whose blood-sugar is not well controlled, the long-term effects are: organ failure (mainly kidneys), heart disease, amputation, blindness, shortened life. Well there’s something you want to think about for your beautiful five year-old.

So, our lives have changed dramatically since that day. Though I thought she’d never enjoy a cookie or piece of birthday cake again, we have learned that I was wrong. We had so many misconceptions about diabetes, as do most people. The main thing that they now understand is that you have to count carbohydrates. Carbohydrates are what turn to sugar in the blood, and you match those with the right ratio of insulin. So, she can eat sweets, I just have to figure them into her insulin dose. We do avoid hard candies, and liquid sugar like: juice, soda, honey, and jelly, because they go into the blood stream much too quickly for insulin to catch up, and it causes too many spikes and drops in the blood-sugar. How do we measure it all though? At first it was mainly label reading, measuring with measuring cups, spoons, and a food scale. We also used the Calorie King book to look up many foods for carb counts.

For the first few months, mealtime was very stressful. I had 2 younger children who didn’t understand the need to wait until I had all of Sophie’s food figured out and she had her shot before I’d even start making their food. For Sophie, I’d have to write down every morsel in a notebook, for example: Breakfast—1 cup cereal: 28 carbs, ½ c. milk: 4 carbs, 1 tablespoon peanut butter: 3 carbs. Total: 37 carbs. Breakfast ratio: 1 unit for every 15 carbs. So, that’s 2.5 units. Now, if it came to be 2.7 units, I’d have to decide if I was going to round down to the closest ½ unit, risking her blood sugar going high for not enough insulin, or round up to the next whole unit, risking her blood sugar going low for too much insulin. Bottom line, many crazy math equations, and many stressful moments wondering if I’d guessed in the right direction, or if I was going to watch her suffer the consequences of my wrong choice in dosing. Now, I’ve gotten better at not feeling guilty, but the first few months, it was very difficult to not feel like I was the reason her blood-sugar wasn’t always stable, or worse, that she would have long-term consequences if I didn’t keep it under control. In a given day, Sophia would receive at least 3 shots for meals, sometimes an extra one for a snack, and always one long-acting insulin shot to mimic the slow acting insulin our bodies produce naturally. Also, everywhere Sophie goes, she gets to carry her “diabetes bag,” which contains her shots, her emergency shot, glucose tablets, a Calorie King book, a juice box, and alcohol wipes for shot/testing prep.

Almost 3 months ago, Sophia went on an insulin pump. This is a pricey little gadget that looks the size of a pager, and contains a vile of insulin that pumps through a long tube into her needle that stays in her bottom. It’s not surgically placed, so every 3 days we get to change the insertion site on her rump to avoid it getting infected, and to refill the insulin. The insulin pump has really made life easier. She can snack when she wants to, for the most part, and it figures the EXACT dose for me, and I don’t have to round up or down. We test her blood, and the numbers go by remote to the pump. The pump adjusts her blood-sugar and doses her food insulin by the touch of a button. Oh, and she of course picked a pink pump.

We’re happy to say that Sophia did go to Diabetes Camp this summer, and did love it! Though things like pink meters, and pink pumps, and diabetes camp did not seem like things to be happy about on day one, we now see how you can find joy in them. Diabetes camp was amazing, because not only did it increase her confidence in physical outdoor activities without a parent nearby, but it also gave her a chance to be a normal little girl for a few days…the very first day she met a little girl, “with the exact same pink pump!! Can you believe it?!!” (That was Sophie’s quote.)

We have to also say, that though this disease isn’t something we would have chosen, God has used it to bring us closer to Him. When Christ bore the cross He changed the face of suffering for those of us who follow Him. This journey has been so packed with revelation much of which we still cannot articulate. He has shown us what strength and wisdom a 5-year-old can have. He has shown us that we can trust Him to protect her. He has shown her that she can pray to Him for help and for a cure, and that she is uniquely strong to face such unfair challenges. We’ve even realized that 100 years ago, kids just died from Diabetes within a few weeks, and how fortunate we are that Sophia lives now and can have the blessing of modern-medicine to prolong her life. This year has made us so very thankful for our beautiful family, and for every day we get to spend together. God has helped us to strive for walking in peace through the difficult days. So much has changed in our lives, and so much has been realized.

So, back to the Juvenile Diabetes Research Foundation Walk that we are participating in…

It is on October 3^rd in Tulsa. It is less than a mile, but it is a ceremonial representation of our very tough kiddos and all they overcome. It is a fundraiser for a cure. Though I’m thankful for the lessons learned, I am also trusting that God can make a way for a cure. That through funds raised, we can see Sophia and Forest live long, normal lives that don’t involve testing their blood 6-15 times a day, and constantly evaluating what they eat, and hoping they get the right amount of insulin for their needs.

What can you do? Well, of course, you can join us in this prayer. You can also join us in this walk. If you live close, or would like to travel here for the walk (which does not cost to join), the address for signup is:

http://walk.jdrf.org/walker.cfm?id=87369489

Oh, and for families who join the walk, a free t-shirt for every $50 you raise will be given for each of your walking family members.

Or, you can go to the website for a credit card donation (remember this goes towards a very important cure!!):

http://walk.jdrf.org/walker.cfm?id=87369489

Our other option is to buy a t-shirt. We will have them for sale for $15 for adult sizes and $10 for child sizes; the extra money will go towards our team’s donation, and you can have a fun t-shirt that raises awareness in diabetes research. Maybe you can re-educate someone on their misconceptions about diabetes! And you can just buy a t-shirt and come walk with us without any further commitment, but let me know if you’ll be there.

Well, thank you for taking the time to read our story. You are special to us, and that’s why we wanted to share our “reality” with you. There is no guilt on our end if you decide not to donate or walk, but we appreciate your listening for these few moments.

Thank you to so many of you who have shown so much love, thoughtfulness, and prayers for us in this last year.

God Bless,

Sophia and Her Fam

Summer's flyin'

For some, summer's over. Their kids have already returned to school this week (in OK at least). I have the great privilege of homeschooling, so we're in our jammies taking it easy, and still using our blow-up pool in the afternoons.

Ahhh...

I plan to blog about a couple of things in the coming days: why I'm homeschooling, and also the JDRF walk we're going to do in October. So, stay tuned. I'm sure it's hard to check often when I'm so sporadic at posting.

We actually did a little Homeschool preview today for the gals. I wanted to give them a taste of our schedule, and start warming up their brains. I'm not making their first official day for another week or so, but it was a funny reality of how it works. Norah whined because she wasn't in the middle of it all. I had this thought that she would just play in the other room, which she's content doing most of the time. But, this morning, she thought she needed to be on my lap and wanted to write and draw just like the big girls. Jossie did an excellent job at completing all of the assignments (of course several of them just seemed like games, so that was easy), but she did much better than a few months ago. She traced letters, discovered vowel sounds in words and drew lines, made up math stories with little erasers: "I have 4 flowers in the garden, and 2 trees, and 3 flamingos are hiding in it, that's 9!!" I had bought this book of mazes at a homeschool convention. I brought them to the doctor's office last week for her to work on while waiting, and I was shocked today to see she had completed over 30 mazes! She's almost finished the book, and we haven't even officially started school. Somehow I envisioned that lasting longer through the year. But she LOVES them! Then as soon as I told her she was done, and I praised her for being such a big girl, she promptly started screaming at me that she wanted a bottle....

Don't ask!

Poor Sophie struggled. She gets the concepts really quick. Her handwriting has improved a lot, but getting the poor girl to complete a task is like pulling teeth. Of course, it doesn't help when your blood sugar is going low in the middle of it all. Poor thing. We'll get there. At least she agreed that Mommy has done a better job at finding more fun things to do with school this year, so she has hopes that I'm not just going to confuse and bore her to death.

Anyway, we didn't even touch half the things I want to do in a day, mainly because I was just warming them up to the idea. But, I'm totally laughing at how chaotic and cranky the whole process was. Is this my foretaste???

That's OK. I still find joy in watching something new click and watching their confidence grow.

In other news, the TrialNet that Jossie and Norah were a part of to test their autoantibodies for Diabetes both came back negative. Hallelujah!! I choked back tears when reading the letters. We will take them back annually to re-test, but for a year I will breathe a sigh of relief and not prick their little fingers every time they have a screaming fit (not that my little angels have any of those).

Well, I've been very busy doing prep-work for homeschool, fitting in summer play dates, going to St. Louis, dealing with sickness and multiple doctor's appointments; thus the lack of blogging. Tis' life for all of us, I know.

Oh Yeah, He's That Good

God, that is...

I told you we were believing for No Celiac for Sophia. Well, I was very frustrated at her growing discomfort. So, I just had resolved that though I knew God could give us a good report regarding that, I would try a gluten-free diet and see if it made a difference. We couldn't get into the Pediatric Gastro doc until September, and that just wasn't acceptable to me that she should suffer that long. She'd been moaning in her sleep with the pain. Ugh!

Well, the gluten-free didn't seem to be making a difference, but I thought maybe it just hadn't been long enough. I scheduled with a naturopath, because I just couldn't make her wait another 2 months. Also, the Ped. G.I.'s way of testing for Celiac is a biopsy of the small intestine, and I wanted alternative diagnosis techniques for my 6 year-old.

Then yesterday afternoon, I got a call from the Ped G.I. saying they had a cancellation for 3:15 if we could make it. My friend watched the other 2 girls and Joe, Sophie, and I scooted on over there.

He was really a funny doctor, making jokes with Sophie the whole time. My little shy girl didn't quite know what to think, but just kept smiling and laughing. He was getting a history, and I was telling him about her aches, poor sleep, irritability, diabetes and that trauma, and as a baby she had reflux (who knows what makes a difference in diagnosis). He looks at her and goes, "Boy you're a lot of trouble, huh? Are you sure you're worth it?" Joe and I were laughing. She just stared at him smiling with that I don't know if that was funny or not, but I'll just keep smiling and laughing nervously look.

Somewhere in there he pipes up, "Oh, she doesn't have Celiac, by the way." Huh??? After asking our family histories, and gleaning that mom has history of constipation, as does her whole family have IBS (what? too much info? Hey, we all need more fiber people! Sorry family for revealing YOUR poop problems, but you don't really read the blog, so you'll probably never know. Ha! ) he decides she too has Irritable Bowel Syndrome. Whew! Not excited about that, as she's still in a lot of pain, but she doesn't have to forgo bread and good pasta, and EasyMac for the rest of her life! So now, she's on a high-fiber, low fat diet, with no spicy foods, for 3 weeks, and then we can see which actual foods make her hurt once she's feeling much better.

He also gave her some Levisn for stomach cramps/ulcer treatments. I stupidly gave her one before bed because she had been crying all day about her tummy hurting and I wanted the pain to stop. I'm usually good about researching before I give out a new medicine prescribed to one of my kids. Now this morning, my research hasn't revealed much other than it can make you loopy and irritable. But, last night she screamed out in her sleep for a few hours. Not pain screams, just very active dreams and angry words kinds of screams, like Get off of me Jossie! Stop that Jossie! And when I came in to test her blood sugar at 1:30 am, she usually sleeps through it, but instead jumps up and screams, "What are you doing?!! I can test myself!!!" Ok then, I'll let you and hope I can sneak on out of here without you yelling anymore. Good times! She also woke up with swollen eyes and cheeks, like an allergic reaction maybe?? I don't know. I didn't like it though.

So, now we get to figure this one out, but I'm still so relieved about her NOT having Celiac. Yay!!!

All-Bran everything, here we come!

Here's How Bad it Hurt

Jossie and Norah were part of TrialNet yesterday. This is where they take a blood sample once a year to see if they are showing any antibodies or signs that Diabetes could be developing. We won't know for a while I'm assuming, though I'm not too concerned as I've tested them with finger-sticks occasionally when they're excessively irritable, and they always have perfect numbers.

Anyway, they kept their bandages on all day, as you can see. When we were driving back to pick up Sophie, Jossie exclaims, "You know, I think that the needle kind of hurt like a sharp fingernail." So I said, "Well, that hurts, but not too bad." She thinks for a minute..."No, I think it hurt more like the crown that they stuck in Jesus' head!" Me: "Wow! That is pretty bad!" Jossie, "Yeah."

That's our little entertainer there. Always coming up with a new funny thing to say.

Here are a few more pics from this week. The family night on Monday also had 2 baby kangaroos that the girls got to pet. Kind of weird, they were in diapers and smelly, but the girls thought they were cool. Then there are a couple more pics of the silly camp girl from today.

Camp is good!

This is just a follow-up on the last post, for those who are wondering.

She's enjoying her time there. She met a friend the first day with the exact same pink pump! She was proud, because she showed the new friend how to turn the light on the pump.

And I was shocked to learn that she went on a big swing where she had to wear a helmet and a special belt that kept her attached to the swing. They cranked her high until she said stop and then she let go of the swing. She loved it! Yesterday she went canoeing, which she loved. She opted not to go on the very tall ropes course, maybe after her friend was crying at the top since it was so high.

The first night we came to pick her up, there was a free dinner and family swim time. She was so exhausted that she just cried to go home. We agreed, got to the car, and then Jossie cried about wanting to swim. So, Sophie calmed down and decided it would be fun to show off her camp to the family. We had a great time swimming together. I was surprised how much more confident Sophie had gotten in the water after one day away from Mom and Dad. She had a bit of an independent way about her for the entire evening. Even Norah decided she would rather swim without help. She managed to keep her head above water (with a life jacket on, of course). She also would lean backward and put her toes up out of the water. She was also very proud of herself.

The next day of camp, Sophia hadn't gotten enough sleep, so we could hardly wake her enough. She was trying to refuse to go to camp. After she got her wits about her and got dressed and in the car, she agreed she was excited and glad she was going back.

So, as I'm sure is true with most camping kids, she's totally exhausted at the end of each day, but having a great time. Her sugar numbers have been really good, so that's a relief. Some parents are reporting their kids being low all night long, and having difficult times getting their kids #'s to come up. I'm still getting up every night around 2 am to check her and make sure, because apparently exercise can have a latent effect on blood-sugar, so it's worth double-checking.

The heat has been near 100 each day! I'm enjoying the A/C, I must stay. It's amazing to see how red-cheeked the kids at camp are by the end of the day! I feel for the workers. Hope you're staying cool!

Camp Lo-Be-Gon

Well, we did it....she did it, really. She's at diabetes camp. We dropped her off this morning. It is not overnight (mom extremely grateful), but will be 4 full days of hiking, and canoeing, and archery, swimming, education, crafts, etc.

I won't lie...I cried. I started to sob, but choked it back quickly when we pulled up and I saw all of the kiddos with diabetes (and their siblings). I can't explain how it felt. It's Sophie's first time to be around other kids, well little girls specifically, with diabetes. Now, I am a bit nervous about the swimming and letting strangers be the ones in control of watching her there, but that's probably my biggest concern. And last week at VBS, she choked on a life saver. I'm guessing they're life-savers because they have the little hole in the middle, so when they're lodged in your throat you still get a little air. Totally freaky experience as she thought she was dying (even said so through the little hole). I nearly cancelled our reservation at the camp, because I thought I'm just not ready to relinquish that much control over her to others' care. Near-death experiences, no mom nearby...just not ok with that. But, as you can see by the beginning of this post, I've tried to let go of that notion, and just trust God to protect her and threaten the counselors with severe pain if something happens to my girl. Ok, I didn't go that far, don't worry

Here's why the emotions, I think. Diabetes has been such a pain in the patooshki (as we say around here) for the last 9 months. As I've said many times before, it's a life-changer and often so difficult. But, it's a badge of honor for Sophia. It's something she has gotten through with grace and strength. It's all-consuming and something that invades her every time she has to prick her finger, get a shot, report she feels "shaky," change her pump site, or unplug or replug to swim or take a bath.

This is her life. She's so, so proud of herself, and wants everyone she meets to know she has diabetes and now to see her pink pump. The day after she got it, we were at a homeschool event and she was showing all her friends. They mostly just stared at her with confusion and a little afraid in some cases. One girl looked at her so excitedly and exclaimed "Oh, yay! You got a camera!!" We've been in public and she'll insist we tell a stranger that we happened to strike up a conversation with that she has diabetes and a pink pump. She doesn't get it that it's a little akward to bring that up to strangers, so we usually find a way to tell them, just to make her happy, even though it does end up being, well, akward. She thinks all kids she meets should be so excited about her pump. Needless to say they don't get it. She handed it to our little friend who's nearly two the other night, and the friend promptly yanked it, because it looks like a toy. Now, we totally understand that kids just don't get it.

She got to show off her finger-pricking and educate 13 kids at VBS all about diabetes. She even explained how her pancreas doesn't work, but their's does, and she has to keep track of her blood-sugars to make sure she's ok. They all just stared at her and one kid yelled, "Ooh! Is it contagious?!!" I felt sorry for her. I feel sorry for her every time she akwardly shoves her pump in some kid's face, and they look at her like she's weird, and she's just soooo proud. It doesn't make her sad though. Somewhere inside, she knows they don't understand, but she's going to tell them anyway.

So, back to today.

Wow! To be a totally and completely normal child. To be just like everyone around you. I'm crying just typing it. It's amazing. I'm so happy for her to meet some friends that are 6 years old, and have diabetes, and are on pumps or shots. She's in a group of about 10 little girls with 2 adult counselors, and it looked like 2 teen counselors and they ALL have type-1 diabetes! She's completely accepted and completely normal. Now, the nurse gave me bug-eyes when I told her she gets hives and asthma often outside in grass, and around animals. But, that's ok. Lots of kids have allergies and asthma, and I'm sure she'll be just fine there. (That used to be a big deal to me before October 6, 2008).

Well, here's hoping I can not obsess on these things all week, and can just get some things done at home. Say a prayer for her this week. It's a big deal. Oh, that was the best picture I could get of her with Jossie hugging her good-bye. She has been so excited for 2 weeks telling everyone she's going to diabetes camp, but today after she changed into her new t-shirt, she got pretty quiet and nervous. She left me without tears though......

Sweet girl.

Going Well.

I am quite exhausted, so blogging hasn't been a high priority, but overall, the pump process is going quite well.

We had to switch infusion sets, which is the needle or canula that stays in her fat layer on her bottom. The needle version was waking her up at night and leaving big bruises from where she'd hit it hard when rolling over on it. The nurse tried to tell me that it was psychological, and referred to her as "the princess and the pea." Whatever. I say, until we walk a mile in her shoes, we can't really say, but that's just me. Anyway, we switched to a softer canula tube and she hasn't complained since.

The pump has really done a great job at keeping her blood sugar in "normal" range. I put it in quotes because it is still nothing like our normal, but it is under 200 most of the time, and I can tell she feels better. Her behavior is so much better. It makes me tear-up when I think about how different she is the last 2 weeks. She is calm and reasonable, and sweet. It's really precious and it makes me wish she'd gone on the pump sooner. But, there's no use in looking back.

I'm exhausted because I still have to set an alarm every night at 2 am to check her and make sure she's not crashing. We've only had to wake her up once to force some carbs in her, and she really didn't like that. She doesn't wake up well, so it took a long time of her being angry and screaming before she realized she had to ingest something. The next morning she didn't even remember it.

She has had more "lows" on the pump. This is where her blood-sugar dips below 70 and she has to get some carbs. It seems to happen when playing or exercising, and we just haven't mastered the art of properly carbing beforehand. One day she didn't quite finish her cupcake and we got distracted. I left for the store, and Joe was busy working on the yard. She was watching a movie with Mamaw (and this is often a distracting time for her to not realize something's going wrong). She finally started panicking and running around calling for Joe. When he tested her, she was 34! She was starting to pass-out when he came back in the room with juice. Luckily he got her to wake up enough to drink it. It freaked me out though. Mom called me to come home, and everything was fine by the time I got there. But, it was a yucky reminder of the seriousness of diabetes and the fact that things can go wrong fast.

It's those moments that have me wondering if I'll ever be able to fully relax about it and trust myself with the disease. The fact that kids play hard and are constantly growing adds so much to the factors that can throw things off. Maybe when she's an adult it will seem more predictable.

She still complains of her tummy hurting most days. We can't see the GI doctor until September, so we just have to wait until then to see if it's celiac or something else, or hopefully nothing at all.

Well, off to sleepy-ville...at least for 2 hours. Woo-hoo! Nothing like nap-sleeping.

The Pump is in My Bottom

Yesterday, Sophie woke up and came into my bed and started singing a song:

The pump is gonna be in my bottom today,
in my bottom, bottom, bottom, today.

And then cracked up at herself.

And then today the song went: (try to guess)

The pump IS in my bottom today,
my bottom, bottom, bottom....ha, ha, ha, ha...:-)

She handled it all well yesterday. She wanted to skip past the part where Joe and I had to sit through the class and learn how to use, fill, and change sites on the little thing. But, when it came to actually putting it in, and getting it started, she did great. Very calm, and very proud of herself. Wanted to call her grandparents and tell them all about it, right way.

The overnight part was, as we feared, not so fun. It wasn't bad in the "she freaked out" sort of way. She actually tested well. But, the first time we tested, she was 79, which isn't technically low, but I was afraid she'd go below 70, so I made her drink a little juice.

The second testing at 2 am went fine too, but she couldn't go back to sleep. Somewhere in there, Norah and Jossie picked up on the tension, and couldn't sleep either. So, I spent a couple of hours in there trying to lull everyone back to sleep. When I wasn't in there, Joe was. Norah was in my bed, and completely crying, fitful, etc. Bummer.

Probably we had about 2-3 hours of sleep total. I'm praying tonight goes better. Unfortunately, because of the crazy lack of sleep, her behavior went off the deep end before bedtime tonight. So, it's all a little stressful.

So far, she hasn't had any scary moments. It's not regulating her blood sugar as well as shots were yet, but I know that will get better, as we can do so many more tiny adjustments that can't be done with shots.

Anyway, thought I'd give an update for anyone who might have been wondering. I'm too tired to say much more.

Hopefully pics of the pump tomorrow. As well, as deep, insightful, inspirational thoughts. Ha!

Mostly Pics and Prayers

First off, please be praying for Sophia in the coming weeks/months. Two reasons: 1) She's starting the pump on Wednesday, so that's going to be a huge transition. She doesn't do waking up in the middle of the night well, so we'll see how that part goes, as we have to test 1-2 times nightly for a while. 2) She was pre-diagnosed with possible Celiac disease this week. We can't get into the specialist for 3 months to find out if it's true. You can google it to understand it more. But, basically it means no wheat, or any products with gluten. So, no normal mac-n-cheese, cookies, cheez-its, sandwiches, breaded nuggets, etc. The things that kids eat, and the things that I've come to make our "normal" diet out of for keeping her numbers stable with diabetes. So, my prayer is that the initial report is wrong, and that this is NOT a disease she has to live with. Please agree with us for that. I feel God wants us to trust Him to make that happen. We already accepted that we would trust Him to get us through if it's true, but somehow trusting Him for healing, and a good report seems more outside of what we believe sometimes.


Now for pics.

The toothless grin is here: #2 fell out this morning.





Here's the pic she drew of the toothfairy for the toothfairy:



Norah trying to fill some big shoes.



And being Daddy's "Ba-Pa!" (Back Pack).



"Queen Princess Jossie" during her last day of school:



And hoping the goofy knight will rescue her:



Our tea party for girls only on Saturday.



Nana and Aunt Rosemary donning their wrapping paper hats with style.



Sophie decorating the paper for our paper fans we made at the party.



Jossie politely sipping.




Norah politely sipping.



Jossie thoroughly annoyed with her hat. Actually she loved it until Sophie was thoroughly annoyed with her own hat, and then Jossie followed suit.


The girls celebrating their summer birthdays together at the homeschool co-op.

Mother's Day

First off, a big Thank You to our moms. They're such a blessing. And as we are now raising our own kids, we wonder how they ever survived our antics. xoxoxo

I've had a good weekend, and have felt peaceful and blessed. Many laughs too. My kids are deliciously cute when they're in good moods (and when I'm in a good mood).

I already posted on Sophie's biggest achievement of the week. She is also growing to be so thoughtful. We went to the $1 jewelry shop this week, and on her own, she decided to find her own money and buy a necklace for me in secret. She hid it from me until today. Jossie also did this, but it wasn't as secret. I wore both of them together today, and an earring from both...a little mismatched, but they loved it. And I loved that they're starting to think of others. Sophie hugged me so many times today and said "I love you" and "Happy Mother's Day." She's also getting really good at drawing. She drew a picture of the tooth-fairy last night, and made us take a picture of it, since it would be disappearing with the tooth. :-)

Jossie has the funniest way of saying things. She likes to use a lot of adverbs right now, like actually, perfectly, especially, etc. We had a tea party with Nana and Aunt Rosemary today. Jossie has hit this very conversational age. She loves girlie things like tea parties. She loves to ask, "So Nana, how's your day been?" And she loves to talk, and talk, and talk.

Some of the funny words she says:

Ard (as in playing in the back ard)

o-o (as in yo-yo)

ogurt (as in yogurt)

ell (as in "Sophie elled at me")

awn (as in "I dust had a big awn, I'm tidered" as in "I just had a big yawn, I'm tired.")

She tip-toes everywhere, does a spin across every floor she's walking upon, falls off her chair during dinner or lunch every day from wiggling so much, and runs into every door frame or door knob in the house at least once a day. In fact, a couple of weeks ago we were at a water-park hotel, and Sophie clocked herself between the eyes on one of the water spouts. She got a huge knot and slight black eyes from it. Jossie did the same thing a few minutes later, and her hard head sustained no damage. I'm thankful for her head of steel. She fell off of the top bunk and landed her head first on the wooden toy box a couple of months ago, and again, not even a bump. Angels surround that sweet girl.

She has funny ways of doing things, like she walks through our hardwood floored house, which inevitably always has crumbs on it, and wipes her feet off on the furniture as she's headed back to her room, though she doesn't complain about the mess, because it's mostly caused by her. She drops whatever she doesn't want, wherever she is at. She will roll around on the floor and pretend she can't hear you for an hour at a time, singing songs, and doing make-believe, if you're trying to force her to pick up one single toy.

And Man, is she sweet. She loves to tell me what a good Mommy I am, and she loves alone time with Daddy. She snuggles, and kisses, and giggles, and makes me smile whether I'm looking at her or not. She also learned to write her name this week, and is sooo proud of herself. She likes to avoid homeschool, which I don't mind, because she's so young. But, this week when she accomplished that she looked at me with the biggest smile and squealed, "I like learning!!" Aww, she deserves a bit of time on the blog.

Norah has been just adorable to watch lately. She loves it if she's had a long nap and outlasts her sissies at bedtime. She gets all of the attention for another hour, which involves coloring, snuggling, "chatting," playing babies, or doing projects like putting socks on her hands to make puppets. She loves to kiss and stroke your arm or Joe's back of his head. She's even said, "I yuv jou Daddy." Yes, I'm jealous.

She has a great vocabulary...most of it needs parental interpretation, but we are at that stage where we get a lot of what she's saying. Like "ba-pa gink" is Back Pack Drink, which means she wants her Dora drink cup (she calls her Back Pack, because of the song on the show so frequently sung). She usually wants "I" in it (ice), and she loves to eat "gragoos" (cookies, crackers, general snacks).

She's funny too. When she's overly tired she gets goofy and we say she has bubbles in her. So, the other night she was trying to get wound up, and we mentioned her having bubbles. Then she tried to get us sucked into a silly game of running around the coffee table. After a few tries, I said, "Daddy said it's time to get quiet and go to bed." She looks at him and rolls her eyes practically, sighs, and starts walking to the bedroom, and says, "Nigh-nigh Bubbles." Then she giggles in her exasperation.

Ahh...sweet babies.

So, in reflecting on Mothering, I have so many thoughts...though you'll only be privvy to a few.

Some of my unhappy surprises:

Whining and screaming are too often occurrences and wow they're annoying.

That it hurts so bad when your child is hurting.

It is maddening that you can't completely control your child's health, nor determine their future, nor totally protect them from harm.

Some of my happy surprises:

That I can cry when I stare at any of my children, just because I'm so in love.

The sound of giggles is the most beautiful sound to my ears (well, unless it's accompanied by naughty/sneaky behavior of course).

The smell of their skin, and the feel of their cheeks on mine, is like Heaven.

That I have big dreams for their future, but I love the tiniest sweet moments right now.

Losing Teeth

Sophia has lost her top front tooth, which looks pretty funny to all of us. It was a little traumatic, as it was spurred on by the eating of an apple, and much bleeding followed. But, after giving a list of the types of teeth she has (A lost tooth, a loose tooth, a new tooth, a sweet tooth, an old tooth, a bottom tooth, a top tooth, and a white tooth) she went to sleep and is awaiting the tooth fairy. Sadly, she's expressing her doubts about the magical creature, since she recently found a four-leaf clover and hasn't seen anything magical or "lucky" come of it. You can see her reasoning for doubting the fairy, right?

Can I say this one makes me a little sad? Baby teeth are just so cute. She always had this gap between her two front teeth, and when she was 2 or 3 she would ask me when her other tooth was going to grow in, you know, the one in the middle, she'd say. Awww. It's a little hard letting go of the baby...

Well, anyway, the tooth fairy has had fun with using the moment to speak some truth into her life and giving her a smile and a buck all at the same time.

Here's the tooth fairy's latest letter:

Dear Sophia,

Wow! I can’t believe you’ve already lost your front tooth! Was it scary when it came out? I took a peak, and it looks like I’ll be back soon for the one right next to this one.

It looks like you have still been brushing well, as this tooth is also shiny-clean! Keep up the good work!

You look so peaceful and sweet when you sleep, just like God made you to be. I know you are learning more and more about Him and how much He loves you. Jesus is the best friend we could ask for, a more precious gift than even my little token for your tooth. I know He will continue to give you a strong heart and courage as you conquer the tough times in life. He told me recently how much you have been learning to trust Him. That makes me happy. And the tooth fairy needs lots of happiness to keep these wings fluttering.

You are such a sweet girl, Sophia. I must leave now to gather teeth from other boys and girls. Enjoy my little gift to you.

I’ll see you again very soon! You are keeping me busy!

Your Friend,

The Tooth Fairy

It also has this beautiful picture of the sweet fairy at the top, though it wouldn't cut and paste onto the blog. Oh well.

May you too keep believing in fairies...or at least the power that comes from believing you are this precious person who is loved and created by God alone.

The Pump is in the Mail

I got a call on Friday from our diabetic pump company. He said we were approved by our insurance company, and all he needed was a little information.

Sophie chose a pink pump.

Of course.

Anyway, we worked out a financial plan, and as soon as I can get the lessons scheduled with the clinic we are a go for the next phase.

I hear it's a rough first couple of weeks working out the kinks and new ratios. It makes you feel a lot like the beginning again for a while. I'm not excited about that, but her birthday is coming up, and I'd love to be on the upswing and have things more stable by then.

I cried when I got off the phone. I'm just excited to see us move forward and maybe see some stability.

Keep her in your prayers as we step into this new phase. She's also had a lot of complaints of not feeling well lately. We don't know if she's just hypersensitive to her body because of the whole diabetes experience, or if she is sick with something. We'll be checking into that this week too.

Addendum: Darn! We can't get a start date until May 20th due to the clinic lady being in Jury Duty. Oh well, I'm sure there's something to be worked on or learned in the waiting process.