Wednesday, September 1, 2010

Diabetes Art Day - One Mother's Journey

Thanks to Lee Ann Thill at The Butter Compartment , September 1, 2010 is Diabetes Art Day (see her blog post here).  Lee Ann continues to inspire me to try various types of art - and with limited time, I decided to cut some pictures, words and phrases from a couple of magazines that reflects my journey of being a mother of a child with type 1 diabetes, for 21 of his now 22 years.

A plethora of emotions needed to be captured but given the time constraints to get it done, only some of my feelings about this journey of mothering a child with type 1 diabetes are reflected in the collage.  You'll probably have to click on the photo to see it in its entirety.

Initially I wanted to try to create it without any words - but words are important to me and there were phrases that jumped out of the magazine pages that insisted on being on the canvas.  So it's a combination of pictures, words, and phrases from magazines, photos from the family, and a few of the myriad of objects involved in day to day care of diabetes.

The bottom and sides describe the more difficult times - especially in the beginning...."Fear of Being Hurt" refers to my son's fear of being hurt by us as we lanced his 15 month old fingers numerous times per day, and injected him with insulin 2x per day starting in 1989.  Dropping refers to blood glucose levels dropping.  One drop changes everything reminded me of being so worried about him on the monkey bars in the park - and what if his blood sugar dropped and he would come tumbling down....worry, tough and life was turned upside down by the diagnosis.  I was responsible for his life 24/7/365 with a medical condition I knew nothing about prior to his diagnosis.  Above the words "fear of being hurt" you see an insulin pump infusion catheter - we put that needle in him every few days (starting at age 7) and withdrew the needle and left just the Teflon catheter under the skin.  He hated the insertion but much prefers using an insulin pump over multiple daily injections.

Other objects on the canvas are a syringe (we used 2 per day for 6 yrs).  A lancet device, a lancet (we lanced our son's fingers approximately 6x per day since 1989 to draw a drop of blood to check blood glucose level). Emla cream which is to numb the skin before inserting an insulin pump infusion set.  Humalog insulin wrapped in a Band-aid as insulin is not a cure but it keeps our son alive.  A glucose meter. And some tubing that connects the insulin pump to the infusion set so the insulin goes into his body 24/7/365.  And the red box is a Glucagon Emergency Kit so if our child has a seizure as a result of a very low blood sugar, we would have to reconstitute the glucagon powder inside with the sterile solution in a syringe in the case, and inject a very large needle into him in order to force his liver to release stored glycogen and raise his blood glucose level enough to bring him back to consciousness.  My husband injected our son with it one time when our son was 2 years old and had a hypoglycemic seizure.  I still recall the look of sheer terror in our son's eyes during that seizure.

On the left side there are the words "wow that was embarrassing".  I recall being at a support group and didn't have glucose tablets on me although we had some in the car.  Until that point I talked myself into believing my son will be fine as long as we follow the rules, and he wouldn't be vulnerable...but I learned at that meeting how wrong I was with respect to vulnerability.

Further up the left you see the words "playing favorites".  I always worried my very precious daughter felt second best because so often the diabetes came first.  I never would have chosen to parent that way but with a 2 yr old with type 1 diabetes, and a new born, I was always torn when both were unhappy and had to attend to my son worried his blood sugar was dropping too low.  The Hello Kitty was colored by my daughter and I want her to know she always brightens up our lives with her creativity.  The pictures of pulling, and sitting and reading - reflect my guilt and wonder if I spent enough time attending to her needs and does she know how much I love her?  And that I consider her a divine gift to our family because she brought balance and joy during a time that was so stressful.

On the right moving from bottom to top - the "Hi I'm new here" "Diabetes Research Institute" and "I need a hug too" is reminiscent of our family attending a support group led by Barbara Singer of the DRI in South Miami where I met other families also raising children with diabetes. Our family continues to be involved with the DRI. It was the "hug" and connection I desperately needed.  "Critics", "mirage", "DON'T", "Doctor's orders" ,"Chance" much pressure to do what was right - but what was right with a disease that has no true formula?

Going up further on the left and heading to the top shows the growth through the years....I no longer feel helpless, in fact I feel empowered to advocate for others, to push on, to make a difference, to work hard, to raise awareness of the need to cure diabetes, to live a fulfilled life, to trust my instincts, to be gentle with myself and others, to volunteer as the Vice President of the Children with Diabetes Foundation and work with others to select grants for promising and cutting edge research to change the course of diabetes.

Eyes, clocks, a mother juggling while on a unicycle, food, family, images of raising children, cartoons...where has the time gone? The picture at the bottom of a mother driving reflects our family growing up. Now both children are away at university, life is very good and I am so very grateful. The rest is more likely self-explanatory.  Feel free to ask me any questions.

Thanks for looking.

And please support a cure for diabetes.

With love,