FINDING GOD’S STRENGTH IN OUR WEAKNESS

FINDING GOD’S STRENGTH IN OUR WEAKNESS

 A Mother’s Perspective

            I was brought up in church and raised around the Word of God.  OnDecember 26, 1997 I accepted Jesus Christ into my life as my Lord and Savior.   In January 2006, I completely surrendered my life to serving Him.

            I discovered that I was angry with God for allowing Multiple Sclerosis into our lives.  I was angry for the rollercoaster ride my family has been on since Brandhi’s diagnosis.  I was angry for the pain my daughter has suffered.  I often looked up to Heaven and asked God why.  Why was He allowing this to happen to my family?  Why does someone so young have to suffer with so much pain and uncertainty?

My daughter being diagnosed with MS has been the hardest thing I have ever had to face.  MS is an unpredictable, devastating, debilitating and at times a relentless disease.  Brandhi not only has to live with its uncertainty; she has to live with its pain and frustration over the modifications that MS has forced her to make in her life.  Brandhi lives with overwhelming fatigue, the kind of fatigue that makes it difficult for her to even get out of bed in the mornings.  When she does get out of bed, by6:00PM she wants to get back into it.  Pain: Brandhi has leg pain and from time to time her pain has been so severe I have watched her lay in the floor and beg for her dad to just make it stop.   Brandhi has frustration with not being able to go on long shopping trips with her friends because her she can’t endure all day shopping at the mall any longer because she gets fatigued.

I know that God has Brandhi’s best interest at heart.  He knows and wants what is best for her life.  I would never have wanted my daughter to be living with an incurable disease and I would take her place in an instant, but that simply is not God’s will.  Through the last few years of living with MS I have learned that we are called to trust in the Lord with ALL our heart and lean not on our own understanding.  (Proverbs 3:5-6.)

Since Brandhi’s diagnosis she has had some very challenging times.  When we finally stopped asking God all the many “why” questions and started focusing on the “what” questions life turned around.  LORD, what do you want us to do with this?  That is the question we finally knelt in prayer over.

One morning in the midst of Brandhi’s symptoms and the many challenges they present us, I found myself at a breaking point.  I lifted my voice up to God, raised my hands in the air and begged God, “Please, please Father God, do not let her suffer any longer!  Take this terrible disease and heal her.  Please God take this from her!”  I felt this urgency to run to my Bible and start reading.  That morning God spoke to me in Matthew 5:36.  He said to me, … “Do not be afraid; only believe.”  Praise God!!  If we put all our faith and trust in God there is no reason to fear, we just have to believe.  Believe that God will NEVER leave us or forsake us.  (Hebrews 13:5)

God daily renews our strength.  I literally wake up and face each day as its own.  I have learned that although it’s tough sometimes not to focus on the future and what may happen to my daughter that I must put all of my faith in God and trust Him for this day, this wondrous, glorious day that He has blessed us with.

I have watched my daughter grow physically, emotionally and spiritually.  God is using her in an awesome way.  He has given her the gift of being an inspiration to many people and not just the ones who are affected by MS.  She unselfishly gives of herself to others, all for His honor and glory.  She is a unique individual with so much love for life and others.  At such a young age she has endured a lot of suffering but she has also received plenty of joy.  God has made her strong in her weakness.  (2 Corinthians 12:9)  We desire to walk with God as He leads us to comfort those with the comfort He has given to us. (2 Corinthians 1:3,4)

Praise God, with Him all things are possible no matter what your physical condition.  (Philippians 4:13)

Praise Him!

 

Starting The Fight – Part 7

STARTING THE FIGHT

 A Mother’s Perspective

 Physical, Emotional and Relational Challenges

            Looking back over these last years I realize that we have not only faced physical challenges with MS we have faced emotional and relational challenges.

            Multiple Sclerosis is an unpredictable disease; it has a way of messing with your mind.  You feel like you are on a roller coaster, it whips you around, brings you up a hill slowly, flings you down at a rapid pace leaving your stomach in knots feeling like you are going to get sick.  At least for me as a parent that’s how I feel.  Just when one symptom would get resolved a new one would pop up.  So the remission of one symptom brings a relapse to a new one for Brandhi.

            Emotionally, when one symptom would develop I would feel my mind racing: what if it gets worse, what if it stays the same, what if she never regains function of that area, what if . . . what if . . . ?

            Relationally, we have learned who we can depend on.  As I’ve said before you really find out who your true friends and support systems are.  Now, I don’t feel that people just don’t care about us; perhaps they just don’t know what to do.  It is still frustrating and hurtful, nonetheless.  In the beginning we would call our friends and family and let them know that Brandhi was back in the hospital or on another IV steriod treatment but after awhile we learned that we would make all these phone calls and no one would follow-up with how Brandhi was feeling or stop by and visit so eventually we stopped informing people.  We didn’t need the disappointment and Brandhi certainly didn’t deserve the hurt.

One occasion really stands out in my mind.  One of the many times when Brandhi was admitted to the hospital one of our close relatives told us to expect to see them at the hospital during the weekend.  Up to this point, she had been in the hospital for a few days and there had not been a single visitor stop by so Brandhi was really excited that this family member was coming.  Visitors can really lift up your spirits when you’ve been cut off from the outside world and your only visitor is the nurse checking your vitals.  Well, the weekend came and went and Felix decided to give that relative a call to find out if they were still coming.  The answer was no.  They were running around doing this and doing that, and they just didn’t have enough time.  Brandhi was so deeply crushed.  I got angry.  My daughter had been through so much, how someone dare treat her that way, let alone a family member.

Now, I’m not saying that my daughter isn’t loved, she is.  She is loved by many.  But when you need support, an outward showing of support and no one is in sight it’s hurtful.  We love our family and we feel they care but sometimes people can’t really understand how simple things like phone calls, cards and visits mean to someone with a chronic illness.  I’ve learned to get over my anger towards people who have let us down because I realize that people are only human and God will send into our lives the people that He wants there for us.

This leads me to Brandhi’s Aunt Helen.  Aunt Helen is not really Brandhi’s aunt by relation but she is definitely closer to her than any family member outside of me, her father and brother and my mom and dad.  I call Brandhi’s Aunt Helen her mentor, for, you see, Helen has MS as well. When she met Brandhi she took her under her wing and showed her the way.  She didn’t stop there.  Aunt Helen has traveled with us as Brandhi goes around speaking; she helped Brandhi by tirelessly listening to her practice her speech.  When Brandhi speaks Helen stands and claps the loudest with the proudest look about her.  She opens her home and has helped Brandhi study for tests she is having in school.  She sits and listens to Brandhi go on and on about boys, fashion, her hopes and dreams.  She came over when Brandhi started a new MS medication and they took their injections together for a couple of weeks until Brandhi was ready to do it on her own.  Believe me when I say two people never had so much fun taking injections than these two did those couple of weeks.  When Brandhi has a really hard go of it, there is Aunt Helen bringing flowers and lunch to make her feel better.  I could go on and on with all of these kinds of stories and how unselfishly Helen gives of herself, her time and her love for Brandhi.  Before I leave this subject, let me tell you she is not only Brandhi’s Aunt Helen she has become my son’s Aunt Helen as well.  My heart has so much love and adoration for this woman that I know that God sent her to my family, to me.

Education

            Now surrounded by an awesome support system I continue to educate myself about MS.  I feel confident when I speak with doctors; because I have done all that I can to arm myself with knowledge.  Therefore, as we make decisions about treatment, medication, and medical tests I know that I am informed and equipped.

            I have chosen to educate myself in various ways: through the internet, medical books, foundations, medical community – doctors and nurses, people with MS, talking with family members affected by MS, experiences and observations from all of these various avenues.

After gearing up for the fight with obtaining knowledge I set out to educate others.  I made it one of my missions to not allow people’s lack of knowledge and sometimes their lack of compassion and understanding affect us as deeply as I have in the past.  There have been times during the course of our journey with MS that we have had to deal with educating the educators and to this point, we have been extremely fortunate to be in our present school system.  For the most part, teachers and administrators have really gone out of their way to understand and accommodate Brandhi’s specific needs.  There have been a few bumps in the road and a few people we have encountered who have absolutely no business in the area of dealing with kids.

You Look Good – You Must Feel Good

            I’m sure you have heard the statement you can’t judge a book by its cover.  If you are reading this and are living with a chronic illness you have certainly heard the statement, you look so good.

            One of our biggest challenges in living with MS has been people’s lack of understanding that you don’t have to look bad to feel bad.  Can you relate?  One of Brandhi’s comments to people when they tell her that she looks good is usually, “yeah, I know I do but I don’t feel real good.”  We’ve encountered situations on various occasions in which people can’t grasp the concept that just because you don’t look bad doesn’t mean that you feel good.  This is one of the most frustrating situations that we deal with.

Brandhi was scheduled to do an interview once and she had just gotten out of the hospital so we weren’t really sure if she’d be able to make it.  But she felt up to it and wanted to keep her commitment and do the interview.  When we walked into the room and met the person who was conducting the interview they had a strange look on their face, I think they thought their big smile was masking this shocked look but we had seen it before so we weren’t fooled.  The interviewer said, “Wow, you look so good.  I wasn’t expecting you to look so good.” Brandhi responded by saying, “Would it make you feel better if I would have brought my IV stand along with me?”  They laughed; it was all said in a lighthearted manner.  This is just part of educating others about this disease.

Encouragement From The Fast Lane – Part 6

A Mother’s Prospective

In June of 2004 we attended an event, Racing Toward Your Dreams.   This event featured Kelly “Girl” Sutton, a Nascar Truck Driver who lives with MS.

Kelly was diagnosed with MS at sixteen and so the local drug representatives thought Kelly would be able to talk with Brandhi and help her in dealing with her diagnosis.  Before the program they  told Kelly about Brandhi and asked her if she would talk with her a little before the  program.  Kelly agreed.

While waiting for this program to begin we were talking with several different people who had attended the race the evening before when in walked Kelly.  Immediately, she walked over to Brandhi and put her arms around her and gave her the biggest hug.  She started assuring Brandhi that everything would be all right and encouraging her to keep pursuing her dreams.  We walked into a private area and had a very emotional meeting with Kelly.  This was the first time I saw Brandhi connect with someone and cry.

We sat through the program and listened to Kelly’s inspiring story.  All the while Brandhi could relate and connect with Kelly.  It was, to say the least, an emotional day.  Before leaving Kelly exchanged phone numbers and email addresses with Brandhi and told her to keep in touch with her, to call her anytime she needed to talk.  She also left Brandhi with a very special gift. She gave Brandhi a collectable coin that was due to come out in 2005.  At this time, there were only two that had been made.  One was made for Kelly and one was given to Kelly’s Crew Chief.  Kelly gave Brandhi her coin and told Brandhi to keep it with her at all times.  To this day, this is a very special and treasured gift!

In the months ahead Brandhi continued to keep in touch with Kelly.  In August of that same year we went to Indianapolis Raceway Park to s
We decided to stay and watch the race even though Kelly wasn’t in it.  While we were sitting there Brandhi said to me, “ I can do this”.  I said, “Do what, race!?!”  She says, “No, mom.  I can do MS”! ee Kelly race.  We spent the day with Kelly and her family at their hauler and in the pits.  This day changed Brandhi’s life forever.  She was so excited to be there, standing on top of Kelly’s hauler watching her practice and qualify.  Brandhi’s hands were trembling while we waited to see if Kelly would qualify for the race.  This was a tough day for Kelly and her crew.  Kelly did not make the race but in the eyes of this very young girl she was a winner!

From that day on Brandhi has accomplished so many things for others affected by MS.  Kelly was the source of inspiration for that.  Because Kelly took the time to connect and make a difference in Brandhi’s life, her view of MS and the way she lives her life changed.

Kelly means so much to our family.  We are so grateful for the time and support, and the very special coin she gave Brandhi.  But the most important gift she gave her was HOPE and a new outlook of her future.  Kelly and Brandhi have continued to remain friends and they still have a very close connection.  I pray for Kelly everyday and I thank God that He sent her our way.

Searching – A Mother’s Perspective Part 5

SEARCHING

 A Mother’s Perspective (2003)

            In the months ahead I began to research and learn all that I possibly could about MS.  I dug deep, looking for answers to what we’re facing with a daughter having MS at 13.  I learned that there is very little information available and definitely no support in our area.  Every situation we were to experience, we were learning on our own.

             However, with all of the articles I read and websites I visited, nothing could prepare me  I watched MS torment my child, torment my family and rip my heart right out of my chest.  My dreams for my daughter are really no different than any other mother’s dreams for her child.  I want her to have a successful career, marry a good man, have a family and be overwhelmingly happy.  What I used to envision has now become a huge question mark and my dreams are filled with fear.  Now, I wonder, will my daughter lose her eyesight; lose the use of her legs?  Will she be able to endure college and the stresses of a career?  Will she find a husband who will love her come what may?  Sure, many of us marry thinking that person is my life and they love me, but now this person could be her very lifeline.  And what will happen to her if something happens to me?  On and on the thoughts race through my mind.  With every new day I wake up and wonder what MS will rob my daughter of today.  I live with this bottomless sickness in the pit of my stomach.

So I started reaching out, asking questions, searching for help.  “HELLO!  Can anyone help me out!!”  Well, my family and I were pointed into one disastrous direction after another.   We attended support groups that were worse than a family funeral.  We were sent to professionals that didn’t comprehend what living with MS at 13 meant.  We searched for doctors who weren’t afraid to treat a child with MS.  There are few.  HELLO – PLEASE! SOMEONE HELP US!!!!

My husband says I am an overachieving, type A person.  Maybe he’s right, but I know one thing for sure.  I had to do something.  My daughter’s future depended on it.  So I arranged a meeting with some people who I thought would be able to help us.  We pitched our idea to them just to have it thrown back in our face with statements like, “The numbers really aren’t there for pediatrics,” or “You are really going to be paving new territory.”  I left meetings upset but more than that, I was angry.  I was angry for what was happening to my little girl and angry that, because it is so rare for children to have this disease, many didn’t find it worthwhile to give us their attention.  But I was not about to let that stop me.  I wasn’t exactly sure what could be done to help kids with MS and their families but I knew something had to be done.

I saw my daughter going into a state of denial, and I was headed into such a state of rage that I had to burn it up.  I volunteered at our local chapter of the National MS Society’s walk.  I thought that at least I would be helping in some way.  I started talking with people and seeing different drug companies there with booths.  I stopped by one booth and met this wonderful lady named Helen.  She gave me a card and invited us to attend an MS Lunch group.  At that time, I thought, Oh, yeah, that’s what we need, another funeral.  So I put a big smile on my face and happily agreed to meet the founder of this group.  She was so nice but she wanted my phone number and contact info and I feared that if I gave this information, there would be no getting away from her.  But I did it anyway.  She started asking questions and I told her about Brandhi.  She thought that I should talk to the director of the mscenter.  She thought he might be able to help us.  We walked over to his booth, introductions were made, and, to my surprise, he was very interested.  He looked at me and said that he wanted to help us make this happen.  We exchanged contact information and within a couple weeks we sat down to discuss this further.

He introduced me to a lot of people, drug representatives and various people affected by MS.   However, the most important thing he did for us was believe in us.  He has so much compassion, a big guy with a huge heart.  For the next year or so he was there for us giving us advice, connecting us with people and lending his support.

A RELENTLESS JOURNEY OF UNCERTAINTY A Mother’s Perspective Part 4

2003 and 2004 presented us with one symptom after another, one medical test after another, one steroid treatment after another, one new medicine after another.  As a mother I felt like I was losing my mind.  I put on this face, a strong encouraging face for my daughter.  On the outside I appeared to have it all together.  On the inside, however, I felt like a huge bundle of static, tense, anxious nerves ready to snap.  I WANT THIS STINKING DISEASE TO STOP TORMENTING MY CHILD!!

Sometimes when I am all alone I scream. I cry out.  I am literally overcome with so much pain and heartache I could just burst.  I have never felt so much ache in all of my life.  I was constantly waiting for the next symptom to occur each time wondering what part of my daughter MS would take this time. 

By this time I had lost one of my closest friends, or at least I thought she was my closest friend.  Family members quit calling and coming to the hospital.  I assume it just became routine for them.  If you are living with MS or a chronic illness you know what I am talking about.  If you hear anything from our story at all, please hear this next statement.  To that person laying in the hospital bed or that mother, father, or spouse sitting at their side the twenty third time is just as upsetting as the first or third or fifth time.  In other words, your visits, cards and prayers are so important no matter how many times they have been sick or in the hospital.  So please, please do not forget that we still need your presence, support, calls and prayers.

This Can’t Be Happening! – A Mother’s Story Part 2

In the meantime, I was going up and down the stairs in my house crying.  I really just didn’t know what to do with myself so I called the one person that I knew who would know what to do and how to explain to me what was going on, my uncle Jonas.  Jonas is a fireman and in my mind a hero and I was sure he would know what to do and what the doctor’s words meant.  I told him what the doctor had said.  He asked me if I had called Felix.  Felix, oh, no.  Felix.  My husband and the father of my children.  I got so frantic all I could do was think of was to get someone to be with Ronnie and to get Brandhi to the hospital.  He said, In a very calm authoritative voice, “calm down.”  He told me not to tell my mother without my father present, which was something I needed to hear.  My mother had almost died a few years previous and we were concerned how she would handle this information.  Not to mention, Brandhi was my mom and dad’s little girl.  Their little girl!  They are so close to my children.  We only live three miles apart and my children see my parents every day.  So Jonas told me that he would call Felix and my mom; that I should wait for my cousin and aunt and just take it easy.  He told me I would be okay and that I should stay strong and calm for Brandhi.  I started to calm down by this point only to see my cousin running up my front yard. As I opened the door I starting crying uncontrollably again.  No, not my daughter.  No, not my little girl.  Please.  Please. No!

My aunt arrived to take of Ronnie and my cousin drove me to pick up Brandhi who was still in school.  I was trying to be strong.  Strong for her.  I knew I looked frayed to say the least.  I told the lady working the reception area at her school that I had to take her to the hospital, that it was an urgent matter and that she was unaware of why I was coming to get her.  About that time I turned, I saw Brandhi, my little girl holding the rail of the steps walking slowly down the steps toward me.  At that point, all I could see was my baby, my little blonde haired girl struggling to place each foot on the next step and move forward.  She asked me why I was there  and what was wrong, I told her something had showed up on the MRI that it was probably nothing really big, but the doctors wanted us to go to the emergency room to be checked out.  On the way there, she was asking, “Mom, what’s going on?  Mom, am I all right?”  My cousin started telling her that sometimes doctors just need to look into things more.

As we approached the entrance of the hospital I saw my parents.  They had arrived before we did and they looked physically ill.  Remember, Brandhi was so close to them.  My dad is a big, quite, calm man and also the emotionally strongest man I know.  The only times I had ever seen my dad upset or shaken was when my mom was in the hospital hooked up to a ventilator.  My mom was so frightened.  We pulled our strength from my dad yet when my dad arrived to meet my mom at home she said he let out the most terrifying cry that she had ever heard.  She told me, “Kim, your dad is not doing this well.  Brandhi is his baby.”  I don’t think any of us knew what to do.

We were met at the emergency room by a neurologist.  What I began to see and hear really threw me.  He started doing a neurological exam on her.  He told her to stand up, put her arms straight out to the side and close her eyes.  When she did, she fell to the floor.  What was this?  Oh, my goodness.  I had noticed her stumbling and falling around but after all she was at the clumsy age of thirteen.  My daughter told him that her eye was almost better.  She could pretty much see but now she felt weak in her right leg and was having trouble going up and down the stairs at school.  I asked her why she didn’t call me, why she didn’t come home and she said, “Well, I was making it.  I thought I would do all right.”  Right then, the doctor looked at me and said, “I think she may have multiple sclerosis.”  What!  Multiple Sclerosis, you mean, MS.  Uh, no way.  It couldn’t be.  Annettee Funicello is who I saw in my mind.  I saw a wheel chair and my daughter’s future gone.

There was nurse in the emergency room that day, I don’t recall her name; I don’t even remember that she was there during the exam.  Suddenly there she was, sent by God I believe.  She was telling me, “It’s okay.  She’ll be okay.  There are treatments now.”  She added, “Mrs. Russo.   I have MS. Look at me.  I am okay.  I take a shot everyday.  It’s manageable.  It will be alright.”  I looked at her as if to say thank you but I couldn’t say anything at all. Now, I was numb.

Brandhi was admitted to the hospital and during that week she endured many tests.  It was apparent something was seriously wrong by this time.  Brandhi could barely stand up let alone walk.  Teams of doctors came in and out of her hospital room, poking, testing and not really saying much.  As the week progressed I became more and more emotional, more and more agitated.  They told me that they needed to do another MRI, this time with a contrast, so that they could really see what was going on.  They needed to perform another eye exam and a spinal tap.  My  husband, Felix, and my dad both went in with Brandhi during her spinal tap.  My mother and I opted to stay in the hall.  I did not want to see Brandhi go through that.  The one thing in my life that my dad could not do was to see my mom or one of his own in pain.  Brandhi insisted that he go in with her; I was worried, but from what Felix said, God gave my dad the strength and courage he needed to see Brandhi go through this.  The doctors told me it would only take about 20 minutes so my mother and I walked around the seventh floor of the hospital, looking out of the windows at the view.  We talked and tried to occupy our time.  When we realized it had been about a half an hour we walked on back to the room only to pas the door where Brandhi was and heard her crying and screaming.  Still.  So I asked what was going on and the nurse at the desk told me they were almost finished.  They had almost gotten it.  Well, another hour passed and Brandi was still crying and screaming.  I could hear her from her room down the hall.  A mother can only stand so much.  I was pacing.  I was walking in and out of her room.  I’d had enough.  I walked to the middle of the hallway and yelled down to the nurse’s station.  I yelled.  “Okay.  That is enough!  They have tried long enough! Stop them and stop them right now!”  I had some nurses and different personnel rush me into Brandi’s hospital room, telling me to calm down.  I insisted that they get a doctor to my daughter’s room right now and tell me what was going on.  Was it MS . . ?  Why can’t my daughter walk?  I wanted answers and I wanted them immediately.  By this time, a nurse peeked her head in the room where they were attempting the spinal tap and looked at my husband.  He immediately looked up and said to the nurse, “Mom.” She shook her head yes, and responded, “Mom.”  They were finished, the doctors were done.  They knew it was time to stop.  They could not get the spinal tap so they would have to try again tomorrow.  The manager of the floor came to the room to talk with me and my husband.  She told me that she agreed that it was time for them to stop and the doctors were coming in to talk with us.

Just as my patience was running thin and my adrenaline pumping, in walked a minister.  For the record, we are believers.  My husband is a youth pastor at the church where we attended.  So please do not misunderstand what was about to take place next.  As the minister walked in, I became even more agitated.  I knew the doctors were coming to talk with us and I thought oh, no.  It’s bad.  It’s really bad.  They wanted a minister here for when they told us.  I couldn’t believe it.  My mind was racing and I was thinking, she’s dying, this is not good.  So, I yelled even more.  I yelled at this poor minister who was unaware of the events that were unfolding.  All he knew was the he had been asked by a nurse to come to the floor to try and calm down a child’s mother.  Well, he walked in, introduced himself and I looked at him as if I were possessed.  I had my head slightly bent down as I looked up at him, my eyes were flaming, my nostrils flaring and in a deep, calm voice I said, “What are you doing here? Get out of here!”  He put his hands up as if to say, okay,stop-with one of those keep-your-distance poses.  My husband jumped in the middle of us and pulled the minister aside.  The nurses were just standing there, not making a sound, stunned.  I think they were expecting my head to spin and green pea soup to spew out of my mouth.

The nursing manager came in at that time and informed us that the doctor was down the hall in a room and would like to speak with Brandhi’s parents.  I walked out of the room into the hall where my husband was assuring the minister that everything was okay.  I was just scared not possessed.   I looked at my husband and said “Come on, lets go.” We took a long walk down a short hallway to the very same room where my daughter’s spinal tap was attempted.  I could see the supplies still being cleaned up.  We walked in, sat down and were told the doctor would be right in.  I wasn’t saying much at this point.  I actually think I was calming down.  I wanted to hear this doctor and truly understand what was going on.  For now, the drama was over.  In walked Brandhi’s neurologist, the one that had been caring for her since we arrived on the seventh floor at the beginning of the week.  She began to tell us that they were trying to rule out all other diseases and infections before they would be truly able to tell us if this was MS.  She said they had blood work and that so far, from the tests that had come back, they didn’t think she had  Lyme disease, or anything else on this list of illnesses and diseases.  They wanted to start IV steroids, and they had to rule out infections and such.  The doctor was so kind, so calm.  She looked straight at me and said, “I am not worried.  I think Brandhi has MS but I am confident that she is going to recover from this exacerbation.” She looked into my eyes and quietly said, “I will always be honest with you.  I will tell you when I am concerned.”  From that point on she gained my trust.

By the end of the week we were told that Brandhi did indeed have Multiple Sclerosis.  They started her on a three day round of IV steroids to try to speed up her recovery.  A social worker in the hospital came to visit us with an article she had pulled from the internet about MS and a couple of websites for us to check out.  No one really could tell us a whole lot about MS.  We were told it was an adult disease that it was unusual for someone of Brandhi’s age to get this disease.  They told us they couldn’t predict the course of the disease and that to date there was no cure.

As I read the article I began to cry, feeling incredibly helpless.  I was so scared and worried about my daughter’s future, the honor roll student, that want-to-be lawyer.  What now?  Would she pursue her career? Would she walk again?  Would she die?  I was getting so depressed, all the while still truly unaware of what MS really was.  It was all a huge question mark.

For the most part Brandhi’s father was really strong.  He’s the type of person who always looks at things exactly as they are.  He doesn’t worry about what is to come and sees things in a positive light.  I had been a real basket case.  Felix, on the other hand, remained strong, never once shedding a tear until late one night, before we left the hospital.  My husband thought that my daughter and I were asleep.  But I saw him kneeling beside our daughter’s hospital bed, pleading with God.  He was crying and begging God to please heal her, to let him take on the disease.  It was at that moment that I realized that I had to snap out of it.  I had to research and learn everything I could about MS.  I knew that this was really happening and it was happening to MY daughter.  We go through life never really thinking that these kinds of things can happen to us.  Other people get MS, but not us.

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.”