I remember when my dear friend Stacie's beautiful little girl was first diagnosed with Type 1 Diabetes. I really knew very little about the disease.
I recently asked Stacie if she would be willing to share her daughter Caroline's story with us. She graciously agreed and I am so appreciative that she did. I hope this heart-felt interview will be informative and encouraging to you, as it was to me...
Please tell us what symptoms your daughter was experiencing and what made you take her to the hospital?
It was 2008. My house was crazy. The kids were 7,5, 3 and 11 months. Lots going on...constantly. Looking back on it, I might have noticed earlier if not so harried, but grateful for God’s divine intervention.
Caroline (7) had been more tired than usual, had dark circles under her eyes, went to the restroom frequently, was moody, and had lost several pounds…despite eating frequently. I hadn't been able to pin point anything in particular, and she was feeling well enough to go to school. I just felt like she was not well. I remember vividly praying the night before her diagnosis, "God reveal to me what is wrong with Caroline, if anything.”
Caroline, now 14, with her Mom, Stacie
In the morning. I made an appointment with the pediatrician for after school. I thought she must have had a bladder infection or mono. I remember my words so clear to the doctor that afternoon, “Something is wrong and I’m not leaving here until we figure it out.”
As I rattled off the symptoms, I could tell by the sympathetic look on the doctor's face, she knew what was wrong. One single drop of her blood on a little test strip….and Caroline’s life was changed forever.
What happened in the hospital (tests, results, what you were told)?
Her blood sugar was over 600. A healthy person’s blood sugar will not go above 140. She was very sick, but by the grace of God… she was functioning fine. Not all are that lucky.
We went straight to Children's Hospital Orange Country. There, we were told that Caroline needed insulin to live. Her pancreas had stopped working as the result of an autoimmune attack. Her pancreas was not producing the insulin that our bodies need to turn food into fuel. That’s why she was so thin…she was in starvation mode. Every morsel she ate was not being metabolized properly, just turned into sugar in her bloodstream and wreaking havoc on her organs.
They also assured us with Type 1 Diabetes, there was nothing we could have done to prevent this. They gave me the words that I would need to replay over and over in my brain..."You did nothing wrong.”
The nurses had to hold her down for the shots and the IV. As a mother, it was one of the scariest moments of my life. One nurse coldly said, "She’d better get used to this." I had to remain strong for Caroline. Lewis, my husband, was literally on a flight to Amsterdam. I did not have my husband by my side. But Jesus stepped in and He was there for me that day in every way.
Type 1 Diabetes affects about 1 in 300 children. There is a genetic component (although we don’t have any immediate family history) and environmental triggers, such as a cold or illness that start the autoimmune attack. It is not contagious, however, the cause is still unknown. People with T1D must take their blood sugar frequently, by pricking their finger and injecting insulin multiple times a day to live. Even with that intensive care, insulin is not a cure for diabetes. Nor does it prevent its eventual and devastating complications, which include kidney failure, blindness, heart disease, stroke, amputation, or sudden death from low blood sugar.
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What was the hardest part in trying to absorb your daughter's diagnosis?
The hardest part was taking in the diagnosis and processing that although this wasn’t something that was going to take my baby today, for the rest of her life she would have to navigate and endure this disease.
I kept telling myself, "It’s not cancer." Honestly, I feel horrible saying this, but I just kept reminding myself that someone always has it worse. Anyone who knows me knows that I am a control freak. I hate relying on others, and I hate relying on medicine even more. This was all a tough pill to swallow.
But, I knew that every Bible study that I had taken, every scripture I had ever loved and every hardship I had overcome had prepared me for this moment. We could get through this. We had our faith and that’s all we needed. Well, that and a little insulin and some modern medical devices that God so graciously has provided.
How did your faith help you during this time? How did you see God working in this situation?
Through every step of the way God provided for us. Most importantly, He has given our family the peace that passes all understanding. That peace gets us through each day.
He has given me the ability to understand Type 1 Diabetes (T1D) and access to the best doctors and latest technologies and treatments available.
He has given me the stamina to wake up multiple times a night for the last 7 years in order to check Caroline’s blood sugar.
He has given me wisdom to navigate parenting during these precious years of childhood while trying to help her control an uncontrollable disease.
He has given me guidance and the words to say when my daughter is angry or asks, "Why me?"
He has given us a servant’s heart to minister to other families that are in the same situation.
He has given us the creative inspiration to raise money for a cure.
HE HAS GIVEN US HOPE.
Through His love, He has let me see a strong, patient side of myself that I didn’t even know existed. And He has created a strong, beautiful girl that has such a heart for Him through all of this. And that has been the biggest blessing of all.
How did you come up with a plan of care? What does living with a child with Type 1 Diabetes look like on a daily basis?
To live with T1D, you must take your blood sugar by pricking your finger when you wake up in the morning, every time you eat, before bed and during the night. Keeping your blood sugar at a stable number is difficult when you eat different things and have different levels of activity each day.
And did you know that blood sugar is not just affected by what you eat?? All of your emotions, adrenaline and natural growth hormones affect your blood sugar. Try managing those changing emotions when you are a 13 year old girl!
People with T1D take insulin continuously to stabilize their standing blood sugar, and they take an additional amount of insulin based on how many carbohydrates they eat. This means everything eaten must be put into a calculation that is specific for that person, and insulin is given to them to cover that food eaten. Our pancreases do all that work for us without us thinking about it. Have you thanked your healthy pancreas today??? :)
For a Type 1 Diabetic, all that work is going on outside of their bodies each day, each meal, each hour. Insulin can not be taken orally. The insulin is delivered via multiple injections each day or a “pump” that is connected to the body and administers the insulin when needed. Pumps are changed by injection every 3 days.
It is hard to keep things stable, because the amount of insulin needed changes, the insulin given might be too much depending on what kind of food you eat, since some foods burn faster than others. Imagine digesting a pizza with the works vs. a piece of watermelon. All carbs are not created equal!
Too much insulin can cause sudden low blood sugar, which can kill you. Yes, that’s why the nights are so fun. It is hard to tell if you have low blood sugar while you are sleeping. This is what causes T1D parents to go a little crazy.
But through the wonders of technology, there is a Continuous Glucose Monitor that can also be worn on the body for up to 7 days at a time. It provides a read out of the current blood sugar onto a device that can be transmitted through bluetooth to your phone or apple watch and it alerts you if there is an issue. So given good wifi…..you can see your child’s blood sugar at all time. This little number has changed our life and I am truly grateful.
Honestly, I could not have imagined, just after diagnosis, that life could look like it does today. Caroline is healthy, a star student and athlete. She is a leader and truly does not let T1D get in the way. Most of the time, no one truly understands what she goes through in order to keep things normal. Things like shots, blood sugar finger pricks, pump site changes are routine….like brushing our teeth.
What has worked well? Any tips for other parents of children with T1D?
The best thing I did was to get connected with others going through the same thing. Immediately after Caroline was diagnosed, I got involved with our local chapter of the JDRF (Juvenile Diabetes Research Foundation). I met other moms that helped me. We shared the tricks of the trade, connected on a level that only moms going through it could truly understand. I talk to these moms weekly. This little network has been so valuable to me.
Caroline even met a best friend that was diagnosed when she was 3. Together, they started a "Kiss T1D Goodbye" campaign and have raised over $100K for a cure by selling mistletoe, candy kisses and mood lipstick at our annual JDRF gala. Seriously. Those connections, friendships and advocating a cure have been the best part of Caroline’s diagnosis. It has been a huge blessing to me to lend encouragement to those in the beginning of their T1D journey.
What has been the most challenging?
We find that people not understanding the difference between Type 1 Diabetes and Type 2 Diabetes has been frustrating. Type 2 Diabetes can be healed through diet and exercise. It occurs when a pancreas is worn out rather than not working at all. People think that Caroline can “outgrow” T1D or eat a certain way and it will go away. That is not the case. These are two very different diseases, and it’s unfortunate that they share the same name.
Everyone tells about there great aunt that is dealing with it or their 80 year old grandmother. We smile and are polite. But it really frustrates us that people don’t know that out of the 29 million Americans that have diabetes, only 1.25 million have Type 1 Diabetes. It’s an autoimmune disease on the rise.
What has surprised you most about Caroline, yourself and your family after Caroline's diagnosis?
Caroline’s positive attitude inspires me everyday. She has an appreciative soul and a perserverence that is far beyond her years.
However, Caroline’s diagnosis has been hard on the family and in the beginning, hard on my marriage. But by staying in God’s word, and being a faithful prayer warrior, we have a stronger faith and family for it.
My other children have an empathy for others that I truly don’t think they could have gained without walking alongside Caroline during this journey. They appreciate their health and they understand and stand-up for those that are different. I think we all have a stronger character and bear fruits of the spirit because of it.
How would you encourage parents who may have just received this diagnosis for their child?
I tell any parents after diagnosis, "Turn to your faith." Let Jesus take the wheel. Don’t underestimate yourself or your child. You will be astounded by how much you can handle and how strong you can be with God’s help.
Is there a website for more information?
Is there anything else you'd like to share?
I am always encouraged by scripture. I can't imagine life without it! About 6 months after Caroline was diagnosed, I was praying for a straight out healing. I wanted the Lord to just miraculously heal her. While part of me had faith, part of me felt ridiculous to even hope for that. Then I opened my Bible and saw this scripture:
Jeremiah 32:27 "I am the LORD, the God of all mankind. Is anything too difficult for me?”
I am holding on to that!
What an inspiration! I love how this mother, daughter and family have found added measures of faith, strength, patience and determination as they've faced this life-altering disease together. Not only is Caroline thriving, but the family is reaching out to help others in their journey with T1D.
Thank you so much for sharing, Stacie.
And readers, I'm thankful you took the time to read more about Type 1 Diabetes today. If you know of anyone with T1D, please forward this post along.
If you have any questions or comments for Stacie or me, please leave them in the comment section below.
Have a blessed day!
My son with Down syndrome was diagnosed by me at 18 months. The doctors told me it was highly unlikely that he could have diabetes. Yep, blood sugar over 600, mad dash to the hospital and basically ditto on your story. He handles it like a champ taking his own glucose readings and calculating insulin with the help of a chart we devised and then giving himself injections. He prefers injections and didn't like the pump. One thing he loved doing was going to diabetes camp where everyone was in the same boat. Loved your story.
ReplyDeleteHi Susan, I'm so glad you were able to recognize your son's symptoms. He sounds like a very strong little boy! I'm glad they offer a camp like that, where children living with T1D can see that they're not alone. Thank you for sharing ... I'm glad you enjoyed reading Stacie and Caroline's story. Xo
DeleteWe had a unique experience in our family. I have worked for a prominent insulin company for years and no history of type 1 in our family at all. My niece, 19 at the time, came over and said "Aunt Diane, I think I may be diabetic. I am drinking juice and going to the bathroom all the time" Her mom and I kind of brushed it off even though her mom is in the medical field and myself well educated on signs and symptoms. That just shows how much we didn't think it could happen in our family. Denial at it's worst! After a couple nights of odd behavior her mom finally took her to the Dr. where she was immediately admitted into the hospital with over 600 blood sugars. I was at the hospital next door having a procedure done when I found out and walked over to see her after. Needless to say we were all shocked. At the time, her family didn't quite understand the seriousness of the disease. I felt lucky enough to be there for their support.
DeleteIt has been 7 years now and she has had her ups and downs and in and out of the hospital. It is a hard age to be diagnosed. However, she has the brightest spirit and has not let Type 1 stop her from reaching her dreams. She has always been a great dancer and she has continued dancing professionally with her pump and without her pump (just using insulin pens). She is such an inspiration to so many. Thank you for sharing your story. There is so much more education needed out there to the public. Good luck and keep smiling!