Issue #28 – The Paradoxical Relationship – My Imperfect Puzzle

Posted on Posted in All Articles, Down Syndrome and Congenital Heart Defects

By R. Reisman

Life is like a puzzle.
We, as parents, are gifted with the duty to put all the pieces of our children’s lives together and make them fit seamlessly into a perfect picture.
Seems so simple.
Have you ever looked at those professional photographs of families taken outside in a garden, usually taken in the summer time?
Matching outfits
Beautiful smiles
Perfect teeth
Silky skin
Innocent shining eyes
Rosy cheeks
Siblings growing up together – picture perfect.
Everything goes smoothly.
No hassles
No resentment
No bickering
No jealousy
No arguments
No misunderstandings
No pain
One for all and all for one
If only it were that simple.
Reality check:
Sibling relationships are complicated.
They’re sticky
They’re messy
They’re conflicting
They’re haphazard
They’re hypocritical
They’re irrational
They’re unpredictable
They’re painful.
And many times that pain follows children into adulthood with their childhood angst following dutifully behind.
There’s nothing neat and simple about the relationships between brothers and sisters. Compound that with having a sibling who’s disabled and it’s a whole different ballgame.
Having resentment towards a disabled brother?
How can a sibling who has his entire future ahead of himself be envious toward his disabled sibling? It doesn’t make sense!
When does he mature enough to realize that he has been given opportunities to reach milestones his disabled sibling will never get?
At what point in his life does he let go of his resentment for his perceived feelings of being shorted by his parents, as they dealt with his disabled sibling ?
How’s it possible to resent one’s disabled sibling when you know your life will be filled with blessings your sibling can’t even begin to understand?
How do you square one’s feelings of repressed anger toward your parents for devoting enormous amounts of time and attention to your disabled sibling while you were selflessly struggling with issues of your own?
The reality is that despite the irrationality of those thoughts, there are many ‘sibs’ who may rightfully feel that they were sidelined in their formative years, while their parents focused mostly on their disabled sibling.
A child’s feelings are hurt.
Their pain runs deep
You can’t reclaim those years
You can’t relive or reconstruct conversations

Nor undo certain decisions
You can’t dry tears already cried
You can’t change certain circumstances
You can’t redo certain situations.
If I had the opportunity to do it all again,
I simply don’t know if or how I would change anything.
Balancing my responsibilities towards my 3 older children while managing the health of my baby with Down syndrome who entered the world with a heart condition and who would later be diagnosed with failure to thrive, was one of the most difficult years I’ve encountered. To say I was overwhelmed and saddled with incredible stress is an understatement!!! Raising 4 kids under the age of 8 while caring for my parents while they aged, fell ill and passed away within 5 years of having my son took a heavy toll on me; both physically and emotionally.
I was pulled in many directions.
To whom should I turn my attention first?
Who is the squeaky wheel?
Who gets oiled first?
The toddler?
The preschooler?
The baby?
I tried my best to keep all the balls in the air – as I extended myself to my kids, my husband, my parents, and my jobs.

I was everything to everyone.
I have no complaints…only gratitude that we made it through – well, maybe with some dents along the way.
But 2 decades later, as my children have become full adults, I’ve gotten “feedback“:
Unsolicited? Yes.
Unwarranted? I’m not so sure.
Complaint list:
You always gave in to his behaviors
We, as kids, had to make significant concessions for his benefit
You were too easy on him
You still treat him like a child
He gets away with things, knowing you’ll cave to his every whim
It’s time to place him in a residence
He’s so immature – he needs to be held to a higher standard
I didn’t feel I got the attention I needed.
It’s possible it’s all true.
My response:
I loved you despite the hurt I caused you
It’s possible I listened – but didn’t hear
Its possible I tried, but not hard enough
It’s possible I empathized, but you didn’t feel it
My time was stretched, maybe too thin
My patience was tried… and I failed…
It’s possible I failed to focus on you and all that you needed.
I’m sorry, but I’m not.
I tried my best – maybe my best wasn’t good enough.
I feel deep regret, but unsure how it could’ve been different.
At this juncture, I’m so proud of you as men and yet miss you terribly as young little boys. I see you as parents now and wonder what complaints your kids will have for you in the future.
I’m pained by your pain, by your resentment , yet I have no clue as to how I could have done things differently.
Tears roll down my face, realizing I have failed you and have no way to ever make it up to you.
Am I a failure because you felt deprived?
I don’t think it’s fair for me to place that weight on my shoulders.
I was trying to juggle so many responsibilities.
It’s complicated.
There are no easy answers.
I’m Only Human…
Maybe it’s as simple as that.
I hope dear boys, you come to a place in time, deep inside of you, where you can forgive me, your mother, for being human…
And embrace that place called “Acceptance“.
Only puzzles are perfect where all the pieces fit together.
People.. Just try to be…