Ten Years Later…Our Family’s Diabetes Story

Share with friends! Pin on PinterestShare on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on Yummly

The end of this month marks the 10 year anniversary of our son’s diagnosis with Type 1 Diabetes.  It’s been quite the journey for him, for me as a mother, and for our entire family.  I wrote this last fall, but to mark this milestone, I wanted to re-post it in recognition and celebration.  He is now almost 16 years old, happy, and doing well. This is dedicated to him, and to all the families with darling children that have been and will be diagnosed with Type 1 Diabetes.  Ten years later…this is our family’s diabetes story. xo

…..

Sometimes we experience life-defining moments that while we’re right in the middle of them, we don’t quite realize how much of an impact they will actually make on our lives.  Nine years ago this week I had such an experience, that forever changed not only my life, but my son’s, and that of our whole family.

We had traveled to our hometown of St. George, UT, so my husband could run the St. George Marathon.  We only had Ryan at the time, who was 5 years old–almost 6.  It was typical of most vacations–too much good food, too many late nights, and a crazy schedule–so when Ryan was eating and drinking a lot, and going to the bathroom often, (and since he was fine otherwise), I just attributed them to the vacation. We came home, and what happened over the next few days is forever imprinted in my mind.

 ryan kindergarten logo

The day or so after we got home, we were at Joann Fabrics, and we were there for just under two hours.  During that time, he had to  go to the bathroom 7 times, and it wasn’t just a little.  Alarms were going off in my head, and I just knew.  I just knew that something was wrong, but I don’t think I was ready to fully accept what it was.  We are very fortunate, in that one of our very best friends is a doctor, and Ryan was in his care. I called him at home that night, explained the situation to him, and he said, “Kierste, I’m pretty sure I know what this is, but I need you to bring him into the office tomorrow so I can be sure.”  My heart sank, because in that moment, I knew it too.

Within the first 10 minutes in the office, and based on a very high blood sugar, it was confirmed that he had Type 1 Diabetes. I remember the doctor saying the words, but it was like they were rattling around in my head and wouldn’t quite resonate so I could understand them. I didn’t know everything about diabetes, but I knew enough to know that a very difficult path lay before us. The timing also couldn’t be worse–my husband was out-of-town on business, and it was going to take him some time to get home, so we were on our own for the time being.

Everything after that moved at lightning speed. A few hours later we were sitting in the Diabetes Center at the hospital, where Ryan was to receive his first shot of insulin, and I was to be trained on how to give them.  I was scared to death, not for me, but for him.  This is the kid that screamed the whole time we cut his hair, and the one that we had to use “magic rubber hands” on his fingers when cutting his fingernails. To say he was afraid of shots was an understatement–this one seemed insurmountable, and  all of a sudden we were faced with a lifetime of them.  The nurse that helped us was exceptionally kind, and when it took over a half an hour to get Ryan to have his first shot, she was right there with us, as patient as could be.  As I listened to her talk about daily shots of insulin, up to 10 more pokes a day to take his blood sugar, and counting every carb he put in his mouth, I resolved that I would be strong for him–that my fear and worry would take a backseat to my role as not only his mom, but now as his caregiver in a new way, and that I would do everything I possibly could to help him both physically and emotionally. His overall experience, and his life would be greatly influenced by how I handled things, and how well I was able to manage his care.

It seemed so crazy that we would be on our own after only a few hours of training, but there we were, at home, just Ryan and me. When it was time for the first shot, we went into the bathroom, and when I looked into his tear-filled eyes, it took every ounce of inner strength I had to stop the tears from welling up in my own eyes.  In all these years since, I’ve not known anything more heartbreaking than that one moment. The days and nights that followed were long and arduous, as we worked diligently to learn what we needed to learn, and do what needed to be done.  I worried every time I put him to bed, wondering if he would wake up in the morning.  Through it all, we had a lot to be grateful for, and we really tried to focus on all the blessings we had, and all that we had been given. He was here with us, and we had the medical technology to help keep him here.

We received an outpouring of love and support from those around us, and that honestly made all the difference.  One particular family brought us at least 40 packages of band-aids, because I had told them that Ryan insisted on putting a band-aid on every single time he tested his sugar or got a shot.  Their kindness, along with all the others, really buoyed up all of our spirits, and helped us to deal with the gravity of what was now our reality. Our doctor and friend was amazing, and I credit him for helping us get through those first weeks. Without his support, medical excellence, and dedication to Ryan, our experience would have been much, much different.  As time went on, we adjusted, and a “new normal” was born.  All the things that went along with keeping Ryan healthy and well just melded into our daily life, and it was as if it’s how it had always been.  He was in kindergarten when he was diagnosed, and the school aspect was another part that needed to be learned as we went along. We are thankful every day that our dear friend, and his doctor was placed in our life–I don’t believe that it was an accident. Through his valiant efforts, Ryan avoided hospitalization on several occasions, and he worked tirelessly to ensure Ryan’s well-being. It’s to his credit that Ryan is where he is now.

The past nine years have brought ups and downs. Ryan has struggled with wondering why this has happened to him, and dealing with being “different”.  He has shown more courage than one should have to show for a child his age, but I’m so proud of him for how he’s handled it–and still is.  I’ve seen him come far closer to death than I will ever be comfortable with, as he was hospitalized twice for DKA. He’s had to face his own mortality, and we are still teaching him about the effects and consequences of not taking care of himself now. It’s incredibly difficult to see your child have to deal with those issues long before they should have to.

{the hospital takes these pictures to keep in their file for security purposes}

ryan hospital 1

ryan hospital 2

ryan hospital 3

My journey has been different than his, but they’ve been side-by-side. I’ve learned a tremendous amount about the medical aspects of diabetes, but along the way I’ve gained other knowledge that I consider just as valuable.  When you’re the parent of a child that has a chronic illness, your capacity for empathy is limitless. You see other people that have their own struggles through different eyes, and you’re capable of understanding just a little more than you did before.  I believe that through our trials we’re made stronger, and the growth we can experience is unparalleled.

ryan logo

Thankfully, Ryan is happy, healthy, and thriving.  He just turned 15 years old, and we’re figuring out how to handle these crazy teenage years in more than just the usual ways.  Nine years in…today we’re celebrating the road we’ve traveled, how far we’ve come, the wisdom we’ve gained, and that I’m the mom of such an incredible boy.

For those of you that are also on that journey, especially those just at the beginning, and trying to figure things out, my heart is with you.  I know very well how overwhelming, frustrating, and scary it can be when you’re faced with such a diagnosis for a child you love so much.  Know that it DOES get easier.  You can do it!  It will be hard, but gradually you and your family will adjust to a “new normal”.  Learn all you can, don’t be afraid to ask a million questions, and know that They are so lucky to have you in their corner, fighting for them, and being there to hold their hand and big them tight when things get tough. We’ve found so much hope and strength along our journey, and ten years later, I can say that I’m grateful for it.

Share with friends! Pin on PinterestShare on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on Yummly

About Simply Kierste Design Co.

Kierste is a blogger who shares her love of all things DIY. She is the mother of six, and focuses on simple ideas and projects to make a house a home! When she's not chasing around two sets of twins, a teenager, and a baby, she's working on a project, training for her next race, reading one of her favorite books, or baking something with chocolate in it.

10 thoughts on “Ten Years Later…Our Family’s Diabetes Story

  1. My heart goes out to you, Kierste. I am an older mom (51) and my 16 year old son, Ian, was born with a birth defect called Gastroscesis. it is when everything in your stomach develops outside your body in the womb. He was born by C-section at 32 weeks with his small intestine, large intestine, colon and part of his liver hanging out. I was 35 when he was born. It was so shocking and a nightmare experience for me. We spent weeks in NICU with him in a medically induced coma. Our journey, like yours, has been riddled with ups and downs. We have had several medical emergencies that required surgery and/or hospital stays. We have a specialist for nearly everything you can imagine. At 16, Ian is about as normal as most kids, though severely underweight (72 lbs and 5′ tall) and small for his age in both height and size. He has medications he, too, will have to take for the rest of his life. Only parents who have went through something similar would understand how hard this is for a parent. Not only difficult to see your child suffering, but it is difficult for the parent to deal with all that comes with it. I, too, am blessed with the most wonderful son a mother could ever ask for. He is kind, gentle, loving, compassionate, and sweet. He is well liked at school and by all those who know him. Sometimes I think the good Lord gives those of us who He deems strong enough mountains like this to climb.

    1. Karen, he sounds wonderful! I think you’re right–we were given these awesome boys for a reason, an we’re both so lucky to be their moms!! Much love and best wishes to you, your son, and your family. Thanks so much for your comment–xoxo

  2. My husband was dx at 5 or 6 years old w/ juvenile diabetes. I thought I’d give you some encouragement and let you know that 30 some odd years later, he is a healthy and active father of 3 beautiful girls.

    The future is brighter than ever for Type 1 diabetics!

    :)

  3. I was diagnosed with Type 1 diabetes at age 12…almost 19 years ago! I am blessed to be the mother of three wonderful children, and I plan on living to see my great-grandchildren!
    Thanks for sharing your hope and faith!

      1. First, I want to say that your son is so very blessed to have a loving family and a mother like you! I am so grateful for my parents and siblings, and for their patience and support for me while I navigated through those teenage years! :)

        There were definitely some hard days…the days that I didn’t feel well, the days that teenage hormones would interact with the insulin and cause crazy swings in my blood sugar levels, and the days that having diabetes was just inconvenient (i.e. having to check my sugar levels every time before I drove a car, having to excuse myself to check my blood or give a shot in the restroom while on a date, etc.). However, the growth that I experienced was tremendous. Like you mentioned, I gained greater empathy for others and their trials. I gained a stronger testimony of prayer. I gained a greater appreciation for life, and for the blessing and miracle that these mortal bodies are, even with their limitations. I became more grateful for the things that my body could do…that I could see, hear, dance, laugh, sing…that I was alive! I came to understand what an incredible time it is to be on the earth, and that even though there is still a lot to learn about diabetes, there are so many resources available to help us live healthy and full lives. (Is your son on an insulin pump? I started using a pump as a senior in high school, and I wish that I had started on it sooner!)

        I remember the feeling of accomplishment I had once as a teenager when I completed a pioneer trek. There were so many things that I had to worry about, but I was blessed with great leaders and friends who helped me safely make it to the end. Everyone was grateful to be done, but I think that I appreciated the accomplishment even more.

        The best advice I could give your son is to ALWAYS be prepared (carry extra supplies, glucose tabs, etc.), to not be afraid to speak up for himself when he needs to take care of his diabetes (i.e. to talk to teachers about what he might need to do if he is experiencing a low during class), to be patient with and listen to his body, and to remember to pray.

        I’m so sorry for the lengthy comment. Best wishes as you continue on this journey….I know that even though it is hard, it can be filled with so much joy!!!! :)

        1. I’m so glad you wrote this out for me, because it’s exactly what I needed to hear. I appreciate the insight into what he might be thinking and feeling—it will really help me, so thank you!!! Yes, he wears an insulin pump and has since he was 6 years old. It’s the best. I wish you all the best on your own journey!!! xoxo

  4. I was diagnosed when I was 16 and a junior in high school. That was now 11.5 years ago. I know that my mother was grateful that I was old enough to treat myself so she has only ever had to give me one insulin shot. From watching her pain from having to injection me I can only imagine the feelings you must have had doing this with your young son. I really am not sure if there is an ideal time to be diagnosed with Type 1 diabetes (younger children or older). As a teenage girl, it was horrible because I gained 25 lbs the 2.5 weeks after my diagnosis. I had always been stick skinny (I probably went three years being undiagnosed with diabetes) and so gaining all the weight (which made my weight normal) was rough. Luckily, I had a supportive family and great friends. My faith grew tremendously and I gained a much stronger appreciation and understanding of the Atonement.

    I still wish I did not have this disease and have days where I want to give up because I would never say that it gets easy, but having a strong support system helps so much. I have learned that it is so important to educate. My friends helped me get through lows at school. I had a time in college where I became unresponsive during a lecture and my friends notified the teacher, told him I was diabetic, and were able to get the college’s EMS to come help me and give me sugar. I try to always let the people I am around (friends, co-workers) know that I am diabetic and let them know that if I do become lethargic in any way to just make me eat. This helps me and helps my husband feel better.

    While diabetes is not an easy disease, it did help me choose my career and I am now a RN. I hope to one day become a Certified Diabetic Educator so I can help other diabetics. Having someone understand what you are going through is so amazing when you have a chronic disease like this.

    1. Thank you so much for sharing your story. It’s never easy to be diagnosed with diabetes, and I think being a teenager would be really difficult. I’m so glad you had such a wonderful support system–I know it makes such a huge difference. I think it’s amazing the career choice you’ve made, and I know as a nurse, and a Diabetic Educator that really understands what it’s like to be diabetic will be so appreciated. Good luck to you!! xoxo

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge