Regrets From a Father: Real Life Personal SMA Family Dynamics
I have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor regrets. My daughter, Jessie, was a twin with my son, Lane, who was not born with SMA.
From three months of age, my wife and I were taking her to doctors, specialists, hospitals for research, therapy, to help with her condition.
Leaving our son behind for appointments
Lane from a very young age always had an aversion to doctors, hospitals, etc., and was not comfortable being in those types of situations. So, we left him with our best friends at an early age, while the rest of us made the trek to a research hospital and medical specialist about 50 miles away from our home, twice a week.
We did this for many years. Jessie was given tests and physical therapy there as well.
Inadvertently ignoring a siblings needs
Throughout Jessie’s life, we were always on the run, going to healthcare professionals to take care of her medical needs. But I did not realize (at 24 years of age) that I was inadvertently ignoring Lane’s needs.
Unfortunately, I was not present to do all the fatherly things one would do with a male child growing up because of my laser focus on Jessie’s health and trying to save her life.
Lane never complained. He knew Jessie needed additional care. However, I was not there to play ball, taking him to the park or beach, boy scouts, etc.
I was focused on keeping Jessie alive and as healthy as possible. I discussed with Lane that I thought it would be good to talk to a psychologist about his feelings.
He would not go for counseling. I went by myself.
Lane was a good boy and always was there for his sister. He never complained.
Trying to support my family's needs
I was a medical mid-level healthcare manager. I was always traveling on business.
I was often on the road several nights a week working. In hindsight, I was trying to make enough money to support my family’s medical needs. However, in looking back, I was again not there for my son. I regret that.
As a collective family, we all took care of Jessie. She passed away when she was 17 years old, a week after she graduated from high school.
Unfortunately, my wife developed ovarian cancer and ultimately died a year later. I told my son to consider getting grief counseling along with me. He again declined.
A declining relationship
We discussed his re-enrolling in college and then I would pay for it. He finally went back to college and graduated with a degree in healthcare administration. He then went on to have a successful career.
However, our relationship continued to decline further. I tried to speak to him about his feelings, but he never talked about our family's trials and tribulations.
I did try to apologize several times, over the years, but he has cut me out of his life. He is married with two small children. Lane called me when his first daughter was born to tell me that they had a baby, and he doesn’t want me in his life or ever see his children.
He cut me out of his life totally. I guess to punish me, he has robbed me of any future happiness. Now in my senior years, he has deprived me of the joy of being a grandfather to his children.
The moral of the story is not to ignore other siblings of family members in the house even though you are dealing with the devastating illness of another sibling.
The balance between your children is tantamount to healthy development. Each needs your undivided attention. Sadly, I learned my lessons the hard way.
Which emotional aspect of SMA do you find most difficult?