Should......The Other "S" Word

 Last week my oldest child turned 16.

There was no party, no used car bedecked with a flouncy red bow sitting in the driveway, no begging for a new video game, paint ball with friends, or plans for homecoming. There was only me, my three younger kids, a birthday teen several hours away, and deafening silence.

I couldn't post on FB. I always post photos and sweet comments about each child's personality on their special day, but I couldn't do it. I don't often struggle with the comparison factor that drives people to quit social media to avoid the steady diet of carefully edited words and photos- but last week? I could barely touch the blue F icon on my phone to open the endless stream of daily fodder and initiate the familiar scrolling that has become part of my mindless routine.

Last week was hard. Hellish. Ugly. I'd had a phone call earlier in the week from a no-nonsense nurse at the facility where he's living who delivered news to me that literally knocked me off of my feet. I fell to the ground in sobs, aching, as her perfunctory words ravaged my heart. Supposedly he'd been in an altercation with another resident. It had become one person's word against the other. The few details I was given stole all of the breath from my body. As I struggled to draw enough oxygen into my lungs between loud sobs under the still, starry, autumn evening, she asked if I had any questions. I know her job sucked. I know hearing my hurt was difficult, and I'm quite sure she wanted nothing more than to complete the task she'd been given and hang up the phone. But it stung. I managed to laugh sarcastically through tears and tell her that I had none. "I can tell you're teary, so I'm going to let you go now. Have a nice night". <click>
 I must've looked like a character out of biblical times- wailing in the dirt, my forehead pressed into the cold ground as I rolled over into the fetal position. I'd been burning leaves before she called, and was covered in soot and ash- a fitting backdrop for the rending of my heart and spirit in lieu of my clothing.

I was broken. My precious son, who'd been making such progress, seemed to have had a big setback. I was reeling. He called moments after the nurse escaped my crying, and once he realized I was upset, made sure to tell me the incident 'never happened'. I tried to maintain hope. To entertain the possibility that the story I'd just been given by the nurse was flawed. But our difficult history, and the long list of circumstances where he'd been dishonest, or manipulative, or sneaky, washed over any ember of hope I was carrying and left only grief, loneliness, and hurt in its wake.
I tried to reassure him I was processing. But I knew my words were hollow and fell flat. I hadn't had time to process what I'd just heard, much less get myself to the place where I could encourage him in the mess. He changed the subject to his birthday- secure in the knowledge that he was telling the truth- but I couldn't follow him in the happiness; and I broke some more. His 16th birthday. A big one. The last big one before 'adulthood' in the eyes of the law. A birthday we should be celebrating, enjoying, anticipating... and I only felt robbed. Shortchanged. Angry. Alone.

The short version of the story is that he was telling the truth. It never happened. The longer version had me barely breathing through grief for days, carrying hurt and sadness around that I had no idea what to do with.
I called him on his birthday. Too broken and weary to sing loudly- which I would usually do. Guilted and shamed for my inability to rally myself in the moment for a milestone event the world tells us we should celebrate.

 A grocery store sheet cake in a conference room on Sunday in place of his much loved homemade coconut cake. A few simple gifts which he was excited about, lots of hugs, and then games in the cafeteria for a couple of hours. Enjoying ourselves, sharing some laughs and smiles, and time together- but hovering over us was the weighty cloud of our circumstance. One I'm grateful for and angry about at the same time. A circumstance few people in my life can begin to comprehend- and one I work hard to not think about much. I ached as I watched him- the small child almost gone, being replaced by a tall, muscled man who talks with his large hands, charms with his stunning blue eyes, and entertains with a keen sense of humor.

My life has become very small again. I move in and out of this space in relationship to the level of stress and grief present in my life. There are times I'm carefree and have the ability to engage with a larger group of the people I love, and who love me, and then there are times I retreat. Unable to talk or expend the energy to engage. There is nothing left in me after work, kids, life.. to give anything else to anyone.

One of the hardest parts of raising a child with a chronic illness- whether physical, mental, emotional... is the grief that is never resolved. There is no closure for anyone. There are victories and progress and surprising strides made- and then, like the 16th birthday that came and went without fanfare- there are those times where the stark reality of this life is laid bare against the vibrant, technicolor idealized life I anticipated; and I feel punched in the stomach, sent stumbling backwards, trying to steady myself again.

My counselor said what I already know. The grief comes because there are still places in me where I hold on to my idea of what 'should have been'. This is nothing new to me, and often, I'm able to embrace the difficult, painful, beautiful, rich life we have- in spite of its opposition to the life I dreamed I'd have. But sometimes, I get angry. I want to punch someone or something for denying us the 'normalcy' I long for: The mundane, typical, frustrating teenage angst so many parents wrestle with. I want to apologize to him- beg him to understand how the mental illness, the autism- none of it is his fault. Instead, I keep walking forward. Screwing up royally, falling short over and over, frustrated at myself for not being further along, then reminding myself of how far we've come. My counselor reminded me quietly through my tears last week- none of us are really living the life we thought we 'should' have. It's different for everyone, but the truth is that we don't get to leave the confines of this planet at the end of our lives without having experienced pain and disappointment. While that doesn't offer much solace to a broken mother's heart, it gives me pause. It's my choice. I can succumb to grief and shatter into a devastated shell of a woman, or I can grieve and be gentle with myself. Patient in the process. Real about the hurt and disappointment, and guarded in how I spend my time... protective of my heart and state of mind.

Should have been will kill us if we let it. Suffocating the beauty found in the what truly is. I've not yet come back to the place of joy and energy I enjoy inhabiting- but I know it will come. I've learned to not try and force it anymore. To recognize that the pain is a tool, a teacher, a refiner. Nothing is wasted, and I've no doubt this most recent dance with grief will do the work it's meant to do. In the meantime, I've pulled inward to preserve my emotional energy. If you've wondered where I've been- now you know, it's not you.. it's me. And I promise I'll rise once again, <3

Rerouting

I've started this post several times- not exactly sure how to peel off parts of myself that I often long to hold tight, yet understanding that my heart for change in this world often means allowing discomfort to lead me to share things too many keep hidden.

My oldest son has been in Hampton for almost two months now. He's at a residential treatment center to address the struggles that have plagued us for well over a decade.

I used to read a blog by a mother whose daughter had bipolar disorder. Her daughter lived almost exclusively at a residential treatment facility and will remain there long term. I remember my feelings of confusion, sadness and admittedly; judgment. I couldn't understand how a mother could 'give up' on her child in such a way and leave the raising of her to others.
Life has a funny way of bringing us face to face with our own bias. Our criticism of things we can't possibly understand often sizzles in the fires of similar circumstances later on in our journey.

The truth is that this has been the best thing that has happened to our family in terms of support and treatment. He was ready to go and did so with a positive attitude. I have told him over and over that his willingness to not only go to the program, but to engage in it wholeheartedly, has been a gift to me. I couldn't be more proud of his courage and hard work. Driving away from the building in silence for the several hour trip home, I was grieved over the stark reality of our lives, but filled with gratitude for the support.

Mental health treatment in our country is broken in every way. Millions of people languish under sub standard care, or none at all, and many more of us fight a losing battle to get the help needed for our loved ones. The disconnect between all of the players in his care has led to many misdiagnoses, a lack of support and understanding in the school environment, acute hospitalizations, dozens of medications, chaos at home, and years of hurt and distance in the family relationships. What this incredible facility is providing is a streamlined team of engaged and connected support members. He goes to school there- and his teachers are part of the team. He has a nurse, a caseworker, a counselor, an autism educator (to help him understand how he operates in the world), an art therapist, a doctor, and other support staff to encourage him and push him to be the best young man he can be. The entire team shares what they observe, recommendations and suggestions. It creates a holistic approach that addresses each part of him- mind, body and spirit.
The staff there love him, and, they love working with each other. Their passion for my son and his incredible gifts and abilities make my chest swell with pride. I am aware that many facilities don't have this incredibly wonderful attitude and atmosphere, and I'm ever grateful that our experience is proving positive.

This program is one of the longest in the country. Their success rate is sky high with patients leaving their treatment never again needing acute hospitalizations or bumping up against the law. Their expectation is that this level of treatment is the last stop on the tumultuous ride of health- and they pour everything they have into the patients there to ensure that it happens.

I go to visit and have counseling with him almost every week. The drive is hard and long- but it's a small price to pay for the healing it's bringing. His counselor is a seasoned autism expert and is adept at giving words to dynamics I have felt but couldn't address until identified. The work he is doing through his transparency and openness is bringing incredible change that is even evident on him physically. His eyes are sharp and clear- his growing, muscled body is stilled in peace and self acceptance. His voice is steady, and his ability to articulate his emotions, frustrations and needs is blowing me away. While he works there- we work at home. Undoing dynamics long etched into the structure of our family. I am digging deep into the places of fear, codependency, feelings of failure and defeat and pulling out roots of poisonous paradigms that have no place in a healthy family.

It's disappointing as a mother to come to the place where treatment of this level is necessary- the team-centric support we are getting as a family unit is what I've longed for for many years- however, it's simply not available here outside of residential care. Had he been angry with me for taking him, I may have suffocated under the weight of grief and guilt- thankfully, his eagerness to get better and feel better and do better and be the healthy man he is, has inoculated me against that wounding- and I'm left free to revel in the incredible changes our family is experiencing.

I don't know how long he will be there. While he's doing better than I dared to dream, this isn't a story of unicorns and rainbows. It's hard work for all of us. It's been almost two months now, and we all have a long way to go. It could be up to a year before he comes home again to stay. But I trust the process. I trust God. And, I'm learning to finally trust my ability. The program requires all of us to be ready for him to come home- we get day passes with him to take him out, then move on to overnight passes, then weekend passes. Easing us all back into life where we can try out the new dynamics and process through the changes with the support of the team as we learn. The education for all of us, the family counseling to address years of misunderstanding, the love and care of his team, and the positive attitude of my incredible young man have lifted my heart and soul into hope again. I can see his future now- and feel like I did when he was a chubby, wide-eyed newborn- his future is bright and the sky is the limit.