I’ll jump right in and say that after praying and seeking wise counsel, Dave and I made the decision to stop Carmen’s feedings and hydration. We based that decision on the sad reality that Tay Sachs had destroyed Carmen’s body. She was going from one sickness to another, with shorter intervals of “wellness.” We always felt that our number one priority with Carmen was to keep her comfortable. If we weren’t able to do that, we had to change her plan of care.

The night before we stopped her fluids, she once again spiked a fever, struggled to breathe and could not tolerate her feeding.

Dave and I talked and talked, trying to reach a decision about what to do for Carmen. Dave said, “My biggest concern about stopping Carmen’s food is that you will live with guilt. Carmen will be just fine. She is going to Heaven. You are the one I am worried about.” I replied, “Well, I’m going to feel guilty either way. I’ll feel guilty if we stop her food but I will also feel guilty if we keep her alive because this is not fair to her. I would not want to live this way.”

We knew that once all fluids were stopped, Carmen would have a week or two to live. Carmen’s Hospice nurses gave us all the information and advice we needed to keep Carmen comfortable during those days.

The first few days without fluids, Carmen was incredibly comfortable. In fact, she breathed easier and appeared more relaxed than we had seen her in years. This was no surprise to Carmen’s Hospice nurses as they had long said that the very act of digesting water, Pedialyte and formula was taxing on Carmen’s body.

As the days passed, we gave Carmen Ativan and morphine occasionally to keep her breathing relaxed.

Even though Carmen was doing quite well, to be perfectly honest, I felt like I was going to explode from stress. Watching and waiting for someone to die is an experience I really can’t describe. Dave and I had thought we would like to be alone as a family during Carmen’s last days, with the help of the Hospice nurses and private duty night nurses. We changed our minds about that! You just never know how you are going to feel in such an unimaginably stressful situation. Dave called his parents and asked if they could come down to be with us.

As they had so many times before, Dave’s parents said absolutely and drove from New York to help.

A few days in, Carmen spiked a high fever. Despite being on 5 liters of oxygen, she was breathing 80+ breaths per minute. (We breathe about 12 breaths per minute. 80 is fast. I would pass right out if I tried taking that many breaths in one minute.)

We gave Carmen Tylenol, Ibuprofen, Morphine and Ativan around the clock, trying to keep her comfortable. That night, we did not have a night nurse, so we decided to take shifts to care for Carmen. Dave’s mom offered to go first. She was going to stay up until 1am and then wake one of us to take over. She woke us at 6am. She stayed up all night, taking care of her granddaughter. I have a truly wonderful mother-in-law.

This is strictly a mother’s vanity, but I was so very worried that Carmen would lose a massive amount of weight in her last days without hydration and look gaunt and like a skeleton. She did lose some of her puffiness, which made her look more like the Carmen before Tay Sachs took over her body. She was still beautiful and rather chubby!

God never failed to give us signs of His love and ultimate control over every aspect of Carmen’s life.  He continued to give us assurance in her death. One night during Carmen’s last week, Dave had a dream in which a man came to him and said, “Don’t worry, Selam will be here when Carmen dies. Selam’s sister has told her to be strong.” The following morning, Dave told me what he had dreamed. Of course, I wanted to know what the man looked like but he couldn’t remember!

Selam worked the Thursday, Friday and Saturday night nurse shifts, so we knew that Carmen would die one of those nights.

Thursday night came and Selam stayed on our main floor with Carmen because I was nervous about Carmen being in the basement room we had set up for her a few weeks prior, so far from us. Carmen was not in any sort of distress and by this time, we were giving her medication around the clock to keep her comfortable with extra orders to give more medication as needed. But, I still felt like I needed her close. She slept in her chair and made it through the night just fine.

Friday night came and Selam again stayed on the main floor with Carmen. She sat on the floor next to Carmen and gently stroked her hands.

Saturday night came. Dave felt that Carmen might be more comfortable in her hospital bed so we moved her back to the basement for the night. I checked on her before I went to bed around 10:30pm and I told Dave that she sounded different and that I didn’t think she would live too much longer.

Because Selam and Carmen were all the way in the basement, we gave Selam our cell phone numbers and asked her to call us the second she thought Carmen might not be doing well and we would run down from the top floor.

I went to bed and for the first time in nine days, I begged God to take Carmen. I couldn’t handle the waiting and watching anymore. I wanted her Home.

Shortly before 1:30am, Selam called Dave’s cell. Carmen’s stats had gone down. She was hesitant to wake us because immediately after the stats went down, they went back up but she thought we should come check. I was asleep in Hope’s room so Dave decided not to wake me unless Carmen was really not doing well. He ran downstairs. About a minute after he reached her side, Carmen took her last breath.

At 1:25am on August 15, 2010, Carmen went to be with Jesus.

She looked so peaceful. The stress was gone.

I had always said that I wanted to be with Carmen when she died. I wasn’t. I have to trust that God spared me from that time for a reason. I am so very thankful that Dave was by her side when she left this earth and went straight into the arms of her Heavenly Father.

And I am so very grateful that it was Selam who took care of Carmen at the end. I have never met a more peaceful and dedicated person. No one could have displayed more compassion and grace than Selam did that night.

Dave’s parents came downstairs and we all sat around Carmen. I called Carmen’s Hospice nurse and the nurse on call came out to pronounce Carmen. She called Carmen’s pediatrician, who wanted to know when Carmen died, even if it was the middle of the night.

Dave woke Lauren so that she could say goodbye to Carmen. She couldn’t say goodbye, she just cried. Dave took Lauren back upstairs to bed. You can read about their beautiful conversation here.

The funeral home director came to take Carmen. He handled the situation with dignity. I know we answered a few questions but I don’t remember much else. I do remember the kind man looking at Carmen and saying, “She is free.”

I never, ever thought I would see my child zipped up in a body bag.

As the funeral home director took Carmen out of her basement room, Dave had the presence of mind to run back upstairs to make sure Lauren didn’t look out her window or come downstairs and see her sister being taken away. Lauren was walking down the stairs. Dave was able to stop her and take her back upstairs before she saw her sister in a body bag. Once again, God showed his tender loving mercy. He spared Lauren from seeing something so very painful.

Everyone left and we went back to bed. It was just 3:30am. Only two hours had passed but it seemed like ages.

I lay in bed, thinking surely I would not be able to sleep. As the tears poured down my cheeks, I kept seeing Carmen in Heaven. She was standing up, the air gold and sparkly around her. A ray of light was shining right on her and she was looking around in awe. She had a huge smile on her face.

For many months, this was the only way I could envision Carmen. God took whatever guilt I thought I would live with and gave me a beautiful vision of Carmen in her eternal body. How could I feel guilty for letting her leave her broken Tay Sachs ridden body when something so wonderful was waiting for her? I do not feel guilty.

I cried not because she was gone but because she was whole. She was finally HOME.

Flowers from Carmen’s pediatrician’s office

I don’t think I ever shared the minivan story.

We were out and about on Cape Cod– I think shopping– and I had to go to the bathroom. Dave dropped me off at some store (can’t remember what store) and stayed in the minivan with the girls. I ran in, ran out and hopped right into the minivan.

Except it wasn’t our minivan.

And the man in the driver’s seat was quite surprised.

He looked shocked, I must have looked shocked, and I said, “Oh hi! This is not my car!” and jumped right back out.

The man laughed. But not as hard as Dave who watched the whole thing. Our minivan was facing Mr. Surprised’s minivan.

The moral of the story is: 1) Toyotas are everywhere. 2) Our next car is going to be hot pink, not beige.

NY Grandma, this is confirmation that red was a great color choice for your new car!

For full disclosure, this picture was taken in the spring after the van had been washed. Our grass is not this green right now and our van has far more dirt character.

Various supplies are going to Guatemala, one piece of equipment went to a family in Israel with two children with Tay Sachs, and the bath chair and another stroller are going to families with special needs children in our area. The Kid Kart was the last piece of equipment in our home.

It was quite a journey.

Quite a Journey

]]> http://www.beautifulcanvas.org/2011/03/quite-a-journey/feed/ 7 http://www.beautifulcanvas.org/2011/03/a-random-post-for-saturday/ http://www.beautifulcanvas.org/2011/03/a-random-post-for-saturday/#comments Sat, 05 Mar 2011 13:37:56 +0000 Lana http://www.beautifulcanvas.org/?p=11864 1. I signed up for a Saturday morning women’s small group. We are going through the book Be Still My Soul by Nancy Guthrie. Today is the first meeting and I’m excited. Nancy’s story is a sad one and one that I can identify with in many, many ways. She lost two of her children to Zellweger’s Syndrome, a disease similar to Tay Sachs but much faster acting. And one of those children was named Hope. In the preface, Nancy writes this,

Few of us get through life without having the winds of difficulty blow through our lives at some point — cold and unrelenting winds that threaten to knock us down for good. And when the winds of suffering blow in our lives, what we need most is something secure to tether ourselves to, something strong and unmovable that will keep us from being swept away in a storm of questions, fear, discouragement, and disillusionment.

I think this is going to be a great study!

2. Things disappear and reappear in the strangest places when you have a 13 month old on the move. Like camera lens caps in toy grocery store carts.

3. Poor Lauren. She kindly gave Hope a lick of her frozen chocolate fudge bar. Hope left a piece of half-chewed tomato on top of the bar (Hope tends to store food in her mouth). Ewww! The things big sisters have to put up with!

4. Speaking of Lauren, I was looking through some old pictures yesterday and found this one from March 2008.

A princess at Disney!

5. I love American Idol. Seriously, it is my favorite show. I’ve watched since Season One, only missing a couple of shows here and there. I can count on one hand the number of Christian songs that have been sung during the competition. So, I was super excited to hear Stefano sing “I Need You Now” on Thursday night. Here you go:

6. Have a great weekend!!!

I promise to try to take some non-chair pictures of Hope in the next few days!

P.S. The hair is finally growing in!

Me: Lauren, you need to eat your chicken.
Lauren: I can’t! It’s terrible. It’s awful! I’ll die.
Me: Stop arguing and eat your chicken.
Lauren: Mom, I really can’t!!!! I’ll throw up.
Me: Fine. You can go live with someone else for a while and see what kind of food they make you eat. (Maybe not the best parenting strategies going on here.)
Lauren: Mom, no!!! I want to live with Hope!!!

Hmmmmm, I see where Dave and I stand!

***

The following occurred the morning after I got a nice, new haircut. I hadn’t brushed my hair yet and apparently I was a sight to behold.

Dave: Wow, your hairdresser did a great job on your hair!
Me: Ha, ha, I haven’t brushed it yet.
Lauren: Mom, your hair looks like a wild horse!

Children have a way of keeping us humble.

***

Lauren came home from school and told me that she had participated in a jump rope competition. She pulled out her jump rope to show me her skills.

Me: I didn’t know you could jump rope like that! Great job!
Lauren: What kind of kid do you think I am???!!! Of course I can jump rope!

Lauren does not lack confidence. She is a wee bit like her daddy!

Today at lunch Lauren is going to find the following. I would love to hear her giggle!

***

I love, love, love to read. I have stayed up many nights, reading until the wee hours of the morning. I always regret not going to bed earlier when I can barely function the next day. But, it doesn’t seem to stop me from reading half the night the next time I pick up a good book.

Dave also loves to read. He usually has four or five books that he is working through. The stuff he reads boggles my brain. I read to escape. Dave reads to learn.

Lauren has recently decided she likes to read. She reads while walking down the stairs. She reads while eating breakfast.

This picture cracks me up. We are NOT morning people around here! Looking grumpy and half-asleep at 8:30a.m. is normal for us!

So, today’s More About You Monday question is: What was the last book you read? What motivated you to read it?

I do have one fancy chicken dish. At least, I think it’s fancy!

It’s super easy too.

Prosciutto Goat Cheese Chicken (Even the name is fancy! )

Raw chicken breast tenders
Goat Cheese (or Feta)
Prosciutto
Butter

Place a slice of prosciutto on a cutting board. Put one chicken tender on top. Sprinkle (or dump if you like lots) goat cheese or feta on top of chicken. Wrap prosciutto around cheese, overlapping to make sure it stays inside. Saute chicken in butter until done. Yum!

My nephew, Dakota, is on his way to a food blog with this fancy version of Mac & Cheese.

Random Integer Generator

Here is your random number:

16

Nancy in the Midwest, you will be receiving the “How Great Thou Art” wooden plaque.

On that trip, I bought wooden plaques of “How Great Thou Art” and “It is Well With My Soul”. These are my two favorite hymns and I was so excited to hang them on our wall.

Fast forward five years. Dave, Lauren, Hope and I went to Lancaster, PA for a few days after Carmen died. We went to King’s Acres. And what do you suppose I bought? A wooden plaque of “How Great Thou Art.”

I am getting old. I forgot I already had that plaque.

So, because I am getting old and forgetful, I am giving away one of the plaques.

Today is my brother, Micah’s, 21st birthday (another reminder that I am getting old). Leave a happy birthday message to Micah in the comments section and Thursday we’ll randomly choose a winner of the plaque!

HAPPY BIRTHDAY MICAH!!!!