Tuesday, November 26, 2013

Our Stories Matter: Regina and Luke’s Story

Life is so incredibly full these days . I shared on Facebook already, but I’ll make it blog official too!

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Our family is growing! My pregnancy is going well, and I will write more about it in the weeks to come.

But right now, I am really excited to share a friend’s story. November is Diabetes Awareness Month, and over the past few months I’ve had the privilege of learning more about parenting a child with Juvenile Diabetes. If you don’t already know, Juvenile or Type 1 Diabetes is very different from Type 2 Diabetes. One of my son’s classmates has juvenile diabetes, and his mother works at the school. I work with her during my hours there, and I watch as she helps her son navigate the world safely. I watch as she strives for a tricky balance between encouraging her child’s independence and knowing that she absolutely needs to be there or nearby to keep him safe. When I cringe and agonize over the sugary treats that come with school parties, I know that she’s struggling even more. I know that as Luke gets older, she and her husband will equip him to confidently manage his condition, but in the meantime, it’s a round the clock job for mom.

Regina is beautiful inside and out, and she handles this parenting gig with grace and humor. I’m really excited that she’s agreed to share her story here, because it matters. Our stories as mothers matter. It’s in knowing each other’s stories that we are moved to grace, empathy, and compassion in moments when we might otherwise be tempted to judge. When we share stories together, we open our hearts and we break down walls so that we can support one in another in this crazy thing called motherhood. Because as I’ve said before, mothering is hard, but it’s a whole lot harder if we think we’re doing this hard thing alone.

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This is Regina’s story.

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My Perfect Imperfect Little Life: Our journey with Type 1 Diabetes

I will never forget the day we heard the words, “Mr. and Mrs. Goldy, I’m sorry to tell you this, but it’s very likely that your son has Type 1 diabetes.” We listened to the emergency room doctor as he was telling us that Luke, our ten month old baby boy, had sugar levels over 700 and how normal is anywhere from 80-100. He explained that his PH levels were off and that his blood was acidic and how that would explain the many symptoms he’d been displaying over the last several weeks. Tears were streaming down my face and I asked innocently, “will he outgrow this?” The doctor explained how you cannot outgrow Type 1 diabetes. He tried the best he could to comfort us and assured us that we brought our son to the best hospital. About an hour after admission our baby was sent to ICU where he was treated for Type 1 diabetes, hydrated, and given insulin. His body was limp, as it had begun shutting down. Seeing him hooked up to all of those machines just broke my heart. He was so dehydrated that it was hard for the nurses to find his little veins. I wanted it to be me that they were poking. Although I knew it was what had to be done, it sickened me. My husband and I were scared, but determined to face any challenges diabetes held head on, together.

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In the days that followed we received a crash course in type 1 diabetes. We learned what the disease is, how to test blood sugar, fill a syringe, inject insulin, count carbs, what to do when blood sugar was too high or too low, what ketones are, how to log, how to cope, etc. What we didn’t learn was how to live with it once we got home. We didn’t know just how life changing it would be and how every single second of every single day would revolve around our son’s pancreas. We became his pancreas. Type 1 diabetes is an autoimmune disease which means Luke’s pancreas doesn’t produce insulin anymore because something caused his body to attack itself. From this point on for the rest of his life his blood sugar will need to be tested multiple times a day and he will receive insulin for his survival because his pancreas doesn’t work anymore.

After three days in the hospital we went home, were reunited with our two year old son Sam, and began our “new” life. We were flustered every meal because we knew that meant testing and drawing up the appropriate amount of insulin. Try to imagine getting a ten month old to eat exactly thirty grams of carbohydrates every meal while also ensuring those are healthy meals he’s eating and not junk. Then try imagining a two year old fighting for your attention while you are trying to calculate, log, inject the insulin, and get the ten month old to eat everything in the dish so his blood sugar doesn’t go too low. It literally has taken us years to adjust to this new way of life. Living with type 1 diabetes can be compared to living life on a rollercoaster. We have our good days and our bad.

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One thing any parent can relate to is the loss of freedom. Most of us feel a loss of freedom because once you have children your life changes drastically and you can’t always go where you want when you want.  Nights out usually mean getting a babysitter or relative to watch over the children. A parent of a type 1 diabetic however, can’t just call any babysitter or relative to come watch their child.  Unfortunately finding a babysitter is very difficult for us because this means testing and treating is required. And unless you do it all the time, it could make you uncomfortable and us a little nervous about leaving our little one in your care.  In our case, only one of our mothers is able to test and treat, and none of our friends really know how to test or treat either. Luke has never spent a night away from us. If I plan to go somewhere at night, I am most comfortable if my husband is home and if he is away or out, I am the one home. Nights out as a married couple are few. When we do go out it’s only for a two hour period because we feel the need to get home for the night time check. We test around the clock which is necessary because Luke is still young and there have been times when his sugar has dropped in the middle of the night. So our social life isn’t like it once was. And though I am really ok with it, there are times I envy the ability others have to just hire a sitter. There are times I envy that freedom. 

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We have learned that although we can’t change certain situations, we can change our attitude and how we deal with them. For example, parties and holidays can be stressful because there is the added anxiety of not knowing what food and drink will be served, what kind of cake it is, and if there is going to be candy in the goody bags. Though it is true that a Type 1 diabetic can eat almost anything as long as it’s treated with insulin, we have found that there are many foods that are more challenging and can negatively affect Luke’s blood sugar such as pastas, pizza, cake, cookies, bagels, and bread. Many of these are staples at children’s birthday parties or holiday celebrations. Unfortunately, even when treated with the right amount of insulin some of these things can spike Luke’s sugar level and without careful observation could cause a dangerous low afterward. So I test more frequently at parties and on holidays because I do allow my children to eat some of these things on special occasions. Yet, you may also find me frazzled, raising eyebrows, maybe even getting teary eyed because it is in circumstances like these when the disease disheartens me the most. It is in these instances when Luke is among his friends, and they are laughing and playing and eating whatever is being served that the disease seems to be on my mind the most. I’m doing my best to find a balance between something dangerous for Luke’s health and letting my son just be a kid.

Things don’t always go as we plan, and my journey is not quite the way I envisioned it would be. It’s far more challenging but far more rewarding too. In the trials we encounter, we find our true strength and purpose. Every day I am thankful for the gift of motherhood, the gift of a wonderful husband, and the gift of two beautiful boys. Would I change any of it? I would not. It’s perfect in its imperfection.

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I want to thank Regina for sharing her story, and I encourage you to learn more about Juvenile Diabetes. Regina and her husband are continually raising money to support research and the hope for a cure, and you can find their fundraising page here.

We’re all in this together, and we all face our own challenges. So often we have no idea of what those challenges may be as we pass moms at school pick up, the grocery story line, or soccer practice. The more remember that as we’re out in the world, the better place that world will be.

Sunday, November 10, 2013

Overcoming the fear of falling… or failing.

It’s a rare quiet moment in this house. The boys got a little extra sleep last night after weeks of night waking and very early mornings. They are content digging through craft bins and creating masterpieces while they quietly sing to themselves. I have no doubt it won’t last long, but I am filled with gratitude for this moment. I am filled with gratitude for their contentment, something we don’t see often enough around here.

I think I am more acutely aware of the moments of simple and profound joy because of our struggles. A few weeks ago, my first grader learned to ride his bike without training wheels. It’s an exciting day for any kid – the joy, the pride, the freedom. It was definitely all that for B. Just a few months away from his seventh birthday, most of his friends were riding confidently on two wheels, and I think B could have been some time ago. But he was scared. He was scared he wouldn’t be able to do it. He was scared of falling, yes, but more so he was afraid of failing.

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When B gets an idea into his head, his anxiety takes it and runs with it. It grows so large that he is constantly in a state of fight or flight not knowing which to do. For more than six months, B refused to even try to ride his bike without training wheels. When you mentioned it, his whole body would tense and he’d get very angry. He didn’t know what else to do. He had to protect himself from the fears.

So a few weeks ago, I suggested that B take to the really big hills surrounding our house on his balance bike. We’d taken a slightly smaller bike and removed the pedals so he could practice his balance. Up until this point, it hadn’t done a lot of good. We’d spent years telling the boys to not take anything with wheels down our steep driveway or the front or back yards. They are fierce for sledding but a recipe for stitches and broken bones with small boys on wheels. He was bigger now, and I thought it was worth a try.

B wasn’t sure about my suggestion but he hesitantly put on his helmet and grabbed the bike. He started on smaller hills and quickly got to bigger/steeper ones. I stood to the side cringing pretty sure he was going to topple over the front of his bike on the steepest ones, but I was thrilled he was taking the risks and figuring it out. Finally, he figured out he could go down the long hill of a driveway in the church parking lot and with the momentum continue to ride around at the bottom. His balance was perfect.photo 2

The next day, his Dad tentatively suggested they try the two-wheeler with pedals. They took it over to the church parking lot not sure how it would go. We all knew B could do it, but we weren’t sure if he was ready to risk falling/failing. My husband was getting our younger son set up on his tricycle before helping B, and before he could finish he turned around to see B gleefully riding circles in the parking lot. I was inside cooking dinner and got a phone call to come outside so B could show me something. I figured he was riding the bike, but honestly nothing could have prepared me for what I saw.

There B was, confidently doing figure eights across the parking lot. He looked like he’d been riding for months, but the truly breathtaking part was his joy. He was absolutely cackling with joy as he pedaled his legs as fast as he could. I could hear it across the parking lot, across the yard, from my front porch. His joy filled the air and turned everything it touched. The sun shined brighter. The grass was greener. I could feel it in my toes. With tears in my eyes, I was grinning so hard my face hurt. It wasn’t that my boy was riding a 2 wheeler. That was cool. But really, it was that he had taken a risk, he had pushed his anxiety aside and tried something hard, and the resulting pride and joy were so big he couldn’t keep them in if he tried.

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I recently read an interview with Sara Blakely, founder of Spanx. I was drawn by its title:

Billionaire Sara Blakely says secret to success is failure

She explains in the interview that every week her dad would ask her, “what have you failed at this week?” He would high five her failures as much as he would her successes. If she didn’t fail at something, it meant she wasn’t putting herself out there enough. We’ve all heard that failures are learning opportunities, stepping stones, and all that. But I just love this idea of truly congratulating ourselves when we fail. We tried something hard. We put ourselves out there. It didn’t work out, but it meant we weren’t sitting at home twiddling our thumbs or hiding under the covers.

I hope I can share this with my kids. I hope I can give them an example of being brave, putting myself out there, and not letting a fear of failure win. There’s a beautiful resilience modeled in the applause of failure. I think I will start by asking myself
“what have I failed at this week?” in the hopes of showing my boys while they are young that not only is it ok to fail but it’s a sign you’re living life out loud and equipping yourself for success.

So, what have you failed at today?