Ask any expecting parent what they want their baby to be, and chances are the answer will not have anything to do with sex, hair color, eye color, height or weight. In most cases, they will simply respond with one word: healthy. All parents want to know that the life they bring into this world will be safe and protected from all harm’s way, but if they discover their child has type 1 diabetes, is this protection now out of their hands? No.

A child with type 1 diabetes has a genetic pre-disposition to the disease, and it can be triggered by environmental factors. This is probably a parents’ worst fear; that their baby may be born with a health risk and there is no way to prevent it. The hardest news for a mother or father is that their little miracle must forever monitor their blood sugar levels by injecting themselves with insulin, and counting  carbohydrates. Upon finding out that their child has type 1 diabetes, life as they know it has changed. But does this mean that life as they know it is worse? No.

With the right tools and a proper support system, life does not have to be worse for the parent of a child with type 1 diabetes, and more importantly, it does not have to be worse for the actual child. Different does not mean worse. With the help of an organization like JDRF, families can learn to manage type 1, allowing the diabetic to live a full, healthy and happy life. There is nothing more inspiring and fulfilling than reading about the positive changes that JDRF has implemented into peoples’ lives, providing strength in the face of struggle. It’s comforting to know that just when someone feels type 1 diabetes may be out of their hands, JDRF steps in to help both parents and children take control of their health and their happiness.

Click here for JDRF support and resources >>

Hello…. My name is Cassidy Hornsby, I am 13 years old. I live in Brentwood, CA. I LOVE soccer and play on a competitive team, the Evolution. I also run track for my middle school and play on the softball team. And I was diagnosed with diabetes on March 31, 2005. Since then my life has been full of ups and downs, some because of having diabetes and some just from being a kid.

In the five years since my diagnoses, I’ve been involved in many diabetes activities, from JDRF’s Walk for a Cure, to attending the Children with Diabetes annual conferences called Friends for Life and going to the Diabetic Youth Foundation’s camp programs and Bearskin Meadow Camp. All of it has been an awesome adventure. I still wish I didn’t have diabetes, but it’s hard to feel too sorry for myself when my family and I are part of so many cool activities.

Something I’m most proud of happened with I was in 5th grade at Pioneer Elementary School (I’m in 7th grade now). With the help on my mom (who works at Pioneer) and my amazing teacher, I organized a Diabetes Awareness Week at my school. I wanted to let everyone know what having diabetes is like. We had the Dogs 4 Diabetics come and give an assembly, we also has a person from JDRF come to speak (I even got up in front of the whole school and shared what diabetes is like for me -scary). And the week ended with an awareness walk with all the kids marching around the playground. It was really cool

From all the experiences and places I’ve been, I’ve learned so much. I’ve met some inspiring people that have made me feel like I can do anything I set my mind to. I’ve met Miss American 1999, Nicole Johnson, Will Cross – the first American and first person with diabetes to climb the highest peak on each continent and trek to the North and South Poles, Jen Alexander, the 2008 Diabetes Exercise and Sports Association’s “Athlete of the Year,” Chris Dudley and Adam Morrison both from the NBA, just to name a few. All are living with diabetes, just like me!

I think it would be a lot of fun to be a part of the teens mentoring program. I have learned a lot and I think it would be great to share my experiences with a kid that’s just learning about living with diabetes. I also understand that there’s still so much that I don’t know. I hope to hear from you soon. Thank you for taking the time to read my letter!

Thanks -

Do you know how challenging it is to manage intense exercise and glucose levels? As parents have you run to the side lines or the dugout or the court or the stage with juice and glucose hoping our child will be back in range when he is needed? Have you watched your child miss opportunities, be passed over for all stars, miss a games and performances as a result of this unpredictable disease?  Sometimes the frustration can be defeating and our children can give up.

Thriving 2010! to Feature Performers with Type 1 Diabetes as well as Other Professional and Student Artists in Support of the Juvenile Diabetes Research Foundation

Thriving 2010! is a performing arts event that celebrates those who don’t give up. Come to see a tour de force of local performing artists create a one of a kind performance in celebration of those thriving while managing diabetes. Professional and student performers, including four with type 1 diabetes, work together to present various art forms including dance, musical theater, piano, static trapeze, and vocal performances.

In addition to the performances, we will hear an inspiration talk from Zippora Karz a retired soloist from New York City Ballet who was diagnosed with type 1 at the peak of her career and managed to continue realizing her dream. Prepare to be captivated and inspired by the amazing talent. It is great for our children to see people who are thriving have a positive attitude about managing their disease.

A tour de force of local performing artists create a one of a kind performance in celebration of those thriving while managing diabetes. Professional and student performers, including four with type 1 diabetes, work together to present various art forms including dance, musical theater, piano, static trapeze, and vocal performances. Prepare to be captivated and inspired by the amazing talent.

Along with many amazing performers, the event will include four talented type 1 diabetes performers: Danielle Foreman (aerialist on the static trapeze), Abigail Tilton (Ballet dancer), Savannah Pasha (Ballet dancer), Zippora Karz (retired dancer from NYC Ballet). We also have a type 2 performer, David Shepard (piano).

June 19, 2010 at 7:30 pm, College of Marin Fine Arts Theater, Laurel Avenue and Sir Francis Drake Blvd, Kentfield, CA, 94904.  Tickets are $25.  Visit thrivingmarin2010.com for tickets and information.

I am the parent of Savannah Pasha, type 1 and Hashimotos, diagnosed July 21, 2008.  I am also  co-producing the event with Amy London, the ballet master at Smuin ballet. )  We wanted to find a way to bring a bit of education and inspiration, and thus Thriving 2010! came to be.

JDRF is excited to bring “Diabetes CommuniTEENs – type 1 teens mentoring type 1 kids” to Silicon Valley!

In this program teens and kids build one-on-one relationships where kids can get a peek at life as a teenager (with type 1 diabetes), and teens can be role models. Everyone will have fun participating together in activities such as bowling, ice skating, pool parties and more. All events are free or low cost.

Who Can Join?

All teens ages 13–18 years old with type 1 diabetes (this is a great way to fulfill community service requirements for school or college resumes).

In order to participate, teens must:

• submit an application form

• submit a recommendation form

• sign a contract to commit 1-5 hours per month for one year, attend a majority of events, and communicate with their kid match on a monthly basis.

All children ages 5–12 years old with type 1 diabetes may apply for a teen mentor.  Children must be accompanied by an adult at all activities.

All interested teens should attend an informational meeting on Sunday, April 18th, 11:30 a.m. to 1 p.m. at Palo Alto Bowl (this meeting is prior to the JDRF bowling event – teens and their families may stay, eat and bowl for free after the meeting if they choose). RSVP to Carolyn Eisen, Outreach Manager, at ceisen@jdrf.org or (415) 597-6317 if you plan to attend.

For more information or to apply to join Diabetes CommuniTEENS please contact Carolyn Eisen, Outreach Manager: ceisen@jdrf.org or (415) 597-6317.

This is the final entry in a series of four posts by Shelly Jensen.

In the Hospital. My endocrinologist gave me great advice. He forewarned me that I would be more knowledgeable about my diabetes than the nurses would be in the maternity ward. The nurses who took care of me were extraordinary women and I am forever grateful for how sensitive and accommodating they were during both of my stays in the hospital. However, my endocrinologist was correct. I needed to explain to each new nurse that I did not have gestational diabetes and that I had Type 1 Diabetes. Some of the nurses were intrigued by this and took it on as an extra challenge. I told myself I was an interesting case and a learning experience for them. I seemed to get some extra attention which I loved!

You may be asked  to remove  your pump right before you give birth and you will need to remember  put it back on after the birth. A very important thing to remember is that once your baby is no longer in your body, your insulin needs will drop almost immediately. This is a critical time to be in regular contact with your endocrinologist and your diabetic nurse. There will be many adjustments made to your insulin dosage and if you are up to it, you need to stay on top of it more than anyone.

I will never forget the time a maternity nurse noted some low readings and then called my endocrinologist herself for instructions. She came back to let me know that I should change my basal insulin dosage from .7 an hour to 7.5 an hour. Huh?? I said “That can’t be right.” She was adamant about the instructions. Of course, I knew that .75 was the correct instruction and entered it into my pump accordingly. Later I talked to my endocrinologist myself and told him the story. He said “You see, I told you that you would be more knowledgeable than anyone!” Can you imagine if I had dumbly followed the nurse’s orders?

The maternity nurses will want to check your blood sugar readings regularly. Be sure to bring your own glucose meter. There are not many meters available in the maternity ward and it is sometimes difficult to locate one. Also, you will want to continue to store your results in your own meter for downloading data later on.

I will not disclose my A1C results for fear of it being construed as medical advice. But I will tell you that my medical team all agreed that my control was very good throughout both of my pregnancies. Despite this, both of my babies were born very large. My first, our daughter Ava, was 10 lbs 15 oz and my second, our son Aaron Jr., was 10 lbs 11 oz. Each time, everyone in the operating room agreed that they looked like little Buddhas as they emerged into the world. They each had low blood sugar after the birth and were sent to the Neonatal ICU for sugar supplements and close monitoring. And they each became newborn celebrities as they were the fattest babies in the ward.

Both Ava and Aaron were given a bottle of formula immediately after being born. I knew I wanted to breast feed and I did not even realize that a bottle was given my baby. It turns out that I had no choice in this matter due to the blood sugar issues of the baby.  Some women may have been furious about this because it is commonly believed that giving a bottle to a newborn will disrupt the success of the breastfeeding process. However, I knew I had to think of the overall health of my baby and nothing else.  I used a breast pump and brought my milk down to the NICU every day. When each baby came home, I was able to successfully breastfeed while continuing to supplement with a bottle or two a day.

New Motherhood. To ease your mind, I will tell you that it only took about a month for each of my children to “level out” in their weight. Ava, now three years old, is currently in the 25^th percentile of weight and 75^th percentile of height. This is similar to my own stature and naturally how she is growing. Aaron Jr. is now one year old and in the 50^th percentile of both weight and height, similar to the stature of my husband.

As a new mom your tendency may be to put yourself last. This is very normal for new moms but it can become a health threat if you are diabetic. It starts out with not finding time for any kind of pampering to not finding time to shower much less shave your legs and can turn into never finding time to exercise, check your blood sugar and monitor your diet. This started to happen when my first baby was born and was even worse when my second baby was born. I really had to have a talk with myself.  My constant reminder was and still is this: your baby needs a healthy and happy mother.  It is not a selfish act to take care of yourself. In fact, letting this slide can be considered selfish now that another little human being is relying on you to be the best you can be.

Remembering to take care of yourself can be especially challenging if you decide to breastfeed. I found that breastfeeding brought my blood sugar levels down. This can be a good thing until it brings your blood sugars levels too low. And, if your baby is nursing at the moment, the last thing you want to do is disturb the process by checking your blood sugar or pouring yourself a glass of orange juice. However, you must do that. I found myself in a scary situation when I thought I could make it just a few more minutes so that my baby could finish nursing. I let it go too long and almost passed out. You will have to teach yourself that there are times when you must put yourself first in order to remain a healthy mother for your child. Take the time to check your blood sugar and eat when you need to nourish yourself.

Ava and Aaron Jr. are both very healthy and active, each displaying their father’s dazzling blue eyes. Ava is taking ballet classes and loves to wear her princess dresses. She is very aware of Mommy’s medical devices. When I check my blood sugar, she often looks at me with concern and says, “Mommy, is that an owie?” I say, “Well, not really. It is just something that Mommy has to do.” Aaron Jr. is full of smiles and giggles. I just taught him the word “hug”. He can’t say it but he knows what it means when I ask for one. He snuggles under my neck and I melt. I am not worried about my children inheriting the disease from me. Of course I know the signs and will pick up on them immediately if I suspect a thing. However, the chances are very low and my husband and I choose to live each day appreciating the amazing two human beings we have brought into our world. In fact, today we participated in our first “Walk for the Cure” as Team Jensen. We all had a blast.

Post Script

Share your stories with me. As I continue to say, every pregnancy and every person with diabetes is different. These were my experiences but you will have your own unique experiences. Please write to me and let me know your own story. I would love to hear from you. Also, if you have Type 1 Diabetes and are hoping to become a mother, please contact me. My goal is to reach out other expectant mothers with Type 1 Diabetes. My wish is that the next woman who feels as frightened and alone as I did may be comforted by our stories.

Jensen Family Photo

This is the third entry in a series of four posts by Shelly Jensen.

Carbs, Carbs,Carbs (or not). Let’s get this out the way: when we are pregnant, we often crave food or can’t stand the sight of it. If you are like me, you crave carbohydrates. Even when I was going through morning sickness, the only thing that would help me feel better was carbs! I am talking about serious carbs – macaroni and cheese, banana muffins, bagels. This is normal pregnancy stuff but can make you feel terribly guilty if you succumb to it. The important thing to remember is to plan for these episodes. Also, talk to your doctor or nurse about it. Tell him or her, “Look, I am craving carbs, I’m hormonal and I cannot help myself!” The important thing is to be honest with your team. Do not hold back and do not feel ashamed.

Like every other pregnant woman, you have strange new cravings as well as strange aversions. If you have morning sickness you might have a hard time eating. This also needs to be discussed with your team. They will work out a plan for you so that you can prepare for these cravings as well as times that you just can’t eat (unfortunately, that never happened to me). Insulin dosages can be adjusted very precisely throughout the day to accommodate these moments.

The same goes for an exercise program. If you are a pregnant woman who would like to continue your exercise regime throughout your pregnancy you need to discuss a plan with your team. As you already know, exercise affects your blood sugar and when you add pregnancy to that equation, you need to pay even closer attention. If you are not already in the habit, please keep glucose tablets in your pocket during exercise. Your temporary basal settings on your pump will come in very handy for planned exercise. As your doctor tweaks your insulin settings very precisely and meticulously, you will start to realize what an important tool it will be throughout your entire pregnancy.

First Trimester Dips. I had morning sickness during each of my pregnancies in the first trimester. Actually, it was more like all-day sickness for me. Although I was eating muffins and macaroni and cheese, I noticed a drop in my insulin needs. This is very common in the first trimester and is due to your new fetus confiscating the glucose from your body. If you are one to despise the thought of food during the first trimester you may notice an even lower dip in your insulin requirements.

As you may know from previous experiences, sudden and extreme hypoglycemia can be very frightening. When you are under tighter control, you are more prone to these episodes. During the first trimester of pregnancy, you may be even more susceptible to an occurrence. This happened to me a few times in each of my pregnancies. I am fortunate that I can feel it coming on right away and so was able to correct it quickly. However, one day I was visiting a friend out of town and I happened to be alone in her house on Sunday morning. Before I even knew what was happening I felt as though I was going to faint right there in her living room. My body started shaking and I was seeing black spots. I knew what it was but I had never felt it so badly. I could barely make it to the pantry where I ransacked a package of cookies. I did recover but it scared me to death. The only thought that went through my mind was “what if this happens when I am home alone with my newborn?” This is a very real concern and I vowed to keep glucose tablets in every room of the house, in my pockets and purse at all times. To this day, I stockpile glucose tablets. Next, I had to explain to my friend why her pantry looked like an animal had attacked it.

I have always been a bit embarrassed about my diabetes and some of the side effects. However, the episode at my friend’s house made me realize that I now had another human being to consider. Of course my husband and family were very well informed of these types of side effects but I could no longer let my awkwardness prevent me from letting my friends, neighbors and coworkers know about my condition and what to do if I had symptoms of low blood sugar.

I wound up announcing my pregnancy earlier than most women do. When I took this step it felt very empowering and it also felt like an act of love for my baby. Just be warned – many of your well-meaning friends will nod with empathy as they tell you about their uncle who was just diagnosed with diabetes and their cousin who had borderline diabetes while she was pregnant. Most of the general public does not understand the differences between the various types of diabetes. So, I suggest you just nod back with a smile and if the moment permits, clarify your condition. They will then realize that the “pager” you have been wearing is actually an insulin pump.

Second Trimester Bliss. I truly enjoyed the second trimester of both of my pregnancies. As is common, my blood sugar levels and insulin requirements evened out and I felt great. Morning sickness was over and I was craving healthy foods and taking walks. My readings were near perfect. My “bump” was showing but I was not uncomfortable (yet). I started telling the whole world that I was pregnant. These glory days inspired me to pay even closer attention to my food intake and patterns throughout the day.

Lots of tests were conducted in this trimester. Due to my “advanced maternal age”, not because of my diabetes, we decided to have an amniocentesis to detect disorders and defects such as Down’s Syndrome. We were thrilled that the results came back with no red flags. Next, my doctor ordered a level 2 ultra sound to be sure the baby was developing properly (translation: no deformities in the lungs or heart and other organs). My husband and I were much more apprehensive about this test than the amniocentesis.  Everything was measured as precisely as possible. So, when the specialist who read the measurements brought us into his office we were a bit nervous. I will never forget the words he used: “your baby is developing normally, thank God.” The words “thank God” really hit me with how “high risk” this pregnancy really was. My husband and I celebrated that evening by calling our family members to let them know the news.

Third Trimester Panic. The only good thing about my third trimester was that I did not have to take the glucose tolerance test for gestational diabetes! I had a terrible time keeping up with how rapidly my insulin needs were increasing. During both pregnancies, there were some scary and unexplained high readings. My wonderful nurse was always there for me. I called her crying on more than one occasion. I was so worried for my unborn child. By my 38^th week my total daily insulin dosage had doubled from pre-pregnancy.  My belly was so big that I could not see my infusion sites and I wound up with some sores that I never knew were there until my doctor saw them. So, I had to get experimental with my sites so that I could see them. The only good thing was that my breasts became so large that I was able to conceal my pump in my bra very easily, something I continued to do after giving birth.

Towards the end of the third trimester of my first pregnancy, I developed edema (severe swelling in my ankles). This is a higher risk when pregnant with Type 1 Diabetes. I am not exaggerating when I say that my ankles looked like those of an elephant. I frequently looked at them saying out loud, “these are not my legs!”

The edema quickly developed into a case of preeclampsia (high blood pressure and protein in my urine). This is also a higher risk when pregnant with Type 1 Diabetes and the only cure is giving birth. While edema is uncomfortable, preeclampsia is very dangerous to the mother as well as the fetus. Incidentally, I did not develop either of these conditions in my second pregnancy. When preeclampsia was discovered at a routine visit with my Obstetrician on a Friday afternoon, I was swiftly sent home on bed rest with medical jugs that I was to fill with my urine. Picture my devoted husband carrying these samples to my doctor’s office on his way to work! I just kept saying, “For better or worse!” Well, the bed rest did not last long because I simply could not remain in bed. When I visited my doctor again with no signs of improvement, I was sent to the maternity triage. I was then admitted to the hospital and waited for five days until I had an emergency cesarean section. To be continued.

Post Script

Share your stories with me. As I continue to say, every pregnancy and every person with diabetes is different. These were my experiences but you will have your own unique experiences. Please write to me and let me know your own story. I would love to hear from you. Also, if you have Type 1 Diabetes and are hoping to become a mother, please contact me. My goal is to reach out other expectant mothers with Type 1 Diabetes. My wish is that the next woman who feels as frightened and alone as I did may be comforted by our stories.

This is the third entry in a series of four posts by Shelly Jensen.

Heading into the second trimester of my first pregnancy, a friend asked me how I was feeling. She asked me this every time we talked but this time she said “I remember when I was pregnant that I felt sort of alone, like no one could possibly understand what my body was going through.“ I knew exactly what she meant and on more than one level. I have always felt that way about living with Type 1 Diabetes – alone, like no one else in the world could possibly understand the physical and emotional anguishes that often accompany this disease. Couple that with some of the hardships of pregnancy and I found myself in a very lonely, private place. I was not worried about how the disease would affect me while I was pregnant – your body already goes through so much while pregnant, what was one more thing? I was worried about my unborn child.

This is not to say that I did not have tremendous loving support in my life at the time. My husband, Aaron, my friends and family were there to listen, learn about my plight and offer whatever caring words they could muster up. Aaron spent many more hours on the internet searching out information than I did. More than once, he came into our bedroom late at night with great concern having found some extreme cases that often pop up in cyberspace. My team of specialists – my “high risk” obstetrician, endocrinologist, diabetic nurse – was as supportive and knowledgeable as one could wish for. Actually, I was thrilled to be pregnant and already in love with my unborn child.

As many first-time expectant mothers do, I read all of the popular books on pregnancy, some more light hearted, some more technical. As the famed author C.S. Lewis once said, “We read to know we are not alone.” So, after reading my books on pregnancy, I searched the internet for any kind of support forums or information dedicated to pregnancy and Type 1 Diabetes. I found plenty of information focused on Gestational Diabetes. However, this is a very different condition – one that I would have gladly undertaken in place of what I was facing. I needed to read accounts of pregnant women with Type 1 Diabetes, or better yet, success stories of healthy babies born to these moms. I became frustrated at books and websites that wrap all types of diabetes into one. Although the symptoms are similar, the conditions and living experiences of the different types are very dissimilar. And, material about Type 1 Diabetes, or Juvenile Diabetes, seemed to focus too much on the “juvenile” aspect of the disease. I found myself saying directly to the computer screen “hey, we juveniles grow up and some of want to become mothers!” If I found any information, it was a link to warnings about getting pregnant with Type 1 Diabetes, including possible developmental defects of the fetus.

Was I really the only woman going through this? Or, was I the only one feeling scared and alone? Were all other expectant mothers with Type 1 Diabetes totally confident that their unborn children would be perfectly unharmed by the disease? Of course not. I could not be the only woman dealing with Type 1 Diabetes and petrified that my unborn child would be harmed because of my condition. I desperately yearned for some support and empathy. Living with Type 1 Diabetes and now pregnancy with an unborn life relying on my “good behavior” was a very scary responsibility.

My next step was to talk with my diabetic nurse, who I had gotten to know very well since I had been checking in with her with her once a week to chart my “numbers”. I asked her if she was working with other women like me and she said she had three other patients at various stages of pregnancy. I asked her if she thought they might be interested in forming a support group. She excitedly answered that she thought they would. But due to confidentiality laws, she would have to arrange it. I was so eager to meet these women! Well, everybody’s schedules were so busy and it was very difficult to arrange a meeting. And, as pregnancy goes, time and gestation waits for no one!

I was back to square one and by this time about 28 weeks pregnant. I knew I had to take matters into my own hands and at least document my own story so that maybe the next woman with Type 1 Diabetes who wants to become a mother or is already pregnant would not feel so alone. Here is what I have to say to you women: You are not alone, you can get through this and you can have a healthy baby.

I am not a doctor and am not going to attempt to give out medical advice. Every person with diabetes is different and every pregnancy is different. However, I can offer some encouragement and even some tips on how to get through it. Let’s face it, pregnancy is hard enough when you are a “normal” woman. Diabetes adds an extra layer of caution and attentiveness for nine months. If other people are blessed with a pancreas that operates on “autopilot” those of us with type 1 diabetes have to “manually steer” ours. When pregnant, the journey includes many hills, valleys and countless curves along the way. Yet, the challenges of pregnancy with Type 1 Diabetes are more than worth the prize at the end.  To be continued.

Post Script
Share your stories with me. As I continue to say, every pregnancy and every person with diabetes is different. These were my experiences but you will have your own unique experiences. Please write to me and let me know your own story. I would love to hear from you. Also, if you have Type 1 Diabetes and are hoping to become a mother, please contact me. My goal is to reach out other expectant mothers with Type 1 Diabetes. My wish is that the next woman who feels as frightened and alone as I did may be comforted by our stories.

This is the first entry in a series of four posts by Shelly Jensen.