Sunday, August 23, 2009

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.


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."


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!"

Monday, August 17, 2009

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 3rd 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:

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!!):

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

Thursday, August 13, 2009

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.


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.