Motherhood is a sweet journey filled with ups and downs. Being the mother of a child with T1D can be even sweeter (sometimes too sweet for the liking), filled with “highs” and “lows,” but it never goes unrewarded. Let me share my story.

My name is Noor. I was diagnosed with T1D 19 years ago, just before my 6^th birthday. My journey with diabetes started like so many others’: filled with confusion, uncertainty, and a feeling of helplessness. Yet when I looked into my mother’s eyes never once did I see any of these things. She always wore a big smile and told me “Be strong. Everything is going to be ok. God only tests the people he loves and will never give you more than you can handle.” As a six year old these words contradicted the definition of diabetes. How was I going to eat cake at birthday parties? How am I going to take shots? What are carbs? Can I play in the park with the other kids? And the biggest one: am I ever going to be able to get married, have a Cinderella-style fairy tale wedding, have kids, and live happily ever after? Every time I looked into my mother’s eyes and saw the strength she had and how calm she remained, it made me think “if my mom’s ok with it maybe it’s not as bad as I am making it in my head.”

The next seven years sailed by smoothly achieving target HBA1Cs. A lot of the credit goes to my mom for being my 24/7 personal Endo (without ever going to med school. Moms, this is one more thing to be proud of!). Little did I know it was all going to go downhill from there. Being a teenager is in itself a challenge, but when you add diabetes to the mix, you get a whole other level of crazy. At 14, I rebelled in a way that my now-adult mind still cannot comprehend. I was hospitalized twice for severe Ketoacidosis and once in a Hypo diabetic coma for five days (by the way you do not hear anything anybody says while you are in a coma; it’s just a verrrrry long beauty sleep). Those are just three of my many bad encounters with diabetes as a result of my invincible teen mentality, not to mention the endless fights with my parents about how I handled my health. In my senior year of high school I got accepted to my dream school UCLA, but due to the fact that the dark years were not yet over my parents did not allow me to go. They could not stand the idea of sending me on my own 16 hours (by plane) away from home knowing I was hanging by a thread. I resented them for years, and only recently I realized that if I were in their situation I would have done nothing different. Many mothers have asked me was there anything my mother could have said or done that would have changed my mind. My answer is always the same: “No”. In retrospect, knowing what I know today this “simple” answer shatters my heart and brings tears to my eyes. I know now that behind the brave face my mom kept was fear. Behind her glowing eyes were dark circles from many sleepless nights. And that the glaze in her eyes were tears that had not dried up from living in fear everyday wondering if I am going to wake up the next day.

Finally, in my freshman year of college, when all those hormones started to settle down and allowed me to think much clearer, a light went off in my head and changed things. I wanted to be “normal” again; I wanted to gain my parents trust. And most of all,I wanted my mom as my best friend—not my sworn nemeses that my out-of-control diabetes has turned her into. But I did not know how to do that. My mom held my hand through the next phase, my best phase, and took me to a diabetes conference in Orlando where I discovered I was not alone. With all that support I learnt how to make things right again. Going from HBA1Cs of 13 to 6.5 was a challenge both physically and emotionally. My body had gotten so used to high blood sugars, that this was my norm. Bringing my sugar levels down to even the high 100s made my body feel like I was at 35mg/dl. Eventually that feeling went away and I have never felt better. I became healthier than most of my “healthy” friends, I was more aware of what was happening inside my body, and best of all—my mom became my best friend again.

Last year I married my soul mate, in an out-of-this-world wedding ceremony (beat that Cinderella!). He seems to believe that all our fights are a result of low blood sugar crankiness, but that is a story for another time. I looked at my mom before I walked down the aisle and saw her cry for the first time ever as she told me how proud she is of me and how she wished this journey was easier but still she wouldn’t change a t hing because it made me a stronger, better person. The smile on her face was very different from the smile she had in the doctor’s office 19 years ago, it was one of pure joy. That is when I realized I had made the best decision to take care of myself. In case you are wondering, yes she made me check my blood sugar before walking down the aisle and what do you know? I was low. I spent my last moments before becoming a Mrs. trying to chug down mango juice without spilling it on my white dress or ruining my makeup, every girls dream scenario right?

So on this Mother’s Day, I want to take this opportunity to thank my mom and all the moms out there who deal with the daily struggles of having children with T1D. Take a look at your child sitting next to you smiling or frowning (most likely due to a low, high, or just doing their job at being a teen) give yourself a big pat on the back—you are doing the best you can and deep down inside whether we like to admit it or not we know that behind every “Did you check your blood sugar?” is an “I love you and want you to be safe.” You always reassure us and let us always know that we can do anything we set our minds to and that diabetes can’t get in the way of our dreams. Lastly don’t forget you are awesome, you made the sweetest kids! Happy Mother’s Day!

We recently caught up with Tonya and had a chance to find out more about this generous, and totally unexpected, gift.

Carb DM: Congratulations on being named the 2012 Synopsys Community Champion. The award cites your leadership in company-wide volunteer work as well as your liaison role between Synopsys and various non-profits. It sounds like your activism truly benefits the greater community.

Tonya: It’s true that I’m very active as a volunteer—both inside the company and in the community. Although my family is unable to make the monetary donations I wish I could, I strongly believe in giving my time and services to organizations that are helping those in need.

Carb DM: I understand that part of the Community Champion Award is the opportunity to give money to an organization of your choice.

Tonya: I work for a wonderful company. When Synopsys makes this award, it lets the recipient—me, in this case—designate a non-profit organization to receive $1500.

Carb DM: How did you discover Carb DM?

Tonya: At the end of August, my son, AJ, was diagnosed with Type 1 diabetes. It’s all really very new to us. I read a lot of articles, and I see what’s going on. But AJ is just 14 and it’s a huge life changer for him. Though he’s managing well, he’s still really frustrated—about having to give himself shots, for instance, and having to watch everything he eats. I found Carb DM when I went looking for a Type 1 group for teens.

Carb DM: What’s special for you about Carb DM?

Tonya: I like the idea of activities for teens, like Movie Night. It’s a great way for teens to collaborate and have fun with others going through the same thing. The teen stage can be a challenge by itself, so having a support group to assist with emotions seems essential for a teen with diabetes. Having a support group for parents with a Type 1 child is also a great help.

Carb DM: You’re active with other non-profits. What made you decide to designate your award money for Carb DM?

 Tonya: At this point in our lives, our every wish is for a cure for diabetes. So naturally I’ve become passionate about the American Diabetes Association. But meanwhile, we need to do things locally and on a day-by-day basis. Carb DM provides a service and support to families like ours—just by being there. I want to help it continue to do so.

Unlike presidential campaigns, no one will be waving banners and shouting “Four more years! Four more years!” at the top of their lungs.

Having diabetes is not something Tia complains about almost at all. We have been fortunate to surround ourselves with amazing people and experience many unique opportunities that we would not have had if it weren’t for Tia’s diabetes. She doesn’t feel punished by her diabetes, but it is definitely a burden she would love to shed. 

Tia continues to impress me with her positive attitude. This past week she took a “pump vacation” much to my dismay. But the positive side of it was to see how comfortable she is going back on shots. She  calculated her insulin doses the old fashion way (we did use the pump on occasion!) and gave herself shots anytime anywhere. Even in the middle of the night, she woke up and gave herself a shot rather than let me give it to her. She didn’t even complain about the sting of Lantus like she use to.

Unlike previous years, this year’s dia-birthday will be a low-key event. All she asked for was cheese ravioli for dinner and an Angel Food Cake for dessert. Pretty simple.

Now that we have a Supreme Court Justice with type 1 diabetes, isn’t it time we had a president with T1D too?

Stay tuned for Tia in 2036!

From the moment our children are born, we know that they will grow up to be adults. That one day they will have children that will drive them crazy like they drive us crazy. That they will have to work and worry about all the things adults worry about and kids don’t. What none of us plan for our children is that they will be burdened by the complex task of managing a chronic condition like diabetes.

We don’t plan on them having to deal with it as an adult, and we certainly don’t plan on them having to deal with it as a child. Yet when a child is diagnosed with diabetes, no matter how much the parents take on, there is still a fair amount of responsibility placed on the child.

Anyone who lives with diabetes, or knows someone with diabetes, or has read any of my blogs, knows how incredibly difficult it is to manage diabetes. So why would a parent feel better knowing that one day all of that worry will fall solely to his child?

In my recent interview on NBC’s Today in the Bay I addressed that issue when talking about having to tag along with Tia when she goes Trick or Treating tonight. Many children her age can go alone with a group of friends, or with just one parent dragging behind. In our case, I would have to be that parent. It’s not that I don’t trust her to bolus for the candy she will undoubtedly eat. It’s not that I’m worried about her checking her blood sugar (I know she won’t). It’s that I know that there is a good chance that her blood sugar will drop as she’s running around carrying a heavy load of treats. The exercise and excitement can cause her to drop suddenly without her even feeling it.

I want to be there to make sure she’s okay if that happens. If her friends want to keep going from house to house, I want to make sure she’s not alone. I know she can handle it, but I don’t want her to have to think about it, just for this one night.

Yes, one day Tia will have to manage diabetes all by herself, and I will able to sleep “soundly” through the night. But just as no parent ever stops worrying about their child, I won’t either. And just because she won’t be in the next room doesn’t mean I won’t still wake up at night and wonder what her blood sugar is.  (I often have the urge to check my son when my Tia is away at diabetes camp!).

For now, I am grateful that she can “outsource the worrying” about diabetes and “just” worry about homework, friendships, and what to dress up for Halloween. But it’s no consolation for me to know that one day she will have to take full ownership of that worry.

Parents often feel so sad and guilty over their child’s diagnosis, that sound parenting gets cast aside and replaced by indulgence.

Parents often struggle to maintain a healthy balance and keep the focus on all the children in the family once they have a child with type 1 diabetes, or any chronic illness. (see my previous blog on “Our Invisible Children“). The other children in the family may feel left out, ignored, and resentful both toward their sick sibling and their parents.

And lastly, the stress of caring for a child with a chronic illness can introduce new tension into the couple relationship and jeopardize their relationship and the marriage. The statistics aren’t on our side, but how can we prevent our marriage from becoming a statistic?

These questions have been on my mind ever since that first conversation two years ago.  I have been searching for the right person to teach and facilitate a three-part workshop on family dynamics when raising a child with a chronic illness. I have met many great people in my search and found excellent speakers on other topics, but it wasn’t until about six months ago that it all came together.

I am thrilled to announce that this November Carb DM and Parent’s Place are co-sponsoring a three-part workshop titled: “Raising a Child with a Chronic Illness: Navigating Family Dynamics in the ‘New Normal’”

Mimi Ezray, Parent’s Place’s director of special needs will be facilitating the workshop along with myself. Parents of children with all chronic illnesses, not just type 1 diabetes, are invited to attend.

Dates & Times: November 8, 15, 29; 7 – 9 pm

Location: Parent’s Place, 200 Channing Avenue, Palo Alto

Cost: $30 per session; $90 for the entire series. Spouse or significant other: $75 for the series.

Register online at Parent’s Place Online. If you are registering as a couple and would like to receive the discount, please call to register: 650 688 3040.

On November 10 and 11, Carb DM will mark National Diabetes Awareness Month and World Diabetes Day with two Bay Area screenings of DxONE (diagnosis: type 1 diabetes).

DxONE is an 18 minute film written and directed by filmmaker and type 1 dad Dan Masucci about his family’s coping and coming to terms with his son’s diagnosis with type 1 diabetes.

Dan and his son Nick, who stars in the movie, will be coming out from New York to be present at these exclusive screenings. A panel discussion with them and other members of the T1D community will follow both screenings.

Why are we doing this?

Usually when I’m asked how Tia is doing, I go into a long explanation (rant?) about how every day is an adventure; no two days are ever alike; and how unpredictable and challenging it is to manage diabetes. I do this not because I’m complaining, but because I feel that it is in some way my duty to educate people about how complicated type 1 diabetes truly is.

To so many people T1D is an invisible disease. You press a few buttons and it’s all taken care of, right? Wrong!

Our hope is that these screenings will provide those of us living with type 1 diabetes an opportunity to invite our friends and family to get a glimpse of our lives without making us sound like constant complainers. Viewing this film will help people understand how traumatic it is for a parent to receive the news that their child was diagnosed with T1D. And although it isn’t cancer, as we are so often consoled, it is terrifying to live with the constant fear of low blood sugars and the burden of trying to prevent and fear of long-term complications.

I urge you to invite everyone who is close to you and your child to attend one of these two screenings: Parents of your child’s friends and classmates, their teachers, and school nurses; members of your extended family and support system: grandparents, neighbors, babysitters; and everyone who comes out to support your fundraising efforts and walks on your walk team.

This is our opportunity to be seen, heard, and hopefully understood!

You can learn more about the movie at DxOneDiabetes.com and watch a trailer of the movie.

Tickets Now On Sale:

Saturday, November 10, 3 – 5 pm, Bluelight Cinemas, Cupertino.

Sunday, November 11, 3 -5 pm, Delancey Street Theater, San Francisco.

A few months ago when they were on vacation, his pump broke. She was freaking out because she realized she didn’t remember his pump settings and his insulin-to-carb ratios. She also hadn’t brought along long-acting insulin. There was a lot to be stressed about. But the only one stressing was her, not her 14 year old son who has diabetes.

The friends she was staying with thought something was wrong with that picture. Surely he should be the one freaking out, not his mom. After all, it is *his* diabetes.

A couple weeks later, she was lamenting to another friend about her son’s diabetes, and she too told her that she’s doing it all wrong: he’s 14, he’s going into high school, he’s going to be leaving for college in four years, it’s time he took responsibility for his diabetes!

If you think of diabetes like a chore such as laundry, or taking care of the dog, or cleaning your room, then it makes perfect sense. Not only is he 14 and becoming independent in all other aspects of his life, but he’s also been living with diabetes for eight years. Shouldn’t he know all there is to know about diabetes by now? Shouldn’t he be the one managing it?!

If you ask me, the answer is no. Diabetes isn’t merely a chore, it’s a full time job.

• Would you expect your 14 year old to get a job and work at it 24/7 in addition to everything else they have on their plate such as school, sports, band, and social relationships?
• Would you expect your 14 year old to make life and death decisions 10 times a day, every day?
• There’s a reason 14 year old’s can’t drink, drive, or vote. They aren’t capable of taking on that level of responsibility.

Diabetes requires us and our children to do just that: check blood sugars, count carbs, calculate insulin doses, and use good judgement 10 – 15 times a day. Every time our children want to eat something–anything–they have to check their blood sugar, calculate (or guess) the carbs, administer insulin, and use judgement in the event they are before exercise, after exercise, or in the middle of exercising. And when I say “exercise” that includes mental exercising such as studying, reading, or taking a test.

And if you’re eating complicated foods such as hamburgers, pizza, or milkshakes–what teen would ever eat anything like that?–then you need to give additional thought to how to administer insulin.

You also have to be very aware of and in touch with how you’re feeling–are you feeling high or low? Do you need to treat with extra insulin or extra carbs? Do you have all of your supplies on you at all times? If teens lose their iPhones, imagine how much attention they give to the blood glucose monitor

If you’re on a pump you also have to keep track of how many days it’s been since the last time you changed your site. 14 year old’s rarely know what end is up. Do you really think they can count to three?

So next time your friends judge you, or offer unsolicited advice, or try to otherwise explain to you that you’re doing it all wrong when it comes to your child’s diabetes, tell them kindly, but firmly, that until they’ve lived with diabetes for one full day, they should not be giving you or your child advice on how to live with it for the rest of their lives.

Watch this video to get the story of Carb DM and learn more about the work we do.

Do you support our cause? Do you share our vision to establish our own Type 1 Community Resource Center? If you do, join us as a volunteer, a participant, or a donor. Contact me at tamar@carbdm.org to discuss how you can get involved, or make your gift online today!