Divorce…A Rare Perspective

It’s comforting, in some respects, to know that we are not the only ones who are engaged in this somewhat daunting environment.   I sit here patiently among other parents in the waiting room, eagerly awaiting our children’s return from their weekly sessions.  We are all hoping there will be some improvement – even if only a miniscule amount to get us through our next meeting.  We are brought together by commonality, for we each share a grave desire to heal our children’s souls, their hearts, and their minds.  We are all in therapy.

For our family, it started prior to when the children were born.  There were hints and clues and many arguments that foretold where our future was headed.  Among the disappointment, occasional laughter, anger and tears, we still managed to have two beautiful children.  When the second child was born, we were elated to count all ten fingers and ten toes.  His head was larger than his body, but our physician assured us he would grow “into himself”.  Nine months later, our son was diagnosed with a rare syndrome.  Our future as a family would further be tested of its strength and stability. 

There are always two sides to the story.  There is never one person in the relationship that deserves all the accolades, prizes and awards for best behavior.  Each individual has their own cross to bear amid personal expectations of themselves, as well as combined efforts to understand the importance of the part they play in the dynamics of the family.  Unfortunately, without clear communication between the heads of the household, the strain of perceived duties and responsibilities to be shared by both and/or understood by both becomes greater and greater.  Add a child with a chronic illness requiring in-depth medical care, and more often than not, we have the propensity for the makings of a disaster. 

When our child was diagnosed with Russell-Silver Syndrome, we were elated that our child would perceivably lead a relatively normal lifestyle.  We also had a bright older sibling who early on showed a tremendous amount of empathy at an early age.  We had grief, doubts, and fear – but, we also had hope and faith.  We were a family and we would work together to establish as normal of a household that we could based on the limited information we knew about this rare disease.  Little did we know at the time of his diagnosis, our son would require constant medical care, surgeries and frequent hospital admissions, resulting in an unparalleled strain within our cohesive family.  

Many parents take on specific roles and responsibilities based on their personal comfort levels.  For some, they prefer being head of the household; managing finances, maintaining a stable career and income, and possibly home maintenance duties.  For others, they prefer the nurturing role; cleaning house, raising the children, and managing household tasks.  When we introduce a new level of responsibility that is unknown or unfamiliar to the usual functions accepted by one’s own perceived obligation, the short and long-term impact can result in a frenzied form of disappointments, betrayal, anger, and grief.  The level of tasks and constant dependability that is required to maintain a level of acceptable care for a child with a chronic illness is incredibly overwhelming.  In our son Ian’s case, at one point, Ian had 27 mandatory physician appointments per year – in addition to his endless hospital stays, laboratory and radiology appointments, 3 surgeries and emergency room visits.  This additional burden to one or more caretakers ultimately requires strength and fortitude without reservation.  The charge to move forward to ensure adequate medical treatments and health maintenance is a job in and of itself.   If the job is not a combined effort between both responsible adults, the extra responsibility will typically rest on one individual. 

Lifestyle change in a family with a child of a chronic illness may include, but is not limited to: increased financial burdens, disruption of family together time, demanding schedules, fear of the unknown and/or loss of a child, decreased tolerance of menial behaviors of others and often even decrease in quality of life for all family members.  Personally, the hardships can be even greater.  Fear, guilt, anxiety, lower threshold for patience of family members, and even physical and/or mental fatigue can be a result of the demands for a caretaker of a child with a chronic illness.  Again, the end result is an overburdened, exhausted and in many cases, resentful parent.

There is no blame per se.  There is little to no advice from attending physicians on how to manage and cope as a family when faced with a child with overwhelming medical needs.  In fact, most families are required to “figure it out” on their own accord.  In my case, I was an expert researcher, took the bull by the horns and fought to keep my child alive and understand the role of a parent with a child afflicted with a rare disease.  I became a speaker, writer, lobbyist, supporter and guru for Russell-Silver Syndrome – in effect – and advocate for children of rare disease.

Research has told us, the divorce rate between parents with special needs children is higher than that of mainstream divorce statistics.  We are told, 80% of families with autistic children end up in divorce – compared to 20% nationally after five years of marriage.  These statistics, although specific to families with autism spectrum – considered a rare disease, are alarming and a great cause for concern considering there are currently 7,000 rare diseases identified – of which affecting 30 million people in the US.  By the way, 75% of those rare diseases currently afflict children.

The impact divorce has on a child is faltering.  Some say children are resilient and some agree that divorce is detrimental and debilitating to their psyche.  I believe, there are a lot of mediums to this thought process – and it all depends on how you handle or approach the break-up of the family.  In our case, we as parents chose to be amicable and put our children first.  We decided to put our children’s needs and desires above ours, and although it hasn’t been easy…we are more fortunate than most.  Either way, one parent still carries the responsibilities and burdens of a child with a chronic illness. In our case, it is me.

So, here I sit – waiting for both of my children while they thoughtfully engage with their psychologist,   each of them struggling to learn how to better manage their anger, calm their fears of abandonment, and learning to release their desire to have both parents maintain a cohesive partnership.  And as I wait, I too am diligent to engage in required readings so as to learn to equip myself with behavior management tactics in our again changed environment.  I’m learning how to assuage difficult tempers, encourage my children in other ways then my own, as well as allay fears of loss as they pine for the important piece missing in their life – their father.  Oh, and my other responsibilities haven’t changed…I am still the individual managing the care of my child with a rare disease.