Sunday, April 27, 2014

Coincident or God?

Last year, sometime in the fall after Amy had died, I purchased two solar angel lights. One for the cemetery and one for the little space of ground outside of Amy's bedroom window, now Bill's and my bedroom. It is a big picture window and I can see where I planted the bulbs that were given as gifts after Amy left us and it is always where I had a little grouping of dwarfs for fun.  There is also a large statue of a little girl with butterfly wings. She could be a fairy or an angel. I just thought she was adorable and bought her quite a few years ago.  Easter Sunday morning, we got up early for sunrise service and the solar angel was still lit up. I was so surprised as it has never lasted all night before. Coincident? I looked at it and smiled and said, "Happy Easter, Amy, Jesus is Alive, He lives!" 

During the Easter service "I Will Rise" was one of the specials, sung by a couple that I am sure didn't know it was "Amy's song."  Of course it brought tears, but how sweet it was to hear it and imagine Amy singing those words.  Coincident?

Coming back from town this week I decided to stop at the cemetery. I didn't have the radio on but decided to turn it on just a few miles from the cemetery. No voices, no announcer, but just the beginning notes of the song, "I Will Rise." I sat in the car and listened to each word and then started to sing it softly. It was quiet after the song ended and I turned off the radio quickly and walked over to Amy's grave. Was this just a coincident also?

I don't believe in coincidences.  I believe in God.

I choose to believe that God was comforting my soul. 

This morning in Sunday School we started a series of videos by Ann Voskamp. I read Ann's book, "One Thousand Gifts, a dare to live fully right where you are," about four years ago. I never knew in just a few short years that Amy wouldn't be with me anymore. This book made such an impact on my life, and I started my own 1000 gifts list of all that God had given me. Everyday I would jot down a few, sometimes 10 or more if it was a day where my heart saw the gifts God was giving me. I had reached over 2000........
and then Amy got sick.......... 
and then she died. 
I quit writing down my gifts. 

I came upon my little book of gifts when we moved our bedroom downstairs into Amy's room.  I flipped through the pages. At that time I did not feel thankful and I don't remember what I did with it. In my grief I might have thrown it away. I hope not. I know that Amy's name was on quite a few of the  pages as one of the precious gifts that I was thankful for.

This morning during the video, I decided I want to start again. 
I want to physically write down what God has given me to be thankful for.  In the act of writing it down, it helps affirm in my mind that I am truly thankful for that special gift.  
I glanced down at the napkin I picked up with my cup of coffee. 
On it was a beautiful butterfly. 
Gift 1: butterflies on napkins

Saturday, April 19, 2014

Amy's Song

     On the anniversary of Amy's funeral, April 13th, my sister and my niece posted this picture on facebook.  My niece added this message:
"Words can't express how much this picture means to me. Its one of those rare opportunities when everyone I love so dearly were gathered in one spot. Although I wish it was under different circumstances, this is one of my favorite pictures of my whole life."

 My sweet parents are in the middle, my two sisters with their families to my left, my own family to my right and my dear sister-in-law (who has always been like my own sister) is to my far right. I've got my eyes closed and a small smile on my face.  The last time we were all together was almost 10 years before for my parents 50th anniversary.  Three more children had joined the family, and now one was missing. 

 One was precious Amy. 

 Even though we are all together, I will never frame this picture or display it. I see smiles, but I only feel sorrow. Isn't it strange how the outside of the face doesn't always show what is in the heart?

A few days ago my sister posted Chris Tomlin's "I Will Rise." 
Even though most refer to "Amazing Grace, My Chains Are Gone", as Amy's song, in my heart "I Will Rise" is truly Amy's song. This is the one she wanted to sing, that came from her heart. I wrote about this on July 27, 2013.

As I was listening to it one more time, I seemed to hear it anew. Amy doesn't have any sorrow or pain anymore. She is hearing the angels sing, "Worthy is the Lamb," 
She is singing..........
How can I be sad? 
My Amy is singing! 
She doesn't have anymore pain! 
She is happy! 

I have reason to rejoice this Easter!

To listen to Chris Tomlin sing this song, click on the link below.
I Will Rise
And here are the words.

"I Will Rise"

There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,
"Worthy is the Lamb"
And I hear the cry of every longing heart,
"Worthy is the Lamb"
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

Happy Easter to all who all reading these words. I truly hope you can say, as my Amy did, that when your time on this earth ends, you will hear Jesus call and you will rise and worship Him.

Friday, April 11, 2014

I am always on God's mind.

Our family went to the cemetery on the anniversary of the day Amy died. Bill and I, Tess and her new husband,  Emily, and James and his wife, Laura. Tess was in charge of getting some helium balloons for us all to release. She brought 8. One for each of us and one for the baby that Laura is expecting. This little baby will never know his/her Aunt Amy, but only by pictures, stories we tell, and the "things" Amy has left behind.  Here is what Amy's grave looked like on the 8th.


 The crocus bulbs we mass planted on her grave before we put the grass seed on are coming up and blooming. In a few more days it should be covered with blooms.

We all sang a verse of "Amazing Grace, My Chains Are Gone" and then let our balloons go. It was windy, but the wind had stopped for just a moment and the balloons went almost straight up so very high, almost as if they were flying straight up to heaven.

Last year I posted this on my facebook page on this very day. 

April 11, 2013

We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed.

2 Corinthians 4:8-9

Thanks to our Lord and Savior, Jesus Christ.

I can still say and believe those words today. I am learning to live without Amy. I will always have a hole in my heart and life but I must go on and learn to live the life God wants me to live. I know He loves me and is always with me. 

Tuesday, April 8, 2014

One year in heaven, April 8, 2014

Amy  has been in heaven, in the arms of Jesus, for one year now. 
I wonder what time is like in heaven. Has it seemed like just a few moments to her or does time even seem to exist there? 
I know it has seemed like a very, very long year for me. 
My life has changed so dramatically in just one year. Sometimes I feel like I have no purpose anymore and then other times I feel like I have the freedom to pursue things that I couldn't if I was still taking care of Amy.  I trust in God and lean on Him for His wisdom to tell me what the next thing is that I am to do with my life. But after a year, I still don't feel like I have direction. That is okay. I will still wait on His leading. Bill and I started working in the church nursery a few months ago.  We are in there once a month and I enjoy it immensely. Seeing how fast the babies grow a month at a time is amazing. One little boy that has given me such joy over the last year just moved up to childens church this past Sunday! 
I have signed up to help with a week of VBS this summer and I told our music leader to pray about me singing for worship again. That will be a big step, but I love music, as did Amy, and I love to worship God with music. 
Maybe that is all God wants me involved in right now. I don't know. 
The last few days have been extremely hard, remembering what was going on last year at this time. I didn't keep a journal, as I'm not one to journal, and the journal we did keep was just for each other to know of the drs. and nurses comings and goings and the record of how Amy was doing that day. So I only have my memories to remind me of what happened April 6-8 of last year. 
I know I have already blogged about some of the events of Amy's final days. I started to read through my posts again to see what I have already shared, but it became to painful and I could feel myself spiraling downward, so I stopped reading. 
I will just tell you what I remember the most and if it is repetitious, I apologize. 

So to continue....
Friday we were to bring Amy home to live out her final days. I only remember one person visiting that morning and it was a doctor who is a friend of the family, he is a specialist and wasn't on Amy's case. I tearfully asked him is it was right to withhold food and water and starve Amy to death. I'll never forget his words, because they bore into my heart. He asked me how much she weighed. (He was aware of her age.) And then he simply said, "You are starving her to death."  I know she was so terribly thin and only getting worse as the years went by, but she was so happy and not sick very much. But I realized what he was saying and I knew what we were doing was right. 
We decided to bring Amy home in our van, so she could sit up and see the beautiful early spring weather we were having. The grass was green, the birds were in abundance and the daffodils were blooming.... a beautiful vibrant yellow against the browns of winter and the fresh green of spring. I foolishly thought that we might take Amy to church Sunday or even out for a drive instead. She wouldn't need to be hooked up to her feeding tubes, and we had portable oxygen. I just knew how much she liked to go places. But I didn't realize how weak she would be. The doctor said it could be a few days or a week and so I set my heart on a week.
It was to be her last ride in her beloved van. 
Hospice was out. New people, more papers to sign. They took away all the "stuff" that had to do with her feedings. One less machine in Amy's room and the horrible reminder that she couldn't eat.  Some people stopped by that night who would often sing in Amy's classroom. They wanted some bushes or something to do with the nursery.  They had no idea about Amy.  So they came in and talked to her. It was the beginning of sharing my last days with Amy with other people. I have said before that I am not a people person. I would have been fine if it was just the family for Amy's last days.  But Amy was a people person. And she loved parties! 

Saturday we were able to get Amy cleaned up and ready before our first visitors came. Almost everyone came with a gift for Amy, flowers, balloons, cards, stuffed animals, a fairy garden, even a special bracelet. Amy was so happy. She didn't have much strength to smile, but I could see it in her eyes. That evening we had a family party for her. We had candles on a cake, even though she couldn't eat any, she loved candles! Amy never really liked cake anyway, but she loved the singing and the candles. We always did it for every family members birthday.  
We have not had candles or singing in the last year.
Another thing Amy loved was to watch movies. I had gotten her a special movie for her birthday and so after supper we started watching it, but I knew Amy was getting so tired, so we stopped it. We finished watching it the next evening. I will never watch that movie again.

Sunday. I knew going anywhere was out of the question as Amy was so tired. My girls even said that they didn't think it was wise because Amy looked so bad. I didn't think she looked ill, I just could see how tired she was. (I never realized how bad she looked until I saw pictures of her later.)   The family all stayed home from church and we had our own little service in Amy's room. We sang a lot of her favorite songs. James played the guitar. We read some Bible verses and just spent time together. We had visitors again Sunday afternoon. Some who stayed too long, but I didn't have the heart to tell them to leave. Amy had touched so many peoples lives and she enjoyed people, but I selfishly wanted the time she had left. 
I never had to worry about food. Friends had brought stuff in. My sister had come right away from about 5 hours away because I told her I needed her. She helped organize the food, get it out for people, answer the phone and mind the door. I will never be able to thank her enough. 
That evening Tess felt that Amy's time was going to be soon.  I couldn't see that. You would think as a mom, I would know. I don't think I wanted to see it. I wanted more time. I wanted another day or two. My daughters and I  took turns snuggling with Amy in bed while the others would try to sleep in the chairs in her room. I don't think she slept. We each sang softly to her. We talked some. We dozed. Bill came in early and sat beside her also.  Finally morning came.

Monday morning a dear friend of mine came and visited for a few minutes. Hospice came and confirmed that it wouldn't be much longer, maybe a day at the most. She also told me something that I will always remember. If a person dies with their eyes open, you cannot usually shut them, like they do in the movies. She also told me that her breaths would become slower, but her heart would beat faster. I'm sure she told me other stuff, but I don't remember.
Our Assistant Pastor came and sang for Amy one last time and just a little while after that while we were wahing Amy's hair, her lips started turning puple.  We got her back in bed and called for her Daddy and brother right away and we all gathered around her. I was in bed with Amy, holding her and Tess was on her left. Beethoven's Ninth was softly playing. We were praying, talking about heaven, and then were just quiet. Her Daddy kept saying, "It's ok, silly. (His pet name for her.) It's okay."    and her breaths became more shallow and farther apart. And finally no more......

Tess wanted to take her outside, to feel the sunshine. So she gathered her up in her arms and took her outside, among our flowers, the birds singing and the sunshine. 

Hospice was called. They had to come out and confirm death and be present when the undertaker came.  One of the girls was nice and quiet and the other couldn't stop talking. That was annoying.  They had to take all of Amy's prescription drugs, and we waited. Finally the undertaker came and he was so nice. He let me put Amy on the gurney and they took her body away. 

I wish I would have had more time with her, but yet I know she wasn't there. She did die with her eyes open and the whites of her eyes were turning grey. But she was still my baby. Why didn't I hold her longer? Feel the waning warmth of her skin? Why was I so ready to give her body to them? I just know that I wanted them all to leave, but that meant taking Amy with them............but it wasn't Amy anymore. She was already dancing with Jesus. 

Another email was sent out:
April 9
Many of you know already that Amy is now with Jesus. She died peacefully in my arms, yesterday around noon. The whole family was around her as she took her last few breaths. She opened her eyes and beheld her Lord and Savior and is now free of her earthly body. Her last few days were filled with smiles and laughter, many visits of those who loved her, singing and prayers.
We continue to ask for prayer as we go through all the necessary "things" that have to be done. We are planning her service for Saturday to "Celebrate her life", not to say goodbye, not to be solemn and sad (although there will be tears), but to be joyful and happy for her as the service will reflect many of the things Amy loved in this world. Pray for family as they travel in and for our peace as they leave and it is just "us" here in this big old house. Thank you for the many prayers that have already been prayed for us. God has kept us strong and sane and I know He will continue to do so.

Love, Cheryl and Bill

Tuesday, April 1, 2014

March 30, 2013 to April 5, 2013

Day 31, Saturday, March 30, 2013
After having the nurses come on Thursday night and Friday morning we enjoyed the peace of the weekend without someone interrupting us. The nurse on Friday morning had told us all the worst things that would happen at some point with a trache and a PEG tube. I was a little overwhelmed on Saturday and I wrote in the journal that it was a sad day for me. I don't remember all the details except that I felt so sorry for Amy to be confined to the house for the next few months. Spring had come early for us after all those snowy days in the hospital and I wondered how we all would get by.
Amy slept quite a lot that day. I knew she was so tired from her days in the hospital. She didn't need suctioned, but seemed tight and not able to cough. Tess came in the afternoon and to spend the night. Amy had a lot of gas, so we called the nurse and they planned to order Pepcid for her on Monday.

March 31. Easter Sunday
I don't remember who all went to church that morning, but I know that Tess and I were home. We had planned on possibly letting Amy sit outside for awhile that day just to get some fresh air, but while we were getting her ready that morning she threw up and it came through the trache also. It was around 11am on Sunday morning. I called home nursing, our local hospital, the large hospital we had been at for a month and I was only able to leave messages.  Finally I called 911 and had the ambulance come out. They didn't do anything (didn't even take her vitals) but advised we let her rest and call if she got any worse.  Her heart rate was up and she was breathing faster.  Our Assistant Pastor and his fiance stopped by as she is an RN; they advised us to take her to the ER. By then it was 3:30 and the home health nurse was to come at 4:00. She still wasn't here at 5:00 so we decided to call the ambulance back and took her to the ER of our local hospital. (The home health nurse called from our house at 8:10 wondering where we were!) Diagnosis: possible aspiration, kidney blockage with backed up food. Amy's white count was 3 times the normal and she had fever, a fast heartbeat and respiration. The hospital didn't want to admit her unless we would sign a living will for her saying that we didn't want her resuscitated. As Amy's legal guardians Bill, Tess, and I went to the waiting room (with other people there) and read over the paper and discussed it and finally signed. I felt like I was giving my okay for her to die. I think I hit a new low. Amy was moved to a room and we settled her in. Tess was staying the night with her. We finally arrived home sometime after midnight. In the journal we started counting days again.

Day 2, Monday, April 1
When Emily and I got to the hospital that morning, I received a call from my husband saying that Amy's pony had died. She'd had him for 23 years. I cried so hard, that the girls thought it was one of my parents or a person close to us. I just wrote it on a piece of paper and showed them. I didn't want Amy to know. She'd had enough change and sadness in her life right now.  Amy was moved to ICU. She was given antibiotics, fluids, potassium and other stuff in her IV. They took out 1000's of cc's of the food from her stomach tube, by pressure first and then just let it drain. Breathing treatments were started again and percussion on her chest. We met and saw the doctor who would be working with us with her trache. He said it wouldn't  be years, but it would be months until she would be able to get the trache out. He did a bronchial scope and suctioned; Amy didn't like it at all. Amy's white blood count was still high and so was her heart rate, even with the meds to help lower it. Tess stayed the night again.

I posted again before I left for the hospital: 
April 2
We took Amy to the ER on Sunday. She is in the ICU in Bedford, so day #3 is starting. Prayers are still needed.

Day 3, Tuesday, April 2
Not much was done that day. Treatments were continued with suctioning. We only live three miles from the hospital so we were able to visit all day, and Amy had some friends visit also.They stopped the percussion on Amy's chest and started to give her potassium to prepare her stomach for food the following day. Emily stayed the night.

Day 4, Wednesday, April 3
I came in early and brought Amy's wheelchair. Emily left for work around 10:00  and the nurse and I got Amy washed and up in her chair and I washed her hair and fixed it. Our Assistant Pastor visited. Amy received a breathing treatment and started watching "Charlotte's Web."  The Doctor, A Hospitalist, came in. He told us that "things" looked good. He thinks it was bronchitis or the beginning of pneumonia and not a bladder infection.  Amy was given a feeding and after the feeding started she began to get shaky and her respiratory and heart rate went really high. So the nurse and I moved her back into bed and she was so stiff and shaking, almost like a seizure. I just started trying to calm her down. She was given  a bit of morphine but it didn't help much so about 15 minutes later they gave her a full dose of morphine. A few minutes later they checked her stomach and none of the food had passed into it yet. So they stopped the feeding and an x-ray was ordered of her stomach. I had no idea what the problem might be.......Laura came to visit and the x-ray was taken.  The Dr. wanted to talk to me about Amy and I wanted Bill to be there so Laura called Bill and when he came in we talked to the Dr. This is what I wrote in the journal:  We talked to the Dr. together and we both decided to wait 48 hours to see if Amy gets better. So the next day we will be waiting and healing and Friday afternoon we they will try to give Amy some more food and see what happens. 
Emily came in to stay the night again.
I never stayed any of the nights while Amy was in our local hospital. Being that it was so close I felt that if I slept in my own bed, I would be more rested to spend my days at the hospital with Amy. Emily reported in the journal that Amy had another breathing treatment before bed and then about 1:30 a.m. started crying. Emily thought that Amy's tummy might be hurting her. The nurse gave her some Tylenol  and Amy fell asleep a little after 2 a.m.

Day 5,  Thursday, April 4
Amy slept through the blood work and through the breathing treatment. Bill and I came in but she never saw her Daddy because she was still sleeping. Emily and Bill left for work. Amy was to get two doses of the penicillin that day instead of just one. We had some visitors and around noon Amy had a respiratory treatment again. I started getting her cleaned up and then the nurse came in to help me. We got her in her chair and I was doing her hair when we had another visitor. Soon after that the Dr. came in to talk to me about moving her to a larger hospital. He didn't want to wait another day. And with that the journal entries stop..............
There is some confusion in my mind as to what happened the rest of the day. I know that the Doctor found out that the larger hospital (similar to the one she was in before) wouldn't take her. Amy would only be able to go to Johns Hopkins in Baltimore or to a hospital in Pittsburgh, both 2 1/2 to 3 hours away. I called Bill and Tess. We all talked to the Dr. 
As I understood it, Amy's small intestines weren't  working properly and they would have to do surgery and bypass them permanently. There was no guarantee that she would even survive the surgery, let alone have any quality to her life after the surgery. 
We decided that we didn't want her to die in a hospital so far away from home. We wanted her days to be peaceful and not full of more pain from surgeries. We decided to bring her home......
I wanted to just bring her home right then, but it was already evening and the hospital has procedures and they needed to contact hospice. Tess volunteered to stay the night with her. I don't know how she did it, knowing that Amy only had a week or so left.  But I think it was a special time for them, just the two of them together.

That evening we called family and the next morning I posted one more time:
April 5
This will be a shock to some of you. We are bringing Amy home today from the hospital and in a few days or a week, she will be home with Jesus. He will hold out His arms to her and she will dance into them and they will dance together with smiles and laughter.
She will see her beloved grandparents, her Aunt Erin, and her pony Cocoa, who just died on Sunday. She will be able to jump on his back and race around heaven, laughing and singing.
Amy loves parties, and since she was in the hospital for her birthday, we are celebrating her birthday on Saturday with a party for her. The rest of her days will be full of singing, stories, her beloved Veggie Tales and her family and friends with her. She would love to have visitors. Please come, just one or two at a time, and make your visits short. These next few days are only about Amy, not us, so I will only have her interests in my mind. If I am rude, I don't mean to be, I want to have happiness for Amy for her last days here on earth.
Please pray for Amy to not have any pain, strength and comfort for our family, for us to show Amy joy and not tears.
This is not what we would have wanted; her 31 years flew by so fast. This is God's plan and He is writing her story and ours. We only want His will for our lives. Amy has touched so many lives and she will continue in the days ahead.
Thank you all for lifting us up to Jesus. He is the answer to all of our needs. Love, Bill and Cheryl