Feature Friday: Janielle!
Today you will meet an amazing little one named Janielle from Arizona. In the blog post you will hear how diabetes has affected her life, as told by her mother Maria Crisol. Her mother is also a warrior, and a wonderful example of a health advocate who is affected by diabetes 24/7. I love that she says, she is Janielle’s “pancreas momanger.” Remember that diabetes affects entire family units- not just the person who is diagnosed.
Describe you and your family!
I am a stay at home mom, 24/7 pancreas momanger, and homeschool teacher… I wear many hats. Married for 21 years to my middle school sweetheart. Mother of 3.Two boys 19,12 and Janielle 6 years old. Janielle is a very strong, courageous and lovely little girl. Sometimes she is shy when she meets someone for the first time but she warms up pretty quickly.
How many years has your loved one been diagnosed with diabetes?
Janielle was diagnosed at the age of 11 months on January 18,2016.
The whole family was sick two weeks before Janielle’s diagnosed with the flu. Janielle was the only one who did not get sick. So after two weeks Janielle started having fever being fuzzy and wanted to be held that was weird because she hated being carried for long periods of time. My husband had been taking care of her at night since I was staying in the hospital all night helping take care of his mother who was very ill and in a coma. He told me that there was something wrong with Janielle. When I got home I noticed Janielle had a fever and didn’t want to eat. So my husband told me to take her to the doctor but it was a Sunday, I knew the office was closed so I called the emergency number from the office no one called me back, so I took her to Urgent care seeing that the fever would come and go for a short period of time which was weird.
Once I got her seen the doctor said and I quote “She caught something viral just give her tylenol and it should go away in a couple of days” that didn’t sit right with me. Janielle got even more fuzzier and was crying more but it was the way she cried and how she acted that I knew there was something deeper. She was peeing more but I assume I got a bad box of diapers. I even contacted the company Huggies and didn’t think anything more. We hardly got some sleep that night. She would cry and fall right back up. She woke up early the next day and I got her oatmeal ready and she only took one tablespoon of it and she throw up and all over her hair she fainted on me she scared me to death and then she woke up I rush to clean her hair as my husband was trying to get her an appointment at her doctor but no luck. So I took her back to the urgent care we were the first ones there and I got the same doctor, but this time I was not having it.
I demanded to get another doctor. She got upset and I didnt care.
Another doctor came in and listened to what I had to say as I was explaining to him , he observed how Janielle was drinking her pedialyte. So he ran some blood work and urine to make sure she didn’t have a UTI. Nurses came to the room to draw blood but they couldn’t find any veins on Janielle. We finally got Janielle urine results back and the doctor told me she was passing glucose through her urine. I went into shock. The first thing that came out of my mouth was she doesn’t drink sweets. I was so uneducated. We were transported by ambulance to Phoenix Children’s Hospital, a group of doctors waiting for Janielle at the door. Nurses started IV lines and withdrawing blood and Janielle went on a diabetes ketoacidosis. Her blood sugars were at 997 she only weighed 20 pounds. We spend one week and half in the hospital learning about type 1 diabetes and how to care for Janielle.
Initial Thoughts (Post Diagnosis)
As a parent I felt like I failed her and I felt guilty and lonely. I was scared, even though I trained and educated on the basics to care for her. Also, afraid to give her insulin because if I gave her too much I could kill her, and if I didn’t… I would kill her too. I struggle a lot after Janielle’s diagnosed for the first year. We didn’t have a pump at the time so we did MID and my insurance didn’t want to cover dexcom. Every time I could check her blood sugars I felt like I was hurting her, she was always high or too low and that got me into depression.
How did you explain diabetes to your child?
Janielle was too young to explain she had diabetes. So all she has known her whole life is life with diabetes and that is normal for her. As she has got older she has asked how she got diabetes and not why.
A tip is to take long deep breaths and is okay not to get it right the first time or the second. Listening to podcasts(Juice box, diabetes connections, pancreas pals, and mastering diabetes) and reading blogs(type one diabetic-life.com, t1d mod squad.org,).
Share what the word thrive means to you!
For me, the word thrive is seeing that Janielle talks so confident about her diabetes and is being involved in her care. She is wanting to take responsibilities and knowing how important it is to speak up, not be embarrassed, and to show and explain her gadgets.
What helps you as the caregiver and your child thrive with diabetes?
Listing to other families’ experiences, Listening to juicebox podcasts, reading blogs, reading books. Talking to others t1d parents. Instagram has helped me so much to communicate with others.
What do you wish someone told you earlier as a caregiver for someone with diabetes?
I wish someone would’ve told me it is okay to grief but don’t stay there too long and to not to feel guilty when you need me time. It is okay to ask for help.
What words of encouragement or hope would you give to other families?
It is okay not to get it right the first, second, three, or four times. Everything will come as a second nature after doing it over and over. You’re not alone, take it day by day take deep breaths. You will achieve normal blood sugars.
Let’s continue to share our stories, experience, and failures because there’s always someone needing guidance, our stories, and our journeys that can help impact someone’s life to continue to lift each other up. As parents we can feel burned out and it’s okay. The more we share our stories we bring more awareness to type 1 diabetes on what symptoms to look for type 1 diabetes our stories can help save a life. Find what works for you and your family.
If you want to learn more from this amazing family visit them on Instagram: @t1dlagata1985