Monday, April 21, 2014

Forever Changed

On April 10th, our lives changed forever as MJ was diagnosed with type 1 diabetes.


We were on spring break and having a wonderful time…we went to the aquarium on Monday and the zoo on Tuesday and he was acting perfectly normal.  On Wednesday when I got home from work Lisa (our nanny) mentioned that MJ was very thirsty all day and drinking a lot of water.  That night he woke up twice with an urgent need to urinate- very unusual for him.  He was whiny Thursday morning when I was leaving for work, begging me not to leave.  I assured him I would be home in a few hours and they had plans to go to the park and meet daddy for lunch.  When I got home Lisa reported that he was urinating a lot and very thirsty all day.  It was then that I heard the alarms sounding in my head -- these are classic early signs of diabetes. 


If you recall, Catelin was hospitalized in September for idiopathic ketotic HYPOglycemia (the complete opposite of diabetes) so I happen to have an Accu Check machine at home.  I raced up the stairs and pulled it out of our medical supply kit.  Please God, let his blood sugar be normal.  Please, please, please. My heart raced and my hands shook as I tried to calmly prick his finger.  And then the meter (which reads up to a blood sugar of 500, anything higher than that just reads “hi”) popped up with the reading I feared the most – “HI.”

Panic started to settle in.  No, God.  Please, NO! I washed his hands and checked it again.  It read “HI” immediately.  Maybe it’s not working properly; we haven’t used it in months.  Let me check my blood sugar. I checked mine, it read 100.  NO!!!!!! Still in denial, I tested MJ two more times …“HI.”.  I called Steve – honey, we have to take MJ to the ER right now.  His blood sugar is critically high.  I was sobbing, Steve was trying to keep me calm- he would be home in a few minutes.


MJ didn’t understand why we had to go to the hospital.  “I’m not sick, mommy.  Look at me, I’m playing.”   On the way to the ER I tried to think of any other possibilities but the truth was there was only one: our most precious child has type 1 diabetes.  The ER staff was incredible and whisked us back to the room quickly.  They drew blood and confirmed my fear – yes, he has new onset type 1 diabetes.  There is no family history of it on either side… Shock.  Disbelief.  Sadness.  The ER doctor said some comforting words including that we caught it very early- he was not in DKA (diabetic ketoacidosis) and the rest of his labs look great.  We just needed to get him on insulin. 

The next two days were a whirlwind of insulin shots, finger pricks, tears, diabetes education classes, more tears, nutrition classes, and more.  MJ told me on Friday that he needed to get out of the hospital so he could stop getting all of these shots.  My heart broke – I’m so sorry baby but even when we get home you are going to need those shots.  “Forever??!” He asked.  Yes, honey.  Forever.  “Even when I’m a grown up??”  Yes, even when you are a grown up.  And then more tears, more heart break.


I listened as the diabetic educators talked about him going back to school- how we would need a plan for checking his blood sugars before meals and physical activity.  Who will be administering the insulin at school?  Who will be monitoring him?  Everyone involved in his care has to know how to take care of him.  They need to know the signs of both hypo and hyperglycemia (low and high blood sugars).  If he has to go on a field trip, someone trained must go with him.  I kept thinking but he is FIVE!  He should be able to drink juice and eat cupcakes and go on field trips without having to worry about carb counting and insulin shots!  Frustration.  Anger.  More tears.  Why MJ?  Why now?



We were discharged from the hospital late Saturday afternoon and had to learn to quickly adjust to our “new normal.”  I will say this about MJ – he is AMAZING in every way.  Just amazing.  I can’t imagine being 5 and adjusting to a life where you have to watch every single thing you eat or drink.  He has embraced it with such a positive attitude.  We went on our usual Waffle House outing on Sunday morning where he announced, “I have diabetes and have to watch my carbs!”  So, sugar free syrup and unsweet tea with Splenda were added to our new menu.


He is doing great with the finger pricks- they really don’t bother him any more.  And the insulin injections are also getting much easier.  He loves to have an audience and show how brave he is.  We were over at my brother-in-law’s house on Sunday evening and he asked everyone if they wanted to watch him get a shot.  And they were all very impressed with how well he did. 

I made a diabetes kit for school and Steve and I met with his principal, vice principal, teachers and school nurses that Monday.  They were incredibly supportive – so much so that he was able to go back to school the following day.  I went over during lunch and taught them how to use his Novolog flex pens and count the carbs in his lunch to adjust his insulin.

Steve has been my rock; to say this has been overwhelming would be a gross understatement.  I saw incredible sadness in Steve’s eyes the other night, and as if he was reading my mind he said “I think I am taking this harder than I did when we found out Catelin needed surgery.”  This time it is different – as awful as that time was with Catelin, we knew that once she got through the surgery she would be ok.  But this?  Well, type 1 diabetes is forever.  His life – our lives - are forever changed. 


I know this – the world is a better place because MJ is in it.  So, we will deal with our new reality and keep that light shining because this boy … well, he is really someone special.


  1. Love this post Jules. I had tears in my eyes as I read it, but I also smiled at MJ's bravery and the way he handled everything. He really is a special, special boy. Love to all of you!

  2. I ran across your site doing a search on Google. First, great post. Thank you for sharing, your story.
    Second, there is so much support our there. If you don't already know about the Children with Diabetes site: check it out.
    Also, Leighann Calentine has a great book "Kids First, Diabetes Second" and is the author of the D-Mom Blog:
    These should be very good resources for you.
    FYI: I work in the diabetes care industry and I know a lot resources and communities (online and offline) that can help. Please don't hesitate to reach out. I know it can be overwhelming, but there is lots of help and support out there.
    Bless you, MJ and your whole family.

  3. So much love to you and yours. xoxo, Kimberly

  4. Hi! I came across your blog because of your mention of my book, Hot Rod Hamster. First, great job on the costume!!! I loved it! Second, as a mom who has a son with autism, I know that it is hard to see your child go through testing and deal with new realities. If you think MJ would like it, we have a new Hot Rod Hamster book called Hot Rod Hamster Monster Truck Mania that came out last month, and I'd be happy to sign and send him one as a surprise for being brave. I'd just need an address to mail it to. Best wishes to your whole family! Cynthia Lord

  5. Tears… MJ is amazing. I love you, Jules, and your precious family.