Elise Ronan
Justice, justice, you shall pursue....

Assimilating the guilt

Guilt. It’s a really interesting emotion. Jewish guilt has provided hours of fodder for comedians, and paychecks for therapists and rabbis. Jewish guilt especially has an unusual way of creeping into the daily life of parents. But until you have a child with a special need you have no idea how all consuming guilt could be. You continually second guess everything you did during pregnancy and beyond.

What did you eat? Did you take enough prenatal vitamins? Why did you have to take that Tylenol and could you have done without that antibiotic for your bronchitis? Did you avoid enough caffeine? And why oh why did you listen to your doctor and allow yourself that one glass of wine a week?  Was it the pregnancy yoga or Pilates that caused the glitch in your child’s development? Should you have just walked instead? Or should you have biked more, ran longer or tried the latest exercise fad? Should you not have had that epidural, or should you have had that epidural? Should you have used a midwife instead of a doctor? Have a home birth instead of a hospital? Should you have breast fed longer, not breast fed so long, used a different formula or had a better feeding schedule? Should you have used a different brand of baby food, not been so lazy and made your own, or maybe you shouldn’t have listened to your grandmother about when to start the baby on solid food? Was your child’s disability really caused by the fact that you live in a city, or that you waited until you were in your thirties to get pregnant?

Meanwhile, tabloid news, plus conspiracy theorists, scientists trying to make a name for themselves, psychiatric professionals looking to kudos from their compatriots, those who hawk their dangerous therapies, along with politicians trying to garner votes don’t help the guilt matrix either. The list of questions about the causation of developmental disabilities, coupled with the self-doubt that goes naturally with parenting, can lead to a depression and a feeling of a profound inadequacy in parents dealing with a child with special needs.

So often all this extraneous information and infighting leads parents to find themselves dealing with an overwhelming sadness, feelings of extreme loneliness and eventually anger. Personally my anger was directed squarely at Hashem himself. And while I have made my peace with the Almighty, I have not forgiven him for the path he has set for my sons.

And please don’t tell me that G-d only gives us what we can handle or there is an unknown purpose at play. Those of us who live in the world of special needs actually understand that no, no he does not, and no, no there is not. Don’t tell me my sons are special angels or blessed. And especially don’t tell me they are being punished for some unseen sin, especially with the evil people that live unscathed in this world. We, parents of special needs children, are not all Jacob fighting the angel through the night and we are definitely not always winning. We cannot all be renamed “Israel.” We, or our children, are not prophets being able to assimilate the meaning of visions or understanding the purposes of the paths set before us. Do not use us, so that you can try to figure out the unexplainable in the world. Platitudes to a parent of a special needs child are condescending and unhelpful. In truth, sometimes, just sometimes, what we are given to deal with simply breaks us both emotionally and physically, because above all, one day we are forced to confront the fact that we are all too human.

Honestly, you really won’t hear too much about the emotional turmoil that parents go through. They don’t talk about it. They don’t want the world at large to think they don’t love their child. They don’t want the world at large to think that they don’t accept their child for who they are and that somehow their child’s disability is about them instead of the child. Parents are very circumspect when it comes to dealing with their own emotions and in so many cases put the hurt and their own dashed hopes into a corner that is never seen or heard from again. For we all have dreams for our children. From the moment that you hear you are pregnant, and then hold that infant in your arms, you have dreams for them of a future of their choosing. It is hard to explain the pain when your dreams for your child die. The terror you confront when you know that your child may always live at the mercy of others and may always be as dependent as a child and pray that there is someone out there in the world who will care for them as much as you do. We do the rational thing, the expected thing, and the appropriate thing. We choose guardians, write wills, and if lucky enough can leave behind some money for their care, and yet we also know deep down inside that we can never, ever die.

Eventually you must deal with the reality that your parental pain exists. That it is there and it is real. And that it is OK to acknowledge your feelings. It is OK to recognize that while you are parenting you are also human and at times you get overwhelmed, feel sad and wish that life was different. It doesn’t mean you love your child any less; perhaps you love your child even more than you ever thought possible. For as parents we know the curveballs that life hands us at times and we wish that life would be easier for our offspring, not harder. We want to make the world a kind and gentle place, full of love and understanding. But then we are faced with the harsh reality that your child, through no fault of its own, is facing an uphill battle that at times seems simply insurmountable. And yes we change our dreams. We change our expectations and we change how we approach reality for our children.

We learn to survive. We learn to expect the unexpected. We learn to adapt, persevere and plan for the worst while always hoping for the best. We plan for a future when we will not exist. We take each day, each hour, each moment as it comes and work with our children through the realities, the confusion and the issues. We learn to judge by a different set of rules, milestones and expectations. We learn to not worry what our neighbor, what our friends or even what our family may think. We do what is best for our children and then we may even do what is best for ourselves.

Then one day, ultimately, we pause. Take a breath. Think. And ironically we pray to Hashem. The Almighty. The one who you have made your peace with, but don’t forgive, for the path he has set out for your child. You pray for guidance, clarity, strength of will and fortitude. But mostly, above all, you pray for peace.

About the Author
#RenegadeJew ...Elise's specific background deals with the practical aspects of raising special needs children. She has over 20 years experience advocating for her sons and others. Her motto: Don't put off the important things. Stand up for what you believe in. Do what is right and honest. Have patience. Have self-respect. Be kind. And above all BE BRAVE. Elise is a graduate of Boston University Law School and a Certified College Transition Coach for Persons with Asperger's Syndrome. She blogs under a pen-name to protect her sons' privacy.