Christmas

I was hoping to post more about Amy's last month and I was even hoping to get her whole last month posted before Christmas, but that isn't going to happen. It was harder than I realized to remember her last month and this is not an easy time of year as it is, let alone bringing back memories of the worst time in my life. I guess I just thought if I could tell you all about it, maybe I wouldn't have to think about it again. 

Well the busyness of the Christmas season has occupied much of my time and I actually try not to think about years past and traditions that we are not doing this year. I have even avoided listening to Christmas songs, when I have a choice, as it is just too hard. 

But there were some highlights of the past two weeks that brought joy (and a few tears).... going to a cookie exchange and getting to hold a little baby for awhile. I showed him the lights on the Christmas tree and I shed some tears as I remembered Amy staring at our tree and the special lights I would  put up in her room.....attending a ladies Christmas party and getting to hold another wee little one, but this time there were no tears and I enjoyed singing some carols and visiting with my friends.....short visits by two doctor friends that knew Amy (but didn't treat her) and each gave me words of comfort........hugs from 5 special children that my oldest used to babysit. They are so grown up now, but each still gave me a hug.....Showing my daughter-in-law how to make our family's special "Jesus Birthday Cake.....Christmas greetings in the mail.....working on a special surprise for my husband for Christmas. We already agreed to not get each other any gifts. but I'm making this, so it doesn't count!

This morning in church we were singing carols and this memory flashed through my head. Every night in the month of December Amy and I, and whoever else might be here, would sing through the Christmas section in the hymnal.  We would sing at least one song, sometimes two or three if Amy wasn't really tired. So as I thought of those special times the tears started. Then our song leader said that all the angels in heaven are singing with us right now even though we can't hear them. Wow! I could hardly keep the sobs inside. 

We said our "Merry Christmas' and goodbyes" to  our friends as we are leaving for my childhood home about 1000 miles away on Wednesday. We don't plan on coming back for about 3 weeks. We are visiting some friends and celebrating Christmas with my 83 year old parents. It is just too hard to be in this house where we have celebrated every Christmas of Amy's life. I am glad that our family and friends are willing to let us spend some time with them.

I have finished my study of Romans. In Chapter 15 these verses really meant a lot to me:

^{Verse 4 "}For whatever was written in earlier times was written for our instruction, so that through perseverance and the encouragement of the Scriptures we might have hope."   

^{Verse 13} "Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit."

That's what I'm praying for in the next couple of weeks.... that I will be able to have hope and joy and peace. 

I won't be blogging while I am gone, but I do plan on finishing the story of Amy's last month of life on this earth when we get back in January.

I found this poem and wanted to share it with you. I don't know who wrote it.

Christmas With the King

I see the countless Christmas trees, around the world below

With tiny lights, like Heaven’s stars, reflecting in the snow.

The sight is so spectacular; please wipe away your tears,

For I’m spending Christmas with Jesus Christ this year.

I hear the Christmas songs that people hold so dear,

But the sound of music can’t compare with the Christmas choir up here.

For I have no word to tell you, the joy their voices bring,

For it is beyond description to hear an angel sing.

I can’t tell you the splendor or the peace here in this place.

Can you imagine Christmas with our Savior, face to face?

I’ll ask Him to light your spirit, as I tell Him of your love,

So then pray for one another as you lift your eyes above.

Please let your hearts be joyful, and let your spirit sing,

For I’m spending Christmas in Heaven

And walking with the King.

Eight Months

Yesterday was the eight month anniversary of Amy's passing. My husband and I went to church, then went to the cemetery to put a wreath, some greens, and Amy's Tinkerbell ornament (I had  bought for her last year) on her grave. It was snowy so softly and if a cemetery can be beautiful, it was. Gone were the dead grass and the dead leaves and the sticks that had blown off the trees. It was all covered in white. Some of the tombstones were covered too. Amy's was, as it slants a little up toward the sky. We had planted a few daffodils in front of her stone a few months ago and as our weather has been very strange, a couple of them had started to grow and one right in the middle had even formed a bud....A reminder to me that Amy is still alive, just not here where we can see her.
 
I sometimes talk to her while I am there. It seems like a safe place where people won't think I am crazy. I told her I loved her and missed her, that I wanted her to be able to see the special ornament I had gotten for her this year. Of course I cried, but not in agony like I had the night before........... 

I was getting her wreath ready and wiring her little ornament to it and I just started sobbing. I wanted to scream. "No mother should have to give her child a graveyard decoration for a Christmas present." But I just sobbed and sobbed and didn't scream. 
A week before I had driven by the cemetery and it was so cold that I just sat in the car and talked to Amy as I can see her grave from the car. I started to get really shaky thinking about Amy's little body freezing. I felt like I might hyperventilate. I had to firmly get a grip on my emotions and tell myself that she wasn't there before I went crazy. I told myself that she is with Jesus and is warm and happy. Then my mind went to those who have no hope. Who only think that their child is in the ground and there is no life after death. How can a person live like that? I praise God that He has given me assurance that I will someday be with Amy.

I have explained before that my husband is a man of few words. He doesn't show his emotions very often. Yesterday at the cemetery, it was just the two of us.  He had put some Christmas flowers on his parent's grave and then we decorated Amy's grave. I was talking to Amy and then I asked him if he wanted to say something. He struggled and struggled and then finally sobbing said, "You have a merry Christmas Amy."  We both held each other and cried. I then told Amy that Mommy and Daddy would be with her soon.

It is getting easier, but knowing she would have loved seeing the Christmas lights, hearing the carols and the Christmas hymns we sang yesterday in church makes it so hard for us left here. I just have to keep telling myself that the dazzling display of lights in heaven are beyond anything we can imagine on earth. And the music must be glorious! 

Amy loved Christmas. She is celebrating this year with the One Who we sang "Happy Birthday" to on Christmas eve every year of her life. Amy loved birthdays too.

This is going to be the best celebration of all for her!
Someday we will all celebrate Jesus' birth together again. What a wonderful day that will be!


 

Days 6, 7, 8

(Correction to previous post.  When Amy had the breathing tube in her, she was getting fed through a tube in her nose. I had completely forgotten about that until I read my diary for today.)

 Amy and I woke up to sunshine on Tuesday morning! We had both managed to get some sleep and our day started off with the normal routine of early morning x-ray and lab work. The troop of interns and the Dr. came in and we were told that Amy's lungs looked better and that the bronchial blockage was not there. That was the one positive thing, but..... she had failed the breathing test. The way they did this was to decrease the amount of work that the pump was doing to make her breathe and see if she would take breaths on her own. This is done with the tube still going down her throat; it is just the controls on the machine that they change. They would also keep a close watch on how fast or slow she was breathing and the oxygen levels. Sometimes with the machine still doing most of the work, Amy would take a breath on her own. The machine would show us this. But when it was slowed down to the point of Amy doing most of the work, she couldn't do it. So the Doctor said the concern now is to get her off the intubater so she will not have to have a tracheotomy in the future. He plans to wait until the end of the week to see how she is doing. 

Every so often over the next couple of days Respiratory would come in and turn the machine a little lower so Amy was taking more breaths on her own. This is how they tried to build up her lung strength so they can remove the tube. 

The Wound Department was also in to see Amy as she had a bedsore. It was right on her tail bone. I believe this happened when the cat scan was done and they did not transfer Amy correctly. Once she was on the hard board they just slid her to position her instead of lifting and placing her. I believe the pressure on that board caused this sore. So now they are getting her a special sand/air bed that will simulate her water bed that she has at home and it is also heated. 

Yesterday the doctor had ordered her nutrition intake to be doubled. Now today she has diarrhea. They won't let me wear diapers on her and it just goes everywhere. This makes it really hard to  keep the bed sore clean at all times. The catheter doesn't seem to be working properly also, so they took it out and tried to reinsert it again. Poor Amy. She became very agitated and had to be given some medicine to calm her down. I'm sure it caused more "discomfort" (PAIN) then they said it did! I think the medical profession has a whole vocabulary of their own for the word pain. The new bed came that evening and Amy slept well. She didn't need any medicines to help her sleep. She really liked her new bed. I think having it heated helped so much. The motor was rather noisy though, but I also think the steady hum helped her sleep better.

Wednesday Day 7
The new catheter still isn't working so it was taken out after the normal 5 a.m. x-ray and lab work. Amy had another new nurse today. Every time someone new came in I always gave them a copy of Amy's story. This had just been printed a few days before Amy went in the hospital and it was our way of spreading the news of Rett Syndrome, what Amy was capable of understanding, our beliefs and the hope that others could have through Jesus. Many people were blessed by her story and would talk more directly to her instead of just me.

We also had a new intern that day. I was informed that he was called a "resident". He was always a part of the team who came in every day, but now he would come in about an hour or so earlier and then he would give the report to the doctor in front of the whole group. For the first few days we had a young woman from China who Amy and I got along with really good. This guy was a jerk! He asked Amy to hold up two fingers if she could hear him. Has he not been listening all week while he was in here?
Amy's bed was changed again ( it would be so much easier if she was allowed to wear diapers) and by 8:30a.m. She was sound asleep again. There was heavy snow overnight and it was snowing again...big wet flakes. I wondered if my girls would be able to come visit that day. 

The doctor and team came in around 10:00a.m. and Amy was still sleeping.  The young resident gave his report and he must have been nervous because his hands were shaking. The doctor asked him some questions and he stumbled on the answers. (I wonder what that young man is doing now?) As Amy is still not breathing well on her own, the Dr. planed to make a decision to do a trache, or not, the next day and then it would be scheduled for Friday.  I asked him what this involved and he said it would be done in the room and then a feeding tube would be inserted again in through her nose. She would be more comfortable without the huge tube in her mouth and she could learn to breathe faster on her own.
Amy slept most of the day. She had another catheter put in around noon. I think it is finally working right. Quiet afternoon.  We watched some tv and went to sleep early for the night.

Thursday, Day 8
Amy slept well with an early wake up at 4:30a.m. for an x-ray, labs at 5:30, pulmonary at 6:00 and respiratory at 8:00. Amy was very groggy through all this. She did well on the test, breathing on her own. She was breathing a little faster, but on her own! The settings on the machine were set so she was breathing on her own. Praise God! I was so happy! The doctor wasn't as happy. He said he will be happy when she is completely off the breathing machine. 

The nurse and I gave Amy her bath, and placed her on her left side. She soon started struggling to breathe again. She was breathing too fast and her heart rate went up so Respiratory was called again and she was put back on full power of the machine. They said they would try again in a few hours. Amy needed the full power again to be able to rest.  She was able to watch some tv and rest well for a few hours. Once again she was put on CPAP (breathing on her own) but after just a few minutes the monitor started beeping, her oxygen had fallen below 80, Her heart rate was above 120 and so they had to stop and put her back on the full machine again. Tess came and after visiting for awhile and explaining the last few days, I headed for home as Tess was going to stay for the night.  Three nights in a row with little sleep was very draining on me. I noticed that my emotions were on edge and I didn't have much desire to walk to the cafeteria, so I would just grab something from the snack machines and get by. I knew I needed to stay strong for Amy. I knew I could not do this on my own power. I needed prayers and I started mass emails and posting on facebook. Here was my first posting the last time I was home:

"For my friends who don't know, Amy is in ICU for the fifth day. She has pneumonia and a bladder infection. She is on a respirator and a feeding tube. Last night was her first peaceful night of sleep in a long time. We are taking turns staying the night, so someone is always with her. Please pray for God's almighty healing in whatever way is His will for her life. Thank you.

I posted this when I got home after our 8th day:

 

I wanted to update you on Amy. She will be spending her 9th day in the ICU, still on a respirator and a feeding tube. Her pneumonia and urine infection are better. The main concern now is getting her off the respirator. She doesn't have enough strength to breathe on her own and they are talking of doing a tracheotomy. The Dr. will make the decision this morning. If he decides on that, it will be done this afternoon. Tess stayed the night with Amy and Emily brought me home for a much needed sleep in my own bed. Bill called last night and he was also able to talk to Amy.

Please PRAY.............Amy will breathe on her own today so that she doesn't have to have a tracheotomy.

I will continue to be strong for her and that my knee pain will go away so I can get more rest while I am there.

That I show Christ to others with my attitude and love for Amy.

Bill will have a safe flight home on Sat. (tomorrow!!!)

Wisdom for the doctors and compassion for the nurses.

Thank you so much for your prayers!

Amy will be celebrating her 31st birthday tomorrow in the ICU. 

None of us knew that Amy would never celebrate another birthday here on earth.  We asked for God's will in her life, but did we really think that it might lead to death? We say that the ultimate healing is to be with God. Did I really believe this deep in my heart? My faith would be challenged time and again over the next few weeks.

Part four--Days 4 and 5

I decided in the last post to use my family's given names as it will make our journey easier to tell. Our son, James, and his wife, Laura, were working 2000 miles away for the winter months, that is why they are not mentioned. 

Day four began with snow, and I said goodbye to Bill and then Emily as she had to work.  My daughter's employers were very good to them during all of this to give them as much time off as they needed.  
I was able to make it over the mountain by myself for the first time, in the snow, with lots of praying.  Parking spaces, usually difficult to find, were easy today because of the snow. One small blessing.

I was so happy to see Amy! She had endured a restless night, with a breathing treatment at 11:30 and then her bed needed to be changed at 3:00 a.m. because her catheter wasn't working right.
She ate pureed eggs and drank apple juice and orange juice. Amy had another breathing treatment and then the Dr. came with some bad news. Amy was still very congested, she had a low grade fever and they decided to stop the breathing treatments and start suctioning through her nose. She hated that and would thrash her head back and forth and cry and cry. There was a lot of blood from her nose also and I was afraid they were really hurting her. 
Tess had to leave for work, and so they said their goodbyes. 
Memories.......... Fourteen years earlier, Tess leaving for college for the first time and Amy blinking and blinking, telling her goodbye. They were so close. Amy's best friend for 16 years.
 
Amy refused to eat any lunch and dinner.

The one area where Amy had control in her life was with her eating. She would clamp her jaws together and no matter how much we would try, when Amy didn't want to eat, she wouldn't eat! She was also very good at holding food in her mouth if it tasted bad and waiting a very long time to spit it out. I would usually get impatient with her and use a spoon (never my finger--I learned the hard way over the years) to get the food out in hopes that I could get her to eat something else. As Amy was always so very thin, I was constantly worried about getting her to eat when she didn't want to. 

I do believe that with all the suctioning of the tube going through her nose and down her throat it was making her nauseous and also very mad. She had just gotten that huge tube out of her throat and now they were causing her more discomfort.
Around 7:00p.m. Amy started having problems breathing again. After repeated attempts and failures with the suctioning by the nurses, respiratory was called in.  Amy's oxygen levels were very low so they started talking about putting the ventilator (breathing tube) back in. 

When Bill and I made the first decision to let the doctors put Amy on the ventilator, we decided at that time to never do it again. Even with a shot to calm Amy down and numbing the area, it caused her a lot of pain to have the tube put down her throat. We decided, if the occasion ever arose again, that she would need a ventilator, that we would not to do it.

We had no idea that occasion would be soon, for this same illness. The doctor had told us she would be doing ok with a few days of treatment.  Bill couldn't be reached as he was out of the country. I was stressing out big time and so I called Tess and cried and cried. I ended up calling the ER doctor from our home hospital (cried again) and talked to him also. Did I pray? I don't remember. I just know I felt very alone in that big hospital. Amy didn't seem to be in distress, but she wasn't taking deep breaths. She wasn't getting enough oxygen with each breath. Was I going to watch her slowly die? If I waited too long, would it be too late?

I finally made the decision to let them intubate Amy again. It was done a little after midnight. Now it was Sunday,  Day 4.

Tess and Emily came around noon. We just relaxed and took turns going to the cafeteria. We didn't want Amy to smell the food. She was getting nourishment through the I.V. but her stomach was empty and she could still smell! She slept off and on. 
Tess stayed the night and Amy slept 9 hours!
Day 5 
At 5:00 a.m. they came in to do another xray, blood work, gas levels, etc. I arrived about 10:00 and Amy was taken for a cat scan. 
Amy was assigned a new doctor for the week. He decided to double her nutrition intake. 
The chaplain visited again. She was an elderly little nun and so cute! She brought Amy a pretty pink crocheted blanket that had been blessed. She would always lay her hand on Amy's forehead and hold my hand while she prayed. She was a jewel. I wonder if she knows that Amy died? She came in everyday for 2 weeks, but then Amy was moved and I never saw her again.
The results of the CT scan: Amy had a lot of fluid in the 3rd lobe of her right lung and a possible blockage in the bronchial tube. 
Amy and I both slept well that night. It helped that we brought in her CD player so she could listen to music and stories. I also think we were both so very tired. It had been 5 days! I had no idea that it would be another 25 days until we were home again and that Amy only had 35 days of life in this world left. 

Amy's last month-part 3

We were in the ambulance for about an hour, arriving around 12:30pm. I was able to ride in the front and my husband, Bill,  and oldest daughter, Tess, were following after us in the car. I started things off well when I refused to leave Amy alone so the nurses could get her on the bed and take her vitals, etc. I held my ground and finally after a stare down with Nurse Jackie, she gave in.  All they saw on paper is a 30 year old with breathing problems. They were not prepared for one so tiny in size nor unable to communicate with them.  Nurse Jackie changed her demeanor when she realized that I was Amy's voice, stayed out of their way, and I was not one of "those" moms. The doctor did not come in for a couple of hours and then he ordered another x-ray, more blood work, and a catheter put in. The same tests all over again. Poor Amy. She loved excitement and people paying attention to her, but not being stuck with needles or catheter tubes and moved from bed to machines, or even lifting her up each time to put the different x-ray screens under her. Her skin was so thin and I was always watching for bed sores. She only ever had a few of them and that was on her feet and lower legs because I wasn't careful at all times to keep a pillow between her knees and feet. That was.......until this hospital stay. 
As I insisted on staying with her at all times that meant overnight. They reluctantly agreed and I was told later that no one had ever stayed over night in the ICU for about 20 years. 
Bill and Tess left in the late afternoon and then Tess and my youngest daughter, Emily, came back with some stuff for me that evening. We did not know at the time, but the daily trips over the mountain and back were going to become a routine for the next month. The trip takes about an hour and it snowed every day, except for three days.
Thursday had been quite a day for Amy, but neither of us slept much that night. Amy was so used to falling asleep to music and so I sang to her some and tried to comfort her, but that only succeeded in me getting sleepy and she was still wide awake! 

Friday, March 1
The Dr. and about a dozen interns (it is a teaching hospital) came in and discussed Amy's case. They decided to take the breathing tube out around noon. As the blood oxygen monitor would not stay on Amy's finger or toe they put it on her forehead. So she had this red light on her forehead with a huge piece of tape to keep it on. The breathing tube was taken out successfully and now she had two bright red spots on her cheeks where the tape had been.  Amy ate jello, drank apple juice, and sips of ice water. She had not eaten or drank anything for about 42 hours. She was very happy! She loved to eat! Tess and Bill came and Amy had more jello and a lot of juice. The Dr. said she had an urinary tract infection and pnemonia. It would clear up with medication and breathing treatments. The monitor was taken off her forehead as she kept rolling her eyes up to try to look at it and so they tried taping it to her toe again. Nurse Jackie was wonderful and talked to Amy, not just us. 
After a tearful goodbye with Amy, Bill and I left, and Tess stayed the night with her.
Bill was leaving for a week on a ministry trip to Andros Island
in the Bahamas. It sounds luxurious for a place to go in early March, but the people there are very poor and the year before Bill went with a team and worked on a church. This time they were building a house for a lady and her children.
 
We had no idea that Amy was so seriously ill. Bill would have never gone if he knew that he only had a few weeks left to share Amy's sweet smile and her unconditional love. I cried buckets when he left in the early hours of the morning. It was snowing pretty heavy and I had to drive to the hospital, so began Day 3 of this journey.

As I continue my study of Romans.
Chapter 11: 33-36

Oh, the depth of the riches both of the wisdom and knowledge 

of God! 

How unsearchable are His judgments and unfathomable 

His ways!  

For who has known the mind of the Lord, 

or who became His counselor?  

Or who has first given to Him that it might be paid back to him again?   

For from Him and through Him and to Him are all things. 

To Him be the glory forever. 

Amen.

Washington DC and Amy's last month part 2

Some friends of our invited us to visit Washington DC with them last weekend. We had a wonderful time, although it was very cold! We parked outside the city and took the Metro in.  I haven't ridden on a subway for 30 years and it was exciting but not the kind of daily life I would like to live. It was also very sad as we saw many people begging and so many homeless people in the city. They were wrapped up in  whatever they owned with a tarp or piece of plastic around them. I think it got in the 20's the night we were there and it was so very windy. I will have to pray for God to give me a way to help some of them.

We walked a lot, visited some museums and ate at The Cheescake Factory. That evening we went to see "A Christmas Carol" in Fords Theater.    (That was the theater where President Abraham Lincoln was assassinated.)  The production really touched my heart. It was a musical and all of the songs they sang were traditional Christmas Carols.  The songs pointed to Christ many times as our hope and I realized that I have been looking at the commercial side of Christmas and not the real meaning of Christmas. Even with the story line of Tiny Tim, I didn't feel sad, but only joy. I was inspired to at least recognize Christmas this year by hanging wreaths on our doors and making some cookies to share. I will try my best to think of others this season and remember how happy Amy is sharing this Christmas with her Savior Jesus.

  
We stayed in a historic hotel and even though it was too cold to visit the zoo the next day, 
we had a wonderful time with some great friends.


 

 

Amy's last month-Part two.

My husband and I took Amy to the ER around 8:00 Thursday morning, February 28. They took a chest x-ray, blood work, and started an IV. The ER doctor was very kind and actually talked to Amy. (Some doctors act like she can't hear, or understand, or that she isn't even there.) As she was having so much distress in her breathing, he wanted to put in a breathing tube, intubate her. He also wanted to transfer Amy to a bigger hospital that was better equipped to take care of her and the tube would be easier for her to travel.  He took us to another room to talk about it. The doctor assured us that this is done quite often and in a day or two the tube could be removed. But he also gave us no guaranties. Amy was quite frail (only about 65 lbs) but he knew how well she did last year with pneumonia, so he gave us a few minutes to make a decision. 

My husband and I had decided previously to not do anything like this to keep Amy alive. We felt that when the Lord called her home, it was her time to go. But it was not like in the movies. She wasn't in a coma, she was wide awake and in distress, pain and scared, because she couldn't breathe.We decided to let them intubate her.

I didn't know it then, but it was the beginning of the end. 

Would we had made the same decision had we know there would be almost 5 weeks of time spent in the hospital? That Amy would have more procedures and more pain? That she wouldn't live through all this? Of course we wouldn't have. We would have taken her home right then and committed her life to God.  

But that was not what God wanted for her life or for ours. He wanted us to go through those five weeks. He wanted Amy to touch many, many lives in the hospital. He wanted her to share her story with others............... I will continue in the next post.

I have been studying Romans these past few weeks. These verses in Chapter 8 are very special to me.

 

¹⁸ For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.

  ²⁸ And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.

³⁷ But in all these things we overwhelmingly conquer through Him who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.

Amy's last month of life- Part 1

I haven't felt like writing for quite a while.

Almost two weeks ago, my husband and I took a Sunday off and spent some time alone. We ended up doing some work at our mountain cabin we built on our land about 17 years ago. I was dreading seeing the inside as sometime over the summer, porcupines had chewed their way inside and set up camp  for awhile. I felt there had been enough destruction in our life lately and I didn't want to see more. Well, it was bad, but we worked on it, cleaned up what we could, and we know with a little more hard work we'll be able to fix it up again. We spent time talking about the future,  how our perspectives of life have changed. Our children grew up so fast and now..... one is no longer here. 
I have been feeling like just getting through with life, wanting to be in heaven with Amy and just going through the motions until God calls me home. Something happened that afternoon, though. It was like I finally realized that I could live for another 30 years or more! What was I going to do with the rest of my life? Where was God leading me next? I was just a little bit excited to think about the future. I felt more encouraged that day, even though there were tears, than I had for quite some time. 

So I have had more good days then bad days. 
But I can't live in a bubble of my own home. I have to get out once in awhile to shop and this time of year is very hard. I see Amy in everything I look at. The Christmas stuff is almost depressing. I have no desire to decorate and  I'm not doing very well on my shopping. 
We are having the family over for Thanksgiving,though. I will make a big turkey and the girls will help out by bringing some side dishes. We are using the dining room table. It will be hard....but I am determined to do it....and we will get through with God's grace. I'm sure there will be lots of tears, but my family is getting used to me crying all the time! 

Two days ago I finished using the last of Amy's perfume. She had mostly body sprays. I would use them on her very liberally and she would smell so good. Everyday for her month long stay in the hospital she was lotioned up and perfumed. The hospital let us use our own. Now all her perfumes are gone. I threw the last bottle in the trash and another piece of my heart went also. 
How many pieces of my heart can I lose until I have nothing left?

This week I saw an ambulance parked at McDonalds. Just sitting there, no siren, no flashing lights, no emergency. As I waited in the drive through lane it all came rushing back. That first ride in the ambulance eight months ago.  I decided I wasn't hungry and went to the cemetery and cried.

I need to tell those who don't know us about Amy's last month. I need to read the journal my daughter and I kept of our hospital stay and share what happened the last month of Amy's life. I feel a need to do this, but it will hurt. I have tried to block it out for so long now and maybe if I confront it, I can get over it. 
On  Tuesday, February 26, 2013, Amy came home from her day school and seemed tired. That wasn't unusual, she was tired a lot after school and I would always lay her down and let her nap if she wanted. She would listen to a story and most of the time fall asleep. That night she had a low fever before bed and I decided to keep her home from school the next day. I still wasn't too concerned. Wednesday she slept quite a lot, but ate well and I was debating if I should take her to the doctor or not. She still had a low grade fever Wednesday night but slept well. Thursday morning her fever was up and she was having trouble breathing. That was very unusual for Amy. She had pneumonia just once before and that was about almost a year to the day when she got sick this time. Last year we took her to the ER and they ran some tests and we took her home to recover. No hospital stay. No complications. 
Amy has always been healthy. If she would get sick, usually she wouldn't eat much and she would sleep a lot and get over it. Nothing in Amy's whole life or my life had prepared me for what was to come.........
 

Seven Months-Part Two

Yesterday I planned to just get through the day.

I had a dentist appointment in the morning and so I thought I would journey out to do some shopping afterwards. I was able to get through the appointment without anyone mentioning Amy. That was a good thing, because I knew I would dissolve into tears if someone asked me how I was doing.
I spent a good deal of time in Hobby Lobby as I enjoy doing crafts and I love hearing the Christian music they play in the background. 
My shopping was going well. I was shopping for my youngest daughter's birthday. She will be 27! I was also shopping for items to go into the Samaritan's Purse Christmas boxes. This is the first time our family has donated boxes and we each decided to do one, so I was looking for little items for 3 boxes. If you have never heard of it, click  Operation Christmas Child.
So my shopping day was going great until I was in Kohls. I was walking down the aisle and a lady with a older girl in a wheel chair came my way. We smiled at each other in passing and I glanced down at the girl, smiled and said hello. She just looked at me and said something I couldn't understand and then my tears started. 
I was able to control them until..... I saw it. A Christmas ornament display right in the middle of the aisle on the way to the children's clothes. The same display was there last year when we had our Christmas family shopping day. My husband and I bought Amy two ornaments that day, as we planned on saving one for this Christmas. 

Of course, we had no idea that Amy would not be here this Christmas to give it to. 

About four years ago, I started buying Amy an ornament each year. My oldest daughter had taken all her ornaments and my son had taken his, so I decided our tree could use a few more. Amy was so taken with the Disney fairies that we bought one of those for her each year. This year she would have gotten another one. 
There were a few ladies looking at the ornaments and I just stared at the cute Tinkerbell ones they had and then I had to touch them and the tears started again. I wanted to tell the ladies that I have a daughter and she is perfect and beautiful and I wanted to be able to buy her another ornament, but she is in heaven now. They just glanced at me, looked away, and quickly left. 
I couldn't control my tears this time and I just decided to make my purchases and leave. 
I had a good cry in the car and prayed for strength. 
It was late when I got home and I was exhausted. I showed my daughter what I purchased (except her presents) and then checked my email.
My oldest daughter (who doesn't share her feelings very often) posted this on facebook:
 
"A part of you has grown in me, together forever shall we be, never apart, maybe in distance, but not in heart."-Anonymous

I burst into tears again and couldn't stop crying. My youngest came in and hugged me and I asked her if she would sit on my lap. I held her and rocked her the way I would have Amy. We sobbed together.

I haven't held her like that for probably 20 years. I cried for all the years that are past, that can never be again. I cried for my adult children who are facing so much pain also and I can't make it better for them. I cried most because I will never hold Amy in my arms again. 

So the seven month anniversary passed and I did get through it. By God's grace, I got through it. 

Tomorrow we are to have a Harvest Banquet after the church service with turkey and all the fixings. Then we are having special music. 
I can't bring myself to go. I haven't been to a church meal without Amy. I just can't do it yet. 
So...... we plan on sleeping in and then spending some time getting our cabin ready for hunting season. We'll spend the time together,  just my husband and I, but Amy will be with us in our hearts and we will worship God in the midst of His creation tomorrow. Maybe not the way some people think we should, but the way that seems best for us right now.
Amy loved going up to our cabin for cook outs. She loved riding the 15-20 minutes in the truck to get up there. Even the last couple of years, when it hurt her to sit without the support of her chair, (just my arms), she loved to go there. We kept a wheel chair in the cabin so she could be comfortable and she would enjoy the sights and sounds and smells of the woods.  
I will think about that tomorrow. I will try to just BE. To take in the smells, sounds, and really see the stillness. I'll try to praise God for all the things that Amy has taught us. And for the thirty-one years and one month that He gave her to us.

This was snapped on a cold day last week. The wind has taken a lot of the pretty leaves off the trees but the new grass is so green and some of the daffodils are coming up in front of the stone. But they will soon all be asleep under a layer of snow. 
How comforting to know that Amy is in the arms of Jesus and it is just her earthly shell that lays here.
 

Seven Months

Tomorrow will be seven months since Amy went to live in heaven.

My mom just sent me this email. She is 83 years young and always types in capital letters. She is amazing that she is able to understand her computer and be able to communicate with her daughters and her friends like she does. Here is what she said:

"I WANT TO SHARE WITH YOU ABOUT WHAT I FELT THE LORD WAS SHARING WITH ME, THE OTHER NIGHT WHEN I COULD NOT GET TO SLEEP.  I HOPE I CAN PUT IT IN THE RIGHT WORDS.
THE LORD BROUGHT AMY HOME TO BE WITH HIM AS A BLESSING TO HER. FOR NOW SHE CAN DO ALL THE THINGS WHEN SHE WAS EARTH BOUND  SHE COULD NOT DO.  ALSO THAT HE, IN DOING SO, GAVE YOU A BLESSING TOO. FOR NOW YOU ARE ALSO FREE TO BE ABOUT DOING OTHER THINGS FOR HIM.  I HOPE I HAVE PUT IT IN THE RIGHT WORDS....IT JUST CAME SO CLEAR TO ME, THAT IN BRINGING AMY HOME, HE WAS GIVING BOTH OF YOU HIS BLESSINGS."

I love my mama so much for being able to tell me this. I have been feeling what she voiced lately, but yet I feel guilty for even thinking that Amy's death was a blessing.
For thirty-three years I have been a mother and that has been my occupation. I also added wife, homeschool mom of three, secretary for our home business, and of course cook, maid, and nurse to my occupation. But overall I was mother and caretaker of Amy. That's all I've know for that last thirty-one years. 

Now, my time is mostly my own. 

I've had knee surgery and have healed well from that. 

I'm still trying to heal from my heart surgery.  

I'm trying to lean on the Lord for wisdom in directing my life. 

I have not been involved in any church ministry for the last 7 months but God clearly told me about two months ago to tell our church about  Compassion International.
So three weeks ago I got up in front of the church and explained about our two children we sponsor and how others could sponsor a child also.
I felt good about doing this. I knew that God wanted me to do it and I knew that Amy would have been proud of her mom for sharing about the needy and poor. Because of her, I had the courage to share with others. And because of Amy 9 more children got sponsors and will not be suffering anymore from hunger or lack of education. Most important, these children and their families will hear the good news of Jesus. 
He is what makes all the difference in a person's life. In my life and in Amy's. Because of Him, I know I will see my precious daughter again and we will have eternity to share together. 
So tomorrow...... I will try to get through my day as I always do. I'm sure there will be tears and pain, but there will be hope also. Because of Jesus. 

Missing Amy

Last weekend we visited my husband's sister. The last time we visited her Amy was with us. We had a good time, as we always do. I reminded Amy of what a good cook her aunt was. When we arrived she had soup and salad waiting for us. Not one of Amy's favorites! So we had a good laugh about that and then she redeemed herself by fixing Amy's favorites the rest of our time there. Before we left we stopped at the sewing shop where she works and Amy and her aunt got their picture together. 

October 2012

This time, there was no Amy with us. This time, was so different. We took a detour and stopped at a young friend's house. She and her husband just had a new baby, one month old on the day we visited. This was one of the friends of Amys that I talked about in Amy's friends. It was such a joy to hold a dear one month old little girl. I was close to tears many times, thinking of all of life that the new mommy has ahead of her with her sweet precious daughter.

We have visited my sister-in-law more frequently over the last ten years than we did before and I feel that Amy had a bond with her aunt. She was always up here for Christmas every year and there was a closeness between them. 

We also always went to church and so I knew many of the people there. One girl I have know since birth and I have enjoyed watching her grow through the years. She is a young lady of 17 now and I talked to her after the morning service and asked her if her mom had told her about Amy and she said yes. Then she asked if she could sit with us that evening. Of course I said yes. God knew I needed that comforting soul sitting next to me. Every time the preacher prayed she put her hand on mine and when we stood to sing the last hymn she put her arm around me. The solo that was sung that night was one I hadn't heard since Amy was little. It was by Ron Hamilton. I couldn't find it on You Tube, but here are the words.

Wings As Eagles

When the race still lies before me,
And the wind is blowing strong,
When the witnesses surround me,
And my strength is almost gone;
When the valley plunges deeper,
And life shatters all my dreams,
Then I lift my voice to Jesus,
And He gives my spirit wings.
God gives wings, God gives wings as eagles;
God gives wings to fly and strength to rise above.
God gives wings, God gives wings as eagles,
When my feet begin to stumble,
And my dreams begin to crumble,
I mount up on eagles’ wings.
Let us run the race with patience,
Let us lay each weight aside,
Looking only unto Jesus;
He will be our faithful Guide.
He has run the race before us;
He has won the victor’s crown.
And He calls to ev’ry Christian.
Follow me to higher ground.

This song touched my heart so much. I would have dissolved into tears right there, but I didn't want to upset the young lady sitting with us, so I was able to keep it in. It was the reminder that I needed.

 Isaiah 40:31
“But those who hope in the Lord will renew their strength.
They will soar on wings like eagles:
They will run and not grow weary.
They will walk and not be faint.”

We got another picture this year, in front of the new quilt that Amy's aunt made. 

Missing Amy.

Always missing Amy. 

Another birthday without Amy

Amy's daddy celebrated his 63rd birthday Saturday. This is the first family celebration we have had at our house since Amy has been gone. About a month after she died, I took the leaves out of the kitchen table to make it small. We didn't need the space for her wheelchair anymore and all the extra room was just a reminder that she wasn't here anymore. 

I have yet to clean off my dining room table. It still has the hundreds of  get well, birthday and sympathy cards we got for Amy within the last weeks of her death. It has her silk flowers, stuff I saved for a scrapbook, all her funeral info, and the notebooks and stacks of papers that I saved from her schools. We kept a daily blog that we communicated with her teachers. I hope to one day be able to read them again. I can't even think about it now because it hurts too much. 

So...... I just couldn't bring myself to clean off that table yet for this family gathering. The last time we all gathered in the dining room was 2 days before she died to celebrate a belated birthday for her. I treasure those last few days and moments with Amy but at the same time I wish I could just block them out of my mind because she looked so bad. She was so weak that she couldn't even smile.

I put the table leaves back in the kitchen table for Bill's birthday and we managed to fit 7 people around it. 

Amy loved birthdays. She loved any kind of celebration. But she especially loved candles. She was never able to blow them out by herself but we always had fun helping her. We would sing "Happy Birthday" as I brought the cake to the table and then we would have the birthday person make a wish before blowing out the candles. After presents were opened we would set all the presents up and take a picture of the birthday person surrounded by their presents.  This has always been our tradition, even with my husband and myself, so we just carried it on when our children became adults also.

This year...........
No candles.
No singing.
No pictures.
No Amy.

But I got through it. 
I broke down once and had a short cry, but was able to dry my tears and move on.
That is what I wanted, was to just to get past it and I did.


These are the last pictures we have of Amy at her 31st birthday party.We celebrated it almost a month late. Amy went to be with Jesus about 42 hours later.

I don't know how we could  look so happy. 
We didn't know the pain of what life would be like without our beloved Amy. 
But now we do. 
The smiles don't come so easy now. 
And it will be a long time before we have anymore happy birthday celebrations.
But we will celebrate, and life will continue.
We will live the life that God gives to us and try to be thankful even if we can't smile.
I know that Amy always was, even when she couldn't smile.

Amy's still sharing her story

Amy continues to teach us. Even though life has been very busy here and I have not shared on my blog, Amy has touched my life every day. We had our oldest friends fly over 1000 miles to visit us last week. They are not our oldest friends in age, but in the sense that we met before either of us were married. My dear friend and I worked at a National Park together and she was dating her childhood sweetheart who became her husband three years later and that summer I met the man who would become my husband just a year later. We were in each others weddings and have stayed in contact for the last 37 years even though so many miles separate us.
They treated us to a weekend away at a bed and breakfast.  The Inn at Ragged Edge.   We visited the National Apple Festival in Biglersville, toured Gettysburg, and the countryside around Shippensburg for some Amish stores, and we ate! We acted like we were 16 and 17 again. Even though my body felt like a old lady! 
Most of all, they let us talk. They asked us questions about Amy and life. They let us cry and be quiet if we needed. They were great! 
Our first night we dined at The Historic Dobbin House.
The food was wonderful and they had a strolling musician. All was well until he came to our table and starting singing a song about missing the love of his life, and that she left too soon.I totally lost it! We all were thinking about Amy and I could not hold back the tears and couldn't wait until he got through the song as I was almost sobbing. He was very kind, and I told him about Amy and gave her story brochure to him. 
I shared quite a few of her stories over the weekend. If I see someone who is in a wheelchair I will give it to them. If I feel led to hand it out to someone else, I try to do so. She is still telling her story to others.
The other thing that happened was just a God-thing! We were driving around Amish country and had already been to a fabric store when my friend's husband took a side road because of a sign to a quilt shop. We didn't really want to go to a quilt shop! We couldn't afford any quilts and I wasn't going to buy anything, but the men were talking and just kept driving. So we get to this shop and a young lady came out of the house to go to the shop and she was pushing a wheelchair. She was 25 and her sister Naomi (in the wheelchair) was 27. Just a few years younger than Amy. She couldn't talk, was diagnosed with CP, was even skinnier than Amy was,  but she had the biggest smile on her face. Her sister said I could talk to Naomi and I told her about my Amy and then I couldn't finish because of the tears. Before we left, I gave her a big hug and caressed her one braid in front. The other was behind her back. I could have asked to hold her and I'm sure the sister would have let me, but I don't think I could have controlled my tears and I didn't want Naomi to see me cry. I wish I would have asked to take a picture, but that might have offended them. I gave her Amy's Story and she asked for my address as they don't have a computer. 
It was so very hard to see another young lady like my Amy, but I know that God sent us there and that I needed to touch her hand and feel her hair and give her a hug.  I'm trying to see what God has to teach me in everything that happens in my life. 
Before my friends left, we visited the cemetery and had a good cry. They are the first people, outside of the family, that have been to the cemetery with us.
Thank you my friends, for such a great visit. We will never forget it!

Carriage ride in Gettysburg

 In the cupola that Buford used at the Seminary in Gettysburg.

Six Months

Today Amy's daddy and brother planted two butterfly bushes and placed a bench, shaped like a butterfly, between them at the developmental center where Amy used to attend. She loved going to "school." She had wonderful people who worked with her and took care of her.

This dear lady was one of her best friends, because her teachers were her friends, also. They seemed to have a special connection and I knew I never had to worry when Amy was out of my sight. 
I will never be able to thank her teachers enough for  doing "more" than their job. They loved her, too.

So tomorrow will be six months. Six months since I held Amy in my arms and gave her a kiss. Six months since I picked up her lifeless body and placed it lovingly on the gurney for the undertaker to take her away from her home forever. I knew that she really wasn't with us anymore. That she was with Jesus, but oh how I wish I would have waited just a little longer. Held her a little closer and treasured the feel of her against me. I can never have that again in this world.

When I fall apart the most is when I look at her pictures, at her smiling beautiful face and remember, just remember how special she was.

My three daughters and I in Maine ten years ago.

This week I was glancing at a picture of her and her sisters on the wall and I cried myself to sleep that night.
The next day it just came to me that Amy will never be in their weddings. It about wrenched my heart out. 
Just when I seem to be doing good, a memory will come, or a thought, and it tears me to pieces.

But most of the time, I am doing good. Life continues and I am getting stronger. When I get real down, I try to think what I can do to help someone else. It might just be sending a card, or making a gift, but it does help to think of others.

Amy taught me so much just by living, but she has taught me also in her death. 

I take life slower. 
I let myself enjoy my family and friends. 
People are more important than things.
This life is not all there is.
This life is nothing compared to eternity.
God's Word has power, to strengthen me.
Prayer is a wonderful way of talking to my best friend, Jesus. 

I'm sure as time goes on, God will teach me more about Amy's life and her absence from my life here.

Weekend Away

The last time I visited my sister, who lives 6 hours away in another state, Amy was with us. My oldest daughter, and Amy and I attended the high school graduation of my nephew. He is now a junior in college.

Amy loved that trip! She always liked to travel and her aunt, uncle and cousins loved her and made her feel so special. 

My husband and I just got back yesterday from a weekend there. We had a nice and relaxing time. They have a house on a lake and it was so beautiful and the weather was perfect.  
My sister and I did a little shopping. 
The guys watched football and ate pizza.
We went to their church and I cried during worship, remembering the last time Amy was there and the music. 
She loved the music! They have a full band and wonderful vocalists. Last time we happened to meet another family with a Rett girl and so I looked around for them this time but didn't see them.  It might have been really hard to see her, but I wonder if she is ok. We didn't keep in contact and my sister didn't know the family. (Her church is really large.)

I always thought Amy would be  with us forever! I never considered that she might die in a few short years. If only I could give her a hug, just one more time.  

I had hoped for a time when my husband and I might be able to travel if the Lord decided to take Amy home, but I never let my mind go there and never thought it would be a reality NOW.

We did have a good time. It just seemed so strange to not have Amy with us or know she was waiting back home. We stopped about an hour before we got home for a bite to eat and they were selling giant KitKat bars by the register. Amy loved KitKats. I told my husband how weird it felt to not have her with us anymore. We always tried to go away for a weekend every year, just my husband and me, so this was no different than any other of our weekends away. I voiced this to him. My husband is a man of few words, so when he does speak, it is worth listening to. He said that whenever we were away before I always worried. No matter how much we enjoyed ourselves, I always worried about Amy. No matter who was taking care of her, I always worried. 

I realized that was it. That is what was so strange to me. 
I didn't have to worry about Amy.
I don't have to worry about Amy anymore. 
She is in God's hands. He is taking care of her. 

 

And this little cutie was waiting for us when we got home. 
Her name is Little Bit and we call her Bitty. She is 3 months old.

Praise God for His marvelous beauty in nature.
Praise Him for worship and thought provoking preaching. 
Praise Him for safety on the road.
Praise Him for family.
Praise God for Amy.

Three Years Ago

Three years ago today we were 2000 miles away, attending the wedding of our son. 
Amy loved that trip! 
I had made her a special dress. The dress, that less than three years later she was buried in.  
I made a special vest of the same material as her dress to cover up the black vest that was used to hold her up straight in her wheel chair. I also made a blue cover for her right elbow splint because she would chew on that hand. 

That vest cover and the splint cover have been thrown away. The arm splints and wheel chairs have been given away to those who could use them.

Amy no longer needs any help to sit up right. She can walk and run. She can sing praises to God and does not shed tears like I am doing right now.

Oh dear God why can't I be happy for her? Why am I in so much pain? I know she is with you and happy. Will I ever be able to move on? I can't wait to see her again. To be with her in heaven. 
I don't sorrow as one who has no hope. 
But I do sorrow. 

Come quickly, Lord Jesus. Take us all home to be with you.