Our Story

Updated: Aug 11, 2020

Becoming the parent of a Type 1 Diabetic wasn't what I envision when I was pregnant with my first baby almost a decade ago.  But as we all know, parenting is full of surprises, mostly good but some bad. Our Beautiful baby girl Lyla Lynn was born on September 4th, 2010 in perfect health.  She proceeded through her next year of life hitting all of her milestones. She was the light of our life and we were so happy when she turned one year old, I remember actually thinking "wow, we kept her alive for an entire year... good for us!".

It was around her first birthday I begin to notice somethings that were completely and totally overlooked by her pediatrician.  And since she was my first child those instincts weren't screaming as loudly as they should have been. She began to drink water like crazy, she had wet diapers all the time and she was starting to look thin.  I assumed that this was normal she just liked water, her diapers are full because she likes water and she was turning into a toddler thats why her face began to thin out. All perfectly plausable explanations for her symptoms.  

Then around 13 months she begin to start striking food, she only wanted liquids and begin to breathe heavily. Then one day she threw up for the first time ever. I took her to an urgent care and got her vitals checked and she was perfectly fine. I put her to bed watched the Jersey Shore (don't judge me) and the next day my husband walked in from his 24 hour shift and said she didn't look right.  I called our doctor, took her right over. He looked at her and said she had a virus and told us to take her home to rest...

Thank you God that my husband, a paramedic, said "no way" and we drove her to the ER.  That memory is forever burned in my brain. I still have a very hard time writing about it even though its been nearly 8 years.  I try not to think about what if... what if we would have listened to that doctor? What if my husband would have ignored his instincts? What if...

When we arrived at the ER we waited for a while.  I will never forget that there was some sort of special day for the families of the people that worked at this particular hospital.  They were walking by us looking at us like we were animals in the zoo. It was strange, kids with painted faces having the best day ever and here we were literally about to experience our worst.

Finally when we got to see a doctor, the jerk had the audacity to tell us that she probably was a Type 1 diabetic within minutes of evaluating her.  WHAT?!? I pretty much wanted to punch that doctor right in his face. How could he tell a worried mother of a 13 month old that his diagnosis was that of a lifelong chronic illness with no evidence to back it up!

And then her blood sugar was 450.  For those of you who are not aware of normal blood sugar range, its typically 80-120.  She was in fact diabetic and she was in DKA (Diabetic Ketoacidosis). Translation- her body was breaking down fat as fuel rather than insulin causing ketones in the bloodstream which can be extremely dangerous and lead to death.  She was admitted to the PICU and started on fluids and insulin. Since she was very dehydrated they had a hard time getting a IV started and lets just say it was traumatic for all involved.

The next days and nights we spent worrying about what this had done to her little body?  Did it cause brain damage? How are we going to manage this? And what did we do to cause this?  I avoided the question of "why us" for obvious reasons. After three days holed up in a hospital room watching Tangled and Ellen with what was becoming a more active 1 year old we were very ready to blow that preverbal pop stand!  But now what?! How in the holy hell were we going to do this.

For us non-diabetics, we go through life eating and drinking as we please. No thought to what its actually doing to our body or rather how our body breaks down those carbohydrates.  If you have every taken a minute to think about how many times a day we put something in our mouths... well its a lot. And diabetics need to be given insulin for almost every interaction with food. Our world had changed, food was quite literally the center of our universe now and it was on us to manage our baby girls blood sugar to the absolute best of our ability.

A new vocabulary was thrust into our lives.  Humalog, Lantus, syringes, lancets, glucometer, glucagon, ketones, carb ratios... to name a few.  And of course they sent us home from the hospital with the wrong test strips and meter (that story is for another day).  I desperately wanted a guide book, "How to Manage a Type 1 Diabetic 13 Month Old Without Experiencing any Blood Sugar Lows or Highs."  I will save you the suspense, it turns out that it doesn't exist and also turns out that highs and lows are part of the roller coaster of diabetes.

We were sent home with ratio from our endocrinologist that that measured carbs/insulin.  You eat X amount of carbs you get X amount of insulin and then your blood sugar runs perfectly... WRONG!  Ratios are great and all but there is so much variance in how much insulin you give based on blood glucose levels, types of sugar, low glycemic index foods, high glycemic index foods and don't forget activity. And you have to remember, Lyla was 13 months old weighing 23lbs and we were using a syringe to dose .25 increments of insulin.  To this day I have no idea how we survived those first few months. If you think a newborn is exhausting try managing a 13 month old diabetic using a syringe and glucometer!

It took everything that my husband and I had to keep her living a somewhat normal life within a "normal" blood sugar range.  I will say that by the grace of God we worked as a cohesive team. We grew together as a couple and not apart as sometimes is the case for families dealing with chronic illness.  And by the end of the year we were pretty much killing it with blood sugar management. Lyla had one of the best A1C's that her endocrinologist had seen for a child her age and she seemed to growing and developing normally for a kid her age.  But as anyone who has managed a Type 1 diabetic knows, it's a marathon not a sprint. And this marathon doesn't have a finish line so every day is different. Two years into our journey with Type 1 we decided to finally get an insulin pump (Omnipod).  And never looked back! Now 8 years later she wears her Omnipod and Dexcom CGM and I am eternally grateful for the strides in technology that has helped us and her to live a more "normal" life.

Our Journey is coming up on eight years since diagnosis.  This is all Lyla knows and frankly its all we know as parents.  We now have 3 daughters. We do the absolute best to parent equally to all but we have to take extra special care of our Lyla.  I am opening our journey up in an effort to bring awareness to Type 1. I want people to understand it and understand the people who have it better.  I would also like to be the light to someone who has just entered the seemingly endless dark tunnel of Type 1.

What is Parentingtype1... well I am not totally sure but its mostly our journey with a very tricky and unique disease.  This is just an opportunity for me to share some of what we have learned along the way and how it has made us stronger as a family and as parents.  The parenting part is the easy part, its living with Type 1 thats hard. So I am just trying to shed some light on a disease that is often misunderstood.

Lyla was diagnosed with Type 1 Diabetes weeks after this photo was taken at 13 months old.
Lyla 2011 (12 Months Old)

#parentingtype1 #type1diabetes #autoimmunedisease

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