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.