I am having a true crisis of faith lately and I am struggling emotionally to come to terms with the life I have had a good hand in creating for myself. If I can believe in God and that this God “blessed” me with my 5 children, 1 from my first marriage of whom I gave up custody, and 4 from my second marriage, with three of these four having a serious chronic inherited medical condition that affects every aspect of their lives, then I can accept my lot in life. I was able to do this for a while and maintain faith and a connection with a higher power.
In the last few months, something within me has shifted and I feel somewhat ill at ease with myself and my careless choices and my often obsessive fixation on what I believe was a bit of an addiction to pregnancy. Somehow, when I was pregnant, I felt worthwhile and able to properly care for myself and look forward to the exciting event of having a baby. I was able to maintain sobriety and put the needs of my unborn baby first, as much as possible. A newborn baby is a wonderful thing, yet like an acorn, I realize now, a baby comes coded with a map of life and despite my hope and determination to get the necessary help for all my differently abled children, I am not able to save them in any way and they are bound to more suffering in life than I ever experienced or can imagine. Psychological suffering, physical suffering, emotional suffering and if I had thought through my choices while in a volatile relationship and understood the weighty matter of my choices, I would have spared these souls this challenging existence in a world that is not geared to enable these kids to aspire and attain typical life rewards.
Every morning I get up and am faced with the raw and increasingly emergent fact that as these kids age into adulthood, I am responsible for making sure they have at least a glimpse of an opportunity to feel some measure of independence. One of the three with the disability is not compromised intellectually, and has the chance at a decent life, however medical issues will most likely become more concerning with age. The other two children will continue to need immense medical and psychological interventions in order to survive in life after I am gone. Every morning and throughout the day, as I am not working outside the home at this point, I feel complete and utter self-hatred and sometimes remorse that based on my careless decisions they suffer, I suffer and life becomes incredibly grim.
There is not a day that goes by that I am not confronted with some aspect of their disability which is gut wrenching. The toxic combination of my ex-husband and myself gave rise to hellish behavior on both of our parts. We were hit with a monsoon of stress when my oldest daughter from this marriage was diagnosed with TSC. A relationship that had been somewhat stable and progressing, became mortally wounded with the crack in our universe of our small infant daughter’s diagnoses of tuberous sclerosis complex. The word on the street back in 1996, was that the prognosis with this condition, wasn’t good.
It’s just this dark chasm to which I descend when I contemplate my plight. I found much solace in my 12 step recovery program and was able to step outside organized religion and understand the idea of a higher power, something greater than myself, to which to surrender. And it worked. For a while. After some time, it seemed to become a religion of its own with sly dogma and fundamental beliefs that while not scribed in stone, are comparable to every other form of religion to which I’ve been exposed. I refuse to subscribe to the mentality that most AA-ers subscribe to which is subtle but undertones are rife through the program, that of “all or nothing” and those that cannot maintain continuous sobriety are subject to self-loathing and possible binges based on the idea that they have “failed”. So I question and experiment. So I guess I’m a failure if I relapse? Eff. That. But I won’t, because it doesn’t hold any long term promise anyway either.
My experience with conservative Christianity was similar. I grew up with the idea that if you weren’t a Christian and hadn’t formally asked Jesus to come into your life, similar to the surrender that is “suggested” in AA, then you’d go to hell. So I felt “different” and judged others based on their beliefs and was happy to go to a Christian school where I felt safe and at the same time where my beliefs were extolled. Yet a part of me didn’t feel as if I bought the whole thing and I had to question. That questioning led me down a dark road of drug use and alcohol soaked decision making ultimately ending up with me deciding that it was too much for me to care for my son and giving full custody to his father whom I divorced.
It seems the essence is that what is there to believe if all religions and groups that seem to be utterly convinced that their way is the right and true way when I cannot accept that there is only one path to a higher power? Maybe a higher power is just within our own brain and our consciousness, and not outside of ourselves at all. It gives me no relief lately. The drive to survive my own neuroses ended up creating consequences of which with I am unable to come to terms. I must drag around the reality of my selfish, impulsive choices for the rest of my life and the intense haunting shame and guilt for facilitating the creation of humans starting life with disease. It is true hell and I don’t know where to go with these feelings other than writing them out and getting them out from inside me.
Such a dark essay. Morning breaks anew and I am always greeted by loving and kind children who refuse to be locked in any sort of box of diagnoses or limitations of spirit. For this simple gift, I am grateful. There are a few things which I’ve been told and to which I cling with a wrenching grasp. The first is that we are all doing the best we can with what we know at any given time and the second is that my children are their own people, with their own thoughts and feelings and who am I to judge the measure of their consciousness and experience in life? I guess that’s enough to hold on to for now. It won’t bring me to a place of ease as that is impossible for me in this lifetime. I will always question and push the boundaries of any belief system which subscribes to the idea that any one entity is the answer. #IAMTSC