What Happens When my Child/Teen is Admitted into Acute Psychiatric Care? (Part 2 of 3)

Admitting your child to acute psychiatric hospitalization can be traumatic for both of you. Part of the difficulty is due to the fact that there is so much mystery and unknown surrounding the experience. My son has had at least 10 hospitalizations in his life to date, two of my other children have had one hospitalization, and we have experience with multiple facilities. I wanted to share some of our experiences and answer some of the questions I'm most asked.

In VA (where we currently live) every hospitalization will come out of the emergency room after a medical exam where the doctor decides hospitalization is necessary. As I mentioned in my previous post about what to expect during an ER visit, I shared that this process can be painfully long as you wait for a bed to open up in a (hopefully) nearby facility. My oldest son has been hospitalized in the facility closest to us many times, but my other two children both had to go to different cities as they were too young for that particular hospital. Be prepared to have your child in a facility that is not local to you.

The Admission Process:

Usually your loved one will be transferred to the psychiatric hospital or behavioral health facility in an ambulance. I have always followed behind to get them settled. Once you arrive, you will go through a lot of paperwork and your child will be asked again if they have thoughts of hurting themselves or others, and if so, if they have created a plan. By this point in the process both of us are  always tired, and these questions and the stack of paperwork can be wearying. Many times the admission process happens in the middle of the night due to the long hours already spent in the ER. It's easy to feel overwhelmed, doubt yourself when you realize they are now calm (which is very common at this point in the process) and you just want to sleep and/or eat.

Your child will have to remove any article of clothing that could be a potential threat- such as shoelaces, belts, hoodie draw strings, sometimes even body piercings. I have learned to take along a bag if I suspect hospitalization will be the result of our ER visit- and include sweatpants, pajamas, a book or two, cotton shirts, socks, underwear. Every facility is different, but most will allow some personal items including a blanket or pillow, sketch books, stuffed animal, clothing, even family photos. I have learned having things from home can be very comforting to him while he's there. The nurse will take the items from you to ensure you haven't unknowingly (or, sadly, some parents knowingly) brought anything restricted by the facility. If we don't arrive with a bag, I bring items back the next day.

Inside the Ward:

You may be allowed to go into the ward/unit (these words can be used interchangeably) to see where they will be staying and sleeping, or, you may not. Don't be alarmed if you aren't given the opportunity to see the rooms- it is often for the safety and privacy of the other patients. Every room we've experienced share similar traits: sparse, often just a bed (or two) and night stand and desk. The bathroom mirrors are unbreakable and often there is very little wall color or decor. The first time I saw this, my son wasn't yet four and it was a shock to me, but as I've become a veteran to the process, I understand the practicality and safety, and can appreciate the intentional design of a non-stimulating environment. Often our children are so overwhelmed by their emotions, hormones, misfiring neurons, that the lack of clutter and visual stimuli can be very calming, even as it looks bleak to us.
There is usually a 'day room' with TV, nurses' desk, tables, chairs, and couches. Patients can gather to talk, play games, do schoolwork, make simple crafts, or watch TV. There may be a cafeteria. We are incredibly spoiled in this area as the hospital Samuel has stayed most in has one where I can visit and buy lunch or dinner for myself that is actually quite tasty. It helps both of us to have that time together and I'm grateful for it.

Your child will be in what's called a locked unit.  It was jarring to me to have all of the doors of the halls and units locked, and initially it can feel a bit like prison, especially when you hear the slam of the door and the lock engage behind you while you walk away from your child. Remind yourself that this is for everyone's safety. Most units are co-ed and often they will have a same sex roommate. They will be assigned a case worker and during their stay they will be evaluated by the doctor, given meds by a nurse, (if needed) and sometimes they'll spend time with a caseworker whose job is to create a skeleton treatment plan for post-discharge.

Leaving your child to go home can be very difficult. You may feel all sorts of emotions; from relief to sadness, grief, shame, guilt, anger. Don't try to analyze your emotions at that moment; let them be what they are. Your child will likely have many emotions too- and it can make it exponentially difficult to leave if they are angry at you for admitting them, or if they are scared or anxious.
Try to keep the knowledge that they are safe in the front of your thoughts. Both of you need to try and get some rest.

You will be given a specific pin number to use when you call to speak to your loved one. This is again, for privacy. You'll be told about visiting hours and any additional information about the facility to allow you to visit, communicate, or check in on your child. You may be called in for a visit with the case worker during their stay, or you may have emails and phone calls. The lack of communication can feel very strange when you don't realize this is the norm. The real work will come outside of the facility. This time is to reset, ensure safety, and work to get outside resource and support in place.

What I Wish I'd Known:

• If you don't have a diagnosis already, you aren't likely to get one- even if they write down information/symptoms/and potential diagnoses on the discharge paperwork. 
• If you do have a diagnosis before the hospitalization, you may see something completely different on the paperwork. Don't put much stock in this. There will be no testing, no critical observation and no deep dive into their struggles during their stay in effort to diagnose.
• Acute hospitalization is used for stabilization and safety. Often there isn't much more. Your child may be offered some therapy- both alone and with a group; however, many times these sessions are not required. It's possible your child could stay and not once have any level of therapy.

I was devastated with my son's first hospitalization and having to leave him behind, but I was hoping for answers. At the time of admission, we'd had a couple of hellish years without any explanation and I was desperate to kick start whatever meds, therapy, or help that might save us. Imagine my shock and disappointment when he was discharged and the nurse told me they hadn't seen any of the behaviors I'd reported. This is also a huge possibility. You may have left behind a raging, emotional, anxious, insomniac and return only to be told they've been calm, sleeping well and respectful. The structure of the ward can be very relieving to kids who have been stuck in an emotional meltdown, and while it's hard not to be validated by the staff's direct observation of the symptoms, know that this time away has been a rest for their brain.

There is so much more I could write, but this is incredibly long as it is. We'll come back to this topic again and cover more, but for now, this helps to give a good generalized look at what to expect. Information is power and can help both of you to combat anxiety should you find yourself in this situation. That's my goal: help demystify the process and give you more control.

What Happens When My Child/Teen Goes to the ER for Psychiatric Care? (Post 1 of 3)

I am part of a private Facebook group for parents of children and teens who have bipolar or other mood disorders. Many caregivers post a frantic cry for support when their child goes into psychiatric hospitalization. I've also received emails, texts, and private messages from friends and friends of friends asking what to expect or looking for reassurance. I've decided to create a series of three blog posts covering some of the most asked questions and offering information to help educate and dispel some of the mystery.
The three posts will cover what to expect when your child/teen is in the emergency room, what acute/short term hospitalization looks like, and our experience with long term/residential treatment. Please share these posts with anyone who can use them!

What To Expect When Your Child or Teen Winds Up in the Emergency Room For Psychiatric Care:

You've found yourself at the ER with your child seeking psychiatric intervention. There are many ways this can happen: Your child is out of control, or has what the system calls "suicidal ideation", or is self harming, seems delusional; the list is endless. They may arrive by ambulance, in a police car, or under police escort, or simply in your personal vehicle. We have been to the ER many times and have arrived in my car, in my car with police escort, and in an ambulance.

Here is what you need to know:

First- don't forget to breathe. I'm very serious. I know that it's scary, and unknown, and heartbreaking to find yourself in this position, but you have to dig deep and stay calm. Your child needs you more than ever and you will need to be able to rationally answer questions, give accurate history, and most likely, spend a lot of time with your child just waiting. Staying calm might be the most difficult thing you do during this experience, especially if you came to the ER due to any violence or destructive behavior directed at you or your family. Anger is the natural response to that, and yet, for the well being of all of you, you must find a way to momentarily compartmentalize those emotions and be a calm presence for your child.

Be prepared to wait. And then wait some more. This can be an incredibly frustrating part of the process. Many hospitals have specific rooms for mental health patients, and will only utilize those rooms unless it is a life or death situation. With the continually growing mental health crisis in our country, this often means that when you arrive, the rooms are already occupied- leaving you and your child in the waiting room- many times for hours on end. Our longest stay was 27 hours from start to finish- but part of that was waiting on a bed to open up in an acute psychiatric hospital (more on that in the next post).

When you arrive and check in, you will register, give proof of insurance if you have it, then you will wait for triage. After triage (where a nurse asks you why you've come and checks your child's vitals) you will probably be sent  back to the waiting room. Your child may be called again for a blood draw, and if so, once again, you most likely will be sent back to the waiting room. Once called into a room you may notice it's different than other rooms in the ER. It may even be in an area that is closed off from the other rooms. Many rooms used for mental health patients have been prepped- often stripped of any extra instruments or objects that you'd see in other rooms to protect patients from potentially hurting themselves or others.

You can expect to see a nurse, a social worker or mental health worker, hospital registrar, and doctor at a minimum. Each time, your child will be asked if they are having thoughts of harming themselves, and if so, if there is a plan. This is tedious. It feels traumatic to have to answer that over and over, or watch your child have to repeatedly answer those questions. Just remind yourself it's part of protocol. There may be police presence. At our local hospital, there is an officer who sits outside of the mental health rooms. This is again, preventative and for protection, but I'll admit, it can make the process feel further stigmatized and removed from 'normal'.
Your child will be under a strict one on one instruction- meaning, they won't be allowed to be left alone. You will have to stay with them the entire time, and they will have to ask to use the restroom. If your child doesn't want you with them (which happens, and you will have to find a way to stand up under the weight of that pain somehow knowing they aren't well in that moment) then they will have a nurse with them constantly. If they are overly agitated or anxious, your child may be offered something to help calm them.

Prepare yourself to know there won't be a diagnosis in the ER. There will be no 'problem solved' or magic bullet. It can feel anticlimactic after the chaos that sent you there. It can be exhausting in every way, and you will likely experience a myriad of emotions. If you know some of this ahead of time, it can help you adjust your expectations so you don't wind up feeling discouraged.

Generally the goal is to create a plan going forward in order to discharge your child. This may be for your child to return home with instructions to follow up with a psychiatrist. Or, it may be that the next step is acute hospitalization at a mental health facility. In the state of VA where I live, you are no longer allowed to self-admit. You must have a medical clearance first- meaning you and your child may know that he/she wants and needs hospitalization, but you must still go through the red tape of the ER visit to justify it. If hospitalization is the next step, you will be waiting again. Hospitals are packed full and many times you are stuck waiting for a bed to open up at a facility. Often those facilities aren't local to you. The younger your child, the fewer options there are, which can mean a longer wait and possibly a facility that is a longer distance from your home. In our state if you are stuck in the ER waiting for more than 24 hours for a bed to become available, they usually admit your child to the hospital while you wait- putting you in limbo until there is space.
While this is frustrating, and shines a spotlight on the scale of psychiatric care needs, it is normal. Discouraging, yes. But sadly, normal. Most of the time a trip to the ER is a marathon, not a sprint. Try to relax if you can. I've told my son jokes, showed him vines on my phone, watched him try to sleep, played music, and calmed him when his anxiety from the wait overtook him.

The good stuff: Remember your child is in a safe place during the visit. That may be the only consolation for you in the moment, but don't discount it. Breathe it in deeply. If this is your first trip to the ER for this level of care, you are now in a good position to continue to advocate for your child in other arenas; school, counseling, testing, possibly ABA therapy or OT (for children with Autism or sensory issues), the option of getting an advocate or case worker; you have now reached a level of need that makes it obvious how desperately you need a support team. Take advantage of this reality and ask as many questions about available resources as you need to before you are discharged.

Finally: I know you feel utterly alone. You may feel as though you've failed somehow. This is a normal reaction, but it's not true. Many of us have been through this with our children- you don't know only because we aren't posting pics of them in the hospital bed on Facebook and Instagram the way parents of physically ill children often do. We're hidden in plain sight- but trust me; you are not alone. Also, you have no obligation to share information with anyone. You don't owe anyone an explanation, and you don't have to try and defend your choice (or, forced action if others were involved). As hard as it may be, find a way to stay calm and set boundaries. Privacy and space is rightfully yours and you are permitted to take all the time you need to decide what (if anything) you desire to share with anyone other than those intimately involved. You are going to get through this- and you, sweet parent or caregiver- are an amazing and loving person who is doing an incredibly difficult and compassionate thing. Much love!

Fighting Through Crazy

When I was in my late teens I watched the movie Schindler's List. It's a little over 3 hours long, but it took me almost 9 hours to get through it. I could only digest a chunk of it at a time because the overwhelming emotion and grief prohibited my ability to watch it straight through.
I had no personal understanding of the pain and suffering the Nazi's inflicted on others, I had no place to pull from to begin to comprehend the gravity of evil that devoured all but a remnant of a people hated solely for existing; and yet my soul broke as I watched the story unfold, and my heart ached to know the telling was of people's lives and not the dramatization of ones imagination.

I started a book last night called Crazy, by Pete Earley. I read the first page of the introduction and had to put it down. I couldn't catch my breath and my entire body went cold. It was a surreal feeling to read something written by another parent that I felt I could have penned myself. I've looked in books for years to find myself there, the sometimes hard to explain experiences and emotions I live as the mother of a child with mental illness. Our stories aren't the same- his son didn't have bipolar disorder until late in his college career- as is common we've come to learn- but his emotional trauma at watching his son suffer, and the ridiculous fight for health care was identical to mine. Usually, I'm a very fast reader. I devour books quickly and my ability to absorb what is being shared is fairly strong- but this book is forcing me to consume it in small bites. I'm both relieved and angry. I'm grateful for his candor, and and yet it sickens me that there are so many of us fighting like hell to get what our family members need only to be sent away, under serviced, dismissed, or forced to wait for something bad to happen before intervention occurs.

He titled his book Crazy not as a descriptive of his son, but as a statement of the 'search through America's mental health madness'. In a country where so much of our health care is reactive instead of preventative, it's no surprise that the mental health system is the same, but it never fails to shock and sicken me to be told to my face that 'there is nothing we can do until something bad happens'. I've sat in countless doctor's offices, ER examining rooms, at desks of program directors, counselors, psychiatrists, teachers, begging for help, support, something that would keep him and the rest of us safe- and give him a chance at the life he deserves. They have all told me the same thing that Pete Earley was told- until he does something big to hurt himself or others, there just isn't much that we can do. 
This is insanity. This is the life that those of us caring for people with mental illness have to navigate daily. I wish i could say that in my reading I'm finding respite and encouragement, but all I'm feeling is understanding, grief, and anger. It continues to fuel my fight for my son's life- and reminds me that I'm not alone, but it also disgusts me that so many of us feel as though we're fighting in vain to protect our children and allow their brains to be treated with as much dignity and compassion as they'd receive if they had a cancer diagnosis.
The truth is, we're lucky. I have fought long and hard to get my son the treatment he's needed and deserved and it's been a long, painful, expensive battle- but after residential treatment, where he was treated holistically, treated with love and compassion, and chose to dig in and participate, he's doing really well- better than he's ever done in his almost 17 years of life- but the fear lingers. He's manic right now. His sleeping schedule is off, and he isn't sleeping much at all. He's up most of the night, eating, watching videos, roaming through the house, playing his guitar, laughing loudly at funny things he finds on the internet- and I lie awake in bed a floor above him- grateful he's safe, relieved he's happy and here at home with me, but acutely aware of the fact that bipolar is a disease of sharp ups and downs- swallowing the anxiety that rises in my throat at the knowledge that we're at the start of autumn, the time of year he typically crashes into depression- depression that rots his good thoughts, causes him to either withdraw or fling painfully poisonous words my direction.
He's brilliant- as many people with mental illnesses are- and just like every other parent- I simply want him to have the best life he can; one where he's safe, healthy, doing something he does well and enjoys.

Depression that often results in holes in the wall, broken things, fits of rage, and days of sleeping. I prefer the mania to the depression, but even that doesn't mean health or stability. His brain is tired from the continual onslaught of thoughts and information rushing through it. He exhausts me with the flight of thoughts, and level of energy, but also makes me laugh with his crazy sharp wit and goofy antics.

I'm grateful I found the book nestled deep inside of a shelf in a used book store- it's a bizarre feeling to find myself in the pages, and I'm not sure I would have been able to read it just a few years back. I'm thankful other people are willing to pull back the curtain of their lives and expose places that most of us want to keep hidden- if only so that people like myself can nod in agreement whispering 'us too'. That's what drives me to keep sharing parts of our journey- the continual hope that someone else will find us here and link hands with ours as we fight to stand upright in violent waters.

If you have someone in your life who struggles with bipolar, or who loves someone with the disease- I recommend the book wholeheartedly. Together we must keep using our voices against the insanity of the system, determined to make some shred of sense out of the crazy making battle.

Wanna Bet? Try me.

Last week was difficult for me.

I had a meeting with a board of people who work together to determine if Samuel needs certain kinds of support, how much of it he needs, and how much the county is willing to cover financially. Caring for kids with chronic illness is beyond expensive. Whether physical or mental; the appointments, therapies, medications, tests, caseworkers, hospital stays, specialists, blood draws, etc. all cost money. We have insurance, but the co-pays for all of this rack up quickly. One of the things I didn't know until the school system shared it with me was the assistance of the community services board and/or department of social services. I'd thought DSS was only in existence to work with families who had been flagged by child protective services- I had no idea that they did other things. Mothering a special needs child requires so much; there are countless things to tend to in order to create stability and ongoing health. When searching for support,"You don't know what you don't know", and for many years I've muddled through trying to find the place of support and help that would actually do something for us. But, how and where can you ask for help when you don't know what kind of help is available to you? That problem is one of the huge reasons I am so passionate about sharing our story. There is no need for families to have to reinvent the wheel over and over to get to the sweet spot of support and health and stability.

Anyhow! I had the meeting with the board who I've been working with for the past 3 years. It consists of multiple representatives from several community entities: someone representing DSS, someone representing the juvenile justice system, one from the county school board, a school transition specialist, someone from parent services, the community services board, and sometimes a few others. I also have my caseworker and our in home therapist's supervisor with me. We meet on average, every three months, to discuss how he's doing, what, if anything needs to be changed, and what the plans are going forward. They were the support system that helped me get him into the residential center which has changed our lives. The meetings are always a bit nerve wracking- it's never fun to discuss difficulties and struggles with people who don't know you outside of this one dimension. However, I've become more comfortable with them over the years, and they truly do care about Samuel and our family. The meeting went as usual. The caseworker gave her update, I gave mine, the therapist's supervisor shared hers too. The board asks hard questions and then discusses what needs to be changed to best support us going forward. After suggesting we increase our weekly in home therapy for him, they turned the conversation to concerns for his future.
He will be 17 this year. Which is only one year away from 'adulthood', which is one year away from losing a lot of the support that is available to minors. The board was concerned about his ability to get/hold a job; live on his own, continue to take his meds properly... and on and on. I could feel my head swimming. I've been more aware recently that he is heading towards manhood, and I've wondered what it might look like for him, but as they talked around me about bringing in disabled adult services, and trying to get him job training so that he could have the best shot in spite of his disability, I was numb. Every time they spoke the word disabled or disability, my heart stopped. I guess in reality, and on paper, he has a disability, and I'm more aware than anyone of how hard he works to live in a world where he doesn't quite fit and doesn't always understand- but I've never thought of him as a disabled person. His dreams for his future aren't always realistic, but I've always chalked that up to the dreams of all kids- sometimes seemingly far fetched, but usually settling into something more realistic as they grow and mature.
 I signed the paper to get a referral for the department for disabled adults, and walked out of the building to the parking lot with my caseworker. We talked a bit and she asked about Tucker too. (She's also the caseworker for him). He's going to middle school next year and I had my meeting with the school earlier this week to go over his special education plan to get it ready for the transition. I've been concerned that it's going to be difficult for him - his autism creates anxieties and quirks that can be incompatible with the highly transitional style of middle school classes. I've put multiple things into place for him that will help support him as he transitions; from working in a small group that will focus on what to expect, to getting him a private tour and access to meeting his teachers alone without the swarm of other kids on orientation night, to signing him up for a summer program at the new school that is solely focused on preparing kids like himself for the change. But as I stood there in the lot, my caseworker told me she was very concerned about his transition and just knew he was going to have a difficult time.

It was more than I could handle. During the conversation I'd held it together, and she wasn't saying anything I hadn't already thought on my own- but as I got into my truck and headed home, it nagged at me. Over the next few days it really bothered me greatly. I've given my life to try and stabilize and provide the best chance for my kids to lead as normal of a life as possible- and while I'm hyper aware that they have issues that can bring challenges, I've also always encouraged them in their talents and skills reminding them of all of the geniuses, world changers, artists, out of the box thinkers who are different. Being reminded by a group of people of how incredibly challenging my kids' lives will be- statistically- was heart breaking. I sat in that low spot for a couple of days, and then one morning, a friend texted me the video I've posted. It was exactly what I needed to pull me out of the discouragement loop. I've read articles and cases about people who have lived wonderful lives- against all odds- due to the encouragement, hope, and affirmation of one person; a parent, teacher, pastor, friend. One person who didn't give up on them and reminded them of their greatness.
It's true that on paper we don't look so great statistically - in terms of having 'normal, successful' lives. But in my reality, I've been kicking statistic's ass for years, and have no plans to stop anytime soon. Call us the underdogs, overlook our abilities, be concerned for our futures- then watch as we blow through the low expectations every.single.time. I'm more than happy to be the test study for this group of board members as a representation of what tenacity, hope, and effort can do; and maybe in a future meeting with a single mother afraid about her kid's ability to have a good life- they'll tell her that he has just as good of a chance as anyone else; because they've seen the odds defied before.

(Please watch the video- it's incredible- whether you can relate to 'special needs' or not, it's inspiring)

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