Parents Talking Type 1: Brooke Wheeler

Diabetes is a disease that affects the whole family, especially when a child is diagnosed. Parents of children diagnosed with diabetes face overwhelming, and sometimes frightening, questions such as: How can I strike the balance between caring and hovering? Will she ever be able to eat sweets again? How will I ever be able to let him go out on his own?

This is the latest in our occasional series from parents of children with diabetes, illustrating the emotions, challenges and successes each family faced upon diagnosis.

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Name: Brooke Wheeler, mother of Carson, age 6, diagnosed at 21 months
From: Gretna, Neb.

The story I am sharing is of when our life with diabetes began . . . Friday afternoon, Nov. 7, 2008, the day our 21-month-old son was diagnosed with type 1 diabetes. It is a day that is still so vivid in my memory.

My husband and I were getting ready to take our son Carson to the doctor. Our main concern was that he had been drinking excessively, which in turn had him completely wetting through diapers in very short periods of time. On top of that, he had been quite irritable for months and had been sleeping more frequently. The night before we took him to the doctor, he had a strange incident in which he vomited after dinner and was very lethargic afterward. It did not appear to be a stomach illness or food related—there seemed to be no explanation.

All of these symptoms were a slow progression; they did not pop up overnight. However, by the time we decided to take him in, it had become quite obvious to both my husband and me that something just wasn’t right.

Before we left our house, I hopped onto WebMD and typed in his symptoms. One of the results that immediately came up was type 1 diabetes. My husband and I read a brief description of the disease (both of us had heard of diabetes before, but knew very little about the disease) and looked up at one another with grim faces. Even though our son was displaying textbook symptoms, according to this website, we didn’t really think that was what we were dealing with. There was no way our perfect little baby boy, who had never had an illness more severe than a cold, could have type 1 diabetes.

We walked through the clinic doors, not knowing that by the time we walked out of them, our lives would be forever changed. I was nervous for the appointment, but I was also just desperate to get some answers. I wanted an explanation for what had been going on with our little boy, no matter what those answers might be.

We were called back to a room. The nurse asked a lot of questions and we gave a synopsis of our concerns. The doctor came in and ordered a blood test and a urine sample. The nurse and doctor were already probably suspecting diabetes, but we were oblivious to that fact.

The urine sample was no easy task, as Carson was still in diapers at the time, so we had to put one of those urine bags on him and hope that we could catch some before it spilled into his diaper. While we waited for that to happen, they performed the blood test, which caused a full-on toddler meltdown. Seeing him so upset from that had me quite rattled. Little did I know, that was just the very beginning.

Looking back now, much of that visit is fuzzy in my memory. That is probably because there was a 30-second period of time that took center stage, a full 30 seconds when it felt like the Earth had stopped spinning. I felt like I was one of those cartoons being sucked into a tornado, screaming for help, but no one could hear me.

carson wheeler 200x200Those 30 seconds were when our doctor came in, and I could tell by his face that something was off. He asked if we were able to obtain the urine sample; we hadn’t yet and reported that. He said that was okay. My mind was going 900 miles a minute . . . why was that okay? It was okay because he had already gotten all of the information he needed from the blood test results. Carson’s blood glucose was so high the clinic meters couldn’t even read it. Our little boy had type 1 diabetes.

Clutching Carson in my lap, I immediately broke down as my body instantly went into a state of shock. I probably asked some very stupid questions. What did this mean for him? Would he have it forever? Was it something surgery could fix? What do I need to do to help my little boy? Again, we knew very little about diabetes.

We were told that Carson would need to be monitored in the hospital for a few days in order to start treatment and figure out what kind of insulin regimen would be needed. We left the clinic and contacted family members. Our families would probably tell you that our hysterical phone calls will forever be engrained in their memories.

We ended up spending three nights in the hospital. During that time we learned a wealth of information about diabetes and everything we needed to know to care for Carson. My husband and I both learned how to give him his insulin injections (four a day). Even all of these years later, I can still say giving him that first injection was easily one of the hardest things I have ever had to do.

Once we became more educated about diabetes and the evolving treatment technologies, we started earnestly looking into insulin pumps. We made an appointment with a new endocrinologist who was very much in favor of pumps. By the end of February 2009, Carson was on a pump. It was a complete answer to our prayers and helped us gain more control over our toddler’s diabetes management.

This is just the story surrounding Carson’s diagnosis. There have been many highs and lows since then, both figuratively and literally, and I expect no less in the future.
I read this quote once and I absolutely love it and find it to be especially fitting when reflecting on his diagnosis: “Remember . . . diabetes is a word, not a sentence.”

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8 Responses to Parents Talking Type 1: Brooke Wheeler

  1. Alicia says:

    Dear Brooke, what you wrote took me directly to 1996. My son was diagnosed that year with Type 1 diabetes, he was 8.
    All the feelings and sensations you described are the same we went through many years ago
    I´m glad your boy is on the pump and doing well
    My son is now 25 and he is not taking diabetes seriuosly!
    We live in Argentina
    Yours
    Alicia

    • kaitlin nadeau says:

      I do not know what happens to kids when they hit their 20s who have diabetes. It’s like they suddenly think they do not need insulin anymore!!! I am 23 and have been a type 1 since I was 18 and not once have I ever gotten it into my head that I will not need insulin!! I worked with a lady whos daughter stopped taking her insulin and went blind by 33 she was lucky enough to get a pancreas transplant and her eyesight came back a little but one should not have to go to such measures when all you have to do is take ones insulin!! I really hope your son snaps out of it and flies right or he is gonna lose his eyesight and every other vital organ!!

  2. Misha says:

    Thank you for sharing your story. Reading stories of families affected by T1 just like ours has been, still makes me cry. I remember those same feelings and emotions. My feelings were exasperated by the fact that we were on a road trip when our son was diagnosed. Followed by three days at San Diego Childrens learning to care for him to be able to make the trip home. That was a vacation that will never be forgotten! “Everything happens for a reason” that’s what we learned on that trip. There is a much larger story here, But I really just wanted to say Thank you!!

  3. Jane Windels says:

    Hello Brooke,

    I was diagnosed with Type 1 diabetes when I was 7 years old. I have had it for 54 years and am on an insulin pump. That pump has been a real blessing to those who have Type 1. It helps so much with controlling the blood sugars. I have suffered some of the complications of the disease, open heart surgery, some kidney problems but over-all I am doing very well for having had it this long. I pray and believe because of the pump your little guy won’t have the complications that come with this.
    I feel blessed and am thankful for every day! Things could be a lot worse, with much worse diseases than T1.
    Thank you for sharing your heartfelt story!

  4. Pam Reinoso says:

    Hi Brooke,
    Gosh your story brought back so many memories, I started to cry. My son was dx’d when he was 18 months old and our story is very much like yours except insulin pumps for little children were almost unheard of in 1998 when he was diagnosed. In 2002 at 4 he did finally receive his first pump. 15 years after that shocking first day, I can honestly say I have a teen that has grown wise and strong and done well in life and school. It has not always been easy but it has been interesting and we simply don’t know life any other way. He has done everything his peers do, it has been gratifying to treat diabetes as a “word not a sentence”.

  5. karene says:

    Your story sounds exactly like ours.I am sure almost every parent walks into the doctors office with diabetic symptoms staring them in the face.I know we did when our son was diagnosed 3 years ago at age 11. It is certainly life changing for All family members.isn’t it amazing how quickly you become an expert at diabetes.still find it hard to deal with the lack of knowledge from others who have no clue what we go through. However I have to admit we were once clueless too! Thank God treatments have come such a long way. Excited to be reading up on the artificial pancreas.hoping and praying that it will soon be available to all diabetics!!!! Can you imagine our children once again being free to just be kids and not worry about everything that goes into their mouths,let alone needles and testers.How wonderful!!!!

  6. michelle says:

    I have a similar story. My 14 month old son got rsv and pneumonia.
    we went to the doctors 4 times a day stay in the hospital and 3 emergency room
    Visits in one week.. he slept 23 hrs of the day drank a ton wet through like crazy.. I knew it wasnt pneumonia taking it out on him even though every doctor said it wad bc of that.. my persistents paid off I wanted answers and finally the third emergancy room visit the doctor said he looked dehydrated did urine and blood work.. he came back to tell me and my husband he was having a diabetic emergency and we had to be transported to a bigger hospital. We didnt understand if it was bc he was sick it fidnt sink jn that he was type 1 and it was forever until that night in our room. We stayed 4 days and a ton of information later we went home… a month after he was diagnosed we got a pump bc our doctors pushed it since he was getting diluted insulin. A day I wont ever forget and one of the hardest things to deal with especially in a young toddler..thank you for sharing your story!

  7. L.Hooper says:

    My Gbaby was diagnosed type 1 at 18months. we were so sad,had the guilt trip, because we didn’t see, missed, or didn’t know the symptoms. We went to training class at Texas Children’s, Houston, Tx. Doctors and nurses were wonderful. They let us know it is not anyone’s fault. I was so afraid giving his first shot. He has 3 a day till a cure comes into place.Wow now I’m a pro!!! He is 4 years old now, doing awesome. His daycare has some awesome friends trained to check his sugar level, and give him lunch shot. Although it’s always a stay alert, check our baby boy always, even at 2 am. Wouldn’t trade him for the world. Always praying for diabetes cure, and as God is Great, y’all just wait the cure is coming soon!!:))) prayers for all who have awesome kiddos or family with Type 1

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