18 and Life to Go~

22 Mar 2022 2 Comments

by cindythea in Uncategorized Tags: , , , , ,

ENHANCE_NONE

” This time no one’s gonna say goodbye
I keep you in this heart of mine
This time I know it’s never over
No matter who or what I am
I’ll carry where we all began
This time that we had, I will hold forever” Criss Darren Everett

These lyrics came back to me yesterday, on my son’s 18th birthday-as he stands on the precipice of a new chapter beginning in a few months, I felt all the feels at his most recent med check appointment with his psych Dr. My son signed off on a medical release which allows his father and I the right to still be involved in his care as he moves into adulthood. It was a bittersweet moment as I sat, listening and planning my son’s future-a future where I can no longer call the shots-a future where I loosen control and see if he can fly.

I am terrified. I am terrified to let go-terrified to loosen a grip-terrified to step back, and terrified to feel. For the last 18 years a little boy has depended on me to supply so many of his needs and as he ages these instances he needs me are fewer, but are more important- they are bigger. For the past 12 years, since the summer he was 6 years old and my deepest feared suspicions were confirmed, I have lived and breathed in the midst of what is best for him-his needs and his future.

I remember clearly the moment when I knew something was amiss-I knew that my son was hurting in ways that I could not reach. Something had gone terribly wrong at his summer care environment-so wrong that I had to file a report at the behest of mandatory reporters-so wrong that, to this day, he cannot remember, and that’s ok. At the height of the most turmoil, he snapped. His anger, hurt, and rage spewed forth in a temper tantrum of mammoth proportions. At one point I peeled him off the wall as he climbed up to tear down the blinds in his room and wrapped him in my arms. Stumbling backward toward his bed, I held him as he growled at me, hit me as hard as he could, and screamed obscenities. As I held him, with his back against my chest, he pulled his head forward, reared back, and threw his head backward, square in my face. He heard the thud and saw the blood from my nose on my arm and he laughed a low, guttural sneer of derision. I wrapped my arms tighter around him, rocked him back and forth, and sang quietly to him. His body was so rigid, hot, and sweat covered-and slowly relaxed into my arms. Mocking gave way to soft sobs as the energy drained from him-I knew. I knew my son needed help that I could not provide.

Weeks later the long road to tests, appointments, and questions began. It culminated in the moment that my baby boy, 6 years old, took off after his father because the DVR had cut off part of a program without him being able to watch the ending-moments later he stood in my bathroom, laughing over a container of pudding-and a spoon.

I loaded him in a borrowed jeep-braved some treacherous weather and walked him into the admittance floor of Avera Behavioral. A week later, a triple diagnosis and then some was reached-the ADHD was obvious-the cycling mood and TIC disorder co-morphed with high generalized anxiety added to an emotional cocktail of crap. This is the first time I have ever typed that it was a complete cocktail of crap–it sucked- it still does. I remember that week so distinctly-I remember him calling me in tears because his floor was watching Old Yeller and he couldn’t take the heartache.

My baby, my first grader, embarked on a med journey that was a roller coaster of stops and starts-of iep meetings and accommodations, of countless emotional outbursts, and dreams dashed. He had wanted, from Day 1, to serve in the Air Force and fly the planes. It was all he talked about-his nearly savant like memory could (and still can) recall every detail of every fighter plane, book, documentary, and article and he had to let that go-and I had to watch him do so.

I watched as classmates called him every name in the book-listened to his anguish as locker partners kicked his books down the hall and laughed as he crawled to pick them up- heard others tell him he was unwanted-weird, that he didn’t belong-and that the world and his school would be a better place if he were not in it. The emotions rose to the surface so many times-and there were instances when I intercepted veiled and obvious threats which meant additional trips to his counselor. No one knew the nights I sat outside his door-listening to the sound of silence, no one knew how many times I snuck into his room to check to make sure he was still breathing-making sure that none of the tears that stung just behind my eyes landed on his pillow or his cheek as I leaned down to hold him every hour. No one knew the prayers I uttered.

And, no one knew the rage that I fostered in my own heart-rage fueled by guilt, fear, and regret. I wanted my healthy, vibrant, engaging little boy that had captured my heart the moment he locked eyes on mine, seconds after he was born. And, there were times that my rage got the better of me-when words spewed forth like so much verbal vomit unleashing the venom at these diseases and its impacts on his life. I wanted so much more for him. I still do.

There were so so so many times that I didn’t know if we would get him through-I didn’t know if the meds, the counseling sessions, the outpourings of love would be enough. I didn’t know as we sat through meeting after meeting, whether the grades would be there-if the scores would reflect his ability-if college was even a possibility.

And yet–he did it! 18 and yesterday on his birthday he sat opposite his psych Dr., the same one who has been with us since the beginning-called him on some of his crap and held him accountable. He placed the ball in my son’s court and challenged him to get his head out of his ass. He’s gone to Prom-qualified for Nationals in Speech events multiple times, is the go-to percussionist on the school’s drum set. Now I watch as he drives back into town to pick up his girlfriend, clad in outfits that he chooses complete with a black fedora and a smile. I marveled at his poise when, on his birthday, he toured the university he will attend in a few short months and met the highest leadership people on campus. He was confident, articulate, engaging, and real-he was my Bug. I choked back tears most of the day, observing my baby boy walk into manhood right before my eyes as he caught a glimpse of a future awaiting him. All of this exists as I gaze at above picture-taken just before we went in for his last and first med check appointment-his last boy and his first adult visit simultaneously. And, I am proud of my son.

And yet, I continue to choke back sobs as I bat down the fear that eats at my guts-fear that I have not done enough, that I have not prepared him for the next chapter, that I have not filled his toolbox with enough tools to do the job. I choke back regret for words and fights where I could have damaged his psyche in ways from which he would not recover-I choke back my own impatience-my loss of dreams for him-for the anger at having to accept my baby boy’s condition as lifelong- he will always have to take meds-he will always battle the demons, the statics, the interferences, and the lapses in observation and emotion. I can’t take any of it away-and that hurts something terrible. I want to give him the world and I can’t. I want to restore to him the dreams he’s put away, to rewind the clock and give him the friendships, party invitations, and connections that could have been his-but I can’t. And accepting that is so so hard-and relinquishing the reigns to him is doubly difficult. But, I have to have faith in this wonder boy of mine-and he is, wonder-filled.

I have to have faith that he is in the right place at the right time doing the next right thing. I have to believe in the work we’ve done and his own tenacity to carry him through to the next chapter. I have to let go-and that, well, those words are the toughest ones to write-and to see on the screen as I swipe at the tears I don’t want to fall. Luna, the cat, just heard me sniff and hopped down off her perch to stand on the couch next to me and trill- I think she knows. Because in the midst of all this wonder and goodness-I feel alone-and small and scared and hopeful and confused and a little like a piece of me is disappearing and I don’t know what to do. I feel old and a little girl all at once with no real answers to the pile of questions on my heart.

As I look at the lyrics above, my son, his smile, his heart, his spirit fills my mind-I know that I will carry these experiences for a lifetime and that they have shaped the woman I am today in countless ways- Never in my dreams did I think I would parent a special needs child-one so gifted and conflicted at the same time-Never did I think I could do it- but here we are-

With his 18 and LIFE to go…..(the journey continues)

With all the HYPE…

30 Dec 2012 Leave a comment

by cindythea in Uncategorized Tags: , , , , , , ,

The Conneticut tragedy is still not far from my mind, I have read the account in the book, Columbine, and the area of mental health fascinates me.  If I could ever pass statistics, I would consider another Master’s in Psych or a focus in mental health for a PhD.  It’s that math thing that trips me up every time.  ANYWAY!!!

This day of all days has special significance for me.  It is  day which will be forever etched in the recesses of my mind, sometimes I take it out, look at it and feel immense guilt.  Other times I look at it from afar and wonder how in the world I made it through that time, still others I am thankful to observe from a more detached place where we were then and where we are now- 2 years later.

Lots of people are talking about the impacts of mental health and the need for more research and conversation surrounding these issues.  I would agree, but I would offer a word of caution as well.  Having a mental illness does not pre-determine an individual to violent behavior anymore than a person with heart disease or diabetes does.  It is something that needs to be recognized, honored, and treated.  Note that I included the word honored, here.  Just as we honor people with any disability or injury…or scratch that..We honor people simply because that is what they are, PEOPLE.  We honor one another  because it is part of human nature–because we MUST.

2 years ago I admitted my son to a psych floor at a local mental hospital.  It was the hardest moment of my life and I have written about it before–the sound of the locked door shutting….the feel of my keys in my hand that I could not use to save him.  I worked there at the time as a Chaplain and there was nothing I could do to rescue him, it was not my place to rescue him and I still can’t.

Many will continue to talk in the coming weeks and months about mental illness, touting solutions, pretending that they have the “answers” to the situation.  There is not one solution…and the problem of mental illness is such a personal and humbling realization.  Simply throwing money at it will not solve, banning individuals from certain rights with mental illness will not solve it, there is no blanket solution.  The sooner we understand that, the better strides we will be making in understanding and equipping one another to honor people with them.

confession:  my son has 2 mental diagnosis.  I also have propensity for a couple of them.  I have some PTSD from situations in my past, I possess a tendency toward anxiety and dysthymia as well as some Season Affective Disorder, I may also dabble in the ADHD realm.  All of these are interrelated and are linked to issues that go beyond what people think could or should be a blanket response.  Simply throwing medication at any of them will not solve the problem on its own.  It is a day in, day out understanding of who I am, who my son is and responding with grace and honor to who we are.  I am old enough to know and can tell when situations may be getting out of hand, and there are times when my medication has not been what it should have been.  There are times that I tried to go off my meds only to realize that I feel better, and am a better Me with my medication.  Thankfully I have had insurance the whole time, which has afforded me the chance to stay on meds.  But, throwing one medication or a cocktail approach does not warrant the only mode of treatment.

Do you know what it is like to live in what feels like a hole that continues to drop lower and lower, the bottom of which you cannot see or feel, but you know is there?  The hole sometimes closes in, making you feel suffocated and larger than life at the same time.  Sometimes it is so engulfing you think it may swallow you whole and take over your whole existence–you feel small and insignificant–and sometimes like the backpack you are carrying is so heavy you cannot take another step forward.  The weight of its contents so overwhelming it causes you to collapse under it right where you are–stuck.

There are moments of wonder and awe, when things are leveled and you feel good.  There are also moments of deep despair, confusion and frustration.  I have watched my son go from being a happy camper to someone who is so filled with anger that I do not know what to do.  I have witnessed him wake in the morning and go tearing through the house like the Energizer Bunny on  crack, and I am exhausted by it.  Do not get me wrong, he is a wonderful and loving boy…but he also drives me to tears in the wee hours of the night, when I lie awake and worry about his future.  Note that I have anxiety, so the guilt and worry factor is high here.

I worry about his classwork, his organization, his social standing in school.  I worry about how he feels about himself.  You see, he has not had a past of abuse or neglect, but he will claim that he hates himself and his life.  There is no reason for his lack of confidence in himself…he is loved, cherished, and encouraged to be the individual he is.  It is something in the brain that screws with his perceptions and the world around him. There is nothing wrong with him as a person and he is not predestined to a life of crime or a danger to society.  The most damage he will do will be to himself, in his own mind, to his own body, or to the 1 other person whom he trusts more than life itself….mom.

Each day is a lesson in learning about my son, the external stimuli, and his reaction to them.  I have to juggle his BIG personality and intelligence with tolerance to what his mind and body say he needs.  I also have another son who does not exhibit the same personality or mental illnesses…but is just as intelligent and capable.  I have to balance interacting with both of my sons, knowing that they are both individuals and the way I parent one is not the way I can parent the other.  It is a daily exercise in patience, which I lack in major degrees.

It takes a toll on every aspect of family life.  It strains marriages and consumes my thoughts, and I am guilty to paying more attention to my children than to myself and relationships that I have in my life.  It confuses grandparents who don’t see the effects of it everyday…who wonder why the need for meds and their desire to solve the problem motivates them to search for answers that are not readily available.  In their quest to love on their grandkids, they comment and grasp at straws…and those of us who deal with it 24-7 sit and watch and….hurt.  It may claim my marriage, it may not…..it remains to be seen how we weather the impact.  Statistics are not in favor for families who deal with any child with any level of disability.  It takes an immense amount of effort and the pressure is extreme.  I do not say that for a sympathy vote, I say  that as fact.

What is really needed is support and encouragement.  I want to   know as a person who takes medicine for a mental illness, that I am not alone.  I want to know that I have worth and importance as much as anyone else.  My affliction may not require I wear a brace, take my blood sugar, or spend my days in a wheel chair, but it is something which I must pay attention to each day.  I want to know that there are people out there who understand what it means to deal with it on their own, personally.  I want to know that there are people I can talk to who have children who wrestle with this…I want to know that I am not a bad parent with people waiting to sit in judgment of me and my family.  I want to breathe…large and long. I want to feel empowered and the know that the “it takes a village” idea actually works.  I want to use my knowledge to help others and to glean from them when I need it. Above all, my son and I want to feel NOT ALONE.

I think that is all I have at this time…my sons are now fighting over their individual bags of reese’s pieces and requesting I play Gangnam Style for the billionth time.  Excuse me while I go tear my hair out and run screaming from the building….aaaaahhhhh

Shalom dear ones,

cahl.

 

 

Do you See what I SEE?

18 Aug 2012 1 Comment

by cindythea in Uncategorized Tags: , , , , , , , , , , , , , ,

It begins at 6:30 am, 7:00 am-if I am lucky.  Up from his spot on the floor, because neither of my children will sleep in their own rooms, my oldest will jump up  and run tearing through the house, looking for the next sleeping victim to rip from their slumber.  Because the youngest is a nightowl, I am lucky to see sleep by midnight…Weary and bleary eyed, I listen to my oldest son scream at planes he has made the night before and turn the TV up louder than snoring can cover.  I sigh, knowing another day has begun.

I love my sons with all that I am.  I would do anything for them and will advocate and fight for and with them my whole life.  There is nothing that I would not do to make sure they grow to the men I pray they become.  I lay awake at night and wonder what more I can do, what more I can supply for both of them.  Often, I am left still wondering and hoping I am doing the right thing….whatever that means.

I watch and I listen.  I watch what I remember as my oldest was a baby  and he fussed and fussed, who would not let me put him down–who would not let me out of his sight the whole first year.  Who continued to grow into a toddler, with a verbal expression and physical control that amazed most people.  He was shooting baskets at 2 1/2 and speaking in full sentences.  I was astounded, and already tired.  Already full of energy, able to feel his way through situations, and with an intelligence that was evident, he hurled toward toddlerhood as I brought my youngest into the world.

The gloves were off, now I had an angry 3 year old coupled with a newborn I was nursing.  I was convinced I was gonna do this right!!  no matter what it cost me in sanity.  What is right, anyway?  My oldest was livid with me for daring to bring another into the family–so was my dog.  We had to let her go when I found her using my pillow on my bed as her personal toilet.–that’s another story.

My oldest hated that child and hated/loved me more fiercely than I had seen him.  Almost exclusively attached to me, I worked  hard for him to establish his independence, which he did–and he flourished.  Even bigger gains in intelligence and understanding took place, but the energy and activity level sky-rocketed to highs that saw him clawing at the window blinds and banging his head on the wall in anger and frustration.  THIS was my first born, the one who had been with me the longest…what had I done to him?  What had I not done for him?

I remember a day when he becme so angry at my youngest that he tried to attack him with a metal baseball bat….I stepped in between and took the bat swat from my son instead…I threw the bat away as soon as I was calm enough to gather my thoughts.  That day saw my son ripping curtains in his room and clawing at the walls….I still do not know what set him off, I don’t think I ever will.

Onto my lap I pulled him and set him so his back was against my chest and rocked him back and forth like I did when he was tiny….I whispered, I shushed, I sang, he was enraged.  He threw his head against my nose, heard it crack, and he laughed.  I fought back tears and forged on…I had to save my son.  That was the longest afternoon I remember, there have been others, but none when I have been so scared.  I will never forget that, yet I wonder, what did that moment say and do to my son?  I am not sure I will ever know.

Fast forward to school and 3 solid years of worry and fear.  Test after test after IEP meetings….NO!!! he is not special ed, not able to comply or function.  He is my son and he has a name.  PLEASE!  Won’t someone see the constant chewing of fingernails and any other non-food item….please someone advise me how to handle a passionate and strong young man full of energy that he appears like a tornado the moment he wakes up and sleeps only when his nighttime med allows his body to rest.

Someone please watch his face when he is frustrated with the fact he will never be perfect and he doesa not know how to reconcile that.  Tell me what I am supposed to say to my oldest who asks me to find a gun and kill him, or continue to bang his head against the all–with his fists, or whatever is handy.  Someone please tell me it is not because I am adopted or that I had medication when I carried him or that I have genetically passed something on to him…I know all of us want someone or something to blame when there are no answers, but someone please tell me this will resolve.

I continue to watch, to monitor.  My oldest would still like to “take out” his brother.  He has said horrendous things to me, has destroyed much of the furniture and his toys, and is still attached to me like none other.  He is also sweet and understanding of global pain and heartache.  He knows about prayer and God and creation and possesses a deep spirituality which he questions with logic and inquiry.  He is smarter than any person I know at that age, except maybe my older brother….his uncle.  He is compassionate to a fault, yet will turn around and without batting an eye will choke my youngest and throw him to the ground.  There are times I cannot get there in time….when my youngest will take matters into his own hands.  Sometimes I have to let it happen, sometimes I don’t know what to do.

I am not sure what I am seeking…maybe nothing.  Maybe I am just a tired old mom, who does not want to feel so old and tired at 37.  Maybe I just want breathing room or the chance to feel like it is not my fault or that I am walking on egg shells all the time.  Maybe I want to experience my son without a bated breath of what will happen next, maybe I just want to breathe—AND!  to use the bathroom all by myself 😉

The constant noise, onslaught of questions and need and emotion from this wonder of my son–it takes a toll.  I know there are other parents out there dealing with this….I know they are my age and younger.  If someone is out there reading this who is older–please listen and see!  Sometimes when they are telling you, I need a break, they are not making casual conversation.  There are times when the pressure and exhaustion of it all gets to be too much, yet most of us (women especially) will never say when it’s too much.  They will put their head down, swallow the fatigue and guilt, and march bravely on to the next day.  We will walk out to get the mail or take out the garbage and swipe at tears coursing down our cheeks, we will rejoice in silence of a grocery store trip alone, or blare the music on full blast and sing out frustration on the way home….BECAUSE we can and we HAVE to!  We look for excuses to extend a trip alone a bit longer, when sitting with people who are older and kind and wise mean more than we can articulate.  When the idea of sleeping the day away sounds like heaven on earth.

Please, See what I see..hear what I hear…Please?

shalom,

cahl.