“One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.”
It’s easier to share my story now that I have walked the walk. Looking back on the 18 years that my son has dealt with his diagnosis of schizophrenia; I am amazed that my family has remained intact. Ironically, it has been through our son’s suffering that we’ve grown closer as a family.
Patty DeMauro
Together we’ve reached a deeper understanding and appreciation of each other’s strength and determination. When we first discovered our son’s illness, we were nothing more than hollow shells of our former selves, tossed about on the currents of a sickness we didn’t understand, navigating a system intimidating to those like us who had no idea where to begin.
Today after so many tears of sorrow and joy, hospitalizations, disappointments and triumphs we have HOPE! Hope that our son will live in a world surrounded by people who extend a bit more grace and kindness to those who don’t always conform to the “established norm.”
My husband, Dennis, and I celebrated our 21st wedding anniversary in 2021. Together as a family we also celebrated the longest period that our son has remained medication compliant, while carving out a productive, happy life on his own.
The past five years have been filled with growth and personal achievement for our son, as well as our entire family. When I look into those deep green eyes of my son as he tells me he has written a song that he plans to enter in a contest, every fiber of my being thanks God and all the mental healthcare advocates whom we’ve come to consider a part of our extended family.
These precious relationships give credence to the fact that mental illness cannot be dealt with alone. Confronting and battling such an insidious disease takes all the love, support and education within reach.
Our son was more fortunate than most, for during his often-times agonizing journey, he was blessed with parents who never left his side. And my son and I were doubly blessed that the man I married chose to rear my son as his own. Never once during the heartrending course of hospitalizations, legal battles, financial crises and abject despair, did he turn away from the challenge of providing our son with the best care possible.
I was told early on that the disease of mental illness was not a “casserole disease.” Friends and neighbors don’t visit with baked goods or flowers. People tend to shy away from what they don’t understand. Consequently, my husband and I lost contact with most of our acquaintances as our world revolved around our son’s illness. Early during my son’s illness, I made a vow that I would never assume the role of docile spectator where his health was concerned. I held fast to this vow regardless of the stumbling blocks encountered along the way, even when our son refused contact with his family.
Our lives consisted of therapy, case workers, psychiatrists … REPEAT. Week after week… month after month. Once he was picked up while walking barefoot down the middle of a highway and involuntarily committed. He showed signs of suicidal ideation and was placed on round the clock observation, and during a shift change he tried to hang himself with a torn sheet.
My child’s rejection of his family prompted me one morning to get in my car and simply drive with no destination in mind and ended up at the office of NAMI Collier County, the National Alliance on Mental Illness.
I didn’t realize at the time that meeting the director would be life altering for us. She let me think about that word again - HOPE. I tried to breathe it in, let it saturate the broken places in my mind and heart. Did I dare continue to hope that I was able to shape a future for my son that ensured he was seen as the amazing young man he was and not solely judged by a medical diagnosis?
Through letters of advocacy to legislators and help from NAMI, my son was transferred to a state hospital, where I hoped he would get the care he so desperately needed.
Before the transfer, I went to see my boy, my heart and soul. I didn’t have to wait long for him to make the first move. At 26 and six feet tall, he had to bend down to put his head on my shoulder. I wrapped my arms around him. “You’re going to get better,” I assured him. I felt his tears on my face. Hope was stronger than ever in me.
And then I did something I hadn’t done since our son was a little boy. When he was a child and afraid of doing something alone, I would take his hand and plant a kiss right in the center of his palm. I would fold his fingers over the kiss and tell him that when he felt frightened or weak, he could open his hand, feel my kiss and know I was with him giving him strength. On that day, the childhood ritual brought tears to us both.
I’d been uncertain of so many things when he was sick; but I was certain when I left the hospital that he had felt my strength through that simple childhood gesture. On the ride home, I thought of the smile that lit up his tired face when I placed that kiss in the palm of his hand.
Instead of feeling resentment and anger for young man who had endured more pain than most will in their entire lifetime, I felt strength. And that was all my husband, son and I needed to sustain us as a family during the years to come.
If You Go
What: NAMI Collier County’s 20th Annual Mental Health Walk with music, refreshments, face painting, balloon animals, and a photo booth.
When: Saturday, January 29, 2022
Where: Baker Park, Naples
Time: Registration: 8:30 a.m.
ABOUT THE AUTHOR
Patty DeMauro, a long-time supporter of NAMI Collier County, owned a women’s clothing store at The Mercato for 10 years. She is now the owner of Patty’s Apparel at Royal Cove Plaza in Naples.