Diabetes is not a joke. Diabetes kills.

candleDiabetes is not a joke. Diabetes is not about weight or junk food.  This disease requires those living with it to walk a fine line…too much or too little insulin can have catastrophic ramifications. The fear is real and justified.  Diabetes kills. 

The article below was originally published on May 11, 2016.  It was exceptionally hard to write.  As a parent of a child with diabetes, we know that diabetes is deadly but we hope it will never kill one of our own.  When it does….well your world is shaken to the core and is never the same again. 

I think of this family daily.  I can only begin to imagine their pain and the pain of others who have also lost their loved ones to this disease.  We will never forget. We will continue to work towards a cure. 

In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow and a time during which we hug our loved ones a little closer. It is also a  time to test a little more often before we allow the memory to fade and we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page to verify what I had read.

blue-candleThere was  the blue candle.

My breathing stopped.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me and  I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  Instead I found an information email list, or so I thought but what I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  This incredible online community would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown and some of  our children have become parents themselves.  We have watched each other’s lives on Facebook and occasionally we wish each other well.

Other connections remain strong. We reach out regularly.  We have remained in contact and fondly look back on where we have been.

No matter whether we are close or drifted, when tragedy strikes we are all one big family again. One family united by pain–sobbing with each other.  A family holding each other in virtual hugs through real tears.

Tragedy isn’t supposed to hit us. Not a direct hit  like this one.  Diabetes in to supposed to take a child that we “knew” and watched grow but it has.  The pain is unbearable.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes but now there are two. Those are two too many.

I don’t want there to be any more.  There must be a cure.  People with diabetes deserve better access to treatments.  We need more awareness. We need more…

Those of us in the diabetes community  will continue to work harder. Some people will bike more while others will walk more. We will all advocate louder.

Our hope will remain.

We came together because of diabetes but we have stayed together because of  incredible friendships that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.

A Rollercoaster Weekend of Emotions

Last week, Children with Diabetes hosted Friends for Life 2015 in Orlando Florida.  This is the most amazing diabetes conference for families on earth.

It is an experience that can evoke a sea of emotions.  Those who get to experience a Friends for Life Conference will feel the love and support immediately.  They watch name tags and put real bodies to Facebook profile pictures and Twitter handles.  They will take part in sessions that allow them to share their feelings, learn new techniques and hear about amazing new developments.

Sarah Loebner summed the conference up perfectly when she sang her song “Do you want to be my FFL?” (Check it out here… https://youtu.be/yh1m997pWhw )

Those of us unable to attend the conference ourselves, enjoyed viewing pictures and reading posts about what was going on in Florida.  You could feel the love spilling over the internet.

On Saturday July 11th, the feelings of happiness were pushed away as a sadness enveloped the diabetes community.  Many people had been following the story of Kycie, a young girl who was misdiagnosed with the flu when in fact she had Type 1 diabetes.  She slipped into a coma and experienced very serious brain damage because of this oversight.  Her story and her progress had been shared by many people in the diabetes online community but on the 11t11738031_10153498655789451_1000286532184841248_nh, her parents posted that she had died in her father’s arms.

The news saddened everyone.  The need for doctors and parents to be aware of the fact that type 1 diabetes can present itself at any age was posted on every other Facebook page.  People were reminded that a small drop of urine can save lives.

As this outpouring of grief and information was filling the internet, a new story was being shared.  A young boy named David was fighting the same battle as little Kycie!! Once again a Type 1 diabetes diagnosis had been missed and a child was fighting for his life.  Tragically, he too would pass away on Sunday July 12.

The grief is tangible.  The pain is real.

Friends for Life shows us how amazing life can be despite a diagnosis of diabetes.  They provide real examples of people who are living life fully for years with Type 1 diabetes.  They showcase the latest in technology and advances.  Despite all of this, if a child or adult is not diagnosed with type 1 diabetes in a timely fashion, the results can be deadly.  This weekend has proven this once again.

My own son was misdiagnosed when he was just 2 years old.  When the proper tests were run, he was given just 24 hours to turn around.  That was 15 years ago.  It terrifies me that with all of the advances we have seen in diabetes technologies that other families are still experiencing the pain that we did…and a lot worse.

RIP David and Kycie. 11750729_10207446600706801_4876256436333725936_n

15 Years later and its still happening

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Too many children are diagnosed each day but this story is getting greater attention because she was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I see the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room.  It almost cost my son his life.

Today we have insulin pumps. rapid insulin, continuous glucose monitors, and sensor augmented pumps.  We have meters that read bg levels in under five seconds but still we have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. ketostix_intensity

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People do not know what to look for.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.