A Nine Year Journey…Our Family’s Diabetes Story

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.

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  1. What a story! I think children with Diabetes are very brave, especially the young ones, it’s sometimes so difficult to understand for them. And the “why me” is also hard to understand. You’re very brave, both of you.
    My DH has Diabetes but that’s because they took out his pancreas 9 years ago. He and I had to adjust our self to a different way of life and it has had it’s ups and downs but I do believe we are stronger people.

    1. I appreciate your kind words, Eveline, so much. You understand what an adjustment diabetes can be, and I wish the best of luck to you and your husband! xoxo

  2. Kierste I love your story… My 14 year old daughter has Cystic Fibrosis, and yes, it is a learning experience from day one! The teenaged years are looking good and we are also looking forward to years of good health and happiness with our special kids. We are stronger and wiser because of them :)

    1. I’m so glad that your daughter’s teenaged years are looking good–I definitely know how it feels to have hope for the future. Best wishes to her and your family–we are most definitely wiser and stronger because of them!!! xoxo

  3. You have travelled a long, hard road. Your son is beautiful and happy. Thank you for sharing this story. I love seeing the smiles in the photos — you are a strong and continually inspiring person!

  4. Such a touching story. Thank you for sharing!

    A dear friend of mine has Type 1 diabetes. I remember always wondering why he had that problem, when so many other didn’t. We just “celebrated” his 10th anniversary of diabetes. Something that seemed silly at the time, I recognize now how lucky he is to make it this far with a condition that has to be so carefully monitored. He’s now about to graduate college and work for an advertising agency! :)

    You’re Ryan is such a cutie! I think you’re biggest struggle will be keeping those girls off of him!

    1. Your friend is so lucky to have you–it’s support from friends like you that make it seem like less than it really is, because it makes it easier to deal with. It sounds like he is doing really well, yay!!! And lol, I know!! I don’t think he’s going to be allowed to date until he’s at least 21. :)

  5. Thank you so much for sharing your story! Our 10 year okd son was diagnosed Type 1 last month and we are quickly adjusting to our “new normal.”. I love seeing how happy your son looks in the last pic- what an inspiration for us!

    1. I’m so glad our story can help you on the journey you’re on with your son. I read your comment, and my mind once again went back to those first couple of months. Good luck to you–it sounds like you are adjusting, and on your way! xoxo

  6. I’ve had Type 1 since I was 10. This March my six year old daughter was diagnosed out of the blue, when I brought her to the doctor for something else. She, too, insisted on band-aids after each finger stick :) I’m going to tell her about another boy out there who liked the same thing. She’ll be pleased to know.

    1. I’m so sorry to hear of your daughter’s diagnosis, but she’s lucky to have a mom who truly understands what’s she’s going through. I’ll likewise share with Ryan that there are others out there who love Band-Aids too! I wish you all the best— xoxo

  7. What a beautiful story about your son and is struggles with this disease. Blessing to you for many more years of health!

  8. Amazing, well written and one handsome young man. I was just diagnosed and am struggling with denial and learning so much. I admire your young man. He is my new hero. I want to be like him. Thanks for the encouragement.

    1. It is amazing what we can learn from children–I know the list is long for me. I’m so sorry about your diagnosis, but I’m glad this post has encouraged you. Hang in there– xoxo

  9. Thank you for sharing your story Kierste. My daughter came home from school a few weeks ago telling me about a boy in her class who has type 1 Diabetes. She told me he goes to the front office a bunch of times during the day to get his blood checked and that he also wears an insulin pump. It was the perfect opportunity for us to talk to her about how all of this affects him and his family and to try and teach her about having empathy. It broke my heart to think of someone so young having to deal with this, especially because she said he always comes back to class crying:(
    Wishing you and your family all the best- health, happiness and lots of love.

    1. That just breaks my heart. :( I know what that feels like on a personal level, but even hearing about another child just makes me so sad. Thank you so much for the words of encouragement and kindness–they are much appreciated. xoxo

  10. I am so glad you shared this, Kierste. I hope Ryan knows how amazing he is–what a great example of strength of courage both of you are!!! He is such a handsome young man. He is definitely blessed to have such an incredibly strong mom and loving family.

  11. Thank you so much for sharing Ryan’s and your story. Reading your words was a great reminder to be grateful for the blessings in my life. Much needed realization today. So thank you!

    1. You are so welcome–I’m so glad that they helped when you needed it!!! Thanks so much for your kind comment–xoxo

  12. I was diagnosed at age 9 and am now in my 30s. Those teenage years are TOUGH! I always hated feeling “different” from everyone else. Has he looked into getting a pump? I dragged my feet for years but now am so glad I have one. I’m happy to hear he is having a successful journey with his diabetes! Keep up the good work, Ryan, Kierste, and family!

    1. He actually got a pump less than a year after diagnosis, and it made ALL the difference. I’m glad you went for it and love it too!

  13. Diabetes is a hard illness to live with. My husband was diagnosed at age 4 with Type I Diabetes. It was a struggle for him in so many ways. He didn’t understand what it even meant to have a disease, how to handle the constant shots and finger pricks, why his two older sisters didn’t have the disease. He has done exceptionally well considering some of the things he was put through as a teenager and those years being the toughest of a diabetics life. As an adult he started using an insulin pump (one of the best inventions ever). It does get easier the older he gets, but since we have been together he has been hospitalized twice for DKA and I have to had to call the paramedics once. He turned 32 this year. He is a wonderful husband and exceptional father. I remember my mother asking me 11 years ago when we first started dating, if I was prepared to be married to a diabetic. I said yes then, and I would say yes all over again.
    I wish you and your family the best and I hope for the best life possible for your son.

    1. Your husband is very lucky to have you by his side! DKA is so scary, and I’m sorry you’ve had to experience that. God bless you and your family–I wish you all the best!!! Thank you so much for the well wishes–they are very much appreciated. xo

  14. I literally could have written this, word for word, as we just had a similar experience with our 8 year old daughter, Hannah, who was recently diagnosed with Type 1 on September 25. We have a wonderful family doctor, who was the one that diagnosed us, and we ended up being hospitalized within minutes of getting to her office to see her for what I was praying was a simple bladder infection. In my heart, I knew it wasn’t that, but I also did not want to think about what it truly was…Hannah is petrified of doctors and hospitals, and had a rare condition when she was 6 that required her to have emergency surgery to drain fluid from her hip and have a 5 day hospital stay in a children’s hospital in Austin, TX.

    We live in Lehi Utah now, and have had an outpouring of love and support from friends and family all over the United States. Without all of that love, I don’t think I could have made it this far with all my hair :)

    This was a beautiful post, full of hope for me. Thank you so much for this.

    1. Oh my goodness, your sweet daughter and your family will be in my prayers. I’m so glad that my experiences were able to give you hope, and hopefully a little peace for what lies ahead. How wonderful that you have such an amazing support system—you are so lucky! Hang in there–it won’t ever be easy, but it will get easier and one day you’ll realize that you’ve found your new “normal”. xoxo

  15. Thank you so much for sharing this brave story. I was especially glad to see how happy and healthy he is today! Bless your hearts. I so know the subtle yet all-powerful role a mother plays when dealing with any crisis. You did the right thing, and that made all the difference. It has to be frightening and discouraging at times, but your positive attitudes make all the difference.

    1. Gayla, thank you so much for kind and thoughtful words and encouragement! I appreciate it so much!! xoxo

  16. Thanks for sharing your story. I always find it interesting to hear the point of view from the parent. I was diagnosed with diabetes at age 5 and have had it for 23 years now.

    1. Likewise–I find it interesting to hear from adults who’ve had it all their lives, and hear from their perspective. I’m sure you’ve seen many changes in medical technology over the years!

  17. He’s a very handsome young man. I love that you got about forty boxes of band aids from friends. How sweet of them to think of him and support him in that way. :) It sounds like a turbulent journey he’s been on with a very dedicated and doting mama.

    1. Thank you, Sydney!!! I actually e-mailed that family this week to let them know how much it meant to me…and still does. Such a simple thing made such a huge difference for us. It’s a crazy journey, but he’s an awesome boy!

  18. Hi Kierste-
    Thanks so much for your story..such an inspiration! Out son was just diagnosed with kidney issues. We have good days and very bumpy days!! Some days are so hard to accept that our son has an illness. Thanks so much for your story…it helped me so much!!

    1. Yes, you would definitely understand. It’s one of the hardest things–to realize that your child has an illness, and there’s nothing you can do to take it away. Your son is lucky to have you to help him through!!! xo

  19. Thanks for sharing your story. I can’t help but read when I hear of others with type 1 diabetes. I was diagnosed at age 7 and my younger brother a few years after me at age 8. It is a challenge at times, but one thing I hated most was when others looked at me or treated me as if I were handicapped. I know my strength comes from the Lord. Best wishes for your son as he continues his journey in life.

    1. That’s how my son feels too, and our strength most definitely has come from the Lord. Lots of prayer!! Thanks so much for commenting–I appreciate it!

  20. I just started visiting your blog a short while ago and had no idea about your son. Thanks so much for sharing. My daughter was diagnosed in 2007 right after her third birthday. We will be having our six year anniversary next month. She had the same symptoms, but with us she was potty training and going through the terrible two’s and we attributed alot of her symptoms to that. I remember taking trips to the grocery store and visiting the bathroom numerous times as well. One day I went to get her dressed and her clothes were loose. I remember the feeling that hit me that something was terribly wrong. I made an appointment that day and we were sent over to the emergency room immediately. After three days in the hospital we were on our own and knowing our life and hers would never be the same. It’s a daily roller coaster ride as she grows and we just had our best A1C every and for that I am truly thankful to God that he has given us the patience and sixth sense to keep her healthy. It’s so wonderful to see your son is doing well. God Bless you and your family!

    1. Oh my goodness, I can only imagine what it was like with a potty training two/three year old. I’m glad she’s doing so well–congrats on the great A1C! That’s such an awesome feeling!!! All the best…xoxo

  21. Hi!
    A friend sent me the link to this post! I love how you shared your story! We have a daughter who is a type 1 diabetic. So, I understand all you shared. It makes me cry to see others who go through this, too. But God has been faithful every step of the way. Blessings to you and Ryan and the whole family!

    We are currently raising funds for a service dog for our Hannah. Here’s her page if you’d like to check it out….

    We are trying to spread the word as far as we can! This dog would change our lives. We’d appreciate any help you could give by sharing with your followers if you so choose. Thank you!
    Dawn Gray

    1. I’m so glad your friend sent you my way, and you most definitely do understand. Good luck on your mission to raise funds for a service dog for your sweet girl–best of luck to you!!! xoxo

  22. Hi Kierste! A friend sent me this link to your blog. My 11 year old son was diagnosed with T1D last week. It’s been sad and scary but he has been a real trooper. I just need to be reminded that we are not the only family dealing with this so thanks for sharing your story and may God bless your family. I truly believe that nothing comes into our lives without passing through HIS hands first.

    1. Leigh, I am so sorry about the diagnosis of your son, and I completely empathize with you, and understand much of what you’re going through. Hang in there–you’re in the thick of things right now, but it does get easier–in the sense that you will adjust to your new way of life. All the best to your sweet boy and family—I’ll be thinking of you!! Good luck! xoxo

  23. kierste ~ what a blessing to read your words. my 5 year old daughter was just diagnosed with T1D last week and our world has been flipped upside down. a friend passed this blog post along to me and reading it made me feel like someone was wrapping me up in a big hug and saying ‘everything will be alright’. thank you for sharing your journey so that i can step bravely into mine.

    1. elizabeth,

      how my heart goes out to you, your sweet little girl, and your family. your journey is just beginning, and i’m so glad that sharing ours has been a source of comfort for you. definitely consider this a big hug, and me saying “everything will be alright”. you can do this–and your little girl is so lucky to have you!!! i wish you all the best…xoxo

  24. I want my daughter to read this. Her son also has diabetes diagnosed when he was four. He is now nine. thank you

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