Gone Too Soon - My Mom's Battle With Scleroderma

When I created this blog, I knew at some point this day would come.  Retelling the story of my two heroes, the loves of my life... my mom and dad.  My mom, Sheila, was born April 24, 1958.  My dad was born January 10, 1953.  She and my dad were married in January 1977.  Along I came 2 years later.  My mother was extraordinary.  I live my life trying to fill her shoes in so many ways, hoping that someday she'll be able to tell me, "Well done".  This is the story of my mom.  My dad deserves his own entry, coming shortly. 

Sadly, the sorrow of someone's life is what becomes their story.  But, it was my mom's sorrow and her strenght through it all that made her story so exemplary.  Most of my younger years were spent on my mother's pant leg.  I was definitely her shadow.  She spent many of my childhood years as either a stay-at-home mom, or working part-time as a crossing guard.  If you knew my mother, you knew she was a strong-minded, yet very selfless woman.  She was a devoted Jehovah's Witness with exemplary and unmovable faith.  And she was a dedicated wife and mother.  She was my mom, friend, coach, confidant, motivator, tutor... everything.  We shared stories, jokes and tears.  I remember comforting my mom during sad times, days when sorrow kept her from being able to do anything besides... cry. 

Our relationship was wonderful for most of my younger life.  She taught me how to be a strong, self-sufficient - not independent - woman.  My mom cleaned houses during the hours she was not working and I accompanied her most of those days.  Learning that hard work is necessary.  Not only did my mom work hard, we played hard too.   Although my parents had very limited income, I remember taking some type of vacation every year.  Be it a trip to Kings Dominion for the weekend or an extended stay in whatever city our District Convention was held.  We did things that became tradition - during the autumn, taking walks to collect leaves to create a "Leaf Walk" collage.  Things that I try to continue with my own baby girl. 

After I was born, my parents were told they could not have anymore children.  Nine years later, my brother made his debut.  Between taking care of my new brother and I, now having to work outside of the home and supporting my father in his attempts to stop drinking, my relationship with my mom became strained.  Not to mention my experience as a teenager was one of the worse experiences of my life.  I wish I was mature enough to apologize to my parents for some of the things I'd put them through as a young person when I had the opportunity.  

After two years of medical testing and observation, in 1991, my mother was diagnosed with Scleroderma.  Her face and hands had begun to swell and tighten and she experienced limited mobility due to Degenerative Disease in her hips.  I had no idea what this all meant, nor what it would entail.  It didn't even seem real to me.  I'm not sure if it was selfishness, lack of interest or immaturity.  I'm hoping it was just a matter of being a child.  That day changed all of our lives in every way imaginable.  My mom was always at a doctor's office because this illness was so new and rare, her treatment was experimental.  Each week, her doctor would videolog her progress, good or bad.  Her medications were experimental as well.  Some days were normal and some days she'd not want to get out of bed.  But, for the most part, she did all she could to be the same old Sheila we all knew and loved. 

I remember the day she decided to tell the family of her illness.  It was a hurtful time for all that received that news.  The prognosis for her type of Scleroderma was a maximum of 10 years.  She, along with two of my other aunts, became the rock that held the family together, spending as much time as possible with one another. 

Her illness was unforgiving and very progressive.  Initially she could not walk for a long period time due to hip joint pain.  Then she began to suffer from intolerance of the cold weather.  She developed ulcers on her fingers that would erupt in the cold weather.  She'd spend nights sleeping upright due to acid reflux disease.  As her skin tightened, she lost pigmentation and the ability to bend her fingers.  Soon, she was not able to write.  This affected her financially and emotionally as well because her income was from being a crossing guard and delivering phone books.  Both of which required her to be active and outdoors. 

This disease began to take over internally.  She suffered from pulmonary hypertension, right-sided heart failure, incontinence and depression.  While struggling to stay alive, she never let it take over her spirit.  She knew there was no way to beat this disease, but she strived to take advantage of each day she was blessed to be alive.  Each time she hit an obstacle, she worked to overcome it or adapt.  By 1999, my mom was wheelchair-bound and on oxygen.  She was placed on the wait list for a new heart-lung.  Time was of the essence because her heart was failing.

On September 8, 2000, I received a call at my job after a doctor's appointment she'd gone to.  She told me that her doctor had advised her to "get her affairs in order" and that she could expect to live through the fall, and at the most to Christmas.  I panicked and fainted.  This is when this disease really became "real" to me.  In a real adult kind of way.  I had to do something.  My mother had been battling back in forth with the Department of Social Services, trying to obtain medical insurance to pay for some of the care and prescriptions she required.  Fortunately, she had an amazing team at Johns Hopkins that allowed her to continue care, paying what she could afford and providing medical samples in lieu of prescriptions.  However, with this new prognosis, something had to happen quickly.

Her doctor informed us that there was an experimental medicine available through intravenous pump that would travel directly into her lungs, easing some of the pressure on her pulmonary arteries and thus relieve her heart.  At $10,000/month, this medication, without medical insurance, was impossible to afford.  After battling social workers for 6 months, I decided to take our concerns to Elijah Cummings.  He was a godsend.  In one week, she was approved for Pharmacy Assistance.  He even followed up to be sure everything was progressing as it should.  With not a moment to waste, my mom was taken to University of Pennsylvania Medical Center to receive her treatment.  After 3 days of responding well, she was discharged. 

This medicine gave my mother her life back.  She was able to pack up her wheelchair and do some of the things she loved.  I cherised every single second of my life I was able to spend by her side.  My marriage began to suffer, but it didn't matter much to me.  Not only did my love for her grow, but so did my admiration for her.  She was so strong, during the good times and bad.  I discovered Loch Raven Reservoir.  Being from West Baltimore, I'd never seen anywhere as naturally beautiful as Loch Raven in Baltimore City.  I had to get my parents there.  One day after work, I picked them up and spent the afternoon with them by the water.  I remember my dad challenging me to a foot race and he still beat me.  We walked, talked and just enjoyed being together. 

My dad's battle with his illness was loss on December 15, 2001.  He had been in and out of the hospital for the prior year and a half battling the affects of his decision to no longer drink.  He was suffering from kidney failure and cirrhosis of the liver.  A week before he passed, my mom told him of a dream she'd had.  In the dream, my late grandmother reached and called out for my father, and my mother struggled and told her, "No, you can't have him!"  Upon hearing this, my father simply replied, "I know I'm next."  Within that week, my dad slipped into a coma and passed away from total kidney failure. 

After my dad passed, what I saw my mom go through, I wouldn't understand until my second marriage.  I couldn't help thinking about how tough thing were between my parents, so many hard times.  The arguing, fighting, stress.  But, none of that compared to the hurt and sadness I saw in my mom after my dad passed away.  I could tell a part of her passed as well.  You hear that all the time, but I could see it.  I kept her close.  I lived across town from her, so I kept her by my side as much as possible.  The last weekend she stayed with me, she made some Chinese food I'll never forget.  I also remember her not wanting to go back home.  I wish I had a plan in place to make her stay permanent. 

Most days, I'd get off from work and got to my moms.  One day, I left work for a lunch break because I felt like I needed to just be near her.  I laid next to her and remember stroking her hand until I fell asleep.  It was the best nap I'd had in a long time.  Later that day, my mom had a breathing attack that she could not overcome.  It wasn't until after her funeral, I noticed her pill container was in a disarray.  It was then she gave up the fight.  She fought long enough to witness that my brother and I would be okay without her. 

My mom survived 11 years with Scleroderma, beating the odds once given her.  I thank God for each day He allowed me to be in her presence and I try to emulate what she was to and for me for my own children.  I hope that I am able to be just as amazing as she was in all that I do and to all whose lives I touch.  Rest in peace Mommy.  I love you.