Monday, December 8, 2008

Our diagnoses

I am sitting here staring at the screen but I am not sure what to write. I am not sure where to start or even all the terminology to use. I am currently watching Mike standing over Jude crying and telling him he is sorry. Jude had his MRI today, and was such a big boy he didn't even require sedation. He actually slept right through it. Later in the afternoon the doctor came in and we knew we he had a team behind him it wasn't good news. He said that it isn't just that Jude is missing his corpus callosum, or that his brain didn't fuse, or that he has a pocket of fluid in the back, or that his brain is a little's all of them. He gave us little hope. He said that Jude would probably never be normal and probably wouldn't live through early childhood. It was scary, horrible, and I just wanted to run away. I wanted to scoop him up, find Emily, and run home. I bawled, screamed, and cursed the prayers that haven't worked. I for the first time probably in my life lost it ... I hated everyone and everything...except my kids. I stayed in the room alone with the baby for awhile and made everyone wait outside while I held him. I cannot go into to much detail but I am just to tired. I can tell you that later on while walking through the hospital crying Mike ran into our neurosurgeon Dr Roberts. He asked why Mike was crying and he gave him the horrible diagnoses the neurologist gave us. He said not to give up hope yet. That he has worked in this field for a long time and sees a lot of unexplained things. He also said the fact he has the cognitive abilities he has is a good sign. So he is coming to see Jude and review the MRI tomorrow. Granted I highly doubt he thinks he will ever have a chance of being normal either BUT he may not think this is lethal. I just kept telling Mike I wanted my life to be normal never will be! They just gave Jude his first dose of anti seizure medication which knock him out. He hated it so bad that he choked terribly several times. This last time was so bad that I felt I was going to pass out and I had to leave them room. I wish I had better news. I wish I had happy thoughts to share but I don't. I wish I knew what to do or what the future holds.


luane said...

This just breaks my heart. I posted on the texas board so that everyone could say a prayer for Jude. Miracles do happen! and do not give up. Not that you would.. Jude is a fighter like his mom, dad and big sis.
Please let me know if you need anything!

luane said...

Jenn, I found this and wanted to share it with you..

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 the unique experience to understand it, to imagine how it would feel. It’s like this:

When you are 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 Coliseum. Michelangelo’s “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 flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plans. 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. 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 than Italy, less flashy than Italy.

But after you’ve been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, 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 go away, because the loss 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.

Anonymous said...

Hey Jen just wanted to let you know that your family are in my prayers.

KJN in UT said...


I linked to your blog back in July from I somewhere (I can't even remember from where!) and have followed your family's story closely since then. I truly appreciate your blog and your openess! I have thought about posting several times but never have. I just wanted to give you a huge virtual hug and let you know that my thoughts and prayers are with you, Jude, Mike and Emily and I want you to know that strangers care about your family and hope for the best! Let's keep hope alive :) And to finish, some lines from one of the best songs ever (I am a HUGE Beatles fan):

Hey Jude, don't be afraid
You were made to go out and get her
The minute you let her under your skin
Then you begin to make it better

Cjengo said...

Thank you all, and Luane that was simply amazing. I cried while I read it out loud and then smiled at the end. We have a beautiful Holland.

ladyeyes60 said...

Oh my Jen. Our thoughts and prayers are with Jude and your entire family. I too cried when I read Luane's posted story. I wish we lived closer to each other. I would take Em to visit Meghan. She would keep her busy. Just know that we are always here for you know matter how many miles apart we are from each other. Luane is right, miracles do happen and it sounds like Jude is a fighter. I know you are too. Jude has a special place in our prayers and our hearts as well and you, Em and Mike. We love you all.
God Bless,
Susan & Meghan and family

Deeptones said...

Jennifer, I just wanted you to know you and your family are in my prayers. Don't forget that Jude is passionately loved by the untameable God of the universe! As are you. If you need anything I'm here.

Jennifer said...

I don't even know what to say - I am just going to keep praying for a miracle. Love you guys!

Anonymous said...

I was sent to your blog from a friend of mine jennifer. What a rough read, and such a moving blog. I cant imagine what you are going through. I pray that God will show you patience, and wisdom. Whatever time we have on earth we affect someones life. Whatever happens with Jude, he has blessed us all. This story has made me even more thankful that I have a healthy child, and that i was a healthy child. Dont blame yourself, but thank God that he is here, right now. You and your family will be in my thoughts and prayers.