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.

1 comment:

  1. Thanks for sharing. My niece was diagnosed at 23 months. The stories are all so similar. Kids are getting diagnosed younger and younger. My prayers are for there to be better treatments and a cure in the near future.

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