expired

less than perfect

No parent is perfect. We all make mistakes, forget things, behave in less than desirable ways at times. Yet, there is minimal room for error when you are in charge with a medically dependent child, yet I sadly fell into that margin. While struggling against the forces of some flu-y cold strain I forgot to fill Electra's pump with insulin which led to her waking with a BG close to 400. 

After deciding that the best remedy to get her number down was an injection, my heart sort of sank. It was 7:00 in the morning and there was my beautiful girl having to waken to a shot because I forgot to fill her pump. The same feeling of mourning I felt when she was first diagnosed overcame me as I wished I could take this situation away, coupled with the admiration for her strength; similar to any parent who wants to protect while sparing their child a painful experience. Yet in the end she endured the shot without feeling a thing.

Sometimes we work so hard to protect our kids from adversity and in the end they become stronger individuals for what they overcome. Electra has already grown so much by understanding the strength that has come from her diabetes. No longer embarrassed or ashamed, she instead has embraced the condition, handles it gracefully while proudly owning the positive aspects that have been gained in spite of the disease.  Despite my maternal instinct to spare her from this injustice, I could not be prouder. Those less than perfect moments, however, feel larger than ever when paired with her amazing attitude.  Another parenting moment added to the books, another notch to the humility belt as I realize daily how much I am learning from my children. 

"While we try to teach our children all about life, our children teach us what life is all about."

refill

hands

the years pass by so quickly

at first you were my baby

and then my little girl

now with the hands of an angel

you're becoming this ever

amazing person

i am filled with pride and love

and ever so grateful to be your mother

The cliches. They are often so true, especially the one that tells us how quickly the years pass. The days are long but the years short. Each night, as I sneak into Electra's darkened room, quietly switching on the lamp near her bed to test her blood sugar I am forever in awe of her beautiful hands. Adorable, chubby fingers transformed into youthful grace. Colors of her nails forever changing but the beauty is always there.

With each click of the finger pricker I am stricken with pride at her tenacity, strength and the void of complaints while enduring something she neither asked for, nor deserved. I am touched by the contrast of those beautiful hands contending with this meddlesome, invasive disease of diabetes.

There is so much grace, radiance, power and vitality in those hands. It will be my honor to get up night after night after night, for as long as it takes, to check on those hands.

in solidarity

It is 11:45pm on June 4th. Four days past the day that I should have been jumping head first into the solidarity pool, yet delinquently am dipping my toe into the luke warm water late into the night. Is it possible for a mother to justify her tardiness with a "better late than never" mantra?

Many months ago Electra asked me to begin wearing a pump set with the argument that if she had to wear one, so should I. So we made the agreement that on the first of every month I would insert an infusion set into my middle aged tummy in solidarity to my beautiful daughter. I admit to being a bit of a wimp the first time around. Insert set on day one, no problem. How easy is this? Day 2... not quite so easy. Did I hit a nerve? This freakin' hurts! Yoga? No, master sir. We are definitely not doing cobra today given that I can not even lie on my stomach without feeling like there is a sharp object sticking straight into an abdominal nerve. Okay, this solidarity thing is working. I get it, yet realize that I will never fully get it as I don't know what it's like to know that you have to wear this thing every day. For the rest of your life.

So tonight, as I quietly tip-toed into my daughter's room to get a late night glucose reading, as I poked her amazingly beautiful and graceful hands to gently squeeze a sample of blood from her fingertip, I looked at her with awe. In all her quietness and modesty there is a strength that stops me in my tracks. Enough to make me pause and realize that I was not doing my part. Infusion set first. A few changes to be made here and there next.  Little by little we are finding our way through this life of diabetes. Fortunately we have an incredible doctor at the helm and a desire to do not only the best that we can for our T1 girl, but our family as a whole.

"Be faithful in small things because it is in them that your strength lies."

diabetes etiquette

Written from the perspective of a diabetic the Behavioral Diabetes Institute puts out an etiquette card for people who DON'T have diabetes, which is humorous for those of us close enough to the disease to understand the reality of their tips, yet enlightening and informative for those of us with functioning pancreases.

1. DON'T offer unsolicited advice about my eating or other aspects of diabetes. You might mean well, but you also might be just plain wrong.
2. DO realize and appreciate diabetes is hard work. Diabetes is a full-time job that one did not apply for, yet cannot quit.
3. DON'T tell me horror stories about your grandmother or other people with diabetes you have heard about. Nuff said.
4. DO offer to join me in making healthy lifestyle changes.
5. DON'T look so horrified when I check my blood sugar or give myself an injection. A reminder that it's not so fun for the diabetic having to deal with these many-times-a-day routines.
6. DO ask how you might be helpful. 
7. DON'T offer thoughtless reassurances. Telling a diabetic that "hey, it could be worse; you could have cancer!"does not make a person feel better. 
8. DO be supportive of my efforts for self-care. 
9. DON'T peek at or comment on my blood glucose numbers without asking me first. And certainly don't add your assessment of numbers being good or bad. It's all just information.
10. DO offer your love and encouragement.  Sometimes just saying that you care can go along way.

why the world needs a dr. adi

for my first entry i am reprising a piece that i previously posted elsewhere on why the world needs a doctor as fabulous as the man we've been blessed with...


there are many dates that become indelible in our personal history; first kiss, first love, first child... and there are others that forever change what you thought you knew or expected. December 6, 2009 was that date for me. hence the name of this blog. this date became e's date of diagnosis, which i would later learn is a significant date in the world of diabetes.

i was feeling like i had been hit with a ton of bricks mixed with terror, confusion and vulnerability. our family was quickly thrown into an ocean of blood sugar levels, carb counting and insulin doses complete with syringes, shots and nightly worries. our normal readjusted to a new normal. our family photographs were viewed as before and after.

it would take many more months of working through our new routine to realize that perhaps there was more to be gained from our current way of managing this insidious disease. could there possibly be another option besides blindly stumbling from one check up to another without fully comprehending the system?

after following the breadcrumbs like hansel and gretel, from berkeley to boston to denver to stanford, we found the motherload at ucsf.  it was on e's birthday, december 23, 2010, at 10:24am when i sent my first email seeking an "immersive educational program for our 11 year-old daughter." i received a response from an administrator explaining that the clinic would be closed for the holidays, but that she would forward the "request to dr. adi, although he is currently away." by 12:02pm i received a reply from the previously said absent director of pediatric services explaining that my note his a sensitive chord and that he would get us in for an appointment once he returned.

it is only now, as i comfortably sit with the security of dr. adi managing E's health that i realize he was the best gift she could have received for her 11th year.  by january 10th we had an appointment to meet dr. adi and see the ucsf clinic. it was during this meeting that my tears of relief surfaced, and those tears continue to come everytime i'm in the room with this amazing man. by the following day e had her first appointment and the rest is memorable history. from the moment that she was told that she did not have to conform to a set number of carbs per meal e has been an adi fan since.

the whole psychology of managing e's diabetes has shifted since switching her care to ucsf. rather than living her life around diabetes she now has the freedom to live her life as she chooses while balancing diabetes to her preference. additionally, when we explained to dr. adi how we really felt that e was not taking her responsibilities seriously and needed to learn to manage her diabetes, we were quickly, yet kindly corrected that "no! she is a kid and should be allowed to be a kid. you are the parent. you manage the diabetes." more tears of relief, and more lessons learned.

from that moment forward we have felt that dr. adi should be shared with the world. everyone should have a dr. adi and the ability to learn from him as we have. it is our goal and dream that dr. adi have the ability to share his vision with other families. that dream has since been realized with the creation of the madison clinic for pediatric diabetes at ucsf. everyday i am thankful for what we have found in our dr. adi and grateful for my wonderful husband who made it all possible.