Monday, December 8, 2008

Thank you Luane for the writing, and to all our friends and family.

Mike and I finally left the hospital to shower and retrieve more clothes tonight. In the car I felt more calmer, and began to speak. Mike looked at me and smiled, and then said "thats the fastest I have ever seen anyone complete the 5 steps of mourning". Not that they are complete by any means, but I think my rage turned to acceptance because of what we have been through. I feel for mothers who have no clue that anything is wrong until the seizures start, and are then given this horrible diagnosis. In fact, he said this is more common than you think afflicting 1 in every 8000 children. Mike and I discussed the fact that Jude is our baby and we love him no matter what. That we will give him the best possible life we can. If we are dirt poor from this than we just are, but we will have our love. If he passes early we will understand this was Gods will so Jude would not suffer. We then discussed ourselves, and how this situation could affect our marriage and how similar circumstances affected those in my family when my mother passed. We vowed to each other that we would always make time for each other, and be there to lean on each other. We came back to the hospital still in tears, worn out, clean, but calmer. While out Jude seized through his new meds so they gave him more Klonoppin (sp?). I will update on that when we can. Also, a huge thank you to all those who have sent wonderful messages, and prayers. We feel so blessed to have such wonderful friends, and family. I am in awe at all the people that have been here non stop,rushing to get Em, all the calls, and more. I am afraid my facebook, and myspace only work at home and not at the hospital so I will have to email you from there once home. I can see your messages you leave though through my email. God bless everyone, and thank you!

My friend Luane posted this on comments, and this sums up how our life will be, but how thankful we feel to have this beautiful baby in our arms tonight. I cried while reading it to Mike.

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.


Respiratory Therapist said...

Please know that I am thinking about you guys all the time and praying. I really wish there was something I could do to make this go away, because I would. If there is anything that I can do for you please let me know. If I could be there everyday I would. I am at a loss as to what to say to give you encouragement except that you are one of the strongest people that I know but everyone needs someone to lean on so lean away. Love you! Michelle

Mara said...

I heard about your situation from Luane on the pageant board. My child too has medical issues and is about to have open heart surgery. I was also given the poem about Holland. After many tears and heartbreak, I have decided that I am still going to Italy on day and that Holland is a stop on the way. So I have decided that while I am in Holland I will enjoy what it has to offer but one day I am still going to see Italy too ! Keep your head up as hard as it is and dont let it get you down. Beleive me, i know it is hard! Power in prayer- and we will be praying for you.

Linda & Mimi said...

You know that I have always admired your strength and your ability to find the good in any situation, but as I read the blog every day you amaze me more and more. We have every reason to believe that Jude has a special purpose for being here, you've said that from the beginning, and he has overcome so many odds already, and has done everything they have told you he may never do. He's a fighter, just like his Mom!!! STAY STRONG... and know that we are here for you if you, Mike or Em need us for anything.
Love you, Linda & Mimi

Reagan Leigh said...

I just want you to know that you are NOT alone. I can't even begin to tell you the love and support that I have gotten from other families with children diagnosed with Infantile Spasms. (If you get a chance, please read some of their stories, I have links to their sites on Reagan's blog.) Reagan was born completely healthy and we did not have any idea of her problems until 5mo. We are still struggling to get seizure freedom for her, but in the meantime she has become the sweetest most precious little girl we could have hoped for. Please don't give up on little Jude. He's going to surprise both you and his doctors with his resiliency!