One Year Later

     This past October 29, 2011 marked the one year anniversary of the passing of my sister Mary Magdalene Rodriguez.  The weeks prior of this anniversary my home felt eery, it felt like the 29th was creeping up so slowly and yet rapidly.
The phone calls started to come from siblings,
     "What are you guys going to do for Mary's anniversary?"
     "Are you guys going to do anything for Mary?"
     Every time some one would ask what we were going to do for Mary, the more anxiety seemed to fill my heart.  I know the intentions were in good faith but it did not subside that pain still lingers in one's heart.  I would look at my mom, try to smile then ask,
      "Well, what are we going to do for Mary mom?"
      "I don't know," as tears filled her sad eyes.
      "Neither do I," I said as I wrapped my arms around her and just hold her until the tears stopped.
     Death is a void that seems can never really be filled, the numbness is finally gone but the pain still lingers.  I guess it will always linger, even though I know she is not suffering anymore, no more fears for Mary Magdalene because she's in heaven.  No more round the clock morphine, no more feeding tubes, no more infections, changing diapers bed baths,visits from hospice staff, pressure sores and worries of feeling scared and helpless.  I should be happy that my sister is in a better place but my heart still aches, I can't feel her familiar bear hug embrace, her smile are only captured in priceless pictures.
      I get so angry and guilty at the same time, angry because she is gone, guilty because why would I want her here if she was just suffering.  The scar of losing my sister may be healed on the outside of my heart but it's the inside of my heart is were the scar that is so tender is painful.
     On the 29th of October 2011, my dad, mother, brother and I went to the cemetery for a prayer vigil and rosary for the intentions of Mary Magdalene Rodriguez.  We left some whit e roses with little purple flowers, I sang to her the Sleepy Time Song that I used to sing to her when she couldn't sleep.
My mom got off her wheel chair and gently touch her plaque as tears ran down her face with trembling lips she said,
      "I love you Mary, mom loves you very much.   I miss you but I know I will see you one day," as she sat back down on her wheelchair, my dad looked up at Mary's plaque he said,
       "Bye Mary, I'll see you later," as his voice cracked.
On November 2, 2011, is All Souls Day in the Catholic Church. Which happens to be Mary's birthday, she would have been 36 years old. We went to mass to pray for all who have passed away but my heart was only praying for my sister.  After mass my dad, mom and I went to a bakery where Mary loved their birthday cakes.  Later on that day we all sang Happy Birthday to Mary and as a family, we all blew out the candles that were lit on her cake.  The cake just didn't taste the same with out having Mary there with us.  I know she was with us in spirit and her memories in our hearts.   However, we are still trying to come to grips with the reality of her being gone, I guess we will never get use to missing the one we love.

Father's Day 2011

Father's Day 2011 for my dad was bitter sweet, bitter because his daughter Mary Magdalene was not here to share it with him along with my other brothers and sisters.  Sweet, because my parent's home was filled with love from all their children and grandchildren who came or called to wish my dad a Happy Father's Day.  He got cards, electronic picture frame and gift certificates as gifts to celebrate the occasion.
 My dad rarely talks about his feeling about Mary Magdalene's passing and if anyone would ask how he fells about Mary Magdalene not being here,
"Mary is gone, she is with Our Father in heaven," is the usual answer he would reply .  However, I know it's much more than a one liner that shields him from actually feeling pain and loss.  All of Mary Magdalene's clothes have been given to charities along with most of her medical equipment. Two plastic containers in the garage are filled with Mary Magdalene's keep sakes.   We have one Eeyore coffee cup and glass that we keep in the kitchen  cabinet belonged to Mary Magdalene.  One morning I made coffee and served my dad his traditional cup of coffee using one of  the cups that belonged to my sister.  At first my dad didn't  notice what cup he was using until he finished his coffee.  Once he realized it then came an explosion of emotions,
"What the hell is wrong with you!  This was Mary's cup, Mary's!  I could have dropped it and it could have broken!  Don't you ever give me this cup again because I don't want to be the one that might break it!"
"But you didn't Dad, it's still in one piece. I knew it was Mary's cup and that is why I gave it to you, to keep Mary alive in our memories of her and to not keep her things just locked away," I replied.
"No!  It's Mary's cup! I lost my Mary!   I never ever want to use this cup again, do you understand me?!" as he walked into the kitchen held Mary's cup  with such care and  proceeded to wash Mary's cup, dried it  with a dish towel and  slowly placed it back into the cabinet.
"Okay Dad, but I know Mary wouldn't want us to keep her memory in a cabinet," I said as I watched my dad closing the door of the kitchen cabinet.
He turn to me and said,'Every day I think of my Mary, every day my heart aches so much!  I thought when I lost my mom I experienced grief and sadness  but that was nothing compared to losing my Mary.  I hope none of my children who have kids never feel the pain of losing their child, it doesn't matter if they a small or adults, the pain is just too much,"
I walked up to my dad and gave him a gentle hug and kissed his cheek then said, "I'm sorry  Dad, I didn't mean to get you upset, maybe with time the pain will lessen but we both know it will never completely go away,"
He looked at me and with tears ready to fall he said, "No, the pain will never be gone, it will never go away but I know one day I will see my Mary again and I am looking forward to that day,"
So remembering this year's Father's Day holiday I think of an old cliche to be true,  "Every day is Father's Day".  It is all year round ,rain or shine, in good time and in bad and even in death.   Just because my sister has gone to heaven, her memory will always be in my dad's heart.
I love you Dad and I know Mary Magdalene is with us every single day, regardless if it is a holiday or not.

Mother's Day 2011

Does anyone remember jigsaw puzzles?  I remember my parents bought  many boxes of them through out my childhood.  Some jigsaw puzzles came in very small pieces and some have large ones. I remember the vibrant pictures of  landscaping mountains or the crashing of the seashore against the rocks,  the forest always had the colors of the Autumn season as my family would work together in completing the puzzle on the dining room table of our home.  Sometimes the worst thing about completing a jigsaw puzzles can be when it come to the end of it and the last piece of the puzzle would be missing.  We would look all around the dining room for the missing jigsaw piece and sometimes we would find it and sometimes we wouldn't. While we would be working on the puzzle, my mom would give us our own section to work on and when we finished our section and placed them all together, we would get such a great sense of accomplishment as we all gazed at the finished puzzle. Sometimes  a jigsaw piece from the box would already be bent or broken apart in two so  my mom would always find a way to mend it with some clear sticky tape.  After my mom would fix the broken jigsaw piece she would say, "Look, it's good as new," and place the puzzle piece in it's proper place to complete the jigsaw puzzle.   

Reflecting on these memories reminds me of how Mother's Day 2011 may have felt like to my mom.  Most of my brothers and sisters who lived local came to visit my mom, we are all the different pieces of my mom's heart.  All of us sat together and talked and laughed with stories from the past, just like placing different parts of a jigsaw puzzle that comes together as one.  My mom received beautiful flower arrangements, colorful Mother's Day cards in the mail and in some cards where given person by her children, the array of  the different colors of the cards and flowers reminds me of the many different colors of a jigsaw puzzle. My mom received phone calls for her sons and daughters and that would make her happy because she always loved to hear from her children.  However, this was the first Mother's Day without my sister Mary Magdalene and I knew my mom's heart was sadden.  Even though my mom  darn well knew that her daughter Mary Magdalene is in heaven, I know that my mom longed to see her and wished things may have turn out differently.   Mary Magdalene is my mom's missing piece of her heart's jigsaw puzzle and it has been a painful one.  My mom knew that her daughter is no longer suffering or in pain but the pain in my mom's heart will always remain and as time goes on it may lessen but will never be completely gone.   At the end of the day, I asked my mom about how she was feeling about Mother's Day without Mary and she said,  "I miss her very much but I know one day I will be with her again," and smiled.  I hugged my mom and said,"Your right Mom, you will,"   One day my  mom will finally find the missing jigsaw piece of her heart that is waiting for her up in heaven.

Six Months Later...

On April 29th it has been six months since our sister Mary Magdalene went back to heaven to live with God our Father, Jesus Christ his son, the Holy Spirit and all  the angels and saints;  I know she is in very good company in heaven.  Yet my heart is still healing for the pain of loosing my sister even though I know she is in a much better place.  Here is a picture of the Mary, our sister Irene and myself at the last family gathering celebrating a birthday of one of our brothers and meeting our newest nephew for the first time.  I remember posing for this picture as all three of us just looked into the camera and smiled. Now when I look at this picture,  it strikes me with the most remarkable feelings of love.  Mary's warm smile and her familiar streak of the natural silver highlight on her dark black hair that God placed  especially on her head,  just reflects the love she has for her family.    When my sister Irene would come and visit us at home, Mary would always gleam with excitement and say, "Renie's coming," and just be so happy to see her come over for a visit and would be looking forward to spend time with Irene.  My sister Irene has been living on her own for years and Mary loved every-time she'd come over for a visit.

 Today is the sixth month anniversary of Mary's passing; this morning I was on our computer when I read on a social network that my sister Irene had dreamt of Mary the previous night.  In this dream she told Mary how much she loved her and Mary's replied "I love you more,".  As I sat at the computer after reading my sister's comment and I was just in awe as it brought me to tears because I too had a dreamt of Mary yesternight.  In my dream I was calling for Mary though out our home and did not get any reply from her,  "Mary where are you?  Where are you ?" I said in the middle of my sobs, I couldn't find Mary anywhere.  As I started to feel myself coming out of my dream when I suddenly felt someone hugging me just the way my sister Mary used to give a hug.  Then I heard Mary softly say, "It's okay Emils, it's okay".  I woke up so startled and yet  had such a sense of peace, as I swiped the tears from my eyes. In reflection on what my sister Irene and I dreamt the previous night, I just want to say, 

"Thank you God for allowing our sister Mary Magdalene to comfort us."

Mary's Traditional Easter Dish

Every Easter my sister Mary Magdalene would make a Easter tray of  goodies and every year we would eat the candy she placed on her tray.  It had all kinds of Easter theme candy but Mary's favorite were the marshmallow Peeps.  She loved Peeps and every year she looked forward in making her tray and sharing it with her family.
She would place plastic green grass has her base on a tray and lay the chocolate foil eggs and pastel color jelly beans and Peeps all around the grass filling the tray.  She would have my dad or I drive her to a Target so she could get all her supplies of candy and Peeps in order to make her Easter Tray.
On Palm Sunday we would come back from church and my sister would ask,
     "Can someone take me to Target so I can get my tray ready for next Sunday?"
     "Sure Mija, I'll take you," said dad
     "Thanks Pops, I need to buy my stuff for Easter," said Mary
 So my dad and Mary would head to Target and come back home with bags full of Easter candy.  As they walked into the house my mom said,
     "Oh! I see somebody is ready for Easter,"
     "Yep!" Mary replied wearing a smile from ear to ear as she headed to her bedroom for a nap.  Shopping was always fun for Mary but after shopping she would always need a nap to regain her strength.
On Easter morning, after we came back from church and my mom and I were busy in the kitchen working on our Easter ham, Mary would go into her bedroom and come out with Easter candy  and grass ready to make her Easter tray.
     "Mary, you gonna make your Easter tray?" I asked
     "Yep," said Mary
     "Do you need any help with it?" asked my mom
     "Nope" answered Mary
I think my mom was trying to help my sister so she could try to sneak a candy or two from Mary.
      "Okay Mamas, but if you need any help, just let us know and we will help you," I said
      "That's okay, I don't need any help; I like to make this by myself," said Mary
You can hear all the candy being spilled over the dining room table and the crumbling of the green plastic grass coming out of the bag.  We would already have the tray out for Mary so she could start making her Easter master piece.
So in a few minutes, my mom and I would hear,
      "I'm finished!  Do you guys want to see it?" ask Mary
     "Of course we do Mary, bring it over," said Mom
Mary would carefully stand up and place the Easter tray in her walker and roll it towards us so we could see what she had done,
      "It's beautiful Mija!" exclaimed mom
      "Yeah Kiddo, it look good enough to eat," I said
Mary would gleam with pride and placed the tray in the middle of the dinning room table, and that would be our center piece for our Easter feast.
    This year will be the first year that Mary will be celebrating Easter with us from heaven.  This year I will be making the Easter tray in her memory and my heart at time feels so heavy with grief because I miss her so much.  My parents and I are going to give Mary flowers and will add some different color Peeps on wood skewers and add them in the flower bouquet because we all know how much Mary loved her Peeps.
Note to Mary: I know Mamas you are in heaven and I will make your Easter tray because I know that is what you would want us to do.  I love you, I miss you but because Christ rose on the third day and destroyed death forever, I will see you again.  Happy Easter Mamas love Emils!

  

  
  
  

Beautiful Surprise

     On March 22, 2011 we received a letter in the mail from the Arcadia Mental Health Center.  My sister Mary Magdalene went there on a monthly bases after her nervous break down when she was diagnosed with MS, she went for monthly counseling and medication.   However, it was odd for us to receive a letter from the center since Mary passes away on October 29, 2010.    The letter was from the Clinical Program Head and it notified us that an employee who worked with Mary Magdalene in the Creative Minds group was changing positions and as she was getting ready to transfer, she found some painting that were done by my sister Mary Magdalene.  The Creative Minds group was a support group for women with mental illnesses and would make all kinds of art and craft items.  This is the group that got Mary to make her priceless bracelets and go on an occasional field trip.
     Part of the letter read, "These paintings are a beautiful creations that reflect Mary's artistry and wonderful spirit."  the paintings were going to be kept in Mary's councilor's office and invited us to pick them up.
Needless to say that when we read this letter, I shot out of our home and speeded right down to the center to retrieve the paintings in my parent's car.  As I drove to Arcadia, I felt the the car couldn't go fast enough and if I was able to fly, I know I would have flew.
     When I got to the center, I parked the car, walked in through the metal detector and went directly to the front desk.
     "May I help you?" asked the receptionist,
     "Yes, I am the sister of Mary Magdalene Rodriguez who was a patient here, we received a letter
       today informing us that two paintings that were done by my sister  and they are here, may I have them?"
I then proceeded to show her the letter we received in  the mail,  the young woman
read it and said,
       "I will go and check to see where I can find her paintings, if I find them I will give them to you,"
       "Thank you very much," I said
A few minutes later, the woman came with to painting and handed them over to me,  I looked at them in awe and started to cry.
       "They are pretty, very colorful," said the receptionist.  
       "Yes, they are; I can't wait to show them to my parents; thank you for your time," I said.
       "Your welcome, have a nice day," smiled the receptionist.
I walked out with the painting and speeded back home; as I drove up the drive way of our home, I looked down at the painting and said,
        "Welcome home Mamas!"
I walked into the house and my mom and dad were waiting patiently,
         "Let's see them, how do they look?" asked dad
As I displayed them to my parents, I could see the joy in their eyes,
         "Their beautiful!  What a beautiful surprise!" said my mom
The paintings are now framed and are ready to be display at home, it's nice to know that Mary had so many talents that we are able to cherish them forever; we are also thankful to the Arcadia Mental Health Center for notifying us about these painting.

Starting On The Road to Hospice

My migraines had started to come back and I knew it was because of stress so I made an appointment with my doctor.

The next morning I had appointment at eight with my doctor and was able to leave Mary for two hours knowing that my parents would be home to care of Mary. 

         As I sat in his examination room I was on edge because I didn’t want to be gone from home for too long.  It was just a couple minutes that felts like hours when my doctor came in and said,

         “Emilia, what’s going on?”

I looked at him and just broke into tears and just started crying.

         “Emilia, what’s wrong?” asked the doctor

         “I’m getting migraines and they don’t go away,” I cried.

         “Again I ask, what is going on Emilia?  What do you think

         are causing these migraines?” questioned my doctor.

         I don’t know,” I answered.

         “What is going on at home?  How is your family?”   
        “Mary’s MS is getting worse, she had a G-Tube placed

         because she kept vomiting but the problem is she is still      

vomiting  and no one can give us an answer on why it’s happening. My mom and I have been talking about hospice but we don’t know if we should,” I answered.

“If your family is thinking about hospice, maybe it’s time your family should consider it since your sister doesn’t seem to be improving over all in her health,” said my doctor.

I just started to cry even harder, the thought of my sister passing away was unconceivable to my parents and I.  We kept hoping that Mary would get better or get to a point to where Mary’s downward spiral of her health would just stop.

         My doctor then gave me a business card and pamphlet to a hospice company that he referred to his patience's.  Hospice, the word didn’t seem real to me, I always heard other families dealing with a family member being in hospice but never imaged it happening to us.  I took them information home along with a prescription for my migraines.  Driving back home all I could think about was how am I going to bring the subject of Mary being in hospice to my parents and even more so how to talk to about with Mary.  

         When I got home and parked the car in the garage, took a deep breath and walked into the house to find my parents in the living room, sitting on the lift chairs, drinking their morning coffee and watching television.

         “How’d it go Mija,” ask my dad

         “Okay,” as I walked into Mary’s bedroom.

         “Hi Mamas, I back from the doctor, are you okay?”

 I walked up to her bed and gently took her hand, Mary

 just looked at me and smiled and looked at my with her huge brown eyes,

“Oh Mamas, I love you so much.  You know that right? You know how much I love" I said

Mary smiled as tears ran down her cheeks and she tired to blow me a kiss.

         “I just wanted to let you know that we love you very much and mom, dad and I will always be here for you know matter what,” and I laid tenderly my head on Mary’s chest and softly cried.  I could her her heart beat so slowly, her chest rose gently up and down to the rhythm of her breathing.  I wanted things to go back to where Mary would have her independent back to the point were she would be, talking, walking, just being her old self.  I wanted to hear her laughter and see her living life the way she used to be but I knew she couldn't and it killed me inside, this pain of helplessness was truly unbearable  that it pierced right through my very soul. I lifted my head off Mary's chest, kissed her cheek and then wiped the tears from my eyes and Mary's too.  

Before I left Mary’s bedroom I make sure I Love Lucy was on television and told Mary that I would be back in a little while,

Mary just smiled at me and  then turned to look at television.

         I walked into the living room determined to show my parents the business card and pamphlet my doctor has given me.  I think this was one of the hardest things I have ever had to do in my life.

         “What are you guys watching on T.V.?”

         “The news,” answered my mom.

         “How’d it go with the doctor, did he give you anything for 

         your headaches?”

         “Yeah but he also gave me something else,”

         “What did he give you?” asked my dad

         “A pamphlet,” I said

         “Is it a pamphlet on migraines?”

         “No dad, it’s about a hospice service, it’s for Mary.”

A dead silence filled the living and all you could here was the sounds coming from the television when    my mom said,

“What the hell do we need a hospice for Mary? She’s going to get better,” insisted my mom,

“Is she mom? Really, is she?  How much more are we going to put Mary through?  She doesn’t want to go back to the hospital and our options to fight MS are running out; what choices do we have?”

“ No!  I’m not ready for hospice, Mary is not ready for hospice!” said my mom.

My dad just was silent as his eyes started to fill with tears.

“I’m not ready either but if we truly love Mary, we need to do what is best for her, no?  We tried plasmapheresis treatments, the only two other options are too high of a risk of side effects because Mary’s stage of MS is so advance.”

My dad final spoke and said,

“What does the Catholic Church say about hospices?  We need to call Father Larry or Sister Susan and talk to them about it then we can have a family meeting about  this hospice.”

“Your right Tony, first we talk with either Father Larry or Sister Susan,” answered my mom

“That’s fine, I just think that it’s time for us to think about quality of life for Mary because I have no idea what to do next,” I said and broke down crying,

“I love Mary but what I hate  to see her suffer, if hospice can ease her suffering then I am for it,”

“You don't think it's hard on me?  It’s hard for a mom to see my child suffer and not be able to do anything to help her, to ease her pain!” cried my mom.

“Then, Emilia you call the church and make an appointment then we will have a family meeting on where we go from here.”

I walked into our kitchen to get the phone and spoke to Fr Larry, he told me that he was willing to come to our home and talk to us about placing Mary in a hospice program.

The following day, Father Larry came to our home and talked to us about the Catholic Church’s view on hospice.  As we all seated at the dinning room table, you could feel the tension in the air.  Father Larry told us he knew all what we have done for Mary and he understood that medically we had done all we can for her.  However the Catholic Church will support our decision in placing Mary in a hospice program.  We all started crying, Father Larry had known my family for over 20 years and he knew what a hard decision it was for us to come to this conclusion. 

“We just don’t want to do anything against the Catholic Church teachings,” said my dad

“Your not Antonio, this decision is being made from love, the love you all feel for Mary.  I understand that and so does God,” said Father Larry,

Father Larry got off from the table, as did we and walked into Mary’s bedroom.

         “Hi Mary, do you know who I am?” smile Father Larry

         Mary’s lips mouthed, “No,” and started to cry,

         “Mary, my name is Father Larry and your family invited me

         to come and pray with you, is that okay?”

         Mary’s lips read, “O.K.”

 We all gathered around Mary for the Anointing of the Sick Sacrament.   As he prayed, it was so hard for any of us to respond, our voices cracked with emotions but half way through we focused on Mary and kept praying with Father Larry.

After the sacrament was given Father Larry was ready to go back to the parish; he said good-bye to Mary and my parents; as I walked him to his car he said,

         “Emilia, do you believe Mary is going to heaven?”

I looked at him as tears ran down my face, I answered,

         “Yes. Yes, I believe Mary is going to heaven,”

         “I believe that God has a special place for Mary and her 

name is written on it.  Please don’t delay it from happening, don’t deny Mary from her rightful place in heaven,” said Father Larry,

He said this with such conviction and I knew he was right.

“No Larry, we won’t delay in any way from keeping Mary from going to her rightful place in heaven.  We just wanted to know what the Catholic Church’s teaching were on hospice,” I said,

“Good,” he said and
He gave me a hug of support, smiled at me then got into his car and drove off.

It wasn’t easy going back into the house; I didn’t think I had the courage.
As I walked in I heard my mom ask,

         “Did Father Larry leave?”

         “Yes mom, he’s gone,”

         “Well then we need to have a talk with Mary about this

         hospice and if it’s okay with Mary, we will call her

         doctor about placing Mary in hospice,” said mom.

So my dad, mom and I walked into Mary’s bedroom and we found Mary just looking at a picture of the Sacred Heart of Jesus that hung in her room.

         “What’s cha doing Mamas, looking at the big JC?” I asked

         “Yes,” mouthed Mary

         “Mary, dad, Emilia and I want to talk to you about

         something important, okay?” ask my mom

Mary’s bedroom was silent for a second as my mom started the conversation the about hospice program.

         “Mary, you have been through a lot in the past couple years and the MS, no?”

         “Yes,” mouthed Mary

         “We were wondering if you wanted to try a new drug that

         might help you but you will need to go to the hospital.  We

         would need you to have an MRI done because the side

         effect is you might get a brain infection.  If you got a brain    

         infection, there could be a possibility of you passing

         away or get worse than you are right know.  We all love

         you very much Mary and whatever ever you want to do, we

         will support your because we love  you so much. Do you want to try this medicine?”

My mom just started to break down and cry as Mary did too.

“Mary, did you understand what mom was asking?” asked dad.

         “Yes, “

         “Do you want to try it?”

         “No,”

         “Are you sure?”

         “Yes,”

         “You do not want to try a new medication?”

         “No,”

         “Is it okay for you went to the hospital just for a little

         while just so you can  try the new medicine or get an

         MRI done?”

         “No,”

Then Mary mustard all her strength and softly whispered,

         “I don’t want it any more, I’m tired dad,”

My dad just broke down and started to cry, and then it was my turn,

“Mamas, if there was a way for you to be home all the time and not go to the hospital or take anymore new medicines, would that make you happy?” I asked

“Yes,”

“There is a program named hospice, hospice will make sure you are okay because a nurse will come and check you every week.  The hospice program will also get all your medicines liquid so we can put them in your G-tub and another nurse will come and help me give you a bath, it that okay?”

“Yes,” mouthed Mary.

“Okay, Mamas.  You don’t want to go to the hospital anymore and you don’t want to take anymore new medicines, right?” I said,

“Right,” answered Mary as tear started again to run down her cheeks and land on her pajama top.
"Aye Mamas, why are you crying?  You won't be going anywhere, you'll just be home with us and we can get someone to help take care for you.  We just want to make sure you don't want to try any new medicines because if you do we will call the neurologist but if you don't want to that's okay. Can we call hospice to help you. It's okay if we call hospice for you to help us?"

“Yes,” answered Mary.

“You’re tired Mamas and you just want to be home, right?”

“Yes,”

“No more hospitals, no more poking with a needle, no more being away from home, right?”

“Right,” answered Mary

Then I started crying because I knew Mary was saying the truth, she was tired and just want to be home.  Home in her own bedroom with her purple stars shining,  holding her Eeyore pillows and surround by the people she loved so dearly.

“Well Mija,  thank you for helping make the right decision for you. We are going to take care of you the best way we can, okay?” asked my mom

“Okay,” smiled Mary.

“Well, I’m sure your tired from all this talk and Father Larry’s visit so we’ll leave you so you can take a nap, okay”

“Okay dad,” answered Mary.

We all kissed Mary and each of us told her how much we loved her.  Mary just smiled and closed her eyes, as she was so ready for her afternoon nap.

As my mom, dad and I walked back to the dining room table and sat back down, we all had such solemn faces and just stared at the family pictures that hung on the wall in the dinning room. Remember better days when Mary was a baby, when she was in elementary school and pictures of her when she was an adult, family pictures that reflect better and happier days.

         “Well, where is that hospice pamphlet?” asked my mom

I walked to the computer desk and took the pamphlet from a stack of papers and handed it to my mom.

“How do we do this? How do we start this? How do we know we are making the right decision!?” cried my mom,

“We are making the right decision, Mary wouldn’t have it any other way, you heard her answers Mom,” I said

“I know, we all heard them Emilia but it’s still not an easy decision to make.  We never thought in our furthest dreams that we would have to be in this situation,” said my dad.

“I know dad, I’m sorry mom; it’s not easy for me either.  Mary is my younger sister and I thought even though she has MS, I always thought Mary would always be around,” I said,

“Emilia, can you please call Mary’s primary doctor and talk to him about our family decision. I just can’t bring myself to do it even though I know it’s the right decision to make; how about you Tony, do you want to call the doctor?”

“No,” answered my dad.

"I'll I call him and we will see what we need to do to get the process started for Mary,” I said.

I got the phone and spoke to Mary’s doctor about a hospice program for Mary.  At first he wanted to talk with my mom or dad and after a few minutes the phone got handed back to me.

I put the phone to my ear as I heard the doctor say,

         “Emilia?”

         “Yes doctor, it’s me.”

         “I just want you to know that I admire your family’s love and

         courage it must have took to come to this decision about

         Mary.  Your parents told me that Mary is fully aware if this

         decision.  In my experience, most patient’s family keep

         putting their family member through so much pain and

         agony just so the patient can live a little longer.  They

         just think of themselves and how they would not be

         able to live without their family member. I know it was
         not  an easy decision to make but I feel it is the right one.  

         Give me theinformation on the hospice company of your family’s

         choice and I will get the process going for you. However, I want you to know

         that I will no longer be Mary’s doctor once she enters

         hospice because they have their own doctors.  However,

         my thoughts and prayers are with Mary, your parents and  

         you.  Please keep me updated if you don’t mind, okay?”

         “Yes doctor, I will keep updated and thank you so much for   

         your understanding,” I said

         “Your welcome and God bless you all.”

Mary's G-Tube

The couple first times Mary started throwing up was in December of 2009, we thought it was just some kind of stomach flue or maybe a 24-hour virus so we all dismissed it.  However, the vomiting continued from days to weeks at least three or four times a day. It got to a point that every morning I would find Mary in a pool of vomit dripping from the left side of her bed onto the carpet.  Her hair and pillow would be soaked in vomit and her pajamas and blankets were also soaked. I would have to change the bedding and shampoo the rug and give Mary a bed bath because the vomit ran everywhere.

“Mary, if you wanted a bed bath all you had to do is ask me Mamas.” I’d joked.
"I'm sorry,"  Mary mouthed.
"Sorry?  What do you have to be sorry for?  It's okay Mamas, I'll just clean you up in no time,"

             It was the look on Mary’s frighten look on her face  that broke my heart.
However, I kept on smiling  and I started to clean her up and by the end Mary eventually would have a smile on her face then she would try to bow me a kiss.

Since Mary lost her ability to speak, she was not able to call for help when she needed it.   It was very frustrating for the both of us.  For Mary, not being able to call for help when you need it must have been so difficult for her. For myself, I could not stand the thought of my sister lying in a pool of her own vomit and I was always worried about Mary choking on her vomit and of finding my sister dead.  Mary wasn’t able to sleep flat on her back in her hospital bed because of the vomiting so from that time on she was always in an up right position.   Any time I would leave her bedroom I would ask her,

         “What do you do if you start to vomit Mary?”

                    Mary would just turn her head to the left and smile.

       “That’s right Mamas!  Turn you head to the left so you don’t choke in case you start to vomit, good job!"           

 Sometimes, during the day, as I would be watching I Love Lucy with Mary in her bedroom and she would start to cough and start choking, I would grab a small trash can with a liner and place it under Mary’s chin and lean her head towards the trash can. If I was quick enough to catch the vomit in the trash can, I would just have to replace the trash can linier, wiped her face with a warm wash cloth, kiss her cheek so she wouldn’t feel so scared.   There were times that I wasn’t able to reach for the trash can and vomit would spill everywhere.   At night I would cover the carpet with liners, her pillow was also covered with liners and a small trash was aligned under the left side of her bed.  I was trying to minimize any future clean up so Mary wouldn’t feel so shaken when she would vomit.

         What was so strange about Mary’s vomiting was the food the she threw up never seemed to get to her stomach. It never had a vomit smell, which meant there was no stomach acid mixed with her vomit.  It looked like if Mary had just eaten and the food was never broke down.  We tried at first chopping her food to small bites so she would be able to chew her food thoroughly.  Then we tried to mince her food and then we puréed it.   Then we stated to give her a dietary supplement shake but she vomited it too. At times Mary would vomit about an hour after she ate and sometime it would take up to six hours after a meal and Mary would vomit everything up.   Nothing seemed worked, Mary continued to vomit and her food. 

So we made an appointment with Mary’s primary doctor the first week the vomiting started because we were concerned about dehydration and Mary not being able to retain any kind of nutrition.  Her primary doctor, neurologist, GI specialist could not find any reason why Mary was vomiting so much.  She had an upper GI done and nothing was found.  The neurologist told us that “this is not typical MS symptom” so no solution was given.

The feelings of helplessness and frustration started to set on our family because we just wanted to know why, why was Mary vomiting and how do we stop it.

At the end, a feeding tube was given to us as an option for getting some kind of nutrition in Mary. 

“There is no guarantee that this will stop the vomiting but we have not other choice in trying to get Mary the nutrition she needs along with fighting dehydration,’ said Mary’s GI doctor.

At first we were hesitant about the whole idea of a feed tube or as it is also called Upper GI Tube or G-Tube.  It really scared all of us; jus the thought of a tube coming out of Mary’s body was unimaginable but slowly became a reality. 

We knew that meant another trip to the hospital and Mary would not be happy about it.  However, we were running out of solutions, we had to let Mary know that was going to happen to her and why the feeding tube was necessary.

I remember my mom starting to cry just on the thought of telling Mary that she was going to have a feeding tube coming out of her stomach.  So the next morning as I got Mary ready for the day I talked to her about it, 

“Hey Mamas, how you doing this morning?” I asked

“Fine,” I as read her lips

“Good to hear. You know I have to take to you about something and I know it’s going to be hard to hear but try to be brave, okay?”

“Okay,”

“You know how you hate to drink the nutrition shake because it taste to nasty, how you like to never have to drink it again but you can still eat all the yummy gelatin and pudding that you love so much?”

Mary just looked at me with a puzzled stare and I took a leap of faith and said,

“Mamas, you are going to need to have a little tub coming out of your stomach so we can give you water and nutrition.  You just have to be in the hospital in the morning and come out the same day.  You will not be there over night; dad and I will be with you and will bring you home when it’s done,” I said and tried to smile.

Mary just looked at me as her eyes filled with tears and just started to cry.  I hugged her and said,

“I’m sorry Mamas, I’m sorry but there isn’t anything else we can do.  The doctor said we could still give you small amounts of food through mouth like pudding, applesauce and gelatins.  It’s just the nasty nutrition shake will be put in your tube so you don’t have to taste it any more.” 

As I looked at Mary’s frighten face my heart just felt so numb with the unknown of what was going to happen to my Mary.

After the tears ended, I assured Mary that everything was going to be okay, that we were going to take care of her and that she is loved.  Mary looked at me with her huge brown eyes as I read her lips say,

         “I know,”

         “I know it’s scary Mamas but you are not alone, you will

never be alone.  Mom, dad and I was with you every step of the way because we love you so much,” I cried.

         “I know,”

On the day my dad and I took Mary to the hospital for the G-tube procedure my cousin came over and stood with my mom.  I am forever grateful for family.  We were there at six in the morning and were out by noon.  We brought Mary home and a nurse came that afternoon to show me how to care for Mary’s G-tube.

Even though Mary had a G-Tube she was at that time able to eat very small amounts of her soft favorite foods. 

The vomiting seemed to taper down but didn’t seem to stop completely.  We felt badly having Mary go through the g-Tube procedure and yet not solving the vomiting issue.  By this time, we were very scared for Mary because we were running out of options.   
At first a feeding pump was used so Mary would get the proper nutrition she needed but she kept vomiting everything up.  We called the doctor and the feeding pump was stopped and Mary had to be fed with a large 60 ml plastic syringe and little by little Mary would be fed by either my dad or I.
Mary would be fed every four hours and about 60 ml at every feeding.  We still gave Mary very small amounts of gelatin or pudding.  Sometime my parents bought a watermelon and I would make watermelon juice.  Mary LOVED watermelon juice, I would feed it to her from a small sponge attached to a thin straw.  I would dip the sponge into the juice and place it into her mouth, then Mary would just suck the sponge dry.  It went on for a couple of months but as Mary's health declined, she had trouble swallowing and would start to chock on the liquid or the dessert; at then end we were not able to feed her anything through her mouth because she lost the ability to swallow.   It was so hard not to give any kind of water or juice through a sponge.  However, when Mary would start to choke on something we gave her it go really scary so we had no other choice but to stop.

         

Mary's battle with MS worsens

In February 1997, Mary’s life wit MS was taking over twelve pills a day and giving herself daily injections of steroids.  At first, Mary would have to go for a steroid infusion once a year to help give her strength in her legs and arms so she could still walk with the assistance of her walker.  Several years went on and the annual steroid infusion didn’t seem to be too effective so it was increased to every six months then quarterly and it become quarterly. 

By January of 2008 Mary Magdalene’s battle with MS had turned to the worse.   She was having trouble walking and keeping her balance to the point of her falling so we would transfer her from her bed to the wheel chair so she could be with the family in the living room.  Mary was also having trouble with her bodily functions and the bathroom was too small for a wheel chair transfer so she used a commode that was located in her bedroom. 

At first, Mary would stay in the hospital for steroid infusions and then physical and occupational therapy.   She would be gone from home for about two weeks every three months.  Mary hated steroids but not as much she hated being away from home. My dad would visit Mary every single day she was in the hospital; due to my mom's battle with Parkinson's it was not easy for her to get around and she would starting to become more tired by the afternoon.  I was leery in leaving my mom home alone so I would stay with my mom while my dad went to go visit Mary. However, on the days that we all would visit Mary, she would tell us how she would have a weird taste in her mouth from the steroids.  When we would visit her, she would tell us how she would have a weird taste from the steroids.  My parents and I would encourage her to be brave and assured Mary that she would be home soon but that didn’t seem to comfort Mary.

“I want to go home! I don’t like being here Mom, when can I go home?,”

“It’s just for a little while and we will be picking you up and taking you home as soon as you get better,” answered Mom.

Tears would start running down Mary’s face as she tried to give a brave smile but her lips just trembled.  You could start to see her tears start to fall on her hospital gown.  With the help of my dad, my mom would get up from her wheelchair to give Mary a huge and kissed her on her cheek as she wiped away Mary's tears with her hand.  All I could hear was our hearts braking with every tear that fell down Mary’s cheek. We all knew that this was not going to be Mary’s last stay in the hospital.  As we got back into the car and headed back home, I would look at the hospital window of where Mary was staying, I could imagine her looking out and waiving at us.   One time Mary actually got out of her hospital bed with the help of her walker and stood at the window waving good-bye to us. 

'Oh my God!  She's gonna fall!" I said as I was ready to run back into the hospital,

"Leave her alone!  Let her have her moment," said mom as we all turned back to waive good bye to Mary.  Mary's smiled and waived back with such energy when she realized that we could see her from her hospital window.

When we got home, we had a message from the hospital letting us know that Mary had a fall but was okay.  After that fall, the hospital told us that Mary was a “fall risk” and had to wear a bracelet the read FALL RISK. 

By the end of 2008 steroids didn’t seem to help Mary so the neurologist next suggestion was a procedure called plasmapheresis treatment.  We were told that this procedure gave patients with MS renewed strength and have showed great improvement with MS patients.  We were given information and had a family meeting with Mary’s neurologist.  At the end we agreed to have this procedure done with Mary’s permission hoping that her health would improve in any way.

What we didn’t know was that the plasmapheresis treatment took two week to complete and another two week of occupational and physical therapy was to follow.   So Mary would be gone for an entire month.  Need less to say Mary was not pleased at all in being away from home for such a long period.  It was with great emotional pain see Mary go through so much, we missing her every day she was away but prayed that everything would be okay.  We hoped that Mary would have this treatment done only once. 

The first plasmaphersis treatment showed great improvement with Mary.  It had been almost a year since Mary walked and after the first treatment and with physical and occupational therapy Mary was walking with a walker, talking and keeping focused on the conversations and was more alert and energized.  It was a miracle!  We stood in shock and awe with what we had witnessed and for the first time in a long time we all had hope that Mary was going to be okay.

 We brought Mary home and had a welcome home celebration.  Our family bought some presents for Mary and placed them on her bed and we had a cake and I made my famous pasta and garlic bread, which was Mary’s favorite food.  My parents, two younger brothers and I all were home to celebrate Mary being home.

“Welcome home Mary!” we all said as my dad pushed Mary on her wheel chair into our home.

“Thanks, guys, Thanks Mom, thanks dad!” smiled Mary

“I made your favorite Kiddo, pasta and garlic bread!”

“Thanks, Emils, that’s my favorite!”

“I know Mamas, welcome home,” I said.

Every morning about eight o’clock in the morning I would get up to start my day with Mary.  However, just two day after Mary came home she was not able to stand on her own.  I held Mary at the edge of her bed and I knew if I let her go she would have fallen, she became really weak and couldn’t even sit up,

         “What going on Mamas?” I asked

         “I don’t know Emilis, I can’t sit up, I can’t stand, I can’t do anything,” as she answered, tears started to stream down her face. 

“I don’t want to go back to the hospital, I don’t want to go back!” cried Mary

“I know Mamas, I don’t want you to go back either but sometimes we have to do things we don’t like to do but have to do. “

As I held up my sister and placed her back in bed, I called for my parents to come into Mary’s room.  They came into Mary’s and after seeing Mary’s decline just after two days of being home; we were all shocked and sadden.  Mary would be gone for the month of April 2009 and July 2009 for more plasmapheresis treatments but it didn’t seem to improve Mary’s strength.  I remember my parents and I going to pick Mary up for her last stay in the hospital and the nurses where telling us what an improvement Mary has made but when we looked at Mary she still seems just as weak and tired as before her stay at the hospital.

“Mary is doing so well and I know she is happy to be going home,” said the nurse.

“Yes, we know she is ready to come home, right Mary?” asked my dad,

“Right dad, I want to go home!” answered Mary.

As much as the nurses were trying to convince us that Mary was doing better, we knew she wasn’t.   Two nurses assisted us in placing Mary in my parent’s van; they had to physically lift Mary off the wheel chair because Mary did not have the strength to do it herself. 

         “Come on Honey, move your foot!” muttered one of the nurses as she started to kick my sister’s right foot as to positions it for better leverage.  My dad was helping my mom into the van; neither of them noticed what the nurse was doing because Mary was being placed in the back seat as my mom was being seated in the front passenger seat, As I looked down to see what the nurse was doing to position my sister’s footing I said,

         “Hey! What the hell the are you doing?”

         “Oh, I’m sorry!  I was just trying to move her foot,” said the nurse.

         “Yeah, I’m sure you were by kicking it.  I thought you said she was doing better, if so why are you kicking her foot?” I asked

the nurse kept quite and the other nurse and I  seated Mary in the van.  As we drove away I told my parents what one of the nurses did to Mary and they got very upset.  My dad wanted to drive back and tell off the nurse who kicked Mary.  However, my mom calmed him down and when we got home she called in to complain on how Mary was treated. So we had a family meeting and decided to stop the treatments.  Needless to say, Mary was happy because she was no longer going to be in the hospital.

         The scares on Mary’s neck were dark and ugly for the plasmapheresis treatments.  First her left jugular vein in her neck was used, then her right jugular vein.  On the third treatment, the jugular vein in her left leg groin was used.        

As Mary’s health declined, the care taking responsibilities increased dramatically.  Some of my siblings spoke to my parents about placing Mary in a convalescent home, which scared the hell out of Mary.  I remember my parents and I going into Mary’s room and had a talk with Mary. We assured her that she was not going anywhere and was going to be home as long as we can keep her home without risking her health.  Mary started to cry and in the mists of her sobbing she cracked a smile and said,

         “Thanks mom, thanks dad, thanks Emils,”

         “Mija, we love you very much and promise we will always take care of you,” said mom.

We all gave Mary a hug and prayed together thanking God for bring Mary home and asking God to help us get through what ever was coming our way. 

At first my mom was caring for my sister and I would just be the assistant.  However, as time went on and the battle of Parkinson’s started to take over my mom’s abilities to care for Mary; soon I became the caretaker for my sister.  I think that was one of the hardest challenges for my mom, not being about to care for Mary due to Parkinson’s.

My mom and I would have some major battles because it was so hard for my mom not to be a mom to Mary. Her balance and loss of strength in her hands and arms started to become a challenge but she determined to care Mary.  There were a couple times where my mom almost lost her balance but grabbed Mary’s hospital bed rail to keep her balance as I would just stand in the background and wait until I might be able to assist.

“Mom, let me help Mary,” I asked.

“No! I can do it!” snapped my mom

“I didn’t say you couldn’t do it, I just wanted to help,”

“No. I’m Mary’s mom and I could do it!”

I can’t image what heartache and struggle it was for my mom.  She was Mary’s best friend and always took care of Mary and Mary had complete and utter trust in my mom.  As weeks turned to months, I gently started to take over caring for my sister.  However, I always had my mom by my side to assist me in caring for Mary.  At times I would catch my mom crying as she looked on while I cared for Mary,

         “I can’t do anything! I feel so useless; I’m sorry I can’t help you more,” cried my mom.

         “Mom, just your being here is help enough, you are my moral support whether you know it or not.  I need you here with me and so does Mary, right Mary?”

         Right!” said Mary with a smile.

Every morning about eight o'clock I get up to start my day with my sister Mary Magdalene.  She was usually sleeping but cracked a smile when she heard me say,

"Good morning my Sleepys, how you'd sleep my Sleepys?”

"Fine, no nightmares."

 "No nightmares, huh? That's nice Mamas,"  

The sun would be cracking through her bedroom window blinds and would give such a warm gentle light to her bedroom.

“What do you feel like wearing today Mamas, how about some fresh flannel bottoms, matching sockies and a warm cozy top?”

Mary would smile and then say,

         “Okay.”

Changing my sister for the day was a process so after the attire was picked out for they day. First I would change her adult diaper with a fresh new one.  Change her into her fresh clothes for the day. Wash her face with a warm washcloth, brush her teeth, use a little mouthwash then comb her hair. After that I would place her in a sling then hook up the sling onto the Hoyer Lift and roll her to the living room to watch television with our mom.  

Once we got to the living room, I would carefully a line the Hoyer Lift to her lift chair.  Slowly I would release the air from the hydraulic chamber and Mary would gradually be seated.  She was still able to sit up by herself at the time so I would take the sling off the handles and roll the lift to the opposite side of the living room.  Then cover her up with a blanket so she would stay snuggled and warm and place her Eeyore pillow under her arms.

Then I would have to give my sister her daily dosages of medications and cook some soft scrambled eggs for breakfast with a glass of juice.

At ten o'clock was the Price is Right, then the local news, followed by two hours of I Love Lucy, then shows on the Game Show Network.

By the afternoon, Mary would be tuckered out and I would place her back on the lift and place her in her room for a nap; this would be the weekly routine.  On the weekend, my sister usually watch what ever was on the Game Show Network, she loved game shows.  During the football season, she loved to see the Minnesota Vikings or the Washington Redskins play on television or a Dodger game during baseball season.

As weeks turned into months then years, the MS became more aggressive and my sister experienced more episodes as the plaque slowly grew in her brain which eventually attacked her nervous system. At times, Mary just has enough strength to open her eyes and surprise me with a small smile.

I often wonder what my sister dreams about when she sleeps.   Are the dreams of times of when she had healthier days?  Are the dreams of her family and happier times? I often wonder how brave and strong is my sister?   I guess I will never truly know. However, what keeps me going every day is the fact that my sister is alive now and every day that she is here with us I will celebrate each day with her.

A Very Slow Moving Dream

November 2nd is Mary Magdalene's birthday, she would have been thirty-five years old.  She was born on the feast of All Souls Day, little did any of us know that her passing would only be five days before her birthday.  My parents and family went to the liturgy of All souls Day at our Catholic Church in Monterey Park.  Her name was on one of the banners in front of the alter,this banner had all  the names  of the parishioners  who have passed away this year.  As I sat on the pew stared at her name on the banner, it didn't seem real.  People of our parish walked up to my family to give their condolences of the passing of my sister. We hugged them back and thanked them for their kind words and yet it still didn't feel real, it felt like I was in a dream, a very slow moving dream.
    "I'm sorry to hear about your sister passing," "She was so young, I 'm so sorry about her passing."
"If there is anything I can do please let me know,"  was all my mom, dad and myself heard after the  the All Souls Day liturgy from parishioners.  The numbness of grief can grip you like a vice and you feel like so lost and disorientated yet the pain of grief brings you back to reality. This pain felt like a explosion that I have never felt before.  I have experienced a passing of grandfather, grandmother, my parent's uncles and aunts but this was different.  However, this pain of grief was much stronger and real because Mary was such a huge part of our lives.  The reality of some one you love so much is no longer with you was inconceivable even though I knew Mary was gone.  We knew she had MS but we thought she would still live a long and happy life.  We were willing to care for her the best we knew hoe and have some kind of medication to help her fight her battle with MS. However, she decline in her health sooner then later and there was absolutely nothing that anyone can do to stop this from happening.  I so wish that could wake up from this slow moving dream.
However, Mary is gone to heaven and is looking down at me saying "I'm okay Emils, I'm okay!" The slow moving dream is a cold fact of reality and trying to deal with it with just as much faith, grace and love isn't easy but we now Mary would want us to do.  I love you so Mamas and my day does not pass when I am not think of you.  

Keeping Up the Fight

As the MS progressed Mary’s motor skills started to slow down and eventually stop all together. We gave Mary a ceramic bell that she would ring the bell anytime she needed anything. However, as time passed Mary lost the strength to pick up the bell and ring it.  I would have to check on her every hour just to make sure she was okay and didn't need anything.
 I remember the first time Mary wasn’t able to speak. It was about eight o'clock in the evening when I tucked her into bed at the end of the day.  I double checked to make sure Mary had a dry bottom and after fixing her Eeyour pillows underneath her arms to prevent her elbows from pressure sores, I  tucked her blankets all around her to make sure she was going to stay com-free and warm. Then, we would say one Our Father, one Hail Mary and the Guardian Angel prayer.   This night however I did not hear my sister praying with me and I thought maybe she was just tired.

So after the prayers, I kissed her good night and I as I was walking away I said,

         “Good night Mamas, see you tomorrow.”

I stop in the middle of my steps and turned to Mary and again I said,

“Good night Mamas, see you tomorrow.  What going on Mary?  Where is my “See you tomorrow?”

Mary’s eyes just filled with tears as her lips trembled but did not make a sound. Her bright pink Eeyore pajamas started to catch her falling tears.  I quickly walked up to her hospital bed; gently I took her hand I asked,

         “What’s wrong Mamas, why can’t you talk?”

Mary’s tears just kept flowing her cheeks as I started to look around the room for a tissue to wipe her tears.  I was so frighten but I didn’t want Mary to know it.  I ended up just using my t-shirt to wipe away her tears.  Again I asked,

         “Mamas, what is going on?”

         “I don’t know” Mary mouthed as the tears continued.

I wanted to hear my sister’s familiar good night reply that I would hear every night but all I heard was silence. I always took such a simple goodnight gesture for granite.  Inside my heart was just screaming, the thought of never hearing Mary’s voice was too much to bear as my sister just looked at me with such saddens and fear. Keeping my emotions together and trying so hard to keep my cool I said,

“Maybe your tired Mamas so just go sleepy time okay? And I know tomorrow will be a better day,”

Then I kissed her cheek and wiped away the tears and stood right by her side gently stroking her hair until she finally fell asleep.  I quietly tipped toed out of her bedroom and walked to the living room were my parents were watching television and said,

         “Mary can’t talk,”

         “What! What do you mean Mary can’t talk?” asked my mom as my dad looked on with concern.

         “I said, “Good night Mamas and she didn’t reply back and just started to cry,”

         “Are you sure she can’t talk?  Maybe she is just tired and it was hard for her to speak,” suggested my mom,

“I don’t know Mom, all I know is Mary wasn’t able to reply back and just started crying.  When I asked her what was going on, she mouthed, “I don’t know” no sound came out of her mouth.  She just started to cry but I didn’t hear anything, her lips trembled and tears ran down her face but she didn't utter any sound. It was too late to call the doctor right now and Mary didn’t seem in any physical pain so we call tomorrow morning, okay?”

“Okay.  Why is this happening?  I’m sure Mary is scared,” said mom

My parents got up and quietly walked to Mary’s room to find Mary sleeping soundly.  My mom kissed Mary on her forehead and my dad blessed Mary with the sign of the cross.  Quietly all three of us walked out of Mary’s bedroom and when we were far enough we all cried together.  

         Unfortunately, none of Mary’s doctors were able to give us a reason why my sister lost her voice.  Just assumptions and guess was all we heard for the doctors.
The next day I called Mary's neurologist  and made an appointment for that week.  As we all sat in the doctor's office he said,

         “Maybe the MS is becoming more progressive and is effecting the nerves that controls her speech, every case is different so I can’t give a definite answer, I’m sorry,”  

As I helped my mom out of the doctor’s office and my dad pushed Mary out on her wheelchair, we knew that Mary’s health was declining and no doctor in the world was going to be able help her.  As we all got back into the van and started to head home I hear my dad take a deep breath and said,

“Who feels like a doughnut and chocolate milk?”, as he turned to see Mary’s reaction; Mary’s face lit up with a huge smile.

         “Okay, it’s off to the doughnut shop we go!”

With my dad's assistance, Mary enjoyed  her chocolate doughnut sprinkled with peanuts and chocolate milk while we all had a cup of coffee with our own delicious doughnut.  When we finally got home, my dad pushed Mary up the wheelchair ramp of our home and rolled her to her bedroom.  then with the help of the hoyer lift, Mary was placed in bed and was ready for a nap.
         After an hour into Mary's nap I peek in to check on her,  Mary had vomited the doughnut and chocolate milk.  It was everywhere and Mary couldn't call for help.  I ran to get a plastic trash bag, wipes and started to clean Mary up.
         "I'm sorry," mouthed Mary
         "What are you sorry for?  It's okay Mamas, I'm sorry I didn't check on you earlier.  You didn't do
          anything wrong so you don't have to apologize," I said as I finished cleaning her up.
          "I'm sorry I'm such a burden," whispered Mary
          "Burden?  Who said your a burden?  Mamas, you are my sister and I love you.  What I do for you
           is out of love.  I never ever want you to think that you are a burden and if I here anyone tell you
           that they you are, I will kick their ass!"
Mary just smiled and blew me a kiss as I stroked her hair until she feel asleep.

         After that day and with weeks to come, the biggest battle for my mom, dad and I were the feelings of helplessness, worry, sadness, enraged frustrations as we could only watch Mary’s battle with MS become more and more challenging.   It's so hard to come to acceptance when the one you love so much is suffering and each day that passes is losing the battle with MS.   However, because of Mary's bravery and will to fight, we too were going to be right by her side fighting with her.