Two summers ago, we got word that our 9-year-old nephew Timothy had been rushed to the emergency room, and then admitted to the hospital, with alarming symptoms. He was subsequently diagnosed with Type 1 diabetes, and his mom and dad started a crash course in what that meant, how to care for him, and how it would change their lives.
Although we live hundreds of miles from them, we have been learning too. I am thankful that my sister-in-law has been open about their journey, about the joys and the struggles they have experienced in the last 18 months, giving me a peek into their world and helping me to understand it better. Below are things the mom of a Type 1 diabetic child would like you to know — and would tell you herself if her life slowed down enough to let her breathe.
1. There are two kinds of diabetes and they are not equal. Type 1, also known as juvenile-onset diabetes, is far less common — 5 to 10% of all diabetics. It occurs when the body’s immune system has destroyed the cells in the pancreas that release insulin, without which the body cannot absorb glucose, which is needed to produce energy. Type 2 diabetes is the more common form (90-95% of diabetics). It occurs when the body is insulin resistant, so it can’t use insulin the right way.
2. Type 1 diabetes is not preventable. My child’s diabetes was not caused by a poor diet or obesity, something that can contribute to type 2 diabetes. Nothing in my child’s diet or lifestyle contributed to him getting type 1.
3. There is no cure or possibility of remission with type 1 diabetes. It will not go away if he just eats right or loses weight. He needs insulin to live. His body won’t make it. End of story.
4. My child’s life depends on accurate, regular monitoring of his glucose levels and accurate administration of insulin. Dr. Frederick Banting, the discoverer of insulin, is my hero. Before his discovery, children with diabetes tended to live about a year after diagnosis. My child was diagnosed over a year ago. Do the math. Insulin saves my child’s life every. single. day.
5. Yes, it’s manageable. But type 1 diabetes requires more time, effort, and energy that we ever dreamed it would. It is a job that is 24/7 and taking vacation time can be deadly. We monitor our son’s glucose levels day and night, weekdays and weekends, at home and out of town. Type 1 diabetes is an unwelcome, but now familiar, member of our family.
6. My child lives a normal life. He runs and plays and has hobbies and wrestles with his brothers. But his “normal” involves regularly checking his blood glucose to make sure it is at a healthy level. And I am the ever-vigilant one making sure he is checking and that he is okay. Call me a helicopter parent if you want.
7. My child will not outgrow “juvenile” diabetes. It is not called “juvenile” because it only lasts through childhood, but because that is when it is often diagnosed. My son’s insulin cells are gone. He will not ever outgrow this. My child will live with type 1 diabetes for the rest of his life.
8. Children, especially teens, with type 1 diabetes need support and understanding so they will be comfortable taking responsibility for their own wellness. Adolescence especially is a time when no one wants to seem “different” from their peers, but avoiding responsible care in the name of fitting in can be deadly.
9. More awareness will lead to better understanding and better research and treatment. Research has led to the development of the insulin pump, which makes diabetes even more manageable. Research could, someday, lead to a cure. There is no cure for type 1 diabetes — yet. I pray every day that a cure will be found in my child’s lifetime.
Has type 1 diabetes impacted your life? What do YOU want others to know about it?
For more information about Type 1 Diabetes, visit JDRF.
I have been a t1 for almost 18 years now. I went through my troubled teen years with my diabetes, and it has cost me dearly. Helping children who are diagnosed understand that it’s nothing to be ashamed of is important. I found several t1d friends through my life (okay, really 4) and I am sad to say that only one is still here. I think the biggest thing that people need to understand about it is this:
Don’t tell me I’m lucky it’s not cancer. I fight for my life every single day and live with the knowledge that one night I may not wake up to first responders standing around me and my husband worrying in a corner.
Also, autoimmune diseases ruin other parts of your body AND many many many type ones have more than one autoimmune disease. Seems logical, since if your immune system goes crazy, it probably wouldn’t stop at the pancreas.
My daughter was diagnosed a month before her 3rd birthday and one thing I would tell people is to respect your routine. That my child can not have lunch at 1:30 or 2 even if it is a Christmas gathering. That we fallow a schedule to help us keep her glucose In target range, and that hopefully we can keep her from getting any complications later on in life.
Remember the other kids in the family have needs also and those shouldn’t be minimized. My daughter was diagnosed when she was 8 and spent several days in ICU. Her older sister(by 7 years) recently told me that after watching other families with a child with health issues that she appreciated the fact that she never felt minimized and we saw her needs as important as her sister’s. It has been 25 years since diagnosis, and teen years were very tough, but she is a healthy professional with a great life.
Tnx for writin this blog. My son ( 7yrs old) is TD1 since last 5yrs. And diagnosed at the age of 2.
I’m happy to are we are sometimes remembered… I’ve been a diabetic since age 8 and am now 36. The struggle never ends unfortunately but as you get older, you do learn to know your body better. My worst years we’re in my teens, in my case, if I’m not psychologically well, my diabetes is the first thing that goes downhill. I used food (choke and mars bars) to compensate when I felt down. Support and parent involvement is definitely needed. Even now, some days I just want to forget I’m a diabetic and now with 2 kids, I do sometimes forget to take my insulin before a meal. I’m happy that I have a supportive husband and daughter who know the signs of low and high blood sugars and will make me check my sugar if I’m out if it… Some of the signs can be irritability or sensitivity (I’ll cry for no reason) and drugged looking eyes.
It’s never easy, but it is manageable and I’ve learned to tell myself there are so many diseases that are much worse, it helps!
My sweet 7 year old was diagnosed on Wednesday … We have had such a journey this week in just accepting, learning… phew!
I wrote about it tonight here, just to sort of, let it out… http://withlovefromvalerie.blogspot.ca/2017/02/thoughts-last-week.html
My son was diagnosed at age 15 with T1D. He died at 23 in Oct 2015. He was in college, 8 weeks from graduating with his Accounting degree. He went to the Dr the day before. They diagnosed him with the flu. His brothers at the fraternity house where he lived took as good of care of him as they knew how. He died during the early morning hours the next day. No one called me to tell me he was sick. He had been home the previous weekend before he died on Tuesday. I cherish that weekend. His dad was on a business trip to D.C. He was on his way home when I called him to tell him. He was our only child. We are heartbroken. I was so angry at the Dr., but I have come to realize God is in control and wanted him back. He let me have him for 23 years, what a wonderful 23 years I had. I can’t wait to see him again. Oh what a glorious day that will be.
Michelle, I am so, so sorry for the loss of your son. Although my circumstances are very different (pregnancy loss), I also have children who have gone ahead of me to Heaven, and while I know how glorious our reunion will be, I miss them terribly on Earth. Are you in Columbia? Would you like to connect with other parents who have lost a child? I lead a pregnancy loss support group, but I also know of other groups for parents who lose a child in childhood or as an adult. I am praying for you tonight, and I hope that sharing your story here helps others know what to watch for with their children with Type 1 Diabetes.
No ma’am I live in Winchester TN, I have a tremendous support group around me. Thank you and I’m so sorry for your loss.
Hi Michelle, I’m really very sorry for your loss. My son has T1D as well, since he was 4yrs old, he’s now 14 and he’s my only child. If you don’t mind me asking, what was the cause of your son’s death? I’d like to know to watch out for my child. Thank you so much and God bless you.
I liked your blog I have had type 1 from the age of 10 I am 46 now and the pimp is a god send. The holidays are coming one thing I have learned growing up with diabetes is that if I cannot eat all the candy then HALLOWEEN is for scarring all the non diabetics for a whole day and I can laugh at them and there candy as they run off. And I may not be able to eat all the Christmas cookies I make but everyone said they are the best ones. Not having sugar can be good and fun sometimes parents are the strongest around to deal with your child’s diabetes. It means more than you ever will know. From a child of the best parents and strongest to deal with a type 1 diabetic. We can be very very moody at times
Thank You
Alex
After my DIABETES TYPE 2 diagnosis, I had typical symptoms of thirst, lethargy, severe tiredness, urinary frequency, hearing loss and ringing in the ears, vision problems, dehydration and weight gain. I was placed on metformin twice daily for several months, the symptoms only seemed to worsened. I began to do a lot of research and learnt about a DIABETES HERBAL TREATMENT from Rich Herbs Foundation and their success rate with the Diabetes treatment, i immediately started on the treatment, i started experience decline in major symptoms, the severe thirst, dry mouth, tiredness, urinary problems, dehydration and fatigue. My doctor took me off the metformin and other medications i was placed after the diabetes herbal treatment. Visit rich herbs foundation w w w. richherbsfoundation. c o m . I did another blood test after the treatment, i am diabetes free. I have also lost over 35 pounds since treatment.
Never ever let anyone tell you that it’s your fault your child developed type 1 diabetes. DKA is extremely common and many signs can help you
Determine if they are going into DKA ( diabetic ketone acidosis)
Fast & rapid breathing
Ketones In urine.
Fruity breath smell.
There is a condition in where the ketones in the blood don’t make it to there urine to be detected
Note* if you feel like this could be happening request from doctors to order a prescription for a ketone blood monitor
It is much like a gluecose monitor, requires a finger prick and a drop of blood
Always be your child’s advocate and if you have questions always ask, never let them make you feel bad for wanting to be educated.
Make sure you have contact with your diabetes educator
Be sure they give you the right numbers and take advantage of them