This child will be gifted with love, with patience and with grace

It is said that Natalie wrote this song for a women who was born with handicaps that seemed too great to overcome. But she did. 

"Doctors had to come from distant cities, just to see me/stand over my bed, disbelieving what their seeing. They say I must be one of the wonders/God's own creation, and as far as they see they can offer no explanation. Newspapers ask intimate questions, want confessions/they reach into my head to steal the glory of my story. They say I must be one of the wonders/God's own creation and as far as they see they can offer no explination. Ooo, I believe/fate smiled, and destiny -  laughed as you came to my cradle/know this child will be able/laughed as my body she lifted/know this child will be gifted - With love, with patience and with faith. She'll make a way. She'll make a way. People see me/I'm  a challenge to your balance/ I'm over your heads how I confound you/and astound you. To know I must be one of the wonders/Gods own creation. And as far as they see they can offer me no explination. Ooo, I believe/fate smiled and destiny - laughed as she came to my cradle/know this child will be able/laughed as she came to my mother/know this child will not suffer/laughed as my body she lifted/know this child will be gifted - with love, with patience and with grace. She'll make her way/she'll make her way/she'll make her way/she'll make her way."  Natalie Merchant - Wonder - Tigerlily

He'll make his way. He may suffer but he will be gifted with love - with patience - with grace. He'll make his way.

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. 

Thanks God

I hate this. This is Too hard. They say God only gives you what you can handle but that's a fucking joke. You may be able to handle it but your life, your soul and your heart are ruined by the end of it. Thanks God. Thanks for fucking looking out for us.

Make the world your Narnia

Ocean and I have been reading the Chronicles of Narnia as is tradition in my family. We read them as devotions as a family instead of the Bible and the tradition continues to read and quote from them often. "That's right sir! Couldn't have said it better myself!!"

We are reading them at naptime and bedtime and this passage resonated with me last night.

"Suppose we have only dreamed, or made up, all those things-trees and grass and sun and moon and stars and Aslan himself. Suppose we have. Then all I can say is that, in that case, the made up things seem a good deal more important than the real ones. Suppose this black pit of a kingdom of yours is the only world. Well, it strikes me as a pretty poor one. And that's a funny thing, when you come to think of it. We are just babies making up a game, if you're right. For babies playing a game can make a play world which licks your real world Hollow. That's why I'm going to stand by the play world. I'm on Aslan side even if there isn't any Aslan to lead it. I'm going to live as like a Narnian as I can even if there isn't any Narnia. ".                  -Good Old Puddleglum

          The Silver Chair, C.S. Lewis 

Tears

Tears. Tears. I want the tears.

They want to come. But they must not.  

Once they come, will they stop? 

No time for tears. No time for screams.

Dont let him see, it's breaking me.

Make a game, as I cover my eyes. 

Make him laugh, he won't see me cry. 

2016

Christmasy

You know, the normal kid stuff is hard. Constantly cleaning up messes, getting into everything, pushing your buttons, throwing your favorite plant off the dinner table. Did I mention cleaning up messes? Man it's hard to keep it together when you're already exhausted from diabetes. You take them on an outing for only like two hours and you come home and could sleep for a week but you can't because his blood sugar isn't cooperating so you have to stay up and check it every hour.  We have been trying to do some Christmas things but I think all we have accomplished so far is getting our tree from the farm (previous post) and decorating the house.  But now we have snow!!!  Which just makes everything magical and Christmasy (is that a word?) without me having to do anything. Ha! Even our family of quail that come visit every winter has been fluttering about out in the snow.  So what am I going to do?  I'm going to stay inside and watch the snow with my boys.  I'm not going to feel guilty about not taking Ocean on more outings.  I'm going to bake Christmas cookies and let Ocean decorate them.  And I'm going to color my Christmas coloring book. And read. And cuddle. Lots of cuddling.

And again, let go of the guilt.  We are together.  We are as healthy as we can be.  And we are loved.

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!

There is a crack in everything. That's how the light gets in.

I choose to let the cracks let the light in. I choose to let the broken and bruised places in my heart let the light in. I choose to rejoice in the imperfect parts of me, of my son, of my family because by God we will et that light come blazing through.  Through accepting our darkness, we find the light.  Thanks for the reminder Leonard.

******

The birds they sang...at the break of day...Start again...I heard them say...Don't dwell on what...has passed away...or what is yet to be. Ah the wars they will...be fought again...The holy dove...She will be caught again...bought and sold...and bought again...the dove is never free.

Ring the bells that still can ring...Forget your perfect offering...There is a crack in everything...That's how the light gets in.

We asked for signs...the signs were sent: the birth betrayed...the marriage spent...Yeah the widowhood...of every government--signs for all to see.

I cant run no more...with that lawless crowd...while the killers in high places...say their prayers out loud. But they've summoned, they've summoned up...a thundercloud...and they're going to hear from me.

Ring the bells that still can ring...

You can add up the parts...but you won't have the sum...You can strike up the march, there is no drum...Every heart, every heart...to love will come...but like a refugee.

Ring the bells that still can ring...Forget your perfect offering...There is a crack, a crack in everything...That's how the light gets in.

Ring the bells that still can ring...forget your perfect offering...There is a crack, a crack in everything...That's how the light gets in...That's how the light gets in

That's how the light gets in.

Anthem Leonard Cohen

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. 

oceansart_t1dlife_fall

oceansart_sillymom

oceansart_t1dshavefuntoo

oceansart_lookmom

oceansart_t1ddaddy

oceansart_lovemyboys