Pre vs Post

Sometimes it hurts to look at pictures of Ocean pre-diagnosis. Chubby little innocent one. I'm glad we didn't know what was to come but I just wish...well I guess I just wish it never came. I miss the days before. And I'm overwhelmed and scared of the days ahead. It's taken him almost a year to start doing some of the things he could do before the slow (then rapid) downward slide into type one. Making funny faces in the mirror - or phone, is one of those things.

Ocean went through so much trama right when he was startinf to talk that he not only stopped learning new words but regressed. I I remember noticing the changes start around October of 2015 (diagnosis wasn't until March 2016.) I thought he was just asserting his independence by not wanting to mimic me anymore and not saying the words I knew he knew. Little did I know his body was slowly starting to attack those beta cells. It was at least 6 months before the final trigger happened and his pancreas stopped working completely. Months of his body having high blood sugars and me not knowing. Months of him probably knowing something wasn't quite right with no way to tell me. I hate that I didn't know.

The first word he ever spoke was Light. Last night he finally said it again. 

Pre - diagnosis ⬆️ Probably July 2015

Post-diagnosis ⬆️ Feb 2017

The kid that never stops laughing

After a day of grief, fury and defeat this sure helps. 

He is playing a PBS game of Nature Cat. His laugh is changing. *sigh* He truely is the kid that never stops laughing. We co-sleep and I will wake up to hearing him making a sound and of course thing he is having a nightmare - nope just laughing in his sleep. Wakes up in the morning giggling. Begs to be tickled. I want to keep laughing too. 

Christmas light

As we come to the end of diabetes awareness month, I want to once again refer to legend Leonard Cohan. As you remember he said, "There is a crack in everything. That's how the light gets in." Not to create-but illume a hidden part of us whose beauty might otherwise have passed unnoticed. We all have our cracks. Let us use those cracks and imperfections to let the light in and shine through us. We already have it within us. Iknow in my heart that the cracks within Ocean will help him become the beautiful person is meant to be. We can already see the light in his joy and laughter. As you can see our hunt for a Christmas tree with Grandpopz was filled with wonder and light. Not everything is easy - actually nothing is. I felt overwhelmed with the thought of leaving our hobbit hole and going out for a tree, and there were a couple cracks in the adventure but as you can see from the photos and video it was worth it.

Oh so worth it!

T1D also looks like this

Type 1 isn't just all needles and test strips.  But I am thinking about it every second of every day.  Luckily, this sweet boy hopefully is not.  For now I can bear his burden. For now I thank God that I can bear his burden or at least part of it. While this trip to Bush Park looks lovely in pictures and of course that is real joy on our faces so in that moment it was lovely but there is always a part of myself that is waiting and prepping for the next diabetic chore.  It might be as simple as making sure he is continuing to drink water (you get behind on that and you will start to see the dark circles under his eyes, I am forever trying to interpret the color of his skin, the look in his eye, the depth of the circles around them.)

Or maybe after that rough and tumble in the leaves he burned to many carbs and needs a couple chocolate kisses to pick him back up.  In fact about 20 minutes after these pictures were taken he starting wanting to lay on the ground.  Red flag.  Low or dropping fast. So, chocolate kisses are given.  You guess at the right amount.  You're wrong and an hour later he is 340.  Great.  The yoyo. 

Or maybe you didn't double check your syringes so when its time to eat while you are out trying to have a fun family adventure you have one syringe left.  Don't mess it up! This is your only chance to get it right! That might be the end of the world if you screw this up. That's how everything feels. So life and death. And I guess that's because it's true. Not every single decision but all of them put together keep him alive. And yes when it comes to the correct amount of insulin, it is life or death. The insulin that gives him life could easily snatch it away.

Now, the balance. Trying to be in the moment as we play in the leaves, finding the joy, setting aside the diabetes. It'll be OK for five minutes, it'll be OK for 10 minutes, just rest, just relax, just laugh and smile at your boys. 

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Today's painting session

Painting fun

This video is taken May 6, 2016.  Ocean had been diagnoses for 47 days. 

Sometimes instead of making pretty paintings, Ocean likes to play in the paint!  Can you blame him? In the back of my mind this whole video I was thinking, can I get him clean enough after this to inject insulin? Diabetes. Always lurking in the back of my mind.

Bedtime reading

I'm not really sure where to start with this blog.  I have so much to say.  So many stories to tell.  Stories that I really need to tell but it feels scary and overwhelming to start.  So I am going to start with normal life.  At night, Ocean and I usually stay up much later than Daddy (he gets up much earlier than us.)  Tonight he was looking through our classic book section. Ya know, just a little light reading. N. Machiavelli and Mark Twain.  Ha!

I find these pictures so hilarious.  You can tell his is being goofy and we love goofy.  He helps me stay goofy.