“You can be angry at what time you didn’t get with her, or you can be grateful for the time you had with her.”

That’s TOUGH.

But so, so, so true.

Sometimes I think Dave and I had it easier. Meaning we had such a long time to figure out how we were going to deal with Carmen dying. I think about people who suddenly, unexpectedly lose a child or a spouse. Or have a child kidnapped and never found. Or have a child who endures extreme pain for years and years. Carmen was unaware and unresponsive, a blessing to her. I don’t know…I just think that there are worse things. I suppose that’s helpful to me. Tay Sachs was BAD but it could have been worse. Yes, that is helpful.

I am grateful for the time we had with her but I do wish that we could have had a longer time of happy, healthy Carmen in this life. We really only had a few months, from 6 to 10 months, before Tay Sachs started taking over.

Death, dying and losing family and friends is easier to think about in the context of eternity. It’s easier to be grateful for a short time on earth when Heaven is waiting and eternity is a very, very, very long time.

Carmen, photo taken by Rashmi Pappu

Five years ago today we brought you home. I’ve been thinking about the series of events that led us to you and you to us.

Your mom and dad were in their early 20s, unmarried and living together. When your mom found out she was pregnant, your dad left. Poverty-stricken and aware that she couldn’t provide for a child, your mom placed you for adoption.

We don’t know what exactly transpired next but somehow you ended up in foster care under our lawyer’s guardianship. Your foster home was not a good one. When we first met you, your hair was a mess and your fingernails were long and jagged. You had horrid diaper rash and you were stuffed into a size 3 month outfit even though you could easily wear size 12 month clothes. The side of your head was completely flat from laying in one position in your crib (or possibly on the floor) all day. I still feel sad that your first 5 months weren’t so good. Especially since you had such a short life.

We received your referral even though we weren’t next in line. I’ve written about that before and I still get chill bumps when I think about it.

Your adoption paperwork flew through the system and we traveled to Guatemala to bring you home in early January 2007. You were just 5 1/2 months old.

When we landed in the United States, your paperwork was processed right there in Dallas and you became a citizen of the United States of America. I was so excited for you!

You know the rest. We came home to Maryland. You grew and learned for a few months. Then you started regressing. We found out you had Tay Sachs AB Variant and wouldn’t live very long.

It has helped me over the years to think about how you might view your life. In four short years you went from foster care in Guatemala to a family in America to walking the streets of gold in Heaven. We often struggle with thinking that life isn’t fair but I bet you are very happy with how things turned out!

I suspect that if we could get a glimpse of the beauty you see now, we wouldn’t be so attached to our lives here on earth.

Carmen, today is a day of celebration. We are sad that you are no longer here but we are far more happy that you were ours for a short time.

Five years ago, the journey of our lives began when you entered our home.

Thank you for being you.

Love, Mom

If Carmen had been a healthy little girl, she would have asked for her favorite birthday cake. Since she’s in our family, it probably would have been a gooey chocolate cake. Maybe Great-Grandma’s Chocolate Cherry Cake.

She would have woken up with a huge smile on her face and asked to open her presents right away. Lauren would have most definitely picked something sparkly and girly to give Carmen. We would have tried to find something Guatemalan to honor her heritage.

Turning five would have been a big year for Carmen. She would be heading off to kindergarten this fall.

The girls would have taken the school bus together. I’m sure Lauren would have been thrilled to have her younger sister joining her at school.

But, none of that was to be.

Instead, Carmen is spending her 5th birthday in Heaven.

And honestly, that’s the best birthday present anyone could receive.

***

Happy, happy birthday sweet Carmen! We miss you. We know you are having the best birthday ever and we are looking forward to the day when we can celebrate with you!

Love, Dad, Mom, Lauren and Hope

Photo by Sarah Mattingly

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

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/2011/02/thoughts-on-the-past-six-months/ http://www.beautifulcanvas.org/2011/02/thoughts-on-the-past-six-months/#comments Thu, 17 Feb 2011 13:39:25 +0000 Lana http://www.beautifulcanvas.org/?p=11621 Six months ago we were planning a funeral. How do I even describe the past six months?

We knew that life would be completely different once Carmen went to Heaven. But, knowing that and living it are two entirely different things.

We had three years to “prepare” for Carmen dying. And we did do a large portion of our grieving when Carmen was diagnosed with Tay Sachs at one year old. That was when all of our dreams for our little Guatemalan girl came crashing down. But, no amount of preparing really prepares you for loss. We still have to go through the grieving process.

In many ways, not having to take care of a medically fragile, terminally ill child is relieving. A huge burden was lifted off our shoulders. Carmen is in a much better place now and the reality is that we are too.

In so many ways we are re-learning how to live like the rest of you. It still feels strange to be able to go to the mall or the grocery store. I leave the house with my purse and a tiny diaper bag. I don’t need oxygen tanks and suction machines.

A few months after Carmen died, I went to my doctor and asked for an anti-depressant. I described how I was feeling: tired, unmotivated, overwhelmed. She said, “What you are feeling is completely normal considering what you have been through. I would be more worried about you if you weren’t feeling some of this.” I am happy to say that my little daily pill has given me the boost I needed. I feel like I am not only getting through each day but I am starting to enjoy each day a little more.

I think about Carmen often. Yesterday I was thinking about the possibility of a big move for us this summer and wondering how Lauren will feel about a new school. And it hit me that Carmen would be going to kindergarten this fall. Lauren and Carmen would be riding the bus to the new school together.

I wish so very much that Lauren had her sister. More than anything else, I grieve the loss of what could have been for Lauren and Carmen.

I haven’t finished writing about Carmen’s last few days. I started writing but nothing sounded right. I couldn’t describe the depth of emotion involved in watching someone leave this world. Perhaps I’ll start again. I think I’ll feel better, like the chapter is closed, once the words are written down.

I’m not sure I like the saying, “Time heals all wounds” but time does have a way of moving things along.

The one thing that always comforts me is to think that as hard as these past six months have been for us, they have been absolutely, positively amazing for Carmen!

I can’t believe I forgot.

I forgot the date but what if I forget more?

I worry that we will forget the impact Carmen made on us. I don’t want to go back to “normal”. In some ways I do. I want to be able to relax and enjoy life. But, I don’t want to forget all that Carmen taught us.

I don’t want to forget unconditional love, what’s really important in life and how fleeting life is.

Carmen didn’t have much time and yet she made a huge difference in our lives. When I think of Carmen’s life, I think of treasure in Heaven. She didn’t do much on purpose. But, her very existence pushed us to trust God more. I am certain she will be richly rewarded for just that.

I’ve got maybe 50 years left. What am I going to do to store up treasures in Heaven?

Four years ago we flew home with our new little girl. I was SO excited. I remember thinking, “Our lives are going to be soooooo different now!” But by different I thought life with two girls instead of one. And life with a child who needed a bit of help catching up developmentally. And life with a Hispanic child in our Caucasian household. Those issues didn’t seem insurmountable and I was up for the “challenge”.

Sometimes I think I have post-traumatic stress disorder. I am scared to make decisions now. Even exciting ones. Because what if they turn out really bad or hard? I wouldn’t go back and change the decision to adopt Carmen but I don’t want to go through something so painful again.

So, I am working through the grief and working through the stress. And trying to remember on a daily basis that I can give this all to God.

Carmen and me, 4 years ago in Guatemala:

We began our descent.
Still sleeping.
Wheels down.
Not a peep.
On the ground.
Silence.

As we made our way toward the gate, they welcomed us to Washington Dulles and announced the carousel number to claim checked bags, which apparently startled Eli from his slumber…and that’s when the real screaming began. Mortified, Eli’s parents did all they could to comfort an obviously exhausted and out-of-sorts little boy.
Nothing worked.
In fact, the greater their efforts to calm him down, the louder Eli screamed. At one point, the entire plane was watching.

I sat in my seat and that’s when it hit me.
I could barely hold back the tears…
…cause there are times when I would give just about anything to have a screaming four year old.

A short while later, I got into my car and drove home.
I cried on-and-off most of the way.
Thankfully, nobody was sitting directly in front of me.

1. When Dave takes out the trash, he remarks on how little trash we have. The one bag (or occasionally two) fits in the trash can. When Carmen was alive, we had three bags in the outside trash can plus several next to the can full of diapers, wipes, gloves, chux, medicine bottles, etc. Our trash is picked up twice per week. We had that many bags TWICE per week!

2. We haven’t seen the UPS or Fed Ex man in weeks. We used to see both of them several times per week, delivering supplies and medicine. In fact, we have run out of boxes. RUN OUT OF BOXES!!! When Carmen was alive, we broke down and recycled boxes every week and always had a stash waiting to be broken down. Now, when we need to mail a package, we can’t even find one box laying around.

3. Last week Hope and I went to pay the rent and I decided to stop at the mall. I haven’t stopped at the mall in years. We strolled around and found a pair of fancy purple slippers for Lauren and a Nike T-shirt for Dave. (The T-shirt was on clearance for $5. I love a great deal!) Running a quick errand or leisurely shopping were not things I did as Carmen got heavier and required more equipment and medical intervention.

4. We have days when no one comes over. For years we had therapists, nurses, and volunteers in and out of our home every single day. We miss some of them. (I will exercise restraint and not elaborate on the ones we don’t miss!)

5. We have privacy. We can run down the hall to grab a towel out the linen closet…naked! We can argue without being overheard. We can sleep with our doors open. We can turn down the heat at night without the nurses being too cold. We can crank up the AC without the nurses being too cold.

6. I feel a little anxious when someone asks how many kids I have. I always say three but sometimes I hope they don’t ask any more questions. I will always say three. Lauren says she has two sisters and one is in Heaven. (I didn’t say “we” on this one because I’m not sure how Dave feels about the kid questions.)

7. We haven’t seen the NY Grandparents in almost three months!!! This is a record. When Carmen was alive, one or both of them drove 6 hours to help us at least once per month. We miss you guys!

8. We don’t have an explicit purpose like we did when Carmen was alive.

9. We don’t have a specific schedule for every single day: medicines, vest treatment, diaper change, medicines, feeding, diaper change, medicines, vest treatment, nebulizer treatment, etc.

10. We don’t have Carmen. We know where she is and we know we will see her again but she is not here.

I’ll be honest and say that life is much easier now. Much easier. And I wouldn’t bring Carmen back. I wouldn’t ask her to leave the magnificence of Heaven and her perfect body. But, I miss her little sighs and those ridiculously long black eyelashes. I miss having three girls.

***

Thanks so much for all of your birthday wishes! I had a wonderful birthday. Thirty-five is just a number and I can think I’m still 20 if I want to!

Lauren helped me with the actual voting by pressing the touch screen and ejecting the voting card.

On the way home she said, “I thought voting would be like a court. They would say, ‘Raise your hand if you want to vote for this dude!’” That would have been WAY more fun than the touch screen!

Today she proudly wore her “I voted” sticker to school.

Speaking of who we voted for, our candidate did not win. We voted for Robert Ehrlich for governor of Maryland. An interesting tidbit about Ehrlich — he wears a Connor’s Way wrist band. Connor’s Way is a charity named after a little boy named Connor who had Tay Sachs. (We know Connor’s family as they live here in MD as well.) The purpose of the charity is to raise awareness about Tay Sachs and testing for Tay Sachs. Ehrlich met Connor and was so inspired by his life that he promised to wear the Connor’s Way wrist band. Here’s a link to an article about Ehrlich’s wrist bands.