This Can’t Be Happening! A Mother’s Story Part 1

This month, March is Multiple Sclerosis (MS) Awareness Month.  This is our story:

“Mom, I can’t see out of my right eye.  Oh, by the way my left leg is kind of numb.”  These were the first words my daughter spoke one April morning in 2003.

I had no idea what lay ahead . . .

THIS CAN’T BE HAPPENING!

A Mother’s Story

One bright spring morning in April of 2003 as I lay in my queen sized bed not yet ready to rise and greet the day  I hear my daughter, Brandhi, coming down the dimly lit hallway into my room.  “Mom, I can’t see out of my right eye.”  I look up at the ceiling still wiping the night sleep from my eyes and ask, “what do you mean you can’t see out of your right?”  “Mom, I can’t see anything out of my right eye it’s all black and it hurts to move my eye.  As I sat up and let my legs slowly press against the floor as I am getting out of bed Brandhi turns back through the doorway and says, “Oh, yeah, by the way, my left leg is kind of numb.”  With those few short words the nightmare began.

Brandhi continued to get ready for school as if everything was okay.  She is an extremely academically dedicated child, on the Honor Roll since 1st grade.  After all she still had one good eye, which was her attitude.  For me, I wasn’t too concerned about her leg.   We’ve all woken up with something asleep at some point.    So my beautiful blonde hair girl went to the bus stop as usual and I go about my morning and call the optometrist for an appointment.

Saturday Morning my mother took Brandhi to the optometrist appointment.  The doctor performed a complete eye exam with dilation.  Brandhi told him she only had peripheral vision and she couldn’t see anything directly in front of her.  It was totally black, as she describes it.  The doctor said her nerve look great, her eye health is great so he called one of his associates in to confirm his diagnosis, and so he did.  The doctors concluded that Brandhi could not see but they could not find any reason for the blindness so he wanted us to go for a third opinion.  My mother is taking all the comments and opinions in and is becoming increasingly worried so she called me on the telephone so that the doctor could relay his opinions to me directly.  He relayed all the same information and claimed that in fact her right eye looked better than the left.  The next words that came from his lips were appalling.  As I held the phone the words came through the receiver almost in slow motion, “Mrs. Russo, I think your daughter just needs attention.”  I couldn’t believe what I was hearing.  Attention!  Brandhi, my daughter!?!  No, way!  I took a deep breath, held in the shock and very slowly and deliberately said, “I don’t think so go ahead and make an appointment for a third opinion.”

We went along with our plans for Spring Break to go to Kentucky.  My mother has a house where she grew up and my mother and I would take my children and spend a lot of time down home as we call it.  This is a peaceful, beautiful, restful place, our old Kentucky home.  We were having a great time hanging out and relaxing and riding our four wheelers.  With all of the fun it was still hard to ignore that Brandhi was still numb on her left side and blind in her right eye.  Before the week was up we received a call regarding the appointment for the third opinion so we packed up and came home.  I was concerned but in the back of my mind I really believed that there was an issue with her contacts.  Perhaps, they had bothered her eye and were causing the pain; however, I couldn’t explain the blindness.

Here we are another optometrist appointment and she is performing the same eye exam that has been conducted twice already.  She confirmed the previous doctors’ opinions that everything looked great, so she suggested a follow-up appointment with our primary care doctor and that it was probably no big deal.  The following morning we got right in to see an associate of our primary care physician.  He was a young knowledgeable doctor and he thought perhaps Brandhi was having migraines.  After all she had a terrible pain in her eye.  That would explain it all.  Right eye blindness, left leg numbness, yep, that’s it.  Migraines.  He told us not to worry about it, it was probably nothing but he wanted to get an MRI just to look behind the eye to see what is going on.

By this point, I was fairly resigned to the fact that migraines made sense.  Brandhi was having terrible headaches so we would go get an MRI, no big deal.  I was wrong,  very wrong.  Two days later Brandhi went back to school, an honor student refusing to miss any school.  So I thought, okay, if you feel up to it go ahead.  It’s just migraines anyway, right?

On Monday morning after driving my regular morning bus route I received a call from my son’s school.  Ronnie was in the nurse’s office sick, so I needed to pick him up.  I came home and tried to call my mother so that she could watch my son while I went back to work.  At this time I was driving a school bus for my children’s school district.  My mom wasn’t home so I just let him sleep upstairs and called in to work, informing them I had a sick child at home and I couldn’t come in.  I wasn’t prepared for the next telephone call that came.

I picked up the ringing phone to hear Brandhi’s primary care physician on the other end of the line.  He started the conversation by asking me where Brandhi was currently.  I told him she had wanted to go back to school and asked him what was wrong.  He said, “Well, the MRI is showing some areas on the brain.” Areas? What do you mean areas?  He proceeded to tell me that if Brandhi were older, he would tell me that she has MS.  “But that’s just not possible,” he said.  He thought she was having strokes, so he had contacted the local hospital for children and spoke with a neurologist.  He instructed me to go pick Brandhi up and take her to the emergency room immediately.  By this time my heart was pounding, my body started to shake, my mind started to race.  Okay.  Okay.  I will get her.  I hung up the phone and thought, what now!  WHAT NOW!  Think.  Think.  Think.  I ran up and down the stairs a couple of times, trying to figure out what I was to do next.  I tried calling my mom, no answer.  She still wasn’t home.  I decided to call my aunt that lived with my mom and I thought she could come and stay with Ronnie.  So once again, I called into the transportation department and asked for the telephone number of one of the schools I had to contact my aunt who worked there because I had to take my daughter to the hospital.  The secretary on the line asked me if I was okay to which I responded, “No, I’m definitely not okay.”  She said she would call my aunt for me and I hung up the phone just to pick it up again to call my cousin to have her call her mom.  By this time I was in such a head spin that I just wanted to get a hold of my aunt so I could go pick up my daughter.  I asked my cousin to call her mom but she wanted to know more.  I told her the MRI report indicated Multiple Sclerosis but the doctor said that kids don’t get MS.  She said to me, “Oh, yes they can”.  She had done a lot of research on Multiple Sclerosis because a few months earlier a family member of hers had been tested for MS.  She said, “Okay, listen.  I’m taking you.  You can’t drive.  I’ll be right there.”

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2 comments on “This Can’t Be Happening! A Mother’s Story Part 1

  1. Wow, I cannot imagine this journey you guys are on. Praying for you, and looking forward to hearing the rest of the journey. Thanks for sharing!

  2. Scary enough when it’s yourself, I can’t imagine it being one of my kids. Every time one of them has a funky symptom I worry they may have inherited MS from me…

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