Update to Did Laura Grieve

I don't know what Laura did after Mary left, but I am trying to turn my sorrow into praise! When I open the curtains in Amy's room I praise God for the beautiful flowers that are blooming. I praise Him for the birds that are eating at the bird feeder, and any cats that I might see from her window. I praise Him for the weather, if it is sunny, cloudy, rainy or like today hazy, hot, and humid. I praise Him for the years that we had Cocoa and that he was such a good pony. I was Amy's voice and I can still be her voice through praise to God for everything that I would have told her! 

I still have great moments of sadness. Yesterday, I saw her van go by that would usually pick her up and drop her off from her day program.  I just collapsed into sobbing, wishing they would turn in and bring my Amy home to me just one more time. I have moments like these, but I also have moments of, well, I can't really call it joy, but maybe a peace or contentment in my heart. 

The month of May is drawing to a close. It is really hard to believe that this year is almost half over. My father-in-law died the first of the year and Amy got sick the end of February. Our family has changed so much in just a few short months. 

I do praise God that we had Amy for 31 years. It is the last month of her life that is hard to praise Him for. I want to share that last month at some point, but I am not ready to relive that yet.
I'll continue to look for God's blessings in the little things. The beautiful colors of my flowers, the joyful song of the birds, the crazy cat's moody disposition, good books to read, music to bless my heart, hugs from friends, and a loving family that is supporting me. 

One of my favorite verses is Jeremiah 29:11
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

I believe this with all my heart. I know in the future I will have joy.

Memorial Day Weekend

Saturday I decided to completely clean out the closet that Amy and I shared.  In my hurry to "hide" things and make her room look more presentable to company I had stashed a good bit of stuff in her closet. She has had a very special closet door. A young artist friend of ours agreed to paint her door for her birthday. It has her favorites, butterflies and Tinkerbell. It was one of the first things she saw after her hospital stay and she got a big smile on her face when she saw it!

Amy's closet door with the artist.

 Artist's website 

She only got to enjoy it for a few days.... I will treasure it forever while I am on this earth!
So I was cleaning out stuff that tends to accumulate in a closet and I came upon more clothes, all Amy's shoes, and her jammies I had put in a bag. Special blankets, some given or made by friends and family.
More tears. More sobbing, hysterical crying.  More why Lord, why?
So I just piled them on the bed to go through when my girls could help me, because I couldn't face it then. About an hour or so later, I was composed but still probably look a mess, our retired pastor and his wife stopped by. It was such a comfort to hear his encouraging words, to take time to heal. Hugs were given, prayers said, and more tears, but tears of hope and comfort now.
Thank you God for sending Pastor to me just when I needed him.

That evening my husband and I went to put some flowers on Amy's grave. He cut off a nice branch of a rhododendron that had a lot of blooms on it. We knew it wouldn't last, but at least it wasn't plastic. My oldest daughter went on Monday and took a picture for us.

Sunday we decided to finally go to Sunday School. We have a separate class for men and women and so I didn't have my husband's hand to hang on to and no Amy to push in front of me and to sit in the back of the class with. I was so scared.   I love my class of ladies. They truly are sisters in Christ to me. They gave me a basket full of all kinds of things when Amy was in the hospital. A tea cup and tea, puzzle book, candy, a soft blanket, international coffee, tea towels, DVD's, note pads and pens, worship CD, books, candles, a figurine, key chain, and gift cards for gas and food. I have never thanked them yet. So much had happened and it was just too hard to express my thanks to these dear friends of mine that morning. There was a seat up front next to a young friend of mine who had helped me weed my garden earlier that week and it was a blessing to be able to sit beside her.  I don't know why I felt fear, but I did. I'm glad I went. They showed a video by a Women of the Faith speaker and it was funny. It felt good to laugh. It also felt good to hear others prayer requests and to hear about a ladies tea that is planned for June. I had many hugs that morning and just a few tears.  It was a good day. I even got a nap in the afternoon.

We planned a little indoor picnic for Monday and grilled hot dogs and hamburgers. I was inspired to make homemade baked beans. I have never made them before and I haven't done much cooking of late at all, but I decided to make baked beans. It took a lot of time, but they turned out pretty good. My girls were there for the meal and it was somber. We enjoyed the food, talked about life, and how different things are now. It is the way it is. Part of our family, a very big, important part, will never be with us again. It is hard to deal with and family gatherings will always be hard because there will be a hole where Amy should be.
After the meal my dear husband took me to see Star Trek. I have been a Trekkie all my life and it was something he did for me. I know he would never see it on his own! It was really good, but always reminders of Amy. In Star Trek? Yes. Just as in Iron Man, the bad guy sold his soul to help his daughter, so in Star Trek, one of the characters turned bad to help his dying daughter. We did enjoy the movie and Red Lobster afterwards. We had some quiet conversation and good food. The trip home took about 45 minutes. I let my mind wander and again the tears came. I asked my husband why he never cries and he told me that he buries it deep inside. I am so thankful for my husband who held my hand all the way home and let me cry.
It is still hard to find the good in the sorrow. But I am trying and God is giving me strength.
He has given me a wonderful family and a great church family also.

Hard Days

A Faith that is Often Against My Feelings

I've had a couple of days that have been hard for me. I don't know why.  My youngest daughter took me to see Iron Man Wednesday night and we had a good time, laughing and enjoying the movie. She helped me work outside on Thursday and I planted a few flowers yesterday also, but I want my joy back. I think all the talk of Memorial Day is weighing on me. All the fake plastic flowers at the end of the check out aisles at Wal Mart make me want to scream. I want to stop crying so much and start feeling good again.
I've been reading in Matthew about all the healing that Jesus did to the people at the time He was here on the earth and I know that Amy got the ultimate healing. But I want my Amy here now. Not sick, not with a feeding tube and a tracheotomy tube and oxygen machines and suction machines and feeding machines. That was the last month of her life.  I want her here the way she was for 31 years of her life, still handicapped but my sweet Amy. Who talked with her eyes and her smiles and I could hold her and love her. I miss her so much.

A friend of mine had this on her blog:
In the end, there are no answers, at least not any that I've found. I must put my questions and sadness in the hands of a Father who is always good, always loving, always here. I must let go of what-ifs and wonderings and move on with the memories tucked securely in my heart and an eternal hope firmly planted, a faith that is often against my feelings.   to see blog click here

I'm so glad that my faith doesn't depend on my feelings. 
Here are some happier times I want to think about right now.

Christmas 2012

 

Christmas 2011

Our new to us accessible van 2010

 

New Hair cut 2010

With Grandaddy 2007

Tears in the night.

I woke up crying in the middle of the night again. This hasn't happened in a few weeks. My day started well with physical therapy and some housework. Then my oldest daughter came and cooked supper for us. My youngest daughter came home from a week away and we all enjoyed our meal together.

Then we sorted and bagged up all of Amy's clothes.
It was so much harder than I thought it would be. Amy had a lot of clothes. We always bought her a t-shirt from somewhere we visited, and clothes were just something easy and fun to buy for Amy. She loved new clothes. She loved wearing pretty things, being told she looked so nice and beautiful.
The girls chose a few of her items to keep and I kept most of her t-shirts and bandanas to make a quilt. The rest we packed into garbage bags to share with others.  I felt like I was saying good bye again. It was so very hard. The girls said we could wait, but I knew it wouldn't be any easier whenever we chose to do it.
So I just let the tears come and the memories.
I'm not one to hang on to something if it has use and someone else can use it. The girls said I could make a quilt out of pieces of all her clothes but that would be wasteful to cut up a piece of clothing that was still in good condition. Amy didn't wear her clothes out. Time and the washing machine did!

I'm glad I had my daughters to help me. It would have been nearly impossible to do this by myself.

Amy's last Christmas with us.

During my Bible study this morning this was one of the verses that I studied.

 Matthew 6:19-21
“Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal.  But store up for yourselves treasures in heaven, where neither moth nor rust destroys, and where thieves do not break in or steal;  for where your treasure is, there your heart will be also."

Did Laura grieve?

The Lord is close to the brokenhearted 

and saves those who are crushed in spirit. 

Psalm 34:18

Sunday morning my husband and I went to church for only the 3rd time since Amy has been gone. Our church is small, about 50-75 people. It went through a remodeling project a few years ago and  we have a permanent area where we sat halfway up on the left hand side. A pew was removed and chairs put in to accommodate those that needed to be in wheelchairs. So we have sat in that row for the last few years.
But not anymore.
We tried the other side and it just didn't feel right. The last two times we went, we sat on the left but closer to the front so I didn't have to see the empty place where Amy should be sitting. My oldest daughter plays the piano a few times a month and so we are able to sit with her and I think we have found our new place.
I can still see Amy in the casket right in front of the podium, with her balloons on either side. Her stuffed animals, flowers, and fairies around her.
It is very hard to be there.
We have many loving people at our church and hugs were given and questions about how I've been. What can I tell them? It has been 5 weeks and I still am struggling everyday. I am trying to look for the good things and be thankful for Amy's life. But I am still broken hearted and crushed in spirit. I see her in every flower, bird and the sunshine out her windows and the chimes that tinkle in the breeze. I was her voice. I would tell her what flowers were blooming, what birds were at her feeder, what the clouds looked like that day. I would tell her how crazy the kitty was acting or if I could see Cocoa from the window. All this, while I was getting her dressed and ready for her day. But No More.  We were such a fan of the "Little House" books. I wonder if Laura grieved when Mary went away to college? Did she still describe everything she saw and if so, who to? Did she start writing her thoughts down then? What happened to her voice?

During our worship time one of the songs we sang was Amy's song, "Amazing Grace, My Chains are Gone." I was unable to keep from sobbing and just let the tears flow and didn't even try to sing. Then the scripture passage the pastor taught from was Mark 7:31-37 where Jesus heals a deaf and partially mute man. After Jesus touches the man's ears and tongue He prays to God and He sighs, or as the pastor said, groaned, because it was a deep sigh.
I have not had any Bible training, nor do I know Hewbrew and Greek. I don't consult commentaries. I just read the Bible and try to ask God to give me the wisdom to tell me what He is trying to teach me.
I feel Jesus  groaned because He had compassion and sadness for all the people who have special needs in this world. The way a deaf/mute man must have lived back then in the first century in unthinkable. The way   others looked at him and talked about him probably has not changed much to this day, though. There is still misunderstanding about the handicapped. Even though Amy was 31, she was very much a child because I sheltered her from anything that would have caused distress. The doctors saw on her chart that she was 31 and then they would look at her and be confused because she was so tiny. Most adults didn't look at her. They would glance and then politely look away. Children were the best and still are because they are so honest. Why is she in a wheelchair? Why can't she talk? They "got it" that even though she can't talk back she understood and they could talk to her. Most of her cousins were great with her. They would talk to her.
Most adults don't know how to act. They can talk to their dog or their cat or even a plant but don't know how to talk to a person who can't talk back to them. It makes them uncomfortable.
Well,  I think this Bible passage is teaching us to show love and compassion to those with special needs.To treat them as we would want to be treated. If you see a mentally handicapped person or someone with special needs do you smile and say Hi? Do you try to talk to them? Or do you look away as if they don't exist?

So why didn't Jesus heal Amy? I prayed, entreated, cried, begged? Even though she wasn't healed here on earth, she is healed in heaven. The last verse says it all and I have to accept it as His will.
“He has done everything well.” 


 Mark 7:31-37
Then Jesus left the vicinity of Tyre and went through Sidon, down to the Sea of Galilee and into the region of the Decapolis. There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him. After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue.He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly. Jesus commanded them not to tell anyone. But the more he did so, the more they kept talking about it. People were overwhelmed with amazement. “He has done everything well,” they said. “He even makes the deaf hear and the mute speak.”

 I heard this song on the radio coming home today and wanted to share it with you.

Amy's Friends

Amy had many friends over the course of her thirty-one years. Most of them were adults, friends of mine, teachers and helpers in her multi-handicapped class. That was one of the many names used over the years for her class of  special-needs children. She had a few teachers and helpers stay in touch with her. The day program she attended for the last 10 years has many helpers that loved her dearly and, I'm told, miss seeing her smiling face on the three days a week that she attended there.

Amy has had three very special young friends throughout  the years.

When Amy was 8 I started watching our neighbor girl after school. She was the same age as Amy. Amy's sister was 10 and they became very good friends.She would visit us a lot in the summer and she just became like a sister to Amy and another daughter to me. She always treated Amy no different than she would treat any other person. As they grew older she and Amy's sister drifted apart with college and work schedules and trying to "find themselves" as everyone needs to do. But the last few years she has stopped by more to visit and was here to visit Amy and stayed the evening with our family to celebrate Amy's last birthday. I felt like our family was complete again. She brought Amy the biggest balloon I have ever seen in my life. Amy adored her adopted sister and she made Amy's  life so much happier as she is one of those people who can make a party out of the littlest thing and everyday was an adventure when she was here. I hope she will stop by now and then just to see me, as I miss her.

The year Amy turned 18 my husband and I joined the youth team in our church. Our youngest daughter was now in youth group and our son would be in a few years. So for the next 8 years we were team leaders and Amy loved going on Sunday evenings to watch the teens play volleyball, other silly games "ice breakers", a time of singing and study. She also enjoyed many outings that we would go on with the kids. I had a group of girls that I discipled from the time they were in 7th grade until they graduated. We would have a few minutes at the end of each meeting to talk about their week, their prayer requests and then we would pray for each other. There was one girl in particular who always talked to Amy and when we prayed she would often be the one who prayed for Amy's needs. When she got married we took Amy to her wedding and Amy really enjoyed it. She moved away and is now expecting her first baby. After Amy died she sent us the sweetest card and a Willow Tree figurine that is titled "Forget-me-not" holding thoughts of you closely.

The last few years God brought another little girl into Amy's life to be her special friend. I think she is about 9 now. She would come say "Hi" to Amy during the welcome time at church. She would make cards, color pictures and make paper bracelets and necklaces for Amy. Her mom is a very special lady who has helped me out by taking care of Amy when my other children were unable to care for her if my husband and I had to be somewhere or just to get away.  She would often bring her daughter with her to be with Amy to play or read stories or listen to music or whatever they would do. It was a very special time for Amy and she loved having them come and stay with her. They visited Amy in the hospital and the whole family including Amy's little friend came to see her the day before she died.  When I asked her mom last week if I could give her something special from Amy this is what she wrote back,
"That is so thoughtful of you. I know she will treasure anything that is Amys. I don't think I told you, but she has a bulletin board by her bed with a few of Amy's pictures that I printed off your facebook page and she wrote "Amy has seen Him" on it and "Amy can run and dance and praise Him with everything she has" on it."

Matthew 21:15,16
But when the chief priests and the teachers of the law saw the wonderful things He did and the children shouting in the temple courts, "Hosanna to the Son of David," they were indignant.
Do you hear what these children are saying?" they asked Him. "Yes," replied Jesus, "have you never read, "'From the lips of children and infants You, Lord, have called forth Your praise'?"

 Amy has seen Him, 

Amy can run and dance 

and praise Him with everything she has.

Counting His Gifts

I'm reading three books right now plus my Bible.

I finished the Inductive Study Bible  last year and as I had purchased another one I was eager to get started on it. I decided to start in Genesis and work my way through. When Amy got sick I was in Leviticus. I haven't had the strength or desire to keep studying and I knew I needed to draw from God's Word for healing. I tried time and again and only managed a few chapters. I knew it was time for something different. MY plan was to work from the beginning. This was not God's plan. I started in Matthew Tuesday  and once again God is speaking to me as His Word comes alive in every word I read. This has been the method of study that I have used for 15 years and I really enjoy it.

Wednesday I picked up "One thousand gifts devotional" journal by Ann Voskamp. I read her book, One Thousand Gifts, a few years ago and starting following her blog and it really made a difference in my life. I started my own 1000 gifts journal in February of 2011 and was up to #1411. That was entered on February 2nd. Nothing since then. Had I not recignized any gifts that God had given me in the last 3 and a half months?  I picked up her devotional book and thought,why not try again, to count the gifts in my life. She says, "He who is grateful for little is given much laughter...and it's counting the ways He loves, this is what multiplies joy.  The life that counts blessings discovers its yielding more than it seems."  I prayed that God would help me to know afresh that counting my blessings would help me lead a more joyful life. That yielding to Him would help me overcome my sorrow.  In the back of the journal is a place to record 1000 gifts. I was able to write down.....I am thankful for the thirty-one years that You gave me with Amy.

I also enjoy reading fiction. It is an escape for me, like a good movie, but it lasts much longer! Last evening I started the newest book by Bodie and Brock Thoene. "When Jesus Wept"  It is a fictional story based on Lazarus. The book opens with Lazarus going to the temple for cleansing after his wife and baby died. It had been a month and he was to be done grieving according to the Jewish law. Thirty days was not enough time for him to finish his grieving. How I can relate with this!

About a week ago I started reading "A Grief Observed," by C.S. Lewis. It is the notes he wrote after his wife passed away.  I just read a little at a time, to let it soak in. This is a part of what I read today:  "Aren't all these notes the senseless writhings of a man who won't accept the fact that there is nothing we can do with suffering except to suffer it? Who still thinks there is some device which will make pain not to be pain. It doesn't really matter whether you grip the arms of the dentist's chair or let your hands lie in your lap. The drill drills on. And grief still feels like fear. Perhaps, more strictly, waiting for something to happen. It gives life a permanently provisional feeling. It doesn't seem worth starting anything. I can't settle down. I yawn, I fidget, I smoke too much. Up till this I always had too little time. Now there is nothing but time. Almost pure time, empty successiveness."
Wow! This has been how I have been feeling. I have so much to do, but don't want or feel like doing it. It is like I'm waiting for something to happen. And I think what I have been waiting for is Amy to come back.  Not that I truly thought this would happen. It is like I am waiting for life to be the way it was and not to have to face the way it is.  I didn't want to do anything because that meant that life was continuing without Amy.

I stopped at the cemetery again today.  It was bright and sunny and a breeze was blowing. Amy's flowers are still blooming and her pinwheels that her sister put there were whirling around so fast. I had put a butterfly on a stake that has springs in the wings and the butterfly was flying in the wind. I was smiling.
Yes, I realized I was smiling! I am so thankful that we have a beautiful hilltop where Amy's body can rest. If Amy can look down from heaven and see us, I know she is loving the butterflies and the pinwheels and the flowers that we have put on her grave. But more importantly I know she is so very, very happy that her Mama is not as sad anymore. That I am looking for God's gifts everyday and that I am counting His gifts again.
Yes, I am counting His gifts and one of the best gifts He ever gave me was my sweet Amy.

WHITE SOCKS

Friday I ventured out by myself to go to physical therapy (I've got a bum knee) and for the first time to do a little local shopping. I stopped at our medical supply company to get a brace for my knee as the therapist recommended it. I picked out what I needed, went to pay, and right there beside the register was an oxygen machine and a suction machine, just like we had to use for Amy. I felt my breath being taken away. It was like she couldn't ring me up fast enough so I could get out of the store.
At physical therapy I saw a friend also getting some therapy and he asked how I was doing and if there was anything he could do to help. So many people tell me this. I am grateful that I have so many friends that want to help, but nobody can bring Amy back. No one can give me just a few more minutes to hold her in my arms and sing to her, to tell her I love her. That is what I desire. I will never bathe her again, paint her nails, fix her hair, dress her, give her her meals, sing her to sleep, or read to her. NEVER AGAIN on this earth.

So, I am trying to move on with life without  Amy.

We live in a small community and so seeing people who know me is very likely, even the pharmacist at Wal Mart mentioned Amy and that she was sorry for our loss. Every aisle seemed to remind me of something that Amy would have liked. I drove through McDonalds and saw that the Happy Meal toy was fairies. Amy loved butterflies and fairies. I didn't make it out of the parking lot before the tears came.

Our children either weren't in the state or had to work on Mothers Day, so my husband and I decided to just go away for an overnight and not be around anything that would bring back memories. I think that is impossible.  The only vehicle we have is our van and there is this big open space behind us where Amy should be.  We did try to enjoy ourselves, though. We visited Fort Necessity, Friendship Hill and Ohiopyle State Park.

Ohiopyle State Park

flowers at Fort Necessity

Friendship Hill

 We ate Mothers Day brunch at a family owned restaurant in a little town. While we were eating I noticed a young man getting some food at the salad bar. He had on a dress shirt, nice brown pants, black shoes and white socks. One of his pant legs were caught up in the top of his white socks, making them very noticeable. As I looked at his face and his actions, I could tell that he had special needs. He was confused as how to hold his plate and put the food on and a man (his father?) came to help him. Again the tears came and could hardly be stopped. I left a brochure of Amy's story on the table with our tip as I'm sure the waitress wondered why I was crying so much.

Amy opened our life to a whole word of people we would have never known if she had been "normal."
She has had so many caring people over the years. Therapists, doctors, teachers, aids and van drivers.
I have so much compassion for anyone that struggles with special needs children and adults or even someone who has to be in a wheelchair. I am very aware of the inaccessible places and the places that say they are accessible and are really not. Amy has made us aware of so much.
I don't think that I will be able to visit anywhere without thinking of my precious daughter and how she would have enjoyed seeing the flowers, the beautiful waterfalls with the cool mist on her face, the cow in the middle of the road that wouldn't move, the museum with the "talking" statues, the cold wind on her face and all the beautiful scenery.

 That was my Mothers Day weekend. Many tears, a few smiles.

"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for His compassions NEVER fail. They are new EVERY morning; great is Your faithfulness" (Lamentations 3:21-23)

The 8th

The 8th

Will the 8th of every month always bring me sorrow?

It has been one month since Amy died.  

 

The day Amy died my husband and son were outside working and my daughters, my sister and I were with Amy.  I had a dear friend visit for a few minutes and then the hospice nurse came and checked on Amy. Our assistant pastor came and sang for Amy for the last time.  About 11:00 the girls and I washed Amy's hair, put some perfume on her and then we noticed her lips getting blue and my daughter-in-law rushed outside to get her husband and Amy's daddy from the fields. I put on one of Amy's favorite cds, Beethoven's 9th Symphony. I crawled in bed with Amy and held her in my arms. Her oldest sister was holding her on the other side of the bed and the rest of the family was gathered around her. Her Daddy told her it was ok to go to Jesus and before the symphony was over, in a little less than an hour Amy breathed her last and woke up in Jesus' arms. Her only words here on earth were Mama and Dada and she only said them for a few months when she was a toddler. When she opened her eyes in heaven she would have seen her heavenly Father and I'm sure had many words of praise for Him.

I miss her so much, even though I know she is happy and free. It is more than just the loss of a loved one. I took care of her every need and she completed me. I feel like something is missing in my life. Like an amputee must feel. I need to learn how to walk again.

I take comfort in God's words and in music. The  last song our Assistant Pastor sang to Amy was

"It is Well with My Soul." The writer on the hymn knew my sorrow well. He wrote the song after loosing four daughters.

It Is Well With My Soul


When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life,
Thou wilt whisper Thy peace to my soul.

But Lord, 'tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul.

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
 Even so, it is well, with my soul.

 Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul

I cherish the times God whispers peace to my soul, because He does. And I can't wait for the day when my faith will be sight and I will see my Amy again and I will be whole.

Thirty-one years and one month. Cont'd

Thirty-one years and one month. Cont'd

Amy's oldest sister finished college and lived away for a year. Then she moved back home and moved into Amy's room with her. They shared some special times together and secrets. Amy was a good secret keeper.

Even after she got her own apartment, they would still go out to eat, to see a movie or to the zoo together. They always had a special bond.

Amy at 20.

I was busy homeschooling two teenagers and before I knew it, they were off to college also. Amy and I grew closer.  I had more time to just be with her and enjoy her, not just take care of her. Around this time, she stopped putting weight on her feet at all and would not stand anymore, so we carried her everywhere or used her wheelchairs. I would take time to lay down with her after school and listen to her stories on tape recordings from the Library for the Blind and Handicapped. I started reading her stories from the Bible and the books the kids read when they were in late elementary and middle school. Being a book-aholic I have so many more books that I had planned on reading with her, but God had other plans for her life and for mine.
A few years ago, on one of their trips east, my father brought out an old Victrola that he had repaired. I would wind it up and have a song ready to play as soon as Amy got home from her day program.  I would get her out of her chair and hold her in my arms and we would dance back to her bedroom to the old sounds of "I'll Take You Home Again, Kathleen," "Put on Your Old Gray Bonnet", "Old Folks At Home," "Oh, Johnny, Oh Johnny," and many others.
Just a year ago at a wedding of a dear young friend of ours, the brides brother asked Amy to dance. I will never forget that moment. How special for her. I wish I had a better picture, like the ones I have in my mind, but this one will have to do to share with you.

Amy dancing at a wedding. She was 29.

Now she dances in the arms of Jesus, but not like this. I imagine her back straight and her arms are held out clasping Jesus' hands and she is on her feet, with strong legs, like a ballerina and she floats as light as air to the heavenly songs that the angels are singing.  And she throws back her head and her hair flows free and she laughs and her eyes sparkle and she is so happy, so very, very  happy.

There was a wedding Amy went to before this one though. It was a very special wedding. Her baby brother got married! He had gone to college 2000 miles away and met a girl out there. When Amy, her sister and I took the road trip west, we were going out to his graduation, and the rest of the family flew out. A little more than a year later, we made another trip out west, This time Amy, my husband and I took the road trip and the rest of the family came on their own. We were going to his wedding! We took a week before the wedding and visited some sites along the way. Amy actually had her wheels on the Oregon Trail. She saw buffalo and big horn sheep and elk right along the road. Of course she wore her Little House bonnet again.

Amy, September 2010

This was such a happy trip. My husband and I figured that this would be what the rest of our trips would be like traveling with Amy. We had it figured out pretty good. We had a van and it was converted with a Braun ramp that would kneel the van and we would just roll Amy in. She had the whole middle of the van and we would use the back seat to change her or one of us could rest there, or sit there and feed her meals if we ate as we drove.  It had large windows that Amy could see out of. She really liked to travel.

Then there was the wedding. Such a very long day for Amy, but she loved every minute of it!

Wedding in Montana

 Now Amy had another sister, who she loved from the very beginning, because her brother loved her.

Reception back home.

Life seemed so perfect.

"For My thoughts are not your thoughts, 

neither are your ways My ways," 

declares the LORD.

 Isaiah 55:8

For I know the plans I have for you,” 

declares the Lord, 

“plans to prosper you and not to harm you, 

plans to give you hope and a future.

 Jeremiah 29:11

Thirty-one years and one month. cont'd

Amy made our family and our life special. The children all grew up knowing that Amy came first. Sometimes in fun we called her a spoiled brat. She was! We saw to every need we could think of with her. Through school she had speech, physical, occupational therapy. They took her swimming, bowling, shopping and horseback riding. My younger two volunteered in Amy's class and made friends with other special needs children.  I heard about "The Brass Ring Society" that gave gifts to children with special needs. Most kids requested a trip. We asked for a pony. Amy had been involved in Therapeutic Riding with her school and so her own pony seemed a perfect idea. She was granted her wish and Cocoa came into our life. Then we got some chickens and a few sheep to keep Cocoa company. It gave Amy's sisters and brother busy with daily chores. We bought Amy a heated waterbed, not only did it help keep her warm with her poor circulation, but it alleviated bed sores. In her 31 years, she never had a sore on her back or bottom, until she was in the hospital.

Easter, Amy was around 10 or 11

We tried to take a vacation every year and Amy always went with us. She loved to travel and to see new things.  She experienced so much that most handicapped children cannot, because we carried her until we couldn't and then we pushed her in her chair in places we probably shouldn't have! 

 

  She went to Prince Edward Island and enjoyed all the Anne of Green Gables sites, as we had all read the books and Amy had heard them on audio. She also enjoyed the movies about Anne and just the last few years started watching the Avonlea series. We went hiking in the Smokies, visited Dollywood, went to the Atlantic Ocean and we all even rode one of those family bicycle things. ( I do not recommend that!)  

 

I think one of her favorite trips was when Amy, her younger sister and I went on a road trip about 4 years ago. We visited a lot of the Little House on the Prairie sites, and as we traveled we listened to the audio books. Amy wanted a bonnet like Laura's and so of course I bought her one. She wore it so often!

 

When she was 19 my parents lived with us for the summer and put an addition on our house so Amy could be on the ground floor. She had her own walk-in closet and her own bathroom, which she generously shared with her mom!

Amy's first look at her new room!

 We've had fun decorating the room just for Amy. She had flowers and butterflies hanging from the ceiling, fairies and Disney posters, Veggie tale pictures and stuffed animals. Lots of stuffed animals. Wind chimes and rainbow lights in the windows and violets.  Any cards and pictures (colored by young friends) she received we taped to the back of her doors. 

This was Amy's room.  

WAS.

But now her home is in heaven and we can't even begin to imagine the flowers, the colors, the music and the GLORY that she is experiencing.

"There will be a day with no more tears, 

no more pain, and no more fears
There will be a day when the burdens of this place, 

will be no more, we'll see Jesus face to face" 

Jeremy Camp

Thirty-one years and one month.

That is all I had with Amy. It seems like a blink of the eye.  Amy was born when I was 23 years old. We brought her home and life was perfect. She had a big sister that was 2 years old.  I learned to smock and made matching dresses and bonnets. My girls were everything to me. My husband had started his own business and he worked 14-16 hour days. So our girls were my life. 

Waiting for Christmas morning.

 And then Amy started having "problems."  She couldn't pull herself up to stand, but could crawl and then walk if we put her on her feet.  She started to say a few words and then stopped making sounds.  She would cry and cry and not be consoled. She started spitting and constantly chewing on her hands and holding them together. I started searching everywhere for the answers, Hershey, State College, National Institutes of Health. We were told Amy would be severely mentally handicapped, we were told she was going to die before she was 7, we were told they didn't know what was wrong. I kept searching and finally, finally when Amy was 4 years old, Massachusetts General knew the answer.  They told us that Amy had Rett Syndrome.

In our search for answers with Amy our marriage suffered and then I became pregnant with our third little girl and our marriage problems got worse. I was having a hard time being mama to a 7 year old, a 5 year old with special needs, and a toddler and striving to help my husband with our business.  Our 7 year old became a second mama to Amy because I desperately needed her help.

Amy about age 6

 Then I reached out to God. I asked Him to take control of my life, to forgive me for my past failures in our marriage, to guide me because I wanted to live for Him now.  Our lives slowly changed.  Our family was made complete with the birth of a little boy when Amy was 7.  Now our lives were filled with  learning. Learning about God and His love,depending on God to be the leader of our marriage and our family. We started homeschooling the youngest two. Then our oldest started school at home in 7th grade.  Amy was surrounded with love.

Amy on my lap at age 8

Rett Syndrome Information