Friday, November 22, 2013

The days I watched Type 1 take her away...

Sean at diagnosis
Most of you know my teenage son is "T1." Some of you may know I lost my best friend to Type 1 diabetes, a month after our son came home from ICU with an A1C of 14.5...(He is now 6.5)
What only her close family, other friend and I share, is the last day of a 10-month DKA induced coma that took Heidi. A mother of four (like me), a wife, a confidant; a light to those who knew her. Her laughter was remarkable! Her smile, even more so. Over 40, she was still getting honks and cat calls from passers by. (God knows I'd never gotten that, they were DEFINITELY for HER)!

She had four daughter's of her own, but my youngest was her 5th!
On the anniversary of losing her, and my son's diagnosis, I nearly "lost it", too. I had an ultimate meltdown. I cried harder than I ever had in years. I wailed through the night, crying her name. (My husband told me that morning) This sounds dramatic, I know. But I choose not to describe her death, the life-support, and moments that cause nightmares because it brings no glory to her remembrance.

How could I walk through her (unlocked) door in my pajamas nearly every morning, sit down and watch her take her blood sugar, say "230-250" EVERY-TIME, and not know what that meant? I never asked. Well maybe I recall a "it's not good," from her. I also recall the weight and muscle that she lacked. And the clues from doctor appointments we either went to together (or I heard about after) in which she was told she had "dysmorphic....blah blah" Something in which her body perception was off. (another clue)

One night I got a text and then another from 2 of her daughters that she couldn't stop throwing up, and she didn't have the flu. I was there just as the ambulance arrived and took her. Nothing was ever the same. We spent HOURS in the ER the day her kidneys shut down. Her family spent hours/days a week driving to dialysis. My hubby and I were there when the cardiologist walked in and asked to sit down. She had heart blockage as well...
She said this would be our last pic together and it was.

I wasn't there for quite some months following most of this. I would dare say the whole 10months. Some friend I was. I had been told her death would be slow, awful and un-kind if she were not to "turn it around"...And maybe in some unthoughtful way I hoped my fighter friend would do just that. She was so stubborn! Her strength and weakness was that. I loved it, I hated it. 

6 months into her coma I was ready to go see her when my son, Sean, began throwing up. He had been to his doc the day before complaining of the top 2 symptoms of Type 1 diabetes; headache & nausea. He also mentioned his appetite had changed, and stomach kinda hurt. We were sent home. The next day he vomited profusely and I rushed him to the ER. Emergency appendectomy. 
He never seemed to recover. He was slow, and some mornings I feared him dead due to slow breathing and extreme lethargy. Still no worry from his pediatrician. 3 months later he had lost 22lbs and looked like death's door. I left my mother's birthday as she and my dad pressed, "Call us tomorrow after you take him to Urgent Care and tell us what's up," He wasn't keeping food down. So I took him in the next day and the reading was so high on the meter it didn't give a number. Our world has never been the same. God Bless Dr. Stone. (shout out)

Heidi sent a message via her daughter through text while Sean was in ICU for 2 days.- (From her ICU room). I cried reading it in the hallway alone. Rarely did I leave Sean's bed. For almost a week. I had to for that moment. I knew she knew. What I didn't know is that  I'd never see her again until the day she died.
Bev sent me Heidi's message from ICU to ICU
Sean came home so sick he didn't make a good return to school. His "honeymoon" period was intense, and daily (DAILY) the nurse called as he plummeted into the 40's and nearly collapsed. I never left home. I never left town. I talked to our Endo constantly. The day I finally left town and left him for school (with BIG PRAYERS sent alongside) was the day Heidi's daughter called and said, "Come say goodbye." That was Sean's first full day of victory being back at school. My other friend picked him up and met up to see Heidi as well that evening. 

Now it's as though I live every day I didn't pay attention to Heidi's life. Diabetes was her LIFE. We all recall the day her pretty pink mini-med pump arrived, we all recall her "butter with waffles" at IHOP as she punched buttons...but I never recall things that I know are now necessary for my son.

Heidi's glucose meter didn't seem to leave the house. She didn't "check" other than the morning. She took 3hr naps every afternoon (we called them her "life-saver" naps, as did she...) So as I learned about Type 1 with our son, you can IMAGINE how crazy control freak "DO IT RIGHT"/"BE ACCOUNTABLE" I was with our 11yr old Sean. It was insane, the high expectation I had of him. I thought of everything..."Carry your OWN bag, you left it WHERE?! You want your insulin to go bad, you take it out of the CAR, young man!" One day when he very honestly asked "Geez, why do you get this way?" His dad (way cool, takes it easier than me) answered bluntly, "You want to end up six feet under like Ms. Heidi?" 
Whoa. Stop. We all got it. I came home and soon after cried to her daughter for the guilt in using Heidi's name that way... But it worked. It just did. He misses her just the same. She was another mom to my crew.
Becca and my Clara
(L)Melissa and Amanda (R)
 Sean was vomiting and bordering an ER visit the day of Heidi's funeral. My hubby stayed home with him and the littler children while I took his brother. I barely made it on time. Great friend moment #2. During the pastor's moment on her life and when he said, "This disease has no respect, etc..." I literally shook so hard my teeth chattered slightly. That was one of the hardest days to confront. 

At funeral in Temecula
Now every day I see it. I know what the numbers mean. I know what foods "count as"...and I know what is expected. And days when my son forgets (because he is human) to put his pump on after a swim in the pool with friends, I have been known to go a little cooky and shout, "WHO WANTS TO TAKE SEAN TO THE ER WITH ME TONIGHT?" His friends look up like "Wha..." And I go on to explain the severity of his disease to them... (Now they are his accountability!) 
  • I have threatened to pick him up from play dates if he gets distracted and doesn't check. And I have followed through.
  • I have nicely educated my best friends, left emergency meters, kits and insulin at their residences, and in one year this came in handy.
  • I have also picked him up from sleepovers because I've called like a nut-ball mom and checked and realized things weren't going "to code" food-wise or checking-wise. 
  • Friends now bring over carb counts if they bring food
  • Last year, Sean's friends collaborated to sneak his life-saving glucagon shot around for him at school if they searched his bag (that was a fun one, he felt like a total bad-donkey!- lol) 

I have heard that diabetes HAS NO RESPECT. That you can do all you can do, and that maybe accounts for 50% of the outcome. The other 50% is a crap-shoot. 
Well then WE WILL DO 100% of that 50% is what I tell people. I'll be darned.
That is the gift Heidi gave me that is ongoing. Awareness. The passion and desire to let the loved ones in my life, and in my son's life, KNOW THAT HIS LIFE IS IN THE BALANCE HOURLY. And we all HAVE GOT to be aware of that.

What I had been doing...
What I spent all night doing...
The night I said good-bye to the most amazing mother and friend I did not sleep. I came home and began creating. It was like therapy. I had been making cake-pops for many months by then, but that evening, I took them to a whole new level of "wow." Over that first year of Sean's Dx and her death my other friend and I pumped out 3 orders a week (if not more) and stayed BUSY being "The Cake Pop Queens.' It was a blast. It was distracting.

Just as that year anniversary passed, I landed in a psychs office and he asked, "Who referred you here?" I answered, "MYSELF!" He laughed. I cried. I cried for my son. I cried for Heidi. I cried in gratitude that my marriage and family were strong enough to handle it all, but I needed HELP with the level of anxiety I was encountering ON THE DAILY. 

We had been researching DADs and were fully committed to an org after fundraising our tails off. I already knew what it looked and felt like to almost lose my son, then WATCH my friend die of this very disease! Good God, give me a LIFE-SAVING ANIMAL! I want sleep! I want...Oh wait. Does my son want this, too? That was a better place to start. I had been selfish long enough.

Not long after getting back on track and of sound/calm mind, we had a "falling out" with our DAD org anyways, so it was REALLY time to evaluate if a DAD was a good direction for us to pursue. "YES MOM, I want to do this," was Sean's reply to a very serious "sit-down." He went on to explain that he was also excited to move forward with another organization if it were possible. The one we had been with was not a good fit, and he felt it and knew it long before I figured it out. He's a smart one. 

So here I had been losing so much (We also lost our dear sister, Sharilyn, at Christmas time that same year. Sean said "My best friend is gone.")
Heidi and Sharilyn
  • Lost my son's health
  • lost my best pal 
  • lost my own health (Dx'd w/ Lupus 4mo after Sean) 
  • lost my one sister, (and my other had melanoma removed by John Hopkins D.C. and is thankfully cancer free...) 
  • my kid's other "Auntie," her hubby had a brain stem stroke and is "locked in." Bed ridden, four kids my family all considers cousins...Closest people in my life, all suffering.TOUGH YEAR.
GRIEF. It's a B. Period. But it comes. You can't hide from the stages of it.
  1. Denial
  2. depression
  3. anger 
  4. forgiveness (to self or others) 
  5. acceptance, then freedom. 
Most of us get STUCK. Someplace in depression or anger. We want a "fix" (I know I do)!

What do I take away from this year? I look FORWARD. I ACCEPT. I think of Heidi's gift to me, and I thank God for her beautiful daughters that still share their lives with me (and permission to share her story). I thank God for the people that fundraise, ride, bike, and RALLY for the CURE. They believe. And that was Heidi's phrase: BELIEVE. It was written on her arm, and is on both our mantels at home.
(L-R) Becca, Melissa, Nolan, Amanda, and Beverly

Will her story bring light to a loved one you know that is suffering? Share it. Do you have anxiety about your child being diagnosed? SEEK HELP. 
Are you getting a DAD for YOU or for your child? Who is going to benefit...?
These are all tough questions, but you know I'm nosy and all up in your stuff like that... It's Heidi's way! 

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