Archive - August, 2010

“It’s hard. I’ve always loved Carmen.”

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.

***

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. :)

Peace That Passes Understanding

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

Letter to Carmen

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!

Very Sick Little Girl

Just a quick note:

Carmen is very sick. Yesterday she looked out of sorts and last night it hit. Carmen was on 5 liters of oxygen but still in the 80s for oxygen level. Her heart rate was in the 170s and breathing rate was over 55 all night. The night nurse alternated Tylenol/Motrin for fever that wouldn’t go down, gave her morphine to slow down her breathing rate, and stopped her formula because she wasn’t tolerating the food.

Please pray that we can keep Carmen comfortable!

The Top 10 Reasons I Donated My Wedding Dress

Yesterday, Dave and I cleaned out the garage. Dave and I have been on a cleaning, organizing, and donating rampage. Tay Sachs derailed my organizational tendencies and I am just now getting back on track. Anyway, there was a big, white box in the garage that we have been storing for 12 years and carting around through 10 moves. I looked at Dave and asked, “Is it OK if I donate my wedding dress?” Dave said, “Sure.”

Bye, bye wedding dress. You served your purpose well. I hope someone else enjoys wearing you as much as I did!

The Top 10 Reasons I Donated My Wedding Dress:

10. I don’t have too many fancy events to attend where a wedding dress would be appropriate attire.

9. I could s-q-u-e-e-z-e myself into it..if I lost 25 lbs. overnight (parasite? lipo suction?).

8. I don’t look good in white. I should have gone with red. Everyone looks good in red.

7. The likelihood that one of my daughters will wear it is very slim. They would have to 1) get married, 2) fit in it, and 3) want to wear it. I 1) got married and 2) fit in my mom’s but I didn’t want to wear hers (no offense mom!).

6. I don’t want to ask Dave to move it for the 11th time.

5. The wedding dress box says “store in a cool, dry area” and it’s been in the hot garage.

4. I’m not very sentimental.

3. Vera Wang herself did not make my dress.

2. My new motto is: if I don’t need it and am not using it, I should give it to someone who does need it and can use it.

And the #1 reason I donated my wedding dress:

My love for Dave is not dependent on whether or not my wedding dress is stored in the garage!

Love you Dave! Happy 12th anniversary!

Our Wedding Day

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