I wanted this blog to be about my family's experience with my son's Type 1 Diabetes. My family is more than just diabetes, but I want this blog to be focused on how it affects our family. I hope other T1D parents find it helpful, and that my family and friends find it informative.

Wednesday, September 26, 2012

A feeling of...

After diagnosis, a friend told me I would morn losing my healthy son.  I didn't really get it but I appreciated that she felt it was serious.  I resolved to be strong, and to live life the same as if Johnny didn't have diabetes.  I was going to stay positive.  We of all people could do this.

The past few weeks I am failing at this resolution.

How do I explain what I am feeling?

When first diagnosed, diabetes was an obstacle to tackle.  I am pretty good at that.  I set out to learn everything I could about this disease and how it is managed with toddlers since that is very different than older children.  We struggled in the beginning, but it was understandable and acceptable even... it was the beginning.  As I struggled to keep him from post meal spikes, and post high lows, and those sorts of things, I always had something to hope would help us.  When we were on MDI (multiple daily injections) and didn't have Dex, I would tell myself how much better and easier things would be for Johnny and our family if we could get a CGM-continuous glucose monitor, our Dexcom.  I held on to hope that once we had that, it would be less stressful, less worry, I could see what was happening instead of wonder.  We got Dex, and it did help... but it didn't make living our life the way it was before diagnosis.  There were still lows we couldn't catch because Dex can't keep up, there were still post meal highs which led to major behavior problems... there was still Diabetes to live with.  So then I started putting all my hope for life to improve in getting Johnny on a pump.  Yes, the pump will help us keep him from spiking high or dropping low.  The pump will allow others to be comfortable caring for his needs.  It does... but it doesn't... its just another tool I can use to help manage Diabetes.  He still needs constant monitoring.  Pumping requires more finger pokes not less.  Nights feel more dangerous with a pump.  Ugh....

Our last Endo appointment was a good visit.  Johnny's doctor was thrilled with his numbers.  His A1c was right where she wants it to be.  He seems well adjusted.  She told me that we were "ideal."  I was really shocked by this.  At first I felt a sense of pride.  We are doing it!  But after I thought about this for a few weeks I have a new feeling. 

A feeling of despair.  A loss of hope that our old life is waiting for us.  It isn't. 

But knowing that, really acknowledging this fact and embracing it is freeing.  I don't need to "try" to get back to that.  I can morn losing that old life, but I am excited about our future again. 

Thanks for letting me share.


  1. Someone told me it was like losing a child. This came from a mom who had lost a child and works with diabetics and their parents. The grief comes and goes in waves. It sometimes hits hard and sometimes we deal okay with it. But its okay to have moments of grief. We just need to remember to take some time out to grieve or mourn and then move on. We have to always keep pressing forward. Life won't be the same, as you know. But at the same time, its okay to mourn the past. I know you essentially said this in your post. I just wanted to word it a bit differently in hopes that it will encourage you. Mourn. Cry. Let it out. And then go check those sugars again (cause it probably is time again anyway). And take it moment by moment, step by step. You do a great job! Just keep doing what you are doing! :)

  2. Hugs to you, Jaime! I can only imagine what you go through each day. I know life changes are hard - things that change you forever. We all want our kids to be "ok," and when they hurt, we hurt. But you...you are doing a great job. I know you are doing the best for him. Johnny is a lucky boy to have such a loving, caring and strong mama.