Thursday, August 11, 2011

Wanted Care free, Blissful, (Its Never) Simple Living.

WARNING: RAMBLINGS OF AN EXHAUSTED, EMOTIONAL, TORN MAMA LIE AHEAD.

The sound of quiet through the house, while children lay asleep.

Splashing in the pool for hours on end.

Stuffing their little faces with endless amounts of fruit on a warm summer day.

Running around the yard till their legs can't take anymore.

Falling alseep in the car to mommys music on the radio.

Eagerly attending a pizza and ice cream party.

Getting a few hours extra sleep, when the lil ones decide to sleep in.

Baking a cake, licking the bowl and getting frosting all over their faces.

Not finishing their dinner because they are just too sleepy from the days events.

Treating themselves to some sweets they found in your pocket book, leaving their cute faces sticky with residue.

All these moments, each so innocent and care free.

For some.

For us they would have been or were before 2008.

I didn't have to worry about how to manage and handle these lil moments of bliss and life as its simplest.

Is it simple? Carefree? Pure bliss?

For parents of those with Type 1 kids, it is never simple. It takes a lot of work to make these moments remain blissful and not take a turn for the worst.

I forgot how to be carefree. How not to worry. Its because I can't. Moments like these, and moments of just being take planning, thought, calculating and sometimes yes worry.

This week I decided to try and go with the flow. Be more carefree. Start loosening the pancreating reigns.

We went to a movie, and I let J and S share a LARGE bag of movie theatre popcorn, they also had hot dogs, and some diet pepsi.

Usually when we go to a movie I bring pre weighed, pre packed, carb counted snacks. OR I get a small back of popcorn and dish out handfuls, since I know how many carbs that usually is.

But not this time. They just dug in. J ate out of the bag, I swag bolused! I swag basaled! I held Dex close to me through out the movie so I could see if more was needed or if he was crashing.

And I rocked it. I did. He started at 115, hit 190, and ended at 154.

I felt so proud of myself for trying. For not being scared. For letting him just be a kid. Not a kid with diabetes.

Sure we had a 36 a few hours later but we treated and moved on.

The next day we went swimming.

Sounds simple right? HA. Since pumping swimming has become very complex for us. If we remove Js pump, he will end up high with ketones or just high. If we leave pump on but boost he drops low then goes high later. If we leave pump on and reduce basal he sky rockets hours later.

So I said here we go. Trying something new. A minus 30 basal for 2 hrs, a 15gc snack before swimming to get him 200, and I even put Dex in a waterproof case I got from Donna.

I was ready. J kept swimming to my right to my left, down the slide chasing his friend, Dex couldn't keep a signal so I put him in my bag. 1.5 hours into swimming J hit 96, we turned basal off for 30 minutes and gave 25gc.

Another hour of swimming and he ended at 116! I bolused for the 25gc since he was now arrow up on the way home. We got home for lunch and he was 78.

No lows, no highs, no ketones! Just fun all day! I did it. And I am so proud for trying!

I also find myself beyond inspired by Reyna and Joe. So I made calls, got quotes, and am in the process of trying to get together the money (mom? Grandma? Help!) to sign the boys up for Tae Kwon Do! Yes!

I'm at a place where I am not going to let Diabetes stand between J and what he wants. I'm going to work hard and make it happen.

I know it won't always end perfectly but I won't know unless I try.

I was feeling so good yesterday.

Over the moon.

Empowered.

And then.....

I read on facebook about TWO type 1 girls age 14 and 18 who passed away. It said one was sick and her death may or may not have been D related. The older one was having lows all day. It was her first night alone in her new apartment. Her mom checked in with her before she went to bed. Her daughter said her bg was up and she was turning in. When her mom called in the morning there was no answer. She never woke.

All my feelings, empowerment, confidence, certainty, my little piece of bliss was gone.

How could I be carefree? How can I not worry? The possibilities are tragic. Things can go completely wrong.

Am I stupid for taking a break from worrying?

Am I underestimating D and what its capable of?

All parents worry about their children.

Their first day of school, going to college, getting married, a tummy virus, a bad cold, falling off the slide and other day to day things our kids get into.

But worrying about our children dying? Daily? In their sleep? While at school? While swimming?

Wondering how they will manage on their own when they are in college? If they will make it to college?

Its all too much.

Diabetes has left me feeling empty today.

Deflated.

Scared.

Sad.

Angry.

Numb.

I feel stuck in between 2 worlds.

The one where I want to let our family feel carefree and always blissful, but its never that simple.

14 comments:

Colleen said...

You're an awesome mom, doing your very, very best to raise happy and healthy sons.

The DL said...

I know it's so scary and sad to read those kinds of stories, but you are doing a great job and doing all you can.

Penny said...

I know its scary hon, but look at what you are doing - letting Justice enjoy every thing a kid does. You should be proud of yourself for trying so hard and rockin it out! The best way we can, to honor these lives lost, is to continue to live our Type 1 lives and fight for a cure. Live each day honey. No regrets. Love you.

Denise aka 'Mom of Bean' said...

Lex! I could hear you exhaling and feel the weight lifting off of your shoulders. As serious and as tragic as D is and can be, you can't live in that fear all the time.
YES, we have to be cautious.
YES, we have to watch over our kids.
YES, we have to constantly adjust to life instead of just being able to live it and let our kids live it.
Allow yourself to still feel good, over the moon, and empowered because you deserve it...your boys deserve it.
It's just a never ending balancing act to find that just right spot between the overwhelming worry and the ability to just let go.
HUGS!

Princess LadyBug said...

I've got no advice for you Sugar Momma. All I have to manage is myself, although that's pretty damn scary some days. But I do have LOTS & LOTS of love for you (and the boys. and Biggah.)! And I know that you rock all of this even when you think you don't.

Sarah said...

Ugh. I could relate to every word of that. Days like this I can totally see myself worrying so much about Faith dying that I forget to let her live. The kicker is...that's probably what I'd regret the most if something did happen to her.

Hang in there.

Elizabeth said...

You are a rockin' D-Mama and don't forget it! I'd be happy to have you come mother Hen me for a little while :) Management is important, but so is letting J be a normal kid, and you meet in the middle fabulously. A whole bag of movie popcorn and hot dogs! I would be THRILLED with a 154 at the end of all that. Popcorn is my enemy, for some reason. As is the funnel cake I just had at the county fair, but was it worth it? Absolutely. And both of your kids will appreciate your hard work when they're all grown up.

sky0138 said...

beautiful and honest post...i love it. Big congrats and high fives to you for making the decision to try to live more carefree and for SWAGing your butt off and doing fantastic at it!! :o) I feel ya too on the heartache for the lives lost on a daily basis from this disease...it's beyond difficult to balance the fear and carefree-ness. HUGS to you!

Scully said...

Well written. That's what I was thinking. I always err on the side of caution. I don't have a carefree life ANY MORE. fact.

Reyna said...

Yeah..I am just sick. Between the deaths and a newly diagnosed child here (a friend's nephew)I am NOT in a good place with "D" right now. This "new normal" can go fuck itself...it is not carefree...ever.

Love you.

Meagan said...

I am heartbroken and angry at the same time over the recent losses. Makes me value our community even more.

I have to congratulate you though, it's awesome that you guys had some good, less stressful times with D. Hoping you get many more days like that!!!!

Kimberly said...

Much love my friend.

Jessica said...

I just wanted to say that I can really relate right now. It's so hard to balance. But I think you have it right. We can't let fear paralyze us. We have to teach our kids how to LIVE. How to enjoy life. And you, my friend, are teaching your boys to do just that. AND you're kickin' D-'s ass along the way! And that's what it's all about. Showing J that Diabetes doesn't have to stand in the way of what he wants to do. You're doing an amazing job. :)

Jen said...

Beautiful post Lex..I so long for carefree and try my best to get there..but mostly it doesn't seem possible..

Celebrate With Us!