Will I ever sleep again?

My 3.5 month old slept from 7pm to 6am last night and while I’m thrilled he did that,  I can’t help but wonder if I’ll ever sleep through the night again.  I haven’t slept more than a four hour stretch in the last year and a half.  How can I sleep when the constant worry of blood sugar keeps me up at night? The fear and anxiety wakes me as does the alarm on Liam’s continuous glucose monitor. Even when Liam’s blood sugar is in range I still wake up to nervously check his status. It’s utterly exhausting. The few nights I’ve slept away from Liam I still can’t really get away.  I’ve texted my Dad and Mom at 3 am to check how he’s doing.  Even though they know what they’re doing,  I cannot escape my fear. 

I’ve heard it referred to as “dead in bed” syndrome.  This is when a diabetic dies in their sleep from an untreated low.  This is what haunts my nights and causes regular panic attacks. This can happen during the day, of course,  but I’m alert during the day,  watching his monitor regularly.  At night,  my greatest fear is that I’ll sleep through an alarm or his monitor will fail and we’ll miss a dangerous low.  

I’m a very imaginative person.  I have incredibly vivid dreams when I’m able to enter that state and I’ve imagined countless times finding my baby dead in his bed.  I’m sure most parents have had that image as well but my reality is that it really could happen if I falter. I cannot make mistakes,  I cannot waiver on my attention,  there is no room for error when my son’s life is at stake.  

Thank You

  
I’ve always admired my mother.  She’s an incredible woman who has accomplished so much.  She started her career as a teacher and worked her way through the ranks,  eventually becoming a superintendent of a school district in PA.  After retiring from the school district she transformed a small non-profit into a national organization that has made a difference for so many children living in poverty.  Her life’s work has been dedicated to improving the lives of children, but it wasn’t until I watched her care for my own child that I truly felt the depth of pride I now have towards her. 

My mother,  while a powerful,  influential woman,  was always a wimp when it came to blood.  If my brother or I hurt ourselves as children she would scream at the sight of it and nervously get our father,  a doctor,  to help.  She can be very dramatic when it comes to injuries and illness.  

Having a child with type one is challenging for many reasons,  but one of the biggest is the isolation.  So few people can be trusted to take care of our child.  So few truly understand our daily struggle and can alleviate it by helping us get away.   The learning curve is steep and for obvious reasons we wouldn’t leave Liam with anyone who wasn’t prepared to care for him.  

When Liam was first diagnosed,  my mom was at the hospital everyday.  She attended the classes that our hospital offered and in that first week offered to test him.  She expressed her desire to learn because not only does she love him but she loves us and wants to be a support to us.  She threw herself into learning all she could about diabetes despite her innate fear of blood and her nerves. She read books,  asked thoughtful questions and paid attention. She overcame her fears to care for her grandson and  I’ve never been more proud to call her my mother.  

We haven’t been away from Liam much in the last year,  but nearly every time we have,  it was because my mom took him.  In fact, as I’m writing this Seth and I are in NY for a weekend away,  the first weekend away in over a year.  It’s so important that a couple can have time away. My mom has given us that gift and it’s truly priceless. Thank you,  Mom.   

Diaversary: To Celebrate Or Not To Celebrate; Not Even A Question.

The first time I read the word Diaversary, I was immediately curious.  In one of the facebook groups I joined after Liam’s diagnosis,  Diapers and Diabetes,  someone had posted pictures of what looked like a birthday party and had the caption “happy Diaversary”. A Diaversary is the anniversary of diagnosis and as far as I know, exists primarily in the type one community.  People throw parties and celebrate. They invite their friends and eat cake.  Year after year,  they treat this day like a special anniversary of the day they were diagnosed and a reason to celebrate life. 

As Liam’s Diaversary approaches the last thing on my mind is celebrating.  It’s been a rough year and that day,  April 3rd,  marks the beginning of the darkest days my family has ever faced.  This is not a day I wish to commemorate with celebrations. Rather,  this is a day that I imagine will be a struggle. This will be a day I do my best to focus on the good and try to block out the trauma we experienced as we watched the love of our life struggle to survive.  This is the day that changed everything for us. 

Our experience on the day of diagnosis is very different from most.  Liam was so young at diagnosis while most children and adults who are diagnosed find out before they’re in crisis.  While I’m sure there is still some type of trauma associated with diagnosis, I doubt it is anywhere near the scare of full blown diabetic keto acidosis.  From what I’ve read,  often a parent takes their child to the doctor because the child is very thirsty and peeing often and the child verbalizes to the parent that they’re not feeling right.  The doctor tests the child’s blood sugar or draws blood and sends them to a hospital to learn how to care for their diabetes.  This does not involve an ICU or fear of a swelling brain.  This does not require the child to be hooked up to machines and have labs drawn every hour. It is a very different day indeed. 

I don’t pass judgement on anyone who feels the need to celebrate. Living with diabetes is a 24 hour battle and it’s important to recognize and applaud the work that is done to walk the blood sugar tightrope everyday.  I try to give myself and my husband a pat on the back when I remember,  when we’ve had a particularly good 12 hours or when we took Liam for a high carb meal and kept him steady because we made good decisions.  I do my best to give myself some slack once in a while.  And while I try to celebrate small victories,  there are just so many defeats.  Diabetes is stressful,  a constant source of worry,  and a palpable fear-causing disease.  The day Liam was diagnosed with this disease is not something I wish to celebrate now and maybe not ever. The day I will happily celebrate?  The day my baby is cured. 

  

 

 

The Math Behind Diabetes

It’s interesting that this math teacher, teacher of numbers, is now in a constant state of problem solving. I guess it’s lucky for Liam that his Mom is good with numbers, I can’t imagine how hard it must be for people with poor math skills having to manage Diabetes. Diabetes is a numbers game. How many grams of carbs? How much should this weigh according to the serving size? If I cut the serving size by 1/4 how many carbs? How many minutes do I pre-dose? What percentages do I use for a combo bolus? How much should I change the basal rate? It’s amazing how much math goes into just one day of managing diabetes.

My entire adult life has been riddled with and ruled by numbers. It’s ironic (don’t ya think?) that of all people to have a diabetic child, the numbers worshipper is chosen. That’s right, I love math. I love numbers. I love teaching my students practical methods they might someday use. Every year I have students ask me, “When will I actually use this?”. Since Liam’s diagnosis, my answer has evolved. I always had a good answer, I think. “You will use this in this way and that way and even if you don’t use the specific algorithm, you are learning how to problem solve and critically think about the world around you.” Now I add to that the idea that you never know what life will hand you and I tell students the truth about how I use math constantly. I regularly use proportions to figure out the grams I need to cover for Liam. I consistently calculate what percentages are appropriate depending on his current blood sugar. I am making decisions around the clock about how much more insulin to add to his system. I look for patterns on graphs and make decisions, use trial and error and guess and check to improve Liam’s Diabetes management.  And the list goes on.

Doing math around the clock can be exhausting, but in some ways it’s made me a better teacher. Aside from providing students with practical reasons to use math I can now connect with parents of children with special needs like I never could. I now understand the need to advocate for your child and I appreciate the parents who do so. I understand in greater depth the need to accommodate for these students because I’d demand the same for my child.  I can commiserate with these parents,  the struggles we’ve faced are similar and I have a very different perspective resulting from our experiences with diabetes. Simply put,  the struggle of being a parent with special needs is real, and now I get it. 

Life is full of twists and turns and I think how we adapt and interpret those changes makes us who we are.  It can feel impossible to find meaning and purpose in these life changing events but if you look at them in the right light it is possible to find some silver lining.  I am constantly trying to find the positive in all of this and while there are days I struggle,  there are more days I am grateful for the growth and perspective Liam’s diabetes has given me. 

Take Nothing For Granted

I never thought twice about feeding my child.  That’s not to say I didn’t take time to buy him organic food and cook nearly everything he ate,  but I never had to think about giving him the food.  If I made a delicious bowl of pasta I could stick a bowl in front of him and watch him happily devour the delicious carbs we so enjoyed eating.  Seth and I would laugh as Liam covered his face in my famous meat sauce. It was so carefree.  So different from what it is today. 

Now,  everyday is a battle.  A battle to walk the tight rope that is blood sugar.  A battle to find the right low carb recipes that Liam will love.  A battle to distract him a little while longer so the insulin has a chance to kick in.  There’s no room for thoughtlessness.  There’s no place for giving Liam a big bowl of pasta and letting him eat until his heart is content.  Nothing is effortless when it comes to feeding him. 

I imagine at any age diabetes is very hard to deal with but I can’t imagine an age harder than the toddler years.  He doesn’t understand that he needs to wait to eat and that he can’t just have the cupcake every other kid is eating at the party unless I dose him for it well ahead of time.  When toddlers set their sights on something,  they HAVE to have it IMMEDIATELY. When this desire isn’t met, enter meltdown city! I don’t think there’s anything wrong with making kids wait,  teaching them some patience and delayed gratification.  In fact,  there are studies that suggest that children who are made to wait for things tend to have higher IQs. So I guess we’ve got that going for us.  But why should he have to wait for every little bit of food?  

I watch strangers and friends alike give their kids food without a second thought and I can’t help but feel, at times, jealous, angry and sad that I can’t do the same.  It’s unfair that other kids can eat a cupcake at a party and not have to worry about how long before they took their insulin and stare at the glucose monitor in fear as their blood sugar soars from the cupcake no matter how long the insulin was in their system. I wish I didn’t feel the need to prepare Liam’s own cupcake to take to parties so he can have a treat with the rest of the kids.  I hate the overwhelming feeling of going to a restaurant and trying to figure out what we can order and asking the server exactly how long it will take to get to our table.  I’m that person asking for nutrition facts wherever I go and studying the labels to make sure I’ve got the carb count right.  

Before Liam was diagnosed I took for granted the idea of feeding him whatever he wanted when he wanted it.   Of course I did because why wouldn’t I?  And I don’t fault anyone for not thinking twice about feeding their own kid. It’s just interesting how perspective changes when life happens.  Things you never had to think about become something impossible to forget. 

  

Life of a Pancreas

In honor of Diabetes Awareness Month I’ve decided to finally follow the advice and encouragement of friends and family and start a blog, detailing my experiences and newfound wisdom of being a mother of a child with type one diabetes. I’ve decided to kick off my blog by sharing our life altering experience when Liam was initially diagnosed with Diabetes.

T1Y1: Type 1 Diabetes Year One. This is what my son is referred to at the hospital we now frequent at minimum every three months. At the ripe bold age of 14.5 months, Liam was diagnosed with type 1 diabetes. Parents of children like Liam, who are diagnosed so young, typically find out their child has diabetes once their child is already in crisis. That is how we found out Liam was diabetic.

For a few weeks, Liam seemed aggressively thirsty and started peeing more than usual, soaking through his pajamas at night. A friend of mine from college was type 1 and I had never forgotten his description of his own onset, and because of that I started questioning whether Liam had diabetes. People thought I was crazy. We had no family history on either side and it was ludicrous to think a healthy, organic eating, breast fed baby could possibly have something like diabetes. I still couldn’t shake the feeling I had.

Liam began to get sick from what we thought was a bad cold; I was sick myself so it made sense. When he became incredibly lethargic I took him to his pediatrician. I shared with her my suspicions of diabetes but instead of finger pricking him in the office, she ignored my concerns and tested him for strep. When he tested positive, she chalked it all up to that. She ordered him antibiotics and sent us home. That evening as Liam threw up all over me and seemed to be getting sicker and sicker our fears continued to grow. We continued to call the pediatrician who continued to reassure us that this was Strep. Strep is hard on a little body, they said. But we couldn’t shake the feeling that this was something more.

The next day, Liam began to breathe differently, a labored sort of breathing, and could barely keep his eyes open. We were so scared. Little did we know at that time that we were literally watching our baby fight for his life. Had we listened to the pediatrician when she said this was normal and not taken him to the Emergency Room when we did, who knows what would have happened. As I’ve expanded my diabetes network I have learned of stories of parents not taking their child to the hospital in time. Children can have some very, very serious complications from being in Diabetic Keto Acidosis (DKA) for too long. One child I read about had been so sick her brain stem herniated into her brain leaving her paralyzed and debilitated for the 6 months she survived. I’m so grateful that we made it to the hospital in time to avoid some of the complications that others have been less fortunate to experience.

Nothing prepares you for watching your baby struggle to live. As nurses attempted to get needle after needle into my completely dehydrated baby, my husband and I watched on completely helpless. It was the worst feeling in the world. Liam was in DKA, diabetic ketoacidosis, a potentially fatal condition. His body was struggling to remove the excess sugar in his blood. His PH level was 6.9, a level the body can only sustain for a short period of time. Had we not taken him to the hospital when we did, had we followed the doctor’s orders, I have a hard time thinking about what could have happened to him.

Nothing prepares you for a life changing diagnosis. I will never forget the moment the ER doctor uttered the words “onset diabetic”. Those words crushed me like a ton of bricks. The doctors told us we needed to be transported in an ambulance to a hospital better suited to care for Liam, and only one parent could go. I rode in the ambulance next to Liam, who was hooked up to a machine to deliver fluids and insulin, and held his tiny hand while he went in and out of consciousness. We arrived at the Children’s Hospital of Philadelphia, an institution we are incredibly lucky to live near. They brought us to the PICU and I held Liam throughout that very long first night in the hospital. Doctors told us they would need to bring Liam’s blood sugar down slowly in order to avoid swelling of the brain. Every hour on the dot, the nurses came in to finger prick him and draw labs. They wouldn’t let me nurse him and that is all he wanted to do. It was by far, the hardest night of my life. I slept for maybe 45 minutes that night, unable to sleep with him laying on me and nurses waking him to check his blood glucose level so frequently.

In the morning his levels started to get better and by that afternoon they moved us to the Endocrine floor where we would spend the next three days learning how to keep Liam alive. My husband and I learned how to draw blood to test for glucose levels and how to inject him with insulin. We learned how to determine how much insulin he needs based on his glucose level and carbohydrates consumed. We learned what could happen to him if his blood sugar dropped too low–our first class we were introduced to a syringe we would need to give him to avoid him going into a coma. We learned how to treat high blood sugar. It was a steep learning curve but we became near-experts on type 1 diabetes in a matter of days.

After that long week, my husband and I became Liam’s lifeline. We serve as his pancreas, making decisions all day long about how to manage his blood sugar. It is a 24 hour, 7 day a week job with no rest. We wake up nearly every night, at least once, to correct a high or give him a syringe of maple syrup to bring up a low. It’s an exhausting job but one that is more worth it than any other position I will ever have. Welcome to the life of a pancreas.