Saturday, July 2, 2011

Memories, Milestones, and Mixed Emotions

365 days.

I couldn't imagine ever getting here back then - on day 1.
It seemed so far away. And the journey ahead seemed impossibly difficult - physically, emotionally, mentally - for us as parents, but mainly for our little 6 year old son, our youngest, our baby. It seemed so unfair that out of the blue, for no reason whatsoever, he was handed a life sentence of daily pokes, shots, constant monitoring, carb counting, doctor visits, blood tests, highs, lows, and of course worst of all - the possibility of death.
Every. Single. Day.
He was so sad, and so angry about it all. He cried and pounded his fists into the couch. He pleaded with us to explain. "You mean I have to live with this for the REST OF MY LIFE?!"   "Now every good day for the rest of my life, like my birthday, and Christmas, is going to be a bad day, because I'll have to get shots."  "It will be like this today, and tomorrow, and the day after that, and the next day, and the next, forever, and ever, and ever, until I die. How am I gonna live like that?" Imagine that you're 6. The worst day of every year is when you have to go to the doctor and get your yearly immunizations. And now you are told that you have to prick your finger tips with a needle and squeeze blood out sveral times every day and get 6 to 8 shots a day too just so you can eat food.  He couldn't imagine it. And I couldn't either. And my heart broke every minute of every day for a long, long time. And we cried, because that's all we could do.

First, we were so lucky to have patient and kind nurses and doctors at Phoenix Children's hospital who understood our fears and our needs and tried their hardest to help us in any way they could. We are so grateful to all of them. Dr. Peterson was Joshua's lifeline at first in helping him deal with his emotions and fears. She is still his good friend. What would he have done without her??

Our family and friends have been so supportive as well. They were as shell-shocked as we were, and have been there for us financially, phyically, and emotionally. They went to caregiver classes, learned to count carbs, watched the Glucagon videos I sent, probably got tired of me talking about it all the time, and probably don't understand why it's all I think about (only the DOC can truly understand that), but they put up with it without complaint, and they show up and WALK, and cheer, and try to understand.

And somehow we just keep plugging along.

We were so, so lucky to find our local support group. Meeting up with them for the first time felt like finding a buoy to hang onto in the middle of sea with no land in sight. They helped us see that life would go on and it would be ok someday. They helped us breathe again. They are the only ones who really understand without any explanation needed. I feel I belong with them even though I've only met them a few times.

Then I found the DOC. I don't know how I would have made it through this year without all of you. I can't thank you enough. I have especially been inspired, laughed with, and cried with Wendy ,  Tracy,  Reyna, Meri,  Hallie,  Lorraine,  Laura,  Alexis-Nicole, Kristi, Heather and Lora. You all have helped me so much. I have gained strength from your strength, I've cried with you and worried with you, I've laughed and been hopeful with you, and mostly just kept on living this D life with you.  Thank you.

So now on the day of Joshua's 1 year Diaversary I come to the real point of this post. Someone asked me why we would celebrate the day he became diabetic . I know to someone on the outside it must seem strange . They don't live our life, They don't understand. So I wanted to write this post to help my friends and family understand why we want to celebrate this year and every year.

We want to celebrate because Josh is ALIVE . So many kids don't make it past diagnosis. We were lucky. We got him in to the hospital early. I recognized some weird symptoms, he was very sick, but not as sick as many, and not critical. If we had waited he could have gone into ketoacidosis, possibly had seizures, and/or gone into a coma and died. I am forever haunted by a story I read a few months into our journey about a 1 year old baby who was diagnosed on the night of his birthday. He had of course had his first birthday cake that day, but by the evening he was in the hospital in a diabetic coma. He died that night. I couldn't get that little boy out of my mind. In fact it ruined my niece's 1st birthday for me .  I was worried for my niece, but mostly sad for him and his family (and for ours). I kept tearing up. D strikes again :(
Why do we want to celebrate? Plain and simple. We want to celebrate the day Joshua's life was saved.

We also want to celebrate our continuing victories in our battle with this hideous disease. There is nothing good or friendly about it. It doesn't play fair. It cheats. It's mean and nasty. It hits below the belt. It hits you when you are down. When you are exhausted, and don't think you can take any more, it kicks you again, and again. But we all keep fighting. We don't give up. Because we can't. Our walk team is called Joshua's D-Featers, and we ARE defeating D in little ways every day. Every time we catch a low before it gets dangerous, we win a battle.  Every time we beat down a high, we win a battle. Every time we crunch the numbers, adjust those basals, predict the right amount of Lantus to give, guess the right number of carbs eaten at Golden Corral, predict the right amount of basal reduction to make before riding his bike, we win. And even when we stumble, we make a mistake, and beat ourselves up, and second-guess, and think, and re-think, and cry sometimes, and rage sometimes, and get so frustrated, we still win, because we at least care and we have the love of our son and D will never have that. So we want to celebrate another year of hard fought battles and victories.

And the victories have been great!
He learned that he could survive having shots every day. He'd be ok.
He got to where he was actually FINE having shots. He said they didn't hurt anymore!
He made a video to tell other kids that were just being diagnosed that it would be ok. They would feel better about it after awhile, and the shots wouldn't hurt so much anymore. And another to tell other kids what life is like with Diabetes.
He learned to test his own blood sugar.
He learned to find out how many carbs are in different foods.
He finally got brave enough to try a pump. He was so scared to get that first site, but he did it and has never looked back.
He is not at all embarassed about his diabetes or his pump. He shows it to everyone and talks about it proudly. He says he is glad he has diabetes because it makes him special.
He auditioned for his first ever youth theater play and got the role of a turtle. He had a blast! He even had a "The show must go on" moment one day when he had a BG of 30 during the show. He tested himeself. Got a dollar out of his bag. Went to the concession stand, and told her he needed a candybar. When she asked him if his mom knew he was buying it (She knew he had Type 1, and no I didn't because it was the one night I was in watching the show!), he said, "No, but I need it! I'm 30!" 
He was having lots of trouble with anxiety for awhile. Thanks to his old friend Dr. Peterson, we got him evaluated and he got a new diagnosis - OCD (mild thankfully). He handled that with his new go get um attitude. When we met our family for lunch he walked in and announced "Guess what?! I have OCD now!  :) Now I have two diseases." He is handling all of that plus D and seems to be taking it all in stride.
He made a best D-friend Gavin and is so happy to have shared his first D-Anniversary with him!

So you see that the year was hard, without a doubt. Battles were fought. And that day. That day was horrible. I don't know if I can write about those few days yet. Still. But yet we must celebrate. Because we can't dwell on the negative. If we do then D wins. And we can't let it win. We choose to celebrate life and hard fought battles, and daily victories.

Thank you so much to everyone who supported us through this year. You helped us get to where we are today. We are grateful.

Happy 1st Diaversary Joshua!!