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PostHeaderIcon The Type 1 Diabetes news that changed our lives forever #T1D

Disclosure: This is a post written by me and any opinions expressed are my own. I may or may not have received compensation for my services.

I wanted to share with you why my postings have been well, few and far between the last few months. We were thrown a fast curveball with my step-son and it has been very consuming. Now, while Patrick and I are not married, and have no intentions of ever being so, (we have both been there and done that), his kids are still my step-children. I live with them, care for them and love them as if they were my own, as all step-parents should. I am very grateful that our blended family works wonderfully. We both get along with his ex-wife, Janet, and this is something that is very important when dealing with any life changing events.

Type 1 Diabetes Looks Like Me

Alex was always a smiling and laughing child. He is one of those children that can make just about anything funny. He has so much to say and wants everyone to know his thoughts. His energy is so contagious and hard not to dive into it head first. He can bring a smile to your face regardless of what your current mood its.

On March 14th, 2016, our lives were changed forever. Alex, was diagnosed with Type 1 Diabetes at 9 years old. Just like any other “bad news” a doctor gives you, we were completely freaking out. He is with us every other week during school and every 2 weeks in the summer. Since I am the primary care giver during this time, my mind started doing flips. How am I going to take care of him? What if I mess something up? How am I going to revamp the entire way that I cook? How expensive is his new diet going to be? The questions and worries were so overwhelming.

Type 1 Diabetes Looks Like Me

How did we know he had Diabetes? That’s easy, we didn’t! He was always a little chubby in the almost 3 years that I have known him. In an effort to help him becoming healthier, we actually ended up saving his life.

In July of 2015, we put up a pool at our home. Alex became a lot more active! We started being more strict with the kids electronics time, being smarter about portion control at meals and kicking them out of the house more. We were never inside as kids! He started to lose weight and we were thrilled for him. We were so proud of him, and ourselves, for getting him on the right track.

In March of 2016, Janet asked if we thought he was losing too much weight. We all agreed that it was crazy how fast, and how much, he had lost. She took him to the doctor for a check up and asked about it. The doctor checked his blood sugar and it was 271. This was a fasting blood sugar. That means he hadn’t eaten anything from 9:00 pm the previous night until his appointment that morning at 11:30 am. A normal fasting blood sugar for his age is between 80 and 150. Did you just say OH MY GOSH? We did! They said his average blood sugar for the past 4 months was over 400. Our mouths and hearts dropped.

Alex3

As a parent, you start asking yourself questions. How did we not know? What did we do wrong? As we learned more about this disease, we recalled a lot of signs. The problem was, we didn’t know that they were signs. Alex would randomly be sleeping in the middle of the day. He would get up 10 times a night to use the bathroom or get a drink. We felt like such awful parents because we would tell him that bed means bed and to stop getting up 100 times and go to sleep. When he was sleeping during the day, we thought he was just being lazy and would send him outside with all of the other kids. Oh yes, we felt horrible after his diagnoses. These were things that he could not help and it was his body’s way of saying something was wrong. He never expressed to us that he was feeling tired or being thirsty all the time.

After a few days in the hospital and being on complete information overload, they were ready to discharge him from the hospital. WHAT? Panic set in again. We aren’t ready! We can’t do this! Guess what? We were and we could, we just didn’t know it yet. Now I will tell you that Patrick and I felt slight relief that Alex was going home with Mom for the first week. Not because we didn’t want him but, because we were more than likely still in the denial stage. You know that parent denial? No, not my child! It also gave us more time to prepare. Have snacks on hand, read up on all of the literature that they gave us. I did not envy Janet at all and I honestly felt sad for her but, I knew she would be fine and call if she had questions or concerns. Like any mother would, she did call. It doesn’t matter to me that she is his ex-wife. It matters to me that this is “my sons” mother and if she needs help with him, I am going to be there.

The week leading up to Alex coming home, to our house, was not what I would describe as Delightful Chaos by any means. I can not recall the number of times I called Patrick in tears because I was so afraid. While I love Alex like my own, he’s not mine biologically. The feelings of possibly hurting someone elses child were overwhelming. While I of course would never want to hurt my own children, hurting someone elses is a feeling that I can not put into words. What if I didn’t count something right? What if I misdosed? What if I send him into a coma? What if I cause a seizure? How could a father forgive a woman hurting his child? I CAN’T DO THIS! IT’S TOO MUCH!

On March 20th, Alex made it to our house. Calm down Toni-Lynn, you will be fine. The arguments in my own head were stressful. Having to be the full support system for Patrick was stressful. Being left alone with Alex for the first time was stressful. While I have been a Mom for 13 years, Royal (13) and Spencer (8) are pretty self-sufficient. Their basic daily needs from me are minimal so, I wasn’t ready for the constant care of another human being. I am 37 years old and I was at the point in my life where I enjoyed not hearing, “Mom, I need…” or “Mom can you get me..” all day long.

Patrick told me at one point that he was afraid I would hightail it out of our relationship. He felt it was a lot to ask of someone to take on and that the stress of it all would win out. That isn’t the person I am. Again, while we have no plans to ever get married, our relationship is still for better or worse, good times and bad, sickness and health… and all that. A piece of paper shouldn’t, and wouldn’t, change our relationship, as it shouldn’t any relationship. I was able to lift his worries with a simple, “Good luck getting rid of me that easy.”

He is a pretty tough guy. You know, the manly, me strong like bull, type. He’s a protector, a supplier and our rock. It was very hard to watch his one and only breakdown over Alex’s diagnoses. To see the man you love cry is heart wrenching. We were going to bed and all of a sudden he just started sobbing. I simply held him and said, “I got you. We got this.” Sometimes the simplest words can have the biggest meaning and impact. It was all he needed, to know I was now his rock.Type 1 Diabetes Looks Like Me

I will be the first to admit that I have messed up. Patrick has messed up. Janet has messed up. It is not because we are bad parents, even if we feel that way at the time. It is because we are human. We are not infallible. Everyone makes a mistake.

On a normal day, I packed Alex’s lunch for school and included the slip for the nurse with his carb count on it. Well, I was overly tired that morning and I wrote down the wrong thing. Instead of looking at the carbs in the bread, I wrote down the calories. The nurse sent a text to verify that it was correct. I replied that it was. Well, she dosed him with 6 units of insulin. For Alex’s scale, that dose is for eating 240 carbs! In reality, he only ate about 50. A few minutes later I thought to myself, “There is no way that is right.”, because I was at the point where I knew some of the carb counts by heart. I ran to the kitchen and looked at the bread. I told her it was 100! It was only 20! Frantically I sent her a text telling her it was only 20. Then I frantically sent her another text, because again I misread the package, and told her it was 40. Well, too late, she had already dosed him. Since we were new to this, I began to freak out. I am not even sure that freak out is enough to explain how I was feeling. OH MY GOD! What did I do! Did I just kill this kid?! I called Patrick crying like a newborn. I was saying sorry to him, I was saying sorry to Janet. They both told me it was ok but still, I felt like garbage. Luckily, we have an amazing school nurse and I learned something important. It wasn’t as big of a deal as I felt it was. All he had to do was eat to cover the extra insulin. It ended up being an amazing thing. Alex came home and said he had a “Party At Lunch”. This made me smile. He got to eat a whole bunch of junk food and feel “normal” again. I hope that you can take that to heart should you ever make a “mistake” with treating your T1D. It’ll be ok!

We have been through many highs and lows, literally, the past 3 months. There is so much that we learned about our prior “knowledge” of Type 1 Diabetes. While I wanted to share our story with you, I am also hoping that I can help other parents out there that are dealing with a new diagnoses.

Type 1 Diabetes Looks Like Me

We have also encountered a lot of people who make us want to rip our hair out daily. I understand that many people ask things because they are curious but, you really can only hear the same thing so many times before it starts to make your blood pressure rise. I asked my “T1D Facebook Family” their thoughts on my topics below. They are a group of very smart men and women who have helped us through this by answering our questions without judgement or hesitation.

What was the biggest misconception you had about T1D but learned was wrong? 

Colie Aqua Carman: Definitely the restricted diet thing, T1s can still eat whatever, they just have to be dosed!

Sasha Waddle: That he can still live the same life he had before that dreadful day. He just has a few extra steps to take each day.

Kathy Schuiteboer: We could never eat candy, sugar or chocolate again.

Jeannie Minney Brown: That you had to eat every 3 hours

Jennifer Still: Miscalculation of carbs at a single meal is not going to kill him

Lisa Weiss Michaud: That vomiting would be a symptom of DKA.

Kathleen Steele: That my child would have only eat sugar-free foods.

Rachel Campbell: That keeping my son’s blood glucose under 200 isn’t reality like the doctor said.

Things to NEVER say to a T1D parent?

Linda Walker Shrock: Never tell a T1D parent that you know people that cured their T1 with a special remedy.

Laura Ginel: Just ONE thing? LOL I can’t answer this question w/o real anger I know they mean well but the “cures” that everyone has I could do without those.

Tara Leonardt: Please don’t compare diseases…yes we are “lucky” it isn’t (fill in the blank with an always terminal disease) but please don’t demean us by saying this.

Colie Aqua Carman: ‘Oh how horrible’ It’s not horrible, it is just our life and our life isn’t horrible.

Carol Ann Tew: “Oh, is that the bad kind?”

Jennifer Gordon: Don’t start telling me stories about how you know someone with diabetes and how they had to get their foot amputated, had kidney failure, or worse. These are our kids and why yes, we know in the back of our minds it COULD happen. I do not need or want to be reminded of this.

Jennifer Ortiz: Maybe if you fed them healthier, they never would have gotten it!

What is 1 fact you want every newly diagnosed parent to know?

Linda Shrock: I want every parent of newly diagnosed children to know that it really will be ok. It really does get better as it becomes your new normal.

Laura Ginel: I know you are scared but, it does get better. I didn’t find any support for myself until two years after diagnosis Thank God for Parents of Type 1 diabetics.

Tara Leonardt: You’ve got this…you are completely overwhelmed but one day you will look back at everything and realize that this is your new “normal”…your child’s childhood isn’t ruined…it isn’t over…its just different from what you had envisioned…just be there and support your child.

Colie Carman: Different things affect each person differently. Do not blame yourself because a certain food seems to make BG unpredictable. T1 will always make you worry a little more but it gets so much easier. It just becomes part of your life and that’s okay because it means your child is part of your life.

Carol Ann Tew: It’s never “easy”, it just gets easier and don’t let it control you. It’s ok to grieve and cry! After 8 months, I still do some days.

Jennifer Ortiz: Get a support group, so very important!

Sasha Waddle: That you aren’t alone. There is always someone who is going through the same thing, or has gone through it, to help you! Just ask don’t be afraid to ask for help!!

Kathy Schuiteboer: Your child can do everything they did before, anything that a non Diabetic child does, especially eating the same and sports or activities.

Kathleen Steele: As scary as the first day home from the hospital seems, it does get better. Sure there will be times that you find yourself overwhelmed and exhausted, you will find yourself so much more knowledgeable about how to care for your child.

Leslie Lewis: Life will continue on. They can still be a kid, it’s just going to take a few extra steps.

Rachel Campbell: Take it one day at a time. If y’all have a bad day with high or low blood glucoses. remember tomorrow will be a new day and don’t blame yourself

Kim Hrvatin: The sense of dread and fear will dissipate, there is now a new normal. 4: Yes

Jordan Mayfield: Keeping track of blood sugar logs and tracking trends are VERY important for better control.

Elisa Hunt: In the beginning it’s so totally overwhelming. I’m not exaggerating when I say that I considered running away myself! I don’t speak about it much, but those early days were dark days. Now I carb count in my head and tweak basal rates, things which were unimaginable a short time ago.

Anthony Lambdin: Join an online support group and ask questions. Also, you’re going to inevitably torture yourself by seeking out and reading awful stories about T1 online. Keep in mind that most all of those are due to “poorly managed” diabetes. With proper management, your child will live a long and healthy life. She can be a doctor or a professional athlete or most anything she wants.

Barbara Campbell: You will get through this and everyone will be fine – give yourself time to adjust and learn. Let them be kids.

Lauren Wolf: You and your child are stronger than you know and there is a wonderful community of support.

Kristie Renea: Learn all you can and take it day by day. Help your T1D live a full life. Try to allow them to do whatever they would have done. We can’t fight their battles just educate, assist and be compassionate.

Lisa Michaud: Hang in there, you can do this.

Jennifer Still: Overwhelmed is totally normal, but soon this will be a minor annoyance….most of the time.

Jeannie Brown: You are not alone and be your child best advocate, especially if they are somewhat of an introvert or shy.

Airon Beattie: Managing Type 1 doesn’t get easier, but you get better as you go along and learn.

If you have taken the time to read this far, I thank you. I hope that I have been able to help you in your journey as so many have helped us on ours. As so many others have said, it will be okay. I hope you all have a wonderful, fun-filled summer.

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