Today I’m sharing a photo of me holding our son at my older sister’s wedding. So, this must be from February 1992. Wow, it feels like that was so very long ago...
As we were watching her wedding, held in the same Presbyterian Church in Gouverneur, New York, where my husband Scott and I got married, I can remember imagining our son growing up and getting married as well. So many things we imagine for our children, the hopes and dreams most of us share: for them to find someone to love, to find a career that makes them fulfilled, and for health and happiness.
Well, when our son became so very sick with his serious brain disorder, our dreams and hopes changed dramatically. Ever so sadly, one comes to accept that many of our dreams for our children will likely never happen. And, eventually, we process our grief, let go of those dreams, and, if we’re lucky, we begin imagining new ones.
So, what do I dream of now for our son and so many others like him? Oh my, I have so many dreams.
I dream of money being put into research to help find more effective treatments and cures for serious brain disorders.
I dream of creating wonderful psychiatric assisted living campuses with multiple levels of care from acute care hospitalization, to sub-acute units, to independent living apartments — with actual collaborative care and engagement with a team of compassionate and skilled mental health professionals and social workers and vocational rehab counselors and so much more.
I dream of establishing state-of-the-art treatment campuses that we would be proud to bring a family member with a brain disorder to for help. A place where we would be proud to work, and visit, and volunteer.
I dream of collaborative community care of all sorts, including assisted outpatient treatment teams working with civil mental health courts, so that people don’t have to get so sick they end up committing a crime before that level of care can be provided.
I dream of no person with a mental illness ending up in a jail or a prison, just because they are sick and haven’t been able to get medical treatment.
I dream of no person ending up homeless and untreated on our streets.
I dream of our son being able to live as independently as possible and being engaged in some activity that he enjoys — whether that be his art or volunteering or even working part-time.
I dream of our son living with as little suffering as possible, with friends, family, and a caring treatment team who are invested in his well being. And after Scott and I are no longer living, I dream that our son will be okay when we can no longer advocate and support him.
I dream of him finally having the ability to have peace within his mind and for the voices to go away.
I dream of these things, now, because of the restoration of my ability to hope, because of my NAMI family, and attending NAMI’s amazing signature program, “Family to Family.”
For this reason, Scott and I are participating in our NAMI’s largest fundraiser, the NAMIWalk, on May 2 here in Iowa City. There are numerous NAMIWalks across the country. Hopefully, many will support them.