Saturday, December 4, 2010

4 years

4 years ago today life as we knew it changed. FOREVER. 498. One very sick little girl cried in the back seat of the car, all the way to the ER. She knew. Wise beyond her 6 years of age, she understood this meant she would have to take shots like her Mommy and her Grandpa. She sobbed, but not because of injections. Grandpa had been very sick lately. She knew Diabetes was to blame. "Am I going to die Daddy?"

12-4-2006, a Monday. I'll remember that day forever. Our simple life vanished before our eyes. Just-like-that. The next 72 hours would be spent in a crash course of how to keep my child alive. But, I had an advantage right? I was diagnosed 9 months before. I should already know all this right? Of course. Of course I did,(not really) yet words cannot explain how I felt KNOWING what really lied ahead for Maddison. KNOWING what she would feel with every high, and KNOWING how she would feel when lows became disabling. Knowing that fear was now something that Maddison would face often as a person with Diabetes. I thought I knew what lied never REALLY know though, do you?

I sat alone crying in the corner of the hospital room watching Maddison sleep. Afraid that any minute she would have a seizure from a low. I was still new enough to Diabetes that low blood sugars scared the H-E-L-L out of me. I had just spent an hour arguing with the nurses about how much Lantus to give Maddison for the first time. You see, Maddison may have come into that ER with a 498 blood sugar, but after sitting 8 hours waiting to be taken upstairs to our room, Maddison's blood sugar had dropped to 81. WITHOUT insulin. Just some good old IV fluids. (and fasting for 8 hours) Yet, the Doctors orders still said to give 3 units of Lantus. It was this very moment that I realized **I** make the decisions that give my child life, or takes it.

The Endo eventually agreed to dosing Maddison just 1/2 unit of Lantus as I suggested, but Maddison still crashed to 46 by 4am. If that 3 units of Lantus was given as originally ordered, we would have been in for some serious trouble.
12-4-2006 was also the day I learned to listen to my inner voice. To this day I trust my own intuition more than any medical advice.

That first night in the hospital was pure torture. The IV's. The finger pokes. The blood draws. I cried in silence. I Sobbed. All. Night. Long. I was overwhelmed with a mixture of emotions. Dispare. Shock. Fear. Relief.

Relief because we had caught Maddison's diagnosis earlier than most. Relief because we were of the "lucky" ones to have been spared DKA. Thankful that it was "only Diabetes." And thankful I'd be bringing my child home after a few short days.

For the next 3 months or so my emotions ran wild. I sobbed every day while driving to work. Heck, as soon as I was left alone the tears would flow. On like a switch. All my pent up emotions came bursting out the moment I was away from watchful eyes. Some days I'd sit in the corner of my bedroom closet and just cry. Quietly. Some days I had to call in sick to work. I'd drop Maddison off at school and then park in the parking lot. FROZEN. I couldn't leave. I couldn't stand to be too far away. What if she had a bad low at school and they needed to call 9-1-1?? If I did manage to leave the parking lot I'd cry all the way home and crawl into bed. Exhausted and totally drained. With cell phone in hand....and just sleep until it was time to pick Maddison up again.

I couldn't focus. I avoided friends and family. I couldn't eat, and certainly couldn't sleep. I worried about every minute of Maddison's day. Especially while she was at school. EVERY-SINGLE-MINUTE I wondered if Maddison was safe. Somehow I managed to put on a happy face every day. For Maddison. For Hannah. My happy face became like a switch, flipped on when my kids were around.

Looking back I probably needed some serious mental help, but who's to say what normal grieving is when you lose your childs promise of health? Who is to say what normal feelings are when you are faced with injecting precise doses of insulin multiple times a day to keep your child ALIVE?

The day I began to come out of the grieving stage I will never forget. A neighbor friend mentioned how happy Maddison looked. At that moment, I swear, dark skies turned blue. HAPPY?? My body felt alive again. Hearing the word echoed in my mind. HAPPY? Maddison IS happy!? Why am **I** such a freaking mess!!?? My baby is ALIVE and healthy again! She feels GOOD! Better than she has in months!! She is smiling!! Running and playing in the sunshine!! She is loving life again! She IS HAPPY!!She sings again! She dances! She laughs!! She has energy galore!!She is herself again!!! No more grumpies from being sick. No more meltdowns. No more dark circles under her eyes. No more weight loss. No more "sick" Maddison. Just smiles and LOTS of energy.

This time I finally HEARD it, and my heart listened. Maddison was indeed HAPPY!!

I sat and watched that girl play for hours! With peaceful feelings for the first time in MONTHS. Without worry. All warm and fuzzy inside. It was that very moment that life started over again. I was finally moving past the grieving stage.

It was around this time that I realized Maddison was catching all her lows. Again, we were very lucky. We didn't have the added stress of unawareness like so many others. Time brought confidence in managing Maddison's Diabetes, but that doesn't mean that confidence brought peace with our days and nights. I was still very angry. Angry for all the finger pokes, injections, highs and lows. Angry that Diabetes was so difficult. Angry that any child had to endure all this, all day. Every day. I was angry at the world.

Six months after Maddison's diagnosis we both started the pump. Whatever was "comfortable" in managing Diabetes by then was suddenly crazy again. Starting the pump was incredibly stressful. The pump made Diabetes visible. For the first time ever Maddison hated her disease. Because others could see it. She hated the questions, the staring eyes. The whispers. My confident little girl who for months so eagerly told everyone she had Diabetes now wanted to hide from the world. Maddison wasn't proud anymore. She was tired. Tired of it all.

Somehow we made it through the pump transition and Maddison ended up deciding she didnt hate the pump so much after all. She decided to stick with it. I however, HATED that fucking insulin pump. I hated how it made Maddison feel about her disease. I too, hated seeing Diabetes visible. I was sucked more into anger and guilt than ever before....because of that damn insulin pump. But, once again, TIME helped to heal both our broken hearts. Now we wouldn't trade our insulin pump for millions :)

By the end of the first year I had passed the anger stage and had fallen into acceptance. I still had days of denying that life would always be this complicated, but for the most part I was ready to do something about it. I was ready to help other parents that faced a new diagnosis. So, I signed up to be a mentor Mom through JDRF. Then I started my blog with the idea I could help other D parents know that what they are feeling is help them know that those first months are a roller coaster ride of emotions for everyone. What ended up happening was really quite the opposite. **I** was taken in and given the support and understanding from everyone in the DOC! Funny how I set out to help others by blogging, but everyone in the DOC actually helped ME!!

WOW...if you have made it this far into this blog post I'm impressed! I cant seem to stay on track! What I really mean to say as I pour out my heart today is this...

We are 4 years in, as of today. Today I can honestly say that both Maddison and I are at a place I never felt we could actually be. We are accepting of our Disease. Acceptance is a beautiful place to be.

Definition of Acceptance---a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit. Acceptance may imply only a lack of outward, behavioral attempts at possible change, but the word is also used more specifically for a felt or hypothesized cognitive or emotional state.

One thing Ive learned with Diabetes is that the emotions will ALWAYS be there, and day to day your feeling may still change. I used to think we would get to this "Acceptance" stage with Diabetes and life would be less complicated as emotions settled. WOW, was I wrong. I've learned the hardest part of living with Diabetes by far, is the emotional aspects. We can take the highs and lows....the pokes and pain....but the emotional side of Diabetes is by far the most difficult. For me anyway.

4 years in. We have accepted this life, yet we still fear the future sometimes. Even Maddison. Even at the innocent age of 10. We still cry. We still want to scream at the world sometimes. We still want to crawl in bed and hide when numbers go crazy. I still cringe sometimes as sirens blare down the road towards the school. I still have days that I want to give up. We still struggle with Diabetes visible sometimes. We still HATE Diabetes. That will never change. But, acceptance is a beautiful thing. And so is my Maddison :)


Reyna said...

You know I always viewed acceptance as you though it was too...a "stagnant" phase of no more "melt downs" about "d". I never really thought of it as stated that beautifully. I guess I would say four years into this myself...I am at "acceptance" too, with my fair share of emotional turmoil at times.

Great post. Weird to think both of our kiddos were diagnosed within a couple of months of each other. (((HUGS))). I hope you guys do something fun today!

Gerry S. said...

Kelly, I read your post first thing this morning and I felt like life had been sucked out of me. It was brilliantly written and I would be lying if I said I had no lump in my throat. Still it was early, LOL but as I read through it I hoped you were going to end on a high note, and you did. You inspired me to get up and give diabetes the finger, make us all breakfast and have a fantastic Saturday!! I can relate to your post almost to the letter with Miranda, my 5 1/2 yr old. We are in the pump transition and I dont say many cuss words now after having two kids and I apologise to any other readers but right now I hate the fucking pump too! Every day I am one step from running over it with the truck...but I dont because after all the pump research I have done, the pump is only as smart as the pumper makes it in my opinion.When we were doing manual shots we had A1c's of low to mid 6's but looking back on that we had more lows than we probably should have had. I was sucked into the belief of getting the A1c down but didnt see the effect on Miranda, It became a personal conquest of mine when I should have been paying more attention to her. We will keep the pump and we will get it to work better for us but I do detest seeing it strapped into her little pump pack, which Miranda says she loves but I hate it with a passion, I hate to pick her up for a cuddle and feel it between us. I just recieved 2 tank tops with pockets from Pumpwear today so Im hoping the pack will mysteriously vanish. I always try to look on the bright side and compare diabetes to other conditions, for example, I had a friend at work who's daughter was born with no legs and another close friend who's daughter has Spina Bifida. I shouldn't be comparing but those two families have a phenomenal uphill battle to face in the coming years, as do Maddison and Miranda. Miranda is very brave and I hope she grows stronger with the same courage as she gets older. I try to let her live the same life she was living before diagnosis but she's 5 and she can throw a mean tantrum if she likes.
Anyway, she just walked in from her friends birthday party and is trying to open her tank top parcel, LOL
Take care and keep doing what you'r doing, have a great Xmas!!!