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.