Saturdays with Matthew and My New Normal Life

 I used to be afraid of those with mental illness. I didn't understand it.  It was spooky. Unknown. People with mental illness didn't act within the norm.

I glided through most of my life without giving it much thought until my adult son was diagnosed with Schizoeffective disorder, PTSD, anxiety disorder, and paranoid His life living skills, along with much of his personality, changed.

Neuron's in the brain can cause a lot of damage to one's perspective, and how one chooses to live life from that moment forward. It involves ongoing care with close psychiatric monitoring, an ever changing cocktail of medications, constant monitoring, and being there for someone 100%  24/7. I never knew what that really was like until my son's illness bloomed.

A new normal means setting aside your entire life, forever, to be at the whim of someones brain function. It's not only my new normal, but his new normal as well.

Many have suggested I put Matthew into a mental health community. First of all, there aren't any, unless you have millions to spend.

I want Matthew to relearn what its like to live a life as fully and as normally as possible. Part of that is education. Not just education for my son, but educating others, who like I once was, are afraid.

I will not isolate my son. If someone has cancer, we do not even consider  putting the cancer patients into a community, hiding them away. We envelope them with our love, acceptance, and make life for them as normal as we can.

I want to give you a peek into our typical Saturday.

"Matthew, I have errands to run. Want to come along?" I ask.
"Yes, let me get dressed."
Translation: I need to put on my clothes, take a handfull of pills, and sit on the backporch to gather my thoughts.

Thirty minutes later, we are in the car.
"Where are we going Mom?"
"I need to stop at Lowes. Will you be able to come inside with me today?"
"I will try."
Translation: I am really afraid of the unknown. I have to wait to see how many people are there before I decide.
We arrive at Lowes. My son swallows hard and looks around. "I will try."
"Good."
He follows me inside and gets a cart. As we walk through the household plant section, he becomes mesmirized and wants to look at each plant. I, on the other hand, am in a hurry. "Why don't I leave you here with the cart? Stay right here. I need to pick up a paint brush. Give me 5 minutes. Stay here, okay? Matthew, do you hear me? Wait here?"

But, it takes me 10 minues, not 5. I return to the succulents, exactly where I left him. Matthew and the cart are gone. My heart beats hard. Where is he?

I walk back into the main part of the store and search. Finally I see him running toward me pushing the cart in front, screaming, "Mom! Mom!"

We leave the cart and return to the car. He works at getting himself together--measuring his breaths, trying to calm his heart rate. He heard voices taunting him from the vents.  He tells me that I am his anchor and I was gone.

We go home.  I finish the errands alone. Later he says he would like to try going out again.
"How about if we go for dinner somewhere?"
He picks a place he went a lot before the illness overtook him. He feels safe there. We sit in a booth. He puts on his headphones to block out voices that arent there; they are there for him. We make it through a meal. He is fine. We return to the car triumphant.

I remember I forgot something at the grocery store. Matthew decides to wait for me in the car. He refuses to go inside. Thats okay. I never push. I get the item and a few more. We go home.

He sits on the backporch.

The sky is dark now.

He feels safe.  

Do NOT feel sorry for me. Do NOT feel sorry for my son. Instead, seek to understand the mentally ill.  Understanding is the perfect gift.

I am far from the only one who goes through this with my son. My son is far from the only one who is cursed with this. You will make us both feel less alone by understanding and acceptance.

PS Today is Sunday. We went to the grocery store again. This time Matthew ventured inside with me. He clung onto the cart as though it was his life preserver. His hoody was draped over his head in a hiding manner. An elderly lady stopped him and sweetly commented, "I love your beard young man! Its a wonderful beard!"

Matthew lit up. He smiled, and pulled off his hood so she could get a better look at his face and the foot long red beard. "Thank you very much!"
He glowed.
I cried.
We both were ecstatically happy.

The Widows Mite & Raising an Adult Child with Mental Illness When Only One Part of The Village is Involved.

My son has always been a bit quirky. I sloughed it off to him being a team member of special education plus he was a boy.  He'd cry when I dropped him at school mornings until he was in 5th grade, claiming monsters were after him and said terrible words. Actually, a teacher on the way to school myself, I felt the same, but meant it figuratively. I never knew, until much later, it was literal for him.

He never liked being outside. Most kids get grounded and can't play outside. I would ground him to go outside just so he'd to get sunshine. Matthew also hated Field Day. I'd try to tell him how much fun it would be without struggling inside with reading and writing and math. "You don't understand Mom. There's grass and sun and air out there."

Then at 16 years of age, we got the phone call from his high school counselor saying Matthew had plans to end his life. I immediately went into panic mode digging out insurance cards to get him help. My then-husband explained to me, "Matthew is fine. He's just wanting attention."
 "Let's give it to him!" I responded.

That was his first stint in a behavior unit.

After several years of counseling, things seemed to smooth out for Matthew. Its also when my husband and I split.

Matthew and I moved to Denton, Texas, and took an apartment, while my ex remarried and moved to Dallas; 30 minutes away.

Matthew already took a six week course to become a certified nurse's aide and he happily landed a job at a all-care facility where he worked for several years. But then the voices returned. It coincided at the same time we moved into our new house.

Change was always hard for him, but this time they brought on multiple psychotic breaks, followed by  hospitalizations.

 I'd sit all night beside him at the hospital and somehow manage to go to work the next day. When he was admitted to mental health facilities, I visited him every chance I could. I spoke to doctors, filled out endless paperwork, applied and was rejected many times for his SSI; this went on for a few years, to the point of my utter exhaustion.

I struggled with finances, as I cared for him. 

Finally, Matthew was granted food stamps. A true godsend! And now he has a lawyer for SSI. Our court date is soon.

The last time Matthew went to the ER was for high blood pressure due to anxiety attacks. It happened twice in a few days, back to back. I sat with him until he was dismissed at 3 am one time, and 2 am the next. Again I went to work.

Its a blessing to help my sweet son. I am here for him, and will be, until I no longer walk this earth.

As I told Matthew's story to help dispel the mental illness stigma, single Mothers and Fathers of mentally or physically handicapped, and mentally ill adults have contacted me. Like me, they feel it an honor to care for our children; feed, cloth, drive to appointments, take time from work, give financially, total emotional care, and so forth.

 I am certainly not the only one. Sooner or later, everyone has challenges in life.

I must admit that it is hard to go through this alone; totally alone without someone to lean my head on. Without someone to hold my hand and tell me it will be alright.

One night, not so long ago, I was praying for us single Moms and Dads who walk down this chosen path without village help. In tears I prayed for God's grace and strength. And, then God spoke to me about The Parable of the Widow's Mite Mark 12:42. A widow gave all she had to the Lord's work, 2 mites (pennies). It was most pleasing in the eyes of Jesus after he had witnessed others who gave a lot, but never gave their all, nor their best. I knew God was pleased with what I did to help my son. 

My heart leaped.

Suddenly, I am not alone.
Mother, Father, you are not alone.
Jesus sits with me.
 Jesus sits with you.
He holds my hand as I lean my head on his shoulder.
He holds your hand as you lean on his shoulder.

 He says, it will be alright.
He tells you that it will be alright.

When I feel I cannot take another step He holds me up.
 He holds you up when you feel you are about to fall.
When finances are tight, unexpected money arrives in the form of a low utility bill, or a restaurant gift card from a silently listening friend.

When I am awake most the night with my son, God gives me the energy to make it through the next  day.
 And he does the same for you.

 Do not despair.

Male or female, you are that widow with the two mites, and with it, you have given all you have. Jesus smiles. He sees us. He hears our prayers. He cries with us.

And best of all, sometimes,  I hear my son really laugh with happiness.