That there medical marvels mean your son is alive, and cared for, and that outrageously expensive care is paid for, that you are not bankrupt because of that care is goddamned fucking MIRACLE.
That you are so insightful and gorgeous in your dealing with your family is no short of other-worldly.
I could have never imagined this prior to living it. The majority of the time, I’m proud of my path, but it’s lonely being the only person who truly gets it. I’m not giving up on work – but it will have to also be unique to fit into my life. It also felt like I once again found a group I enjoy, but because of my unique life, I don’t fit in. It’s not easy going through life alone – but I’m doing it and hopefully I’ll find a way to stay happy while doing it. Yours is a story worth writing about, and I am honored you shared it with me. Romantic love is not an elusive, precious commodity reserved only for the young and physically ‘perfect,’ with uncomplicated lives. Now that your son lives in a facility, you have free time (a giant challenge for many moms in dating).
This isn’t Down’s Syndrome – and I’m in no way minimizing those struggles – simply comparing the day to day volatility. I am blessed to have a few great girlfriends who “take me” when I’m available. They and my family help me a tremendous amount with my neurotypical daughter, so her life has consistency and value. Men my age want to start traveling – most of their kids are college age. I’m the only parent, and I have the contingent of my son’s impromptu care out-of-state. Most people don’t respect my purpose, including prospective dates. I’m aware of my limitations, and I need to stay away from people who judge me. You say you have sufficient money (again, critical challenge for, pretty much 99% of people in the world).
For a certain subset of us, our kids are so severe, there is no sitter available. Here is a summary of our exchange: Me: Can you elaborate in a way that would want me to engage? Mom: I have a 15 year old son, who is severely disabled. That being said, because of his disabilities, my life is unique. In order to do so I will need to share some graphic details. My son has severe, nonverbal autism, debilitating obsessive compulsive disorder, bipolar mania, two inoperable brain tumors, severe epilepsy and possibly schizophrenia.
I made a commitment to him years ago that I would ALWAYS insist he is treated with dignity. He will never be able to speak, but he understands everything that is said. When regulated, he can communicate with an i Pad, yet he always makes his wants known, even without the i Pad.
You must get married ASAP to be a good role model for your children. I’m here to tell you: There are so many wonderful, loving, successful and attractive men who are open to if not actively interested in women who are moms.
Honoring your romantic, sexual and emotional needs is a gift to your children, as you are modeling a healthy, full life, and relieving them of the burden of fulfilling your emotional needs. Lord knows the nuclear family model didn’t work out so great for most people. I’ve made peace with never having a romantic relationship again.
He adores his family, and depends greatly on my protection and care.
The difficult behaviors that accompany his various diagnoses are overwhelming.
After 12 years of educational court battles, surgeries, child psych hospital stays (many), thousands of hours of therapies, consultations and treatments with physicians across the nation, I could no longer keep him at home.