Today we gathered with family and friends to celebrate Maya’s 16th birthday. It was a beautiful day filled with love and laughter. My heart and mind both overflowing with thankfulness and blessings. But the whole day I missed him. I felt the excruciating pain of his absence as I smiled and held the other blessings in my life. With every fiber of my being I wanted to leave. I wanted to go and get my son.
Damian has had 2 self harm episodes in the last 10 days at Hillside. Medicaid wants to discharge him and I am losing touch with my ability to see him back at home. Garrett and I rarely talk about anything else but Damian. We rarely talk to anyone outside of Damian’s teachers, his psychologist, his psychiatrist, his group leader, his family counselor, or his team coordinator. There is no time left in the day for much else. He consumes our hearts, requires our time, dictates and directs our emotions, strains our sanity, and continuously keeps our minds searching for balance. When he was at home we had at least some moments of joy, calm, or peace to cling to. Right now those moments are not for us and we are left with nothing but struggle.
Sorry it’s been awhile. Damian is doing well at Hillside but continues to struggle with us. It is like trying to save a sinking ship with duct tape and a slotted spoon.
I was listening to NPR on the ride home today (feeling slightly guilty that the world’s problems can make me blissfully forget my own for an hour) when I realized something. Our family counseling sessions are like peace treaty talks between two warring countries. But the talks don’t work unless both parties are willing. Tomorrow we will have our first family session since his latest cycle of behavior that led to his being returned to Hillside a day early on Thursday. We pray for willingness.
Damian came home during Spring Break to spend Tuesday-Thursday with a return to Hillside on Friday.
Tuesday and Wednesday were filled with laughter, dancing, quiet moments, movie nights and popcorn.
Thursday the honeymoon was over. Like a storm forming in the distance on bright sunny day we could see it coming. We tried to out run it, we tried to shelter in place, but it came nonetheless. The black anger and the screaming winds blew from our son. He was swept away with a force so great it still takes my breath away. The emergency call was made to Hillside and 3 dedicated therapists tried to calm him, to coach him until the storm passed. They were unsuccessful and he had to return to Hillside. On Friday faced with the consequences of his actions, he fell back to self-harm, cutting jagged lines on his arms with a piece of rock.
The discharge that was in place for two weeks, now has been blown away by the storm.
Garrett and I have been quiet today, caring for our other children with false pretense and consistency. Each of us quietly torturing ourselves with questions of, “what” “why” and “how come”. Reliving each moment of the storm over and over again.
Tomorrow will come and it will be easier than yesterday, but it will be another day without our son.
We brought Damian home on Saturday morning and he stayed until Sunday afternoon. This was his second home visit since he began at Hillside.
This visit was a little easier than the first. Everyone was more relaxed and that lead to good and bad moments with Damian. He wanted us all to be as we were when he left and was angry when confronted with things that had changed.
Ella had earned a later bedtime by doing 5 weeks of extra chores (Damian, “when can I earn a later bedtime, that’s not fair?). Emma had learned how to in-line skate in the last couple of weeks (Damian, “Emma is cheating because she can go faster than me, that’s not fair!”). Noah earned the privilege of walking to a neighbors house and around the neighbor hood (Damian, why can’t I go with Noah. That’s not fair!”). Jaia had a birthday while Damian has been gone and she got a new iPod (Damian, “when can I get a new iPod, mine is broken, that’s not fair?”).
Life for our broken little man has been suspended while at Hillside. This weekend he began to face the facts that life moved on without him and it was a hard reality.
When we sat down to discuss this with him on Sunday afternoon, he fell back into the old habit of shutting down and becoming angry. We talked anyway. Calmly telling him that each day brings new challenges but we would face them together. Replying to his pleas to set up rewards for good behavior with a firm statement , “There are no rewards for doing what is expected, there are only rewards for doing more than what is expected. For now you will need to concentrate on doing what is expected.”.
He went back to Hillside angry and refused to speak with us but we stood firm.
As we drove home without our son, again, I felt numb and emotionless. The small sliver of coldness in my heart expanding ever so slightly. I have prayed everyday for Damian’s heart to open and heal for the last seven months. Tonight I have to pray for my own to do the same.
Today Damian started his 3rd medication change up since he started at Hillside. He is now taking Latuda 2 times a day and they have doubled his dosage for lamictal. They are also starting him on amantadine. He is free of the Lithium and he his more alert now and doesn’t fall asleep during the day.
He is coming home this Saturday on an overnight pass and then next week we will bring him home for a 48 hour pass during spring break. Garrett and I are both excited and terrified but honestly that is a double emotion that most parents have when their child attempts something new. And this will definitely be new for all of us.