Special Needs Spotlight || Ella

Hi there! I am super excited to be part of the spotlight. We’ve followed along from the beginning, and I always learn something new. I am Alissa and  am mother to three fabulous girls (7, 4 and 1) and married to the love of my life. I am a Pediatrician by day (well, 2 days a week anyways) and momma by night (and those other 5 days). My darling Ella was was diagnosed with Type 1 Diabetes a few years ago, 2 years and 8 days ago, to be exact. We just celebrated her “diaversary.” Ella is the kind of kid all parents of a diabetic dream of… she is responsible, smart, observant, helpful, kind and an all-around good kid. She makes it all look easy. We are lucky to be along for the ride.

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Miggy: Well hello Alissa. We actually go back quite a ways as roommates from our college days–you’re one of the few people who knew me when I had pink hair! Additionally, you have been a huge support and help over the years as you are a pediatrician. You reached out right away when you heard I was pregnant with Lamp and you even gave me access to an article in the American Journal of Pediatrics that I eventually gave to our geneticist who confirmed, through this article, that our daughter most likely had microgastria and limb reduction complex! (Did you even know that?) Phew! That’s a lot of history. But today, we’re here to talk about your daughter Ella and her diagnosis with type 1 diabetes. Let’s start at the beginning, when did you start to see signs and symptoms that something was off with Ella? How long did it take for you to get an official diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Alissa: You not only had pink hair, but you rocked it LONG before anyone else even thought of it! A trendsetter from the early days. (insert Miggy: I’m blushing. Please continue…)

Ella was diagnosed in January of 2014 when she was 5-years-old. We were on a family vacation on the Big Island of Hawaii. After a few days of living in the same hotel room I noticed that she was getting up a few times in the night to go to the bathroom and she was drinking more water than usual. At her recent 5-year-old check-up we discovered that she had only gained a pound over the past year (in reality she had gained a normal amount of weight, but she had been losing weight for a month or so). We didn’t think too much of it, and I had actually packed cans of Pediasure to bulk her up. But the triad of weight loss, lots of drinks and lots of potty breaks made my pediatrician brain a little worried. On the second or third day of our trip it started to rain and our plans of exploring the island were shelved. Since we weren’t doing much, I decided to stop fretting and just make sure Ella was fine. I called the hotel doctor (did you know such a thing existed!?!) and arranged to test Ella’s urine at a local clinic. A few hours later the doctor called me and let me know that her urine had lots of sugar in it. I immediately knew she had Type 1 Diabetes. In that instant I was acutely aware that our life had changed. I knew enough about Type 1 to know what it meant for Ella and our family. I broke down and wept. But, in a gift from God, I was able to quickly snap out of it and was given clarity, peace and calm for the rest of the week. We immediately went to the small island hospital where they ran some confirmatory tests and officially diagnosed Ella with Type 1. We spent the night in the hospital, but because of my background they condensed our diabetes training from the typical week to a few hours and we were able to go home the next day. We were lucky that we caught Ella’s diabetes so early. Left untreated, Type 1 causes kids to get really, really, really sick. Thankfully, Ella never got to this point. With hindsight, however, we realized that she had lost her spark. During the months before her diagnosis she had been dull and emotional. One day she said, “Sometimes I try to have day where I don’t whine, cry or fuss AT ALL. And then I cry and I think, ‘Maybe tomorrow’s the day.”  The poor girl was trying so hard to be good, but her blood sugar was all over the place and she felt crummy!  Within hours of being out of the hospital and back to the hotel Ella was swimming and laughing and there was literally a twinkle in her eye.

I actually think I dealt with the Type 1 better early on. I was cheery, gung-ho and all “save the pancreas!” As time goes on, and the reality of every single day becomes more clear, I’m a little more down on it. Initially I was convinced that we would have a cure, or at least major major advances, by the time Ella is a teenager. I now know that diabetics have been promised a cure within 5-10  years for the last 30 years and I’m less optimistic. But the advances in technology and the way we manage diabetes has definitely improved. And that makes quality of life worlds easier. So I guess my feelings on it now are more realistic with the long haul in mind.

Miggy: As you stated in your email there is a lot of misconceptions about type 1 diabetes. Can you educate us about type 1 diabetes (as opposed to type 2)? Could you also explain how type 1 diabetes affects Ella and your family’s day-to-day life?

Alissa: Type 1 Diabetes is an auto-immune disease. For some unknown reason (probably a combination of genetics and a triggering event, maybe a virus) the body gets confused and starts attacking the cells in the pancreas. This leads to the destruction of beta cells, the cells that make insulin. Insulin is the key player in digesting carbohydrates (sugars) and allowing the cells to use it for energy. Because the body doesn’t make enough insulin, you have to give it via a small injection.

Type 1 typically presents in childhood, although it can show up in adults. Signs of Type 1 are weight loss, being thirsty and drinking lots, urinating frequently and/or having accidents at night, fatigue, sudden vision changes, increased appetite, fruity, sweet, or wine-like odor on breath, labored breathing, vomiting, and unconsciousness (obviously, a late sign). Testing for Type 1 is super easy. All you need is a urine sample. So if you are even kind of worried about your child, just get them tested.

Of the 29 million people in America who have diabetes only 5% have Type 1. Given that they are both usually just called “diabetes” it’s inevitable that there will be some confusion. While the two are related, they are very different.  This can sometimes get annoying. (Check out Type 1 Nick Jonas’ response to someone getting the two confused here) When I asked Ella what she wished people knew about Type 1 she said, “It’s okay for me to eat sugar. And you don’t get Type 1 because you ate too much sugar!” Ella can eat whatever she wants. Cake, candy, ice cream…bring it on. But every morsel of food that goes in her mouth needs to be accounted for. And that’s where it affects our day to day life. The pancreas is an amazing beast. It figures out how many carbs are in whatever you are eating and gives you enough insulin to cover it. If you are fasting or being active and you use up all your glucose, it taps into a supply in your liver and keeps things in check so you don’t pass out.  Since Ella’s pancreas is a dud we try our best to do its job. We weigh food, calculate and make lots of guesses to figure out how many carbs are in everything she eats. Then we (well, it used to be we—now it’s her pump) calculate how much insulin she needs for that amount of food. Her insulin pump has a teeny tiny tube inserted into her stomach that we swap out every 3 days. She also has a cool device on her leg that keeps tabs on her sugar at all times. We change that one every 6 days. She still has to check her sugar 1-2 times on a good day, 10-12 on a bad day. But she’s got sweet calluses on her fingers so it doesn’t hurt that much.  

For the most part, Ella leads an incredibly normal life. She plays the piano, does gymnastics, and loves playing with her sisters and friends. She is smart as a whip and is in a Chinese-immersion program at school. We’ve helped educate her teachers on how to help with her diabetes, and she has a helper at lunch who makes sure she checks her sugar and gives herself the correct amount of carbs the food she will eat.

Miggy: What are the biggest worries you face for Ella? Conversely, what are your hopes and dreams for Ella?    

Alissa: Oh, the worries. It’s part of my training to always default to the worst-case scenario, which is a blessing and a curse. Every time she is away from me I worry that her glucose will drop and she will have a seizure, or worse. This makes it tricky when she wants to do normal 7-year-old things. Any time she goes to a new friend’s house, or does a new activity or sport I have to decide how crazy I want to sound when educating the adults on diabetes. I vacillate between, “If you mess this up she could die! Be really really careful!” and “It’s no big deal, just treat her like you treat everyone else.” I’m learning to walk the middle ground. Every night I worry she will go low. One of the rare complications of Type 1 is going really low during the night and never waking up. It terrifies me. We now have a monitoring system in place so if she is out of whack I will get an alert on my phone. But I still check on her nearly every night.

On a broader scale, I worry about the long-term health effects of diabetes. We try really hard to manage her sugars well, but we aren’t perfect. While we hope for a cure, and research is promising, currently this is a life-long disease. I also worry (well, not really worry, but think about) the fact that she will always need good access to health care.

I have the same hopes and dreams that I have for my other girls. I want her to grow up healthy and happy. I want her to find love, be kind, be successful in whatever brings her joy. I want her to have healthy pregnancies and bring me grandbabies (far, far, far in the future, of course).

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Alissa: When Ella gets low, she gets grumpy and emotional. Once, a few months after diagnosis, we were at a family party and she came in weepy. I thought she was just being whiney and said, “Ella, you are acting like you are 40 and you are not! Pull it together!” We checked her sugar and she was 36 (which is crazy crazy low). She reminds me of that one from time to time…

The whole family gets in on the carb counting act, which can make us look like super health nerds. The other day we were waiting to get my oil changed and my 4-year-old was playing with an app on my phone that tells you how many carbs are things. “Mom! There are 15 carbs in half a bagel! There are 5 carbs in a cup of green beans!” The nice lady next to us thought we were cuckoo.

Miggy: Type 1 diabetes is not super visible as far as a condition goes (yes there is a pump, but from what I have seen this is usually under clothing) and as you said above there is a lot of misconception about it. How can people best approach or respond to Ella and her diagnosis? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Alissa: Ella and I differ on this one. I want people to ask questions so we can have a conversation. Ella just wishes people would ignore it and treat her the same as everyone else. When kids ask her about her pump (they often think it’s a cell phone), or what having diabetes means her stock answer is, “I have diabetes. My pancreas doesn’t work. It’s complicated.”

When I am leaving Ella with a new adult and they find out she has diabetes, they occasionally go white in the face have fear in their eyes. I love it when people ask me to explain what diabetes means for Ella and for them while she’s in their care. I worry that Ella will be excluded from things because people are afraid of the Type 1 (this hasn’t happened, as far as I know. Just mom worries).

Miggy: Since you are both a mom and a physician, if you could say something to another mom who is just starting on this journey of type 1 diabetes, what would you say?  What would you say to yourself if you could go back in time?    

Alissa: You will have days and weeks where you manage it with the greatest of ease and can conquer the world. You will have days and weeks where you are drowning and want to curl up in a ball and hide. Both kinds of days come and go. Don’t let the hard days overwhelm you. Ups and downs are what this life is all about. You’ve got this. And by no means is it all bad. Since Ella’s diagnosis we have become tighter as a family. Ella has become incredibly responsible. Even if we could give Ella her pancreas back, I’m not sure we would. (Eh, that’s not true. We would. But I wouldn’t give up all the things we’ve gained and learned).

Miggy: What is the biggest lesson you’ve learned since becoming a type-1 diabetes mom?

Alissa: Empathy. Every day when I go to work I take care of sick kids and worried families. I now do it with more kindness and understanding and patience. Life is hard for everyone. For some the hard is easy to see, and for others it is not as visible. But for the most part, everyone is just trying their best and can almost always use a helping hand or a kind word.

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Alissa, this was fantastic! Thank you so much–it’s always fun to interview someone I know in real life. First, I loved your honesty… knowing that your daughter has type 1 diabetes and then dealing with that day in and day out are 2 different things. Not to mention that as of right now, this is a life-long condition. That is no small thing. And I was surprised (maybe even relieved?) to hear that managing type 1 diabetes can sometimes be tricky EVEN IF YOU’RE A DOCTOR. That will be so great for so many mama’s to hear! And yes to empathy and seeing the world in a more gentle light…the world needs more empathy. Thanks for a fantastic spotlight and for sharing your sweet Ella girl with us. Give everyone a hug from Auntie Miggy for me! (haha–Wink.)

Thanks everyone for all your love and support! I’m always so grateful for people reaching out and sharing their stories…there is so much tho learn from each other’s experiences. So please if you or someone you know would like to share your special needs journey please email me at thislittlemiggy at gmail dot com.

Have a great weekend!