A Blessing and A Curse, No. 2: Mothering with Type 1 Diabetes

In this second installment of the interview series, it is my pleasure to welcome Cheryl, who I met on Facebook through our mutual friend Justine of Full Belly Sisters. Though I initially intended to focus on physical disabilities, I decided to expand my scope after learning that Cheryl has Type 1 Diabetes. Managing a medical condition in the midst of the busy work of parenting is a significant challenge, and maybe more so than a physical disability! 
Cheryl, with her husband Brandon and sons, Brett, Ian and yet-to-be-born Troy
I am a 33 year old wife to my husband Brandon and mom of three wonderful boys- Brett (6), Ian (3) and Troy (6 weeks). We live in Valencia, California which is about 40 miles north of Los Angeles.  Being a full-time mom is my favorite job, but I do share it with my full-time working job at Medtronic Diabetes.  Medtronic is the manufacturer of the insulin pump (more to come on that later). I am a training and education specialist which means I work to develop programs that educate physicians on the insulin pump and continuous glucose monitoring.  When I am not at the office,  I am often at a ballfield, park, or activity with my rambunctious boys.  However, I do love to sneak away for a mani/pedi and a glass of wine with my fabulous girlfriends or steal a moment with my DVR to watch bad reality tv.

What is Type 1 Diabetes?

For people without diabetes, their bodies regulate blood sugar through the work of insulin, which is a hormone secreted from the pancreas.  For people living with Type 1 Diabetes our bodies no longer produce insulin and we must take it by injection, or in my case, via insulin pump.

On Pregnancy and Managing Type 1 Diabetes

I was diagnosed with Type 1 Diabetes when I was five years old and while my diabetes hasn’t caused me any physical limitations, (although diabetes can offer these for others) there is a unique dynamic to parenting with a medical condition.  This starts from the moment I find out I am pregnant.  It is imperative that I stay in perfect condition while pregnant to ensure that my baby develops correctly and has a healthy environment in which to dwell.  This is where the stress begins- which definitely feels funny to say because we moms know that is the tip of the iceberg and you will spend the rest of your life worrying about them- so I will say “added” stress.  I wear an insulin pump and have since I was 21.  I was hesitant to go on a pump and the only thing that really sealed it for me was being told that if I ever wanted to have babies I should definitely be on one, so now it was time to put that to the test.  I also wear a continuous glucose sensor as well and together these two devices make managing diabetes through pregnancy easier.  Wearing a pump and sensor does mean that I have two “sites” on my body; one is where my pump is infusing insulin into my body throughout the day and another where the sensor is detecting my glucose and sending that data over to the pump every five minutes.  My pump has a 23 inch thin tubing that connects it to my body. While I would never describe either as a “physical” disability because the control that I have with these two devices is amazing, there is a physical component to wearing a medical device externally.  

Balancing Parenting and Self-Care

The other side to all of this is my diet and exercise.  I do have to watch what I eat normally, but wearing a pump makes this much easier.  However when I am pregnant, I need to be extra careful, making sure to keep my diet in check so that my blood sugars remain in perfect control.
Whew! So now, I have had 3 successful pregnancies and delivered 3 healthy boys.  And this fortune is not lost on me because not so long ago it was difficult for women with Type 1 Diabetes to have children, but my team of doctors who see me CONSTANTLY have helped make these boys possible.  Being a mom means your kids come first and a big struggle is that they often do which means “where does mom fit in?”  Having diabetes means I have to check my blood sugars, eat when I need to, and I do at times have potentially scary low blood sugars.  But in the world of mommyhood sometimes these things are missed or I have to tell my boys that I need to take a break or eat a snack when perhaps I have just told them “nothing else till dinner.”  As a matter of fact it happened today, I made mac and cheese for my three year old and then needed to nurse my newborn.  Lo and behold, I forgot to eat and we ran errands.  I came home starving and ate (read: inhaled) some of the leftover mac and cheese.  Then Troy needed to be fed.  Long story short, I forgot to give myself the insulin I needed for the food I ate and upon dinner time I discovered that my blood sugars were way too high.  
Confronting the Risks


There are two tough parts to having diabetes. One is that in mothering, one tends to put themselves last and with diabetes, you really have to put yourself first.  What good are you as a mom if you are not healthy? There are several long term complications of diabetes- blindness, renal failure, loss of circulation- and those are scary things.  If you don’t manage your diabetes well, these are a very real reality.  
Another is that diabetes is on the rise- both Type 1 and Type 2.  Type 1 is described as autoimmune, usually called Juvenile Diabetes because most develop it before the age of 25.  This makes up 10% of the population of people with diabetes.  Type 2, or adult onset, makes up the other 90% and is the type more people are familiar with.  Type 2 has a genetic component but it also triggered by poor diet and not maintaining a healthy weight.  It’s very common for my kids to hear that someone’s grandparent died of diabetes, or that they had to have a limb amputated as a result of diabetes, and this can be scary for them.  They also ask if they will get diabetes (my children have a less than 5% chance of developing diabetes).  It’s a tough thing to teach young kids about when there is a lot of negative media coverage around diabetes.

Understanding and Empathy

A huge positive is how normal they think it is!  I love that they know about my pump and understand why I wear it.  I feel like that makes them more understanding of other people’s medical conditions.  I use it as a teaching tool all the time.  When they ask about someone’s wheelchair for example, I will tell them “just like mommy has her pump, they need their wheelchair to make them feel better.”  They usually say “oh, ok” and it seems to really make sense to them.  Recently in my sons’ youth group one of the mothers had a daughter diagnosed with Type 1 and she had come to talk to me.  She was understandably upset and my son saw her start to cry.  He came up and I explained the situation. With the most genuine smile he said “it’s ok, we have diabetes in our family and my mommy wears her pump and is super healthy!”  It was so sweet and I loved that he acknowledged the positives in it.  
The new big brothers!

The Burden of Diabetes and Stealing Cookies


I do find that as my sons get older I get concerned from time to time about them developing diabetes.  When they are sick or acting funny,  I have been known to take out my glucometer and check their blood sugars.  My six year old now cries when he is sick because I am likely to poke him.  I also know as they get older I will have to teach them further about the disease and more of the scarier parts that could, even though I work hard to prevent them, happen to me.  I know they will learn more about it, or hear negative, ignorant comments such as “your mom has diabetes because she is fat,” or something to that extent.  While I have never had a low enough glucose  that I have not been able to treat it, it can happen.  I know of so many stories of kids having to call 911 for their parents with hypoglycemia and that is such an awful thought.  No parent wants to be a burden on their child, but having a medical condition makes me worry about that even more.
Right now the biggest struggle is hiding in the pantry, sneaking something sweet because my blood sugars are low and being caught.  Then comes the “No fair, why do you get a cookie and not me?!”  Now my blood sugars are low AND I am battling with a six year old over the “fairness” of a cookie!  
Thank you to Cheryl for her participation.  I learned so much about Type 1 Diabetes from this interview. If you’d like to know more about Type 1 and Type 1 Diabetes, here is some more information from the American Diabetes Association.  
For the first installment in this series, in which I interviewed my friend Candace about being a deaf mother, go here: http://realnani.blogspot.com/2014/05/a-blessing-and-curse-no-1.html
If you’d like to be interviewed for this series, just leave your contact info in the comments. Thanks! 


A Blessing and A Curse, No. 1: Mothering and Deafness

{Editor’s Note: A couple of years ago, I was offered the opportunity to write a piece on mothering with a disability for a major publication, but I froze and couldn’t write it. For a long time, I struggled to understand why I couldn’t write about myself as a deaf parent and I’ve settled on this explanation: I’m too close to it. My children are young, I’m a young mother still and I’m terrible at introspection. It takes me a long time to work my around to an understanding of myself. I often arrive at this understanding by talking to others, by reading the work of others and staring off into space while stuck in rush hour traffic on the way to nursery school drop-off. So, I’ve embarked on a mission to interview mothers with disabilities. Today, I offer the first in a series, by my Clarke School classmate and  friend, Candace. She is deaf like I am, and I found myself nodding emphatically and saying, “yes, yes, that’s it!!” while reading her answers to my questions while also considering things that had never occurred to me before. I hope you enjoy it. And if you or anyone you know would be willing to be interviewed, please let me know in the comments.}
Please share a little bit about yourself– where do you live? How many children do you have and how old are they? Who lives in your house? When you have a break from the physical work of mothering, what do you do with your time?
My name is Candace and I live in a suburb north of the city of Atlanta, with my partner of 12 years, Veikko. I have two children–Cassie, 6 years old and Vincent,  who is three. I am the only person who is deaf in my family. In between being a full-time mother and household manager I pursue my fleeting interests in anything crafty, sewing-related along with home remodeling projects, and lately, fish-keeping!
Of course, we all have some kind of limitation, physical or otherwise. But I’m really interested in looking at motherhood through the lens of physical disability. Can you tell us a little about your disability and how it affects the day to day work of being a mother?
I have been deaf since age 2 ½, after I contracted meningitis, and it was a total and complete loss from the beginning. I have had two cochlear implants and one is still active but I have not used it in any regular way since I was 15. I recently tried using it again last year and it has such a low ratio of information to noise that I just ended up with anxiety and headaches and irritability – quietness is nicer, especially with kids around!
[For more information on cochlear implants, go here]
I grew up speaking and using my cochlear implants, going to speech class and even a school for the deaf (Clarke School) that promoted lipreading and speech, but did not teach sign. My parents and siblings did not and still do not sign–we all speak to each other and I lipread.  After all these years,  it is second nature to me.  I really enjoy speaking and find it very convenient as well.  I enjoy spoken English and feel very connected to speaking as part of my linguistic culture.  I have a pretty ‘deaf’ voice though and my speech is not highly intelligible, so I can’t bank on it all the time with strangers so I often do write and type on my phone to clerks or shopkeepers. I can lipread pretty well and some people I can lipread pretty much at 100% right off the bat. But that brings me to my family’s communication situation – after all, being deaf is really a communication problem – my husband, who is hearing, exclusively signs to me! I simply cannot lipread him, even after 12 years together. A combination of his speech style plus his teeth and lips obscuring any tongue movement made it very difficult when we first began dating (and we wrote back and forth in a journal for weeks in the early days).  So he went and took two courses of ASL [American Sign Language]  and became conversational (though it’s stalled at conversational and never progressed to fluent despite my attempts to further teach him).  I can lipread Cassie very well and she was an excellent toddler signer and still can sign pretty well, but we rely a lot on speech.   Vincent is much less interested in signing and less dexterous, so he speaks a lot and I really struggle to understand him just like I do with his dad.  Sometimes it means I rely on my husband or Cassie to tell me what Vincent said in order to avoid frustration.  So that’s our sort of complicated communication setup and my hearing husband is pretty much the only one who signs regularly in this household.  
Other than the communication stuff, we have issues with the kids getting my attention or me missing something the kids are doing because I’m not able to hear the tell-tale signs of say, constantly running water in the bathroom or thumps indicating a fall.  I arrive at the scene late a lot, needless to  say! I just remind myself that plenty of parents miss things from being busy or on phone/listening to something, and even if I were there sooner,  its unlikely I could have entirely prevented the thing from happening. None of that stuff has really proven to be a huge deal and we just deal if a situation happens. Even when the children were babies I did not worry too much about being alerted to rush to to their every cry – I even eschewed using the table lamp cry detector that flashed each time a cry was detected…. it was very annoying.  I used my baby video monitor with a blinking indicator, for naps and bedtime, and the rest of the time I winged it, using my super-sensitive peripheral vision and mother’s intuition and checking in on things a lot.  When they were very small,  I used babywearing in the form of ring slings and back wrapping techniques to keep them on me and that gave me the ability to respond to things way before they reached crying – something I recommend to all moms,  deaf or not!  I also bed-shared with them for breastfeeding in the newborn phase and I didn’t have to worry about missing their wake-ups or relying on my husband to wake me to feed the baby.  It felt very simple when they were little ones. As they get older and are in their own beds, it is harder to catch things unless they wake me and my husband takes over more night-waking incidents simply because he doesn’t want to interrupt my sleep and he’s nice enough to go and check because he heard it.  I’m very lucky in that regard – I get to sleep through a lot of bedwetting and nightmare wakings!
What would you say is the hardest part of being a mother with a disability?  
Definitely the communication aspect of deafness in a hearing world is the biggest day-to-day frustration.  Communicating with CoDAs (Children of Deaf Adults) is never really an easy thing as I have spoken with other deaf mom friends who sign exclusively but still have issues understanding their child for a variety of reasons such as they sign sloppily and too fast or don’t know enough signs for their astronomically growing vocabulary. Having a hearing spouse also complicates things as well; the families that I know where both parents are deaf and both use ASL 100% of the time have kids with much better signing skills, and there is more cohesive family communication.  Even a friend of mine whose hearing spouse is a CoDA himself and also a professional interpreter can be seen speaking without signing to his children on occasion, or using his hearing ability to further decode the child’s speech if they are signing poorly, and just generally helping out with communication.  Switching between speaking and signing frequently seems to have some friction in all the transitions even though it makes things easier for the deaf person.
I also cannot listen to what the children are saying as I am doing something, and I quite literally feel like I have to rip my eyeballs from their verbose little mouths so I can cut their food without cutting myself, drive, watch a movie (with them), and whatnot.  I only have two eyes, and it really does get a bit frustrating when I have to look away for all of a nanosecond to stir a pot and I’ve missed  a really critical thing in their sentence and they start all over, or a kid is slapping my stomach to get my attention and tell me something and I cannot look away (or really just don’t want to at that very second).  I know some moms complain they have to listen to their kids talk the whole time they do stuff but at least moms who can hear can keep their eyes on another task at hand!  I am practicing training my eyeballs to work independently of each other!
I also have communication difficulties related to things such as getting on with school teachers and preschool directors or pediatricians and the like.  I can’t easily make small talk and tell them snippets and work in information smoothly and both sides have to work a lot harder to get information across, and develop rapport.  I have recently begun homeschooling Cassie for ‘first grade’ and feel a huge relief not having to worry about any more  issues with teachers, school staff or school functions. I hear this a lot from other deaf mom friends. They attend class parties and feel like all the kids are nervous around them, and other parents don’t try very hard to talk with them, and school functions like plays are not interpreted.  It’s also a little heartbreaking to not be able to communicate with my kids’ friends or my nieces and nephews. Even some of my deaf mom friends’ CoDA kids who do signing at home but in a very modified way (because hey, every family’s different) might not understand me when I try to sign to them.
All the challenges aside, what are some positive things you’ve noticed? For example, I think my being deaf has taught my girls to be sensitive to a person’s needs.
Being totally deaf means things are very quiet for me.  I get annoyed by thumps or feel touched out from the constant tapping and waving the kids do to get my attention but no shrieks or yells or hearing the actual whining voice (just that irksome face!). They can sing “what does the fox say” incessantly, play their electronic toys, watch weird YouTube music videos on the iPad and I am blissfully unbothered. I can hold a crying baby and yes, it bothers me and I can feel their stiff heaving body, but I’m not driven out of my mind with my hearing nerves being screeched to a pulp.  I can drive in the car without hearing any backseat bickering, bad kids music, or that incessant stream-of-consciousness talking-to-themselves thing little kids do!  
I also noticed my kids were able to put themselves in ‘my’ shoes just a little bit earlier and better than kids their age are supposed to developmentally. They can rephrase  their requests to make me understand, describing something in a variety of ways.  When Cassie was just 2 and a half,  she was able to tell me something like, “mom,  i want a fruit popsicle” and if I didn’t understand for some time, she could rephrase it almost entirely like “I want a red ice cold stick” and then I would go “AHA,” and then she would repeat her original request after realizing I was seeing what she was thinking, “a fruit popsicle!”  I loved seeing these kind of adaptations through the years. Vinny’s adaptation is that he easily knows how to ask for help from Cassie or Dad.  We have learned a lot of patience for each other with anything communication-related, and how to shrug it off if it is frustrating. Even though we encounter multiple points of communication dysfunction throughout the day,  every day,  we don’t let it break our stride. Cassie steps in, Vinny tries harder to move his mouth in a way I understand, tilting his head backwards so I can see his tongue more, I stop and clarify and repeat what I think I heard, Dad throws out a sign above Vinny’s head behind him. Whatever works – we try to make an effort to understand and help out.
Signing also has had positive things in itself! Cassie is my little signer and she loves doing spelling “tests” where I just finger-spell the word to her.  It has also helped with vocabulary as I can sign a synonym while saying an advanced vocabulary word and it totally clicks quickly and seamlessly as we read through a story or instructions.  I can also sign to her very discreetly in public or from across large distances without yelling, and talk freely in quiet or loud places.  I really do encourage everyone to learn some sign if just for this awesome superpower. Being able to sign to your kid sitting in the car outside while you’re waiting in line to pay for gas at  the convenience store – and finding out they want you to get them a drink? Very useful.
Let’s go a little deeper and talk about the dynamics of your relationship with your children, as far as your disability goes?  What have you noticed or learned as your child/ren gets older? How do you feel about this?
Not being able to understand my youngest son Vincent as well as I did Cassie when she was the same age has been painful as he really has had a language explosion this past year and I miss out on the complexity of his expression when someone  relays the shorter essence of his request or his thought. I am also often double-checking with Cassie or Veikko to see if I understood it all. I’ve learned not to react until I’m sure I understand – rigid preschoolers don’t like being given the wrong things or you cutting up food the wrong way as we mamas know!  He and I work on trying to be close in other ways through hugging and kissing and making funny faces at each other because he does get very frustrated that he feels I can’t handle his rambling speech easily but he has adapted.  He understands me far more than I understand him, so I try to keep my end of the conversation going at least and let him know I do want to communicate even if I can’t understand every word he says.  It’s still been difficult because as a typical boy he has a lot of boy ideas and rambunctious tendencies and I still don’t know how to deal with that after being a first-time mom to a girly-girl!    
As Cassie has gotten older, I find myself being careful in how I ask her to step in and help with any communication for me. I don’t want her to feel like an interpreter, I don’t want her to feel responsible for an outcome due to failed communication efforts in which she was a third party. I don’t want her to always feel obligated to relay a shopkeeper’s comments to me or anything, and I cringe when people are leaning in to her having a conversation with her that they would never have if they could talk to the adult freely.  I still don’t know how to quickly and not-too-rudely stop it when I see it going on.   I always try to make sure the adult knows that I am the one communicating, by initiating the communication at the outset and IF there’s a small word or phrase she can help with, I’ll ask very quickly for her to say only that part or clarify a word if we’re struggling.  I also try not to put undue responsibility on her to use her listening abilities – just because she can listen out for my name being called at an appointment doesn’t mean she needs the responsibility, at six year of age,  and she should be able to color without feeling anxious she might miss it called out, so I make arrangements like telling the clerk that  I am deaf and need someone to come directly to me to get me when it is my turn.  I try to be very judicious about utilizing her ability for my own purposes, but at the same time I don’t completely avoid it because we’re a family and we help each other and it is good to be needed and useful.  There’s a big difference between saying, “hey,  come tell me if the doorbell rings” and making her talk to whoever is at the door just because its easier.

Thank you, Candace, for sharing so much and so openly!