Jordan’s Story

On December 31, 1998, Jordan C. Hubbard entered into the world.  The son of Sherri and Jason, Jordan quickly began living a full life.  Traveling to and from, Jordan created many memories and brought smiles to his family.  Little did we know that a rare degenerative illness called Spinocerebellar Ataxia would take his life on March 29, 2002 at the age of three.  Jordan’s story is one of love and a demonstration of how wonderful God is and what it means to be His children.

Though five weeks premature Jordan was sent home from a Nashville hospital with a clean bill of health.  Having spent his early months living in Indiana, we moved to Texas where Jordan grew as a normal baby.  It was obvious that Jordan was a special child because he had the most beautiful smile and could change your disposition by simply laughing and grinning.

In December of 1999 Jordan took his first steps and what a joy that was.  All parents can reflect on that feeling of joy seeing their child take their first steps, Sherri and I were no different.  On the phone calling family to share the news, this was a special event.  Soon afterward Jordan was enrolled in day care where he made new friends and began to explore more of what life had to offer.

During the early stages of learning how to walk however it was noticed that Jordan fell on occasion.  This was expected and would seem quite natural as all toddlers learn to walk but in Jordan’s case however two things began to concern us.  The first was the frequency of the falls and the second was that Jordan received many swollen lips and even an occasional bruised nose.  It seemed to be due in part to his inability to brace himself, throw his arms out in front, when he began to stumble.  Thankful to God, Jordan had not lost his ability to smile.

After returning from a mommy and daddy vacation in May of 2000, we came home to Jordan who was under the care of his grandparents. It was then that the concerns became more serious.  It was apparent that swollen lips due to frequent falls became a common occurrence.  Sherri vividly remembers seeing Jordan’s busted lip and bruised nose and thinking, “we’ve got a problem”.

Mothers have a special “sixth” sense that Sherri did not suppress and thankfully Jordan’s pediatrician respected.  After a few visits of voicing concern, Sherri was pleased that though Jordan appeared to be in good health the doctor was willing to investigate further.  While acknowledging that he noticed nothing wrong, Jordan’s doctor referred us to a specialist that ultimately placed us in the care of a neurological pediatrician.

In a seemingly unrelated occurrence Jordan’s grandmother moved to Texas from New York.  Living with us temporarily, Sherri and I quickly noticed the amazing similarities between the gait of Jordan and his grandmother.  You see, at this time Jordan’s grandmother Diane had been coping with an unknown illness that caused her to gradually loose control of her gross motor skills, slur her speech and slowly impair her eyesight.  While in New York, Diane had seen many doctors and specialists who performed a myriad of tests and exams to no avail.  She never received a clear diagnosis to her ailment that ultimately caused her to retire from her job due to her poor eyesight.

The apparent similarity in Jordan’s condition and his grandmother caused us to return to the specialist who requested a visit with the entire family, including Diane.  Only 1 month after her arrival to Texas and about 10 months after Sherri expressed her initial concern we had a plausible diagnosis.  The symptom was Ataxia, which means “without order”, or “incordination”.  Under the doctors advice Diane was genetically tested and confirmed to have Spinocerebellar Ataxia (SCA) Type 7.  Based on the pattern of the illness it was clear that Jordan was suffering from an early onset of the degenerative condition.  We were empowered.  There now was a name and support available for everything that was going on!

I remember vividly the late afternoon in December 2000 when Sherri picked Jordan up from day care for what would be the last time.  By that time, the pattern of being called during the day and told about Jordan’s fall was commonplace.  Jordan was having more and more difficulty walking and playing without close, careful supervision and support.  Sherri was ready to pull him out because as all mothers can understand, no one can care for your child quite the way you can.  When Jordan and his mom walked through the door on that afternoon in December, I laid eyes on the ugly puffy lip and nothing had to be said… Jordan was coming out of day care.

Jordan would never be out of the presence of either his mom or me.  From then on Jordan’s life was forever changed and we embarked on a road never envisioned, caring for a special needs child. 

Jordan was soon enrolled in Early Childhood Intervention (www.eci-lps.org).  Through this wonderful agency he received at home visits for physical, speech and vision therapy.  The services Jordan received were important because they not only helped him learn and grow with his disabilities but they taught us as parents, how we could better interact and support him.

Despite all the difficulties and the challenges Sherri and I were always able to see God in the midst.  One of the ways in which we were grateful was for Jordan’s pleasant disposition, patience and tolerance for pain.  Over the next several months in 2001 Jordan would endure multiple doctor visits, probes and testing.  From regular procedures such as drawing blood to challenging episodes with a swallow study to the probative approach taken during his sleep study, Sherri and I were always amazed at Jordan and his model behavior.  He would patiently allow the nurses and doctors do what needed to be done and it was truly a lot.

Watching our son loose ability over such a short period of time was difficult.  We were constantly making adjustments but that also allowed us to appreciate the simple things more.  Having essentially been declared legally blind in the fall of 2001 our joy rested in the fact that Jordan loved to smile and had defined the activities that continued to bring him joy and that wonderful smile.

In December 2001 Jordan received a feeding tube.  By this time eating was a risky affair.  We had adjusted his food menu and their consistencies to minimize the possibility of aspiration but as he loss the ability to control his muscles so did he have problems swallowing.  Eating became a struggle and something that he nor Sherri and I looked forward to.  Who could blame Jordan when he decided to withdraw significantly from eating prompting the operation that would at least ensure he received the required nutrients.  One of our most difficult points came following the surgery.

We remember laughing with Jordan before the surgery after the doctors gave him some “goofy juice”, a type of relaxation drug in preparation for surgery.  He was all giggles and cracked us up.  That would be the last time that Jordan would smile.  Sherri and I had always relied on that beautiful smile but we would not see it again.

In the following months life was filled with adjusting to wheelchair usage and physically doing everything for Jordan.  As I mentioned, we saw firsthand the degenerative process and luckily for us there was time to adjust on a daily basis.  We were reminded of how rapidly Jordan was degenerating when family or friends would visit and share their perspective.  That experience was often hard for them. You see, Jordan sat up for the first time at 6 months, crawled at 9 months and took his first steps at 12 months.  SCA caused Jordan to revert to an infant like state but the resiliency of a child shined brightly. 

Looking back, it was apparent that because of Jordan’s love of life and freedom he quickly adapted throughout.  Due to frequent falls he decided it was safer to crawl.  From a brisk crawl I remember Jordan adjusting again content with standing on his on.  I also remember his excitement playing with other kids as he propped himself against a wall or a table.  He would simply stand still and participate the best way he could with all the action going on around him.  Jordan always had a good time. 

It was then one day that Jordan attempted to get down off the bed just as we taught him and just as he had so many times before, but he couldn’t.  When I went to help him and prop him against the bed his legs gave out, they were like noodles.  He could not stand without assistance. 

When people say that God works in mysterious ways, boy does He ever!  Not unique to our situation we wrangled back and forth with the insurance companies attempting to get the medical devices that would provide Jordan with a basic quality of life.  When the insurance company denied us a feeding chair and a bathing seat, God met our needs through other people. Our faith is now strengthened because we have seen numerous ways in which God has provided and opened doors when there didn’t seem to be a way.

It was March of 2002 and I returned home from work on a Friday evening.  Sherri was the primary caregiver and I supported as I knew how after work and on the weekends.  Needless to say, Jordan was blessed to have such a nurturing and patient mother.  On that particular evening though, Sherri was in tears after a discussion with one of Jordan’s doctors.  The doctor was calling with results from a recent test and he delivered some heavy news.  He indicated that he was surprised Jordan was still alive and that we probably did not have much time left.  That was a shock! Obviously for the information itself but the reality was like a ton of bricks because as with many, Jordan’s doctor did not like to speculate or go on record with “predictions”.

Sherri and I had already made plans to attend our first National Ataxia Foundation Annual Conference but with this new information I am thankful that God put it on our hearts to create a special family event.  We decided to take Jordan to the one place he hadn’t been but could still enjoy, the beach.  After leaving St. Louis we drove to Florida and it was beautiful.  Getting Jordan wet, putting sand between his toes and allowing him to soak up the sun was great.  Sure enough that would be the last family vacation.

The details around March 29, 2002 are too much to get into but the day started off with us in the hospital expecting to return home.  As the day started all that Jordan needed was his standard deep suction and breathing treatment.  You see Sherri and I had become quite adept at caring for Jordan and had even commented on how our bedroom felt like a small hospital room. 

Well we did not take Jordan home on March 29.  He left this world that evening shortly after 9 p.m. after about 15 hours in the hospital.  The doctors said he suffered from respiratory failure.  While it was hard to watch him leave us over that 15-hour period we were there and able to say good-bye.  When the time came it was quick and peaceful.

As Sherri and I reflect on the events leading up to that day we believe that God allowed Jordan to stay until we were spiritually ready to handle the loss.  It was as if God said to Jordan, “Okay Jordan, your parents are ready spiritually, it’s time for you to come home.  Your work is done, now lets watch my plan unfold.”  

In addition to growing spiritually so that we could better deal with the separation from our son, in the time we were given we created many memories.  As a family we did much together and have pictures, home videos and most importantly the memories of the great times we shared.  Times that we lean on each day, times that were unique to mother and son as well as father and son.  To summarize what the death of our son has done I will leave you with this thought and scripture verse.  “We see Jordan’s situation as a God given opportunity to cooperate with His plan and by serving Him, fulfill something greater than we could possibly achieve”.

 Please see John 9:1-3.