My sweet girl, so happy...
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:
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
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