Type One Rock Star
There will be windmills and tulips
Welcome to Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……
when you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You Buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" You say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced in Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around… And you begin to notice that Holland has wind meals… And Holland has two lips. Holland even has Rembrandts.
but everyone you know is busy coming and going from Italy… And they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away… Because the last of that dream is a very significant loss.
But… If you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special the very lovely things… about Holland.
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
Trains and Painting
Painting therapy of the day
I think he may have ruined the train but it was worth it.
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.
