Just a quick note to say that Carmen’s time is drawing near. She had a very, very rough day yesterday, particularly in the evening. We expected a rough night, but she was calm and peaceful. This morning she is very quiet and her breathing is slowing.
I can’t really think of anything else to add. Thank you for your continued prayers.
Carmen is very, very comfortable. We are still alternating morphine and Ativan and she is more peaceful than we have ever seen her. It’s impossible to know when she will take her last breath but for today, she is here with us.
I, on the other hand, am completely exhausted. I think I could fall asleep standing up. I am getting enough sleep. It’s emotional exhaustion. My mom (who happens to be a psychologist) always says that when you are under extreme stress, your body shuts down what it can. I think half of my brain has already shut down.
Dave…well, he’s full of energy. Today, I asked him to please go get Hope because I was passed out on the couch. He said sure and danced to the stairs saying, “Woo hoo! I’m Richard Simmons!!!” We respond to stress quite differently. When Dave gets stressed, he tries to lighten things up.
***
A few weeks ago, before Carmen got sick, I finally finished choosing and photoshopping pictures of Carmen’s life. I wanted to have the pictures all ready so that when the time came to plan her funeral, it would be easy to quickly make a slide show. Dave is now putting together that slide show. So many memories!
April 2007
Carmen update: There really isn’t anything new to tell you about Carmen. She is the same. We are alternating morphine and Ativan around-the-clock and she is very peaceful and calm.
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After three weeks at NY Grandma and Grandpa Camp, Lauren came home today. Tonight, we told her about Carmen. Dave and I both prayed and prayed for wisdom. Without some divine intervention, I didn’t know how in the world we would know what to say. Dave said he would take the lead and I gladly let him.
We sat on the couch and Dave said, “Lauren, you know that Carmen has a disease, Tay Sachs. And you know that Carmen is probably going to Heaven before the rest of us, right?”
Lauren answered, very seriously, “Yeah, I know that. Can we play Polly Pockets?”
Dave laughed a little and said, “Yes, we can play but first I want you to know that Carmen is going to Heaven soon. Probably within a week.”
Lauren’s sweet little face fell and she was silent. Finally she said, “It’s hard. I’ve always loved Carmen. Especially when she could laugh and smile. I’ll miss her.”
I could barely get this out but I said, “Lauren, the second Carmen gets to Heaven she will be able to laugh and smile again.”
Lauren replied, “No! Before that! The millisecond she gets there!”
I said, “You are right! What do you think the first thing is that Carmen will say?”
Lauren answered in typical six year old fashion, “My name.”
I asked, “You think the first thing Carmen will say is Lauren?”
“Yes.”
“I bet you are right!”
We changed direction a bit after that. We talked about Carmen going to Heaven now and us going later. Lauren said, “But it’s such a long time for me. Maybe 50 years before I see Carmen!” We agreed that, yes, it will seem like a long time to us but we will see Carmen again.
We ended our talk by praying together as a family. Dave thanked God so much that Carmen is part of our family and asked that we be able to keep her comfortable.
Lauren prayed, “Dear Lord, will you please tell Hope when she is older about Carmen so she will know who Carmen is when she sees pictures? Amen.”
Somehow we got through this conversation. I’m pretty sure God was sitting right there with us.
***
I have to share something sweet that happened today. Every time we have talked to Lauren on the phone over the past few weeks, she has asked if Hope is crawling yet. Each time I have had to say, “No, not yet!” This morning I told Hope that Lauren was coming home today so she was going to have to learn to crawl; her sister was counting on her. I got Hope up from her nap and set her on the floor. She saw a toy a few feet away, got up on her hands and knees and leaped forward! I couldn’t believe my eyes! She has been rocking back and forth on her hands and knees for a few days but this was the first time I saw her move forward. The rest of the day she practiced scooting/leaping/crawling around the room. At 6 months and one week, Hope is a crawler. Lauren is thrilled. 
Dear Family and Friends,
As you know, Carmen hasn’t been doing very well since last Saturday. A few nights ago Carmen once again spiked a fever and had 80% oxygen levels despite 5 liters of oxygen. She wasn’t able to tolerate her feeding and was breathing 86 breaths per minute. Since then, we have been giving her Tylenol and Motrin to keep the fever down and alternating morphine and Ativan to keep her comfortable.
Carmen’s life on this earth is nearing its end. As you can imagine, this is excruciatingly painful.
Yet, somehow, it is joyful at the same time. A few years ago we met with our pastor and talked through all that we were facing with Carmen’s disease. He said to us, “What a privilege you have been given to usher this child into the arms of God.” We keep thinking, Carmen, you are going to HEAVEN! You are going to meet Jesus! There are streets of gold and a mansion waiting for you. You will be able to run down those streets and laugh and play. You will be free from this disease. You will be WELL!
Amidst all our tears, we have a real sense of peace. But, we know that the next days will challenge everything we are holding onto. So, we ask God for the peace that passes all understanding, peace that we believe can only come from Him. Please, please continue praying that we can keep Carmen comfortable and that we end this journey well.
Thank you,
Dave and Lana
Carmen did OK last night. We shall see how she does today. Thank you for your prayers.
***
When Carmen was younger, she had a babysitter named Tina. Tina is an amazing young woman! On numerous occasions, Lana and I have said that we would love for our daughters to turn out like her when they are older.
Several months ago, we received a letter from Tina. Shortly after she sent her letter, I asked Tina if she would record herself reading it and then send it to be included in a short video.
Thanks Tina!
