(3-21-16)
Dear Pete,
I really don’t hardly know what to say. For almost 20 years I have fought, sacrificed, even literally bled trying to save my son. At times, we have had almost miraculous “victories” and, at times an equally balancing amount of “losses.” I thought it was bad when he was autistic and had seizures. I had no idea how “easy” we had it then even though it was such a hard time. After the diabetes and the mental illness hit — I do believe I have seen a glimpse of what Hell must be like. Psychosis. Schizoaffective disorder depressive type.
There are times I see my son and there are times I see a distortion of something that can not be recognized. During the distortions I am so afraid. Afraid he will hurt himself. Afraid he will hurt others. Afraid I won’t be able to see it or stop it in time though God knows I am trying.
Ironically, the times I DO see my son are some of the most painful. That is when I see him in an agony that I can’t make better. I promise him. Oh honey, when the meds are right you will feel better. Oh honey, when we get “fill in the blank service” you will want to live. Oh honey, just keep fighting. He looks at me with such appeal. Such hope that mommy can make the boo boo’s go away. But there is never a time when it really IS better. I fight against a hill of sand, clutching and desperate to stay in place. A hill where “victory” is simply found in not slipping farther down. Progress is an elusive dream that motivates — yet never is realized.
We are one of the “blessed.” Top 1%. We have been able to provide an assisted living home with support for him. But the cost has been massive and while I am grateful — I don’t know how much longer we can provide what is the barest minimum that he needs. Enough to keep a semblance of stability. Not enough for growth. That cost is beyond our reach. How long till he decides he wants to walk out anyway with a delusional idea that he will be fine on the streets? What happens when the money runs out and I have nowhere else to find him help? Even as a 1% family we can’t afford the services he needs much longer. My God how my heart breaks for those not as fortunate — I am so grateful for whatever time we have. He can’t come home. I can’t risk the danger to his younger brother and sister. What happens next? No one disagrees that he will hurt himself or others and yet there IS NO HELP. I can get on a wait list . . . .
Seeking help is a full time job. I am lucky because I am a stay at home mom. An attorney by education, a stay at home mom by need. Need of my disabled child. Make no mistake — I recognize my fortune. I have a choice at the moment and I am grateful. I would not have chosen differently if I could go back in time. And yet. . . . It is so very hard to work at a goal that is never fulfilled. A “whack a mole” game with a life I hold precious. Each “problem” I whack only to have another instantly pop it’s head up.
A stay at home mom. I have the time, right? Sure. I spend 40 hours plus each week applying for benefits we are constantly denied or we “win” at such paltry levels to leave me in resentment over the sacrifice in seeking them. He will need care the rest of his life. 130K/year. Again — this is to keep him from homelessness or jail. Not to give him a LIFE. Yet, his $140/month in food stamps is something I still celebrate. Let’s not forget the countless hours talking with doctors, sending emails, calming him down when he calls in a “bad place”, planning for a future that is ever changing, unpredictable and terrifying. Each and EVERY day. I struggle to deal with his needs and still be a good mom to the other children I love equally. They need help with homework and I struggle to concentrate as I worry about what my son is doing. Is he really safe? I try to cook dinner and the paperwork for yet another Medicaid waiver is in my head needing to be finished. God knows how much they sacrificed while he was in the home. A post of guilt and determination for another time.
Here is one of the worst aspects. At least once a week –often more –I get “a call.” He is struggling. I need to make a decision. Is he hospitalized? If I get it wrong — he may hurt himself or others. If I get it wrong the other way — he may never trust me or his therapists again. If I get it right — that is fantastic — until the next day when the call comes again. Rinse and repeat. Eventually I will get it wrong. And I will have to look myself and others in the eye every day thereafter knowing I have failed and he or others paid the price. Can we say “work place stress” anyone?
To hold a life of one that I would die for in my hands. To hold not only his; but, possibly many in your hands and to not know all the facts. To not know the future yet be responsible for the outcome. To say it keeps me up at night is an understatement.
Can I talk to my “friends?” To my church? To the community? Are you insane yourself? Sometimes I have to bite my tongue so hard it bleeds. I have so many who talk about their “struggles” with getting their kids to apply to college and I wonder what the look on their face would be if I spoke of how I struggled to make sure my child didn’t pull a knife on me? How does one talk about a child that may be the next homicidal maniac? The one that others are so quick to ask “what was wrong at home?” How do you explain the awareness of mental illness that, at least in my case, comes with an awareness of danger. . .and yet, my heart has compassion for him? He will always be MY SON. My GOD. Look into his eyes. He is in agony. And yet I am afraid and horrified of what this disease may provoke. Often, he is unaware and shouting at ghosts. To him though . . . they threaten him. I have many doctors for him. I follow their recommendations. But, let’s be honest. The day I get it wrong it will be me that answers. To others and; yes, to myself. So many, “what if’s.”
Today I had one of those calls. And tonight I won’t sleep. Did I get it right? Will I awake to another call of even worse news? How can I continue to face this impossible life?
Sign me: A mother clinging to hope
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