Monday, November 24, 2008

A Very Good Thanksgiving I know that Thanksgiving hasn't even gotten here yet but we are having company and my life's too hectic to chance missing posting that day. I ran across a story/poem today that exactly fits to how I've felt since February. Every Thanksgiving I try to find one thing to focus on being Thankful for. This year...I'm thankful for Holland.

byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley.
All rights reserved
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 guide books and make your wonderful plans. The Coliseum. 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 guide books. 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 than 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 windmills....and 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, ever go away...
because the loss of that dream is a very 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.

Wednesday, November 12, 2008

Sweet Elise

Elise had a project for school that included decorating a paper turkey any way that you want. A couple days after that assignment was given, the teacher came back and said that she wanted a story about the turkey. Elise had already decided to decorate her turkey like a heart surgeon. Here is her soon I promise!

Dr. Fraser-gobbler was wandering around the operating room when a baby turkey was brought through the door. His name was EJ. EJ had congenital heart defects. This means that EJ's heart did not form correctly and that he needed surgery to fix it. Before EJ was born, his mom had a lot of tests to see if EJ's heart could be fixed. Dr. Fraser-gobbler was the best pediatric turkey heart surgeon at Texas Turkey Hospital. He said that EJ's heart would be hard to fix but that he would try. EJ's surgery lasted 9 hours. EJ was put on a special machine called the heart/lung bypass so that Dr. Fraser-gobbler could fix EJ's heart. During EJ's surgery, Dr. Fraser-gobbler got a nurse to call teh waiting room to tell his family how the surgery was going. EJ's family was very nervous but was happy that EJ's heart would soon be fixed. After EJ's surgery, he stayed in a special part of the hospital called the CVICU. The nurses took good care of EJ. His family stayed with him as much as they possibly could. After only 4 1/2 days, EJ got to leave the CVICU and go to a regular room on the 15th floor. After only three days in this room, EJ could leave the hospital. He had to stay in Gobbletown for another week, but then he could come home. I am very happy that Dr. Fraser-gobbler fixed EJ's heart because he is my little brother.

Okay...without me crying like a baby over this sweet story again. I would like to point out that she asked me for some technical terms, explanations, and timeline questions, but she wrote the meat of the story herself. What an amazing, sweet child she is. I am so pleased that she is using this opportunity to tell people about her brother. I can imagine that it is wonderful therapy for her to get it out. I know this blog has done wonders for my mental health. The prophet was so right when he told us to journal. It is a mental health thing.

Tuesday, November 11, 2008

Back to Houston...

Yesterday we went back to Houston...but for Nolan. Whew!!! Felt so good to not have to go into the West Tower of Texas Children's when we were down there...I don't even think that I looked at it. Nolan had an ABR yesterday...which is basically a sedated hearing test. He has minimal hearing loss in both ears that could possibly be from his ear tubes. He is starting to jabber talk a lot more and is starting to try to form words. Ethan continues to do well. I was asked to bare my testimony last Sunday on thankfulness. I was nervous but a small part of me was grateful for the opportunity. This is the first time that I have given my testimony that I was not uncertain about any aspect of that testimony. I know that Heavenly Father has given me so much more than i can ever begin to repay Him for. I've always known that I guess, but it has taken this experience to really drive the point home. I can never repay what I have been given. I can only be thankful for the many blessings that I have been given and continue to come. To show my thanks, I can strive to be more Christlike. I am looking for ways to show my Heavenly Father my gratitude. I am more forgiving now. I try to give the benefit of the doubt. For people that have wronged me in the past and have not and will not apologize, I am trying to not hold a grudge. Those grudges aren't going to make them apologize and getting even is just going to make me feel worse. Besides, my big brother already paid the price for my hurt feelings. So I am free to let go of all of that mess and have joy. I have so much to be thankful for this Thanksgiving season. Why mar it? Now that you have read/listened to the ramblings of someone who has a hard time focusing on one subject, I hope that you all will give thanks to our Heavenly Father continuously...because we can never say thank you enough for the blessings he has given us...

Tuesday, November 4, 2008

Home at last...

Ethan and I had a fairly uneventful follow up visit today. He is looking good and got the go ahead to come home. He slept most of the way home and woke up hungry (shock shock...the boy is always hungry). We got home at 2, just in time to surprise Elise and Craig when they were picked up from school. They were so excited to have momma home. This whole evening has felt so different from normal, but very normal if that makes sense at all. Craig summed it up well on the way to pick up Elise. He snuggled next to me in the back seat of the car (I was crammed between him and Ethan's car seat) and said, "Momma, I love Ethan not having to be at the hospital anymore." I love it too.

Monday, November 3, 2008

Follow up visit!

Originally Ethan's post op follow up visit was scheduled for this Friday. I called Dr. Altman's secretary Friday and told her that I would love to have that date moved up to earlier this week if possible so that I would be allowed to leave Houston in time to go to Elise's carnival this Thursday. I also played the "I haven't spent a whole lot of quality time with my older kids and haven't been home in over a month" card. It worked! They are going to work me in to the schedule tomorrow between 11 and noon. Depending on if Dr. Altman thinks that Ethan needs to have another echo we should be on the road home no later than 5:00 tomorrow evening. We aren't going to tell the kiddos for two reasons. 1. If something prevents us from taking Ethan home tomorrow the kids (especially Elise) would be crushed and I don't want to have her feelings hurt. 2. I love surprises...especially when I am the one doing the surprising. I feel like it is Christmas! I can't believe that I'm actually going home! I feel like a new person because so much has happened since I brought Ethan down here. I'm going to have to get to know my kids all over again. I can't wait!

Saturday, November 1, 2008

Daddy's in Town!

Richard came down today to spend some time with Ethan and me. We were able to drive up and walk around the temple grounds with him and visit for a while. We are going to watch a movie in a minute but I got a call from a friend asking if there was a reason why I haven't updated the blog today. Since I was making her nervous, I thought I better get in here. Ethan is doing great. You would not know that he has ever had even a sniffle by looking at him much less open heart surgery. We truly are blessed.

Please continue to include Eron and Cody in your prayers. They are being felt as a huge sense of calm during this sad time.