Remaining grateful

Yesterday, while making dinner, I took in my surroundings. It wasn't a conscious effort on my part, it was a whisper that nudged me. I saw my beautiful kitchen stocked with food and gorgeous tools, ingredients and spices out to start baking the next day, dishes still piled high to put away and I felt safe. Turning, my eyes caught the two small trees flanking our fireplace sent by our friends the Delgados and Withrows (later a tree - on loan - joined the duo from our neighbor and good friend, Elizabeth) when they heard we didn't have the energy to put a tree. The fire was warming our space while outside it was a nippy 20 degrees with a light cover of frost from the earlier flurries. I was grateful in that moment.

Every day for the last few months, I have been an unwilling passenger on the roller coaster that is Andrew. Being told to go fuck myself, that am a fucking bitch, that he hopes I die and the screaming and obnoxiousness that occurs most mornings and on the weekends wear me down. I know that he will end up hugging me, telling me he loves me, that he is sorry for being so mean and that he knows I do everything for him - but that doesn't make it better. The weekends are the worse. Andrew purposefully goes after his father and Jim can't ignore it like I try very hard to do. I don't feed into the nastiness - I try to deflect it even while it is seeping into my every pore. On the weekends, I not only handle how Andrew can be - I have to stress about Jim's reaction to it - it is picking away at Jim like a cancer.

The stress of living with a mentally ill person who is your child is suffocating. We have to remember to remain grateful for the improvements - that he is doing well at school, that these nasty periods are short in reality but seem like forever when they are happening, and that this loud house that is filled with worry is also filled with love. We have to remember we have great jobs that we love, friends that care about us and that things will get better permanently. I know they will - deep in my heart - I know that even when my words say "I can't live like this anymore."

I'm grateful for my family, friends and all the blessings I have and I will try hard to remain that way. I am overwhelmed by the generosity of our friends and family always but one thing really hit me yesterday. I was on a Skype call with Jane, co-founder of Eat Your Books, my boss. Andrew yelled, "Hi, mom's boss," and Jane said "I'm mom's friend not her boss." Throughout my life I have felt that I wasn't worthy of anything - love, friends, gifts and that mind-set made it very hard to really accept all the wonderful things I have and I'm not talking about material things. That ingrained feeling that I wasn't worth anything from my upbringing made all the wonderfulness around me seem like it was nothing. The glass was always half empty or bone dry. This year, more than any other, I have made the discovery that I am entitled to love and for the first time I accept it.

Being grateful is good, maintaining that gratitude - that is the difficult part. 2018 will be the year of gratitude.

Happy Holidays.

Where I am at

I hate people. Sorry, don't take this statement personally, I hate everyone, including myself.

Andrew has continued to struggle, hit, bite and act out in public and say horrifically unfathomable things to people - I will not go into details - it has been unbearable. Friday, at his therapy session the psychologist called in the response team - two guards, a nurse, two clinicians, a wheelchair and a partridge in a pear tree. I had calmed him before the Doctor got back. He had spent 2 hours running, cursing, threatening, posturing to hit and more (okay I went into some details) - the doctor left the room when he bit deep into my thumb. They had no beds at Children's in Aurora and I wasn't letting him go through all that again for what? Nothing works. So I laid down the law - and said no. No more hospitalization - we need to work on this as an outpatient and not resort to slapping him in a bed and a few days later telling us that he needs to get home into his own clothes and back to his life. I've been trying to do that since the first time he was in the hospital, then the second time. There is no third time's the charm. (The psychiatrist changed up a few things and added a small dose of a med in the a.m. and afternoon to calm him. He seemed better yesterday - but who the fuck knows how long that will last.)

Monday, he goes back to school with an ABA trained staff member in a smaller setting so he doesn't have to deal with all the stressors - i.e., people - he hates them too. He hasn't been in school for longer than an hour or two since May and those hours were filled with him trying to escape, cursing, threatening and more. I hate Douglas County.

I'm tired. At times I pray for death. At times I pray that I live long enough to get him all the help he needs. At times I wish I had become a nun but as Blanche Devereaux says - "nun, the name says it all".

While I'm on a list of things I hate:

1. People who are mean for sport. I'm mean to myself - I try not to be mean to others - but when people lie or mistreat others - I can be mean.

2. Mental illness.

3. People who think that others don't deserve our help and our compassion. People who think that others don't deserve insurance and medical care. People who think that everyone who needs help is lazy and a drug attack. People. Period.

4. The current state of our world.

5. I hate that my friends are struggling and fighting battles to live and here I sit whining and complaining about my battles. I hate myself.

6. I hate that my friends are struggling with their kids and I don't know what to do for them - because I am just as lost and terrified.

I'm trying to be a better person - I am failing miserably. I don't want messages, calls, emails or anything - I don't want anything from anyone - I just had to unburden myself from these thoughts.

Nothing to fear but hope

Two days ago my son started Lithium. He has had two great days. Earlier in the week, he had tried to escape the unit by pulling on staff's badges, by hitting and biting - pulling another student off a chair and honestly I can't remember it all. It was then that I asked the doctor to not postpone retrying the Lithium to do it as soon as possible as we have wasted so much time in the last four years. It feels like we have lived a lifetime in the last two months.

He has had two great days. Two. I'll take them but I don't trust them.

I have nothing left to fear but hope itself. I am trying to stay positive but honestly trying to stay positive and hopeful takes so much damn energy. I had given up on prayer. I had given up on God. I'm not sure where I stand on anything right now. I'm numb.

Today, I took a trip to Home Goods just for twenty minutes to get out of the house - somewhere besides the hospital. I packed my cart full of things - things to make me happy - when I got to the register I realized that those things weren't going to do anything at all for me. The sweet girl behind the register, Jenna, was kind - I kept a bottle of olive oil, a small bowl and a Italian pot that was a size I had been looking for and was a steal - and told her I was putting everything else back - that I didn't need any of those things and I was trying to make myself feel better. She asked me what was wrong. I told her.

She said, "I was in the hospital myself for an entire year my sophomore year of high school. I had cancer. Stage 4 - the doctors said I had less than 20% chance of survival. I'm cancer free now. God is good." She is 20 years old, beautiful, kind and alive today.

She said she would pray for Andrew. I told her I wished her continued good health. I'm not sure about praying.

When we left tonight, Andrew begged to come home and wouldn't let me go he kept hugging and kissing me. He hasn't done that in a very long time.

The plan is four more days of inpatient treatment. Then partial hospitalization. We have our IEP meeting tomorrow - I've heard that the district is ready to admit he needs an ABA staffed private school. They better be - I'm not settling for less.

The house is quiet and peaceful, I feel anything but. Good reports and progress have always been the harbinger of really bad things as signs of hope ushers in evil -- I will keep my head low as well as my expectations and then when the fall comes it won't hurt as much.

Hits keep coming

As many of you know, Andrew was readmitted to the hospital on Wednesday evening. Overall, things have been rocky - better at home when we are alone - he and I - as it seems every person added to the equation makes for more stress - for everyone involved. Or it could be that I truly understand him more than others, even his father.

Dealing with depression, social anxiety, bipolar is something I totally get - my mother was bipolar - and I have a number of issues. I have to fight hard to be the totally with it woman you all see (are you laughing?) - in other words I'm a fucking fake - you know the tears of the clown stuff.

On Wednesday at school, he picked up a rock and threw it - why big rocks are right aside the SED classroom is beyond my comprehension - just as with our latest election  - it makes absolutely no fucking sense. He threw and broke a computer. He said vile things to the staff. He postured to punch an aide and the teacher and came one inch away from poking the psychologist in the eye. Remember, when I told you all - that the program there was not right for him. Yeah, I told them so.

He has gone from a frustrated brilliant boy who use to curse a great deal and sometimes clear the table when he became angry - to a boy immersed in autistic behaviors, inappropriate gestures, extremely regressed to baby talk at times and wants to be with me every single moment. Him being in the hospital again is tearing us both apart.

We are drowning and there are no life preservers for this shit. I can't seem to make the hospital understand that this is NOT Andrew. Prior to the hospitalization - he had really bad moments, really angry moments - now he still has those but he is a shell of who he is - and I want him back. Is that too much to ask? I'll deal with the outbursts - if I can have a conversation with him again - if he doesn't have that far away look in his eyes - if he doesn't act like an 8 year old version of the ruler of North Korea.

He isn't on anything new medication wise. Most of his medications were removed and just a few remain. Right now, the staff is befuddled as to what the right medication may be.

I just want my boy back - for better or for worse. I go to the hospital and feel like I can't breathe that there is so much sadness and hurt in the air. I know friends are battling cancer, I know friends are recovering from hurricane damage and I am thinking about them always - but when someone says there dishwasher broke and they are distraught, I want to pick up a rock myself and fling it through cyberspace. Be grateful for your life - I am trying hard to be grateful for mine even though I am fast losing faith in my God - I don't think he is there - if he ever was.

This is were I am at - lost and looking for my child - like Shirley MacClaine in Terms of Endearment - he's in the hospital again, we're following all the fucking rules - just give me back my son - it's way past 10 o'clock.

What No One Tells You

Words have been tossed at me for years - grabbed onto like life jackets, "once they get his medicines figured out things will be so much better. They were for my pick one: child, mother, sister, brother", "when he is older and more mature things will be better", "I had two children with ADHD" (translate: your bipolar son with autism can't beat my pair or three of a kind), "I'm here for you" or "let me know if I can do anything" (translate: I care enough to offer to do something but I really won't be able to do anything, ever).

What no one tells you, is that if you have a child with a neuro-psych diagnosis - you are in this alone. No overnights, no parties, even parents of other special need kids flee when your child's behaviors make their child look like Shirley Temple.

What no one tells you - that if you strip away the meds while trying other meds - your brilliant, angry child will become more autistic and the aggression will be lessened but the bizarre behavior will always be there and the hope you felt momentarily drifts away like everything and everyone else.

What no one tells you - is that things don't get better - they get a tad less worse but then always return to somewhere between despair and hell.

What no one tells you - is that you start living hour by hour and each hour is a mountain to climb - you no longer hope for good days - you settle for good hours and are fearing when you look forward to good minutes.

What no one tells you - is that you will always have to scrap and beg for every single thing that you want or need or think that can save your child.

What no one tells you - is that sometimes you will just want to crawl into a fetal position and not leave your bed but you have to because you are the bloody parent.

What no one tells you - is that while you are worried about friends and family, North Korea, scary politicians, paying bills and hurricanes - that your own fear and frustration suffocates you from the inside even when you are smiling and making jokes on the outside.

What no one tells you - is that you will delay your medical appointments, your root canal and dental appointments - that you will feel so bad and tired and sick but still somehow you always are able to put that oxygen mask on everyone else but yourself.

What no one tells you - is that tomorrow morning you will get up and do it all over again - that every day is the same battle, the same ups and downs, that hope is just another false promise that you make to yourself.

What no one tells you - is that you will defend your child to everyone. That a family friend who came to dinner after church on Saturday will say - "I hope you didn't pay anything out of pocket because he is worse than ever" and you will have to argue with a 77 year old woman that she can't make judgments like that based on an hour of behavior and that you have enough negativity in your life and you don't need hers to add to the heap. Which leads to....

What no one tells you - is that everyone is an expert and they know far more than a team of doctors and psychologists at a number one rated pediatric hospital.

What no one tells you - is that you will hate yourself for writing posts like this and seem like you are a selfish, whining, ungrateful parent and while you acknowledge this the need to unburden yourself far outweighs the need to give an iota about what anyone else thinks.

What no one tells you - is that while you are denouncing hope there is a hidden part of yourself that knows that it will be better and you pray that bitch knows what she is talking about.

Broken

When Andrew was first admitted on August 11th, the doctors thought that part of the problem may be his school placement. That he couldn't function in a SED (Social Emotional Disorders) setting but also couldn't function in a typical classroom with noise and chaos. I, for one, grabbed on to that and held hard - I thought - that's it - that is what will fix my child - proper placement and a revamp of his medications. Then he would be fine - no problems, no anger, no suicide threats - just snips and snails and puppy dog tails. Our world would be right. It hasn't been right in a very long time.

He made friends - he made progress - each medication removed and added held promise - we held our breath. We've been holding our breath for a very long time.

The last weekend was rough but Monday and Tuesday - he had two great days and nights. Then as the gods got wind of our happiness - he had a horrific incident on Wednesday, where he almost kicked a child in the head - thank God the staff stopped him. He was held and fought back with the staff. Last night was rough - because he was agitated and I tried my best to stay the course - I remained calmed and used all the words and behavior I was taught over the last month - while I died a little more inside. 

He must show safe behaviors for two days before being allowed back in with his peers in the day treatment program at the hospital. When he heard that plan this morning, he became enraged and tried to turn over the table - ran out of the room, grabbed a laundry cart and started propelling it and him up and down the halls of the unit. A staff member grabbed the cart - and Andrew made a fist but didn't hit her - and I died a little more inside.

I know we have a long road - I am trying to hold onto hope but there is a little part of me that fears my broken child cannot be fixed.

Two Roads

For over ten days, I have been terrified. Terrified that Andrew would never leave the hospital. Terrified that he will always resent me for taking him to the ER. Terrified that my mothering weighed heavily on his issues. Terrified that I could have done better by him - done more sooner for him. Fought harder.

After ten days, I have learned a great deal but I am still terrified. Andrew does resent me - in our family meeting yesterday - he expressed his anger at me for putting him in the hospital and that he doesn't love me anymore. Dr. G explained that his unsafe behaviors led him to the hospital. It was hard for me to hear the hurt in his voice. Jim started tearing up and told Andrew no one in this world loves him more than I do. Andrew started crying - it ended in hugs and exchanges of I love yous but the resentment is still there - raw and open for both of us.

I came to the realization that I had to take his feelings and my feelings totally out of the equation and do what was best for him. It was the hardest thing I have ever done. In the ER two Fridays ago, I almost left with him twice. I messaged Jim who was in the same room with me and said, "let's just leave with him - I can't leave him here". I couldn't bear feeling the overwhelming pain he was experiencing. During the last week, I wanted to walk out of that ward with him a number of times. When he was having a bad day, I felt every second of his anxiety and pain. I went to the hospital overcome with unbearable sadness - knowing that he was feeling that sadness or completely awash with anxiety because he was. People who claim they are empaths - believe them. I have been this way my entire life. 

I am still terrified. Tomorrow he comes home - we pick him up at 2:30. He will have day treatment the remainder of this week and all of next week. We will have an IEP meeting to fight for what we want for him on the 24th. We have a long, hard road to travel - the easy road would have been to walk out of that ER or never to have walked in. To paraphrase, Frost: I have always taken the road less traveled and that has made all the difference.

Learning Gratitude

Since his birth we have been on a roller coaster of good and bad times with our child – a handsome, smart, recently turned 13-year-old with several diagnoses. As a parent, I have screamed, cried, despaired, prayed for a miracle, blamed God, hated parents of typical children and yes, sometimes, felt utterly sorry for myself. I have been his advocate, his lawyer, his counselor, his mother, his only friend, the one who has loved him, hated the things he has said and done and sometimes truly not liked him. And yes there have been times that I have resented him.

He has threatened suicide to end his pain, he has called me horrible names, hit me, bit me and tried to choke me – he has done the same to his father. He has been on as many as ten medications. He has lied and we have had the sheriff show up at our house because he said a bruise on his leg was put there by his father. It was investigated – he admitted to banging his leg with the game controller when he got angry at a video game and we were cleared of any wrong doing. He has been the star of massive scenes at restaurants, at school, and even at church. 

Through all of this I have held onto hope making false promises to myself - when he’s a little older things will be better, once the hormones are done causing havoc he will balance out. If we just find the right medicine things will be better. Countless emails to his therapist, his psychiatrist, countless prayers and pleas gone unheard. I have slowly eroded into a numb yet jangled bag of nerves – going through the motions of being his mom all the while fighting for help from his medical and school team - from anyone. 

Last Friday, we concluded that there was no recourse but to take him to the ER after a meeting at the school went horribly off the rails. We had been trying to get him in all summer to even out his meds – to get him the most help we possibly could but his psychiatrist didn’t think that was the answer. On Friday, he was admitted. We now have hope - we haven't had that for a very long time. 

Since his admission, I have felt empty like a part of me is missing and also ashamed. I now know what gratitude is for this amazing child - I haven't felt that, too, for a very long time. I don’t deserve this beautiful, special boy – he deserves better.  I am reminded how much I appreciate who he is and I will do everything in my power to ensure that he gets all the help he needs to be a kind, responsible human being and I will never take him for granted - ever again. 

Good Enough

A friend sent me a link to this shockingly spot-on list of the 25 Things You Do as an Adult When You’ve Experienced Childhood Emotional Abuse it made me tear up. It was odd timing on his part to send the link - because while I was doing errands that morning I was thinking about how messed up I am and how parents can really fuck us up. I desperately don't want to be the parent that fucks up my kid and I fear I am becoming her.

My parents fed off each other - both physically abusive, my mother more emotionally abusive than my father. I was the oldest - I was the one who had to hold it all together - I was the target of their mental illness. I longed for the weeks when my mother would be hospitalized for her bipolar issues and my father would go "on a drunk" as we called it. Those times meant no hitting, no having to stay in my room where there were no windows, no lights, no books - nothing - for days at a time - only being allowed to use the restroom. Those times meant my dad was happy and we had breakfast at the tavern not far from our house. A bottle of 7 up and a bag of Lay's potato chips - man we thought we were living large. Then my mother would come home - all better - and things would go back to the normal state of hell.

I was always in trouble and I never knew why. I was always saying I'm sorry and I never knew for what. My mother would always make me the culprit - if my father was mad at me - he wouldn't be mad at her. It's funny how you remember the abuse and don't remember what brought it on - I vividly remember my mother hitting my head over and over with a wire hanger -- and then crying and rinsing the blood out in the kitchen sink - I was ten. I didn't know why - but she promised me a coloring book if I didn't tell my father what she had done.

I remember the constant state of fear - of being called a lesbian by my father because my elderly neighbor Ann was someone I wanted to spend time with. I didn't know what that was but I knew from the way he said it  - it was bad. As Andrew has been deteriorating and there is lots of screaming and yelling in our home on the weekend, I am thrown right back into that life - of fear and despair.

I am in a state of melancholy this week, feeling not good enough as a writer, an employee, a wife, a parent, a friend. Andrew has had a hellacious year - with so many medication changes and ups and downs - he just wants to get off this ride as do we. When I dole out his medications - some I have to cut in half, some in quarters - I feel like a pharmacy school drop out - fuck that pill just disintegrated, fuck that pill isn't perfectly in half - nothing is ever good enough. When I think about his fits of rage, as he balls up his fist to hit me and or when he calls me a piece of shit or a fucking cunt - I am ten again having the blood rinsed off of my head.

I don't want to turn into that parent that is screaming and wishing that I had made different choices in my life. I don't want to be the parent that hurts her child even in self-defense - while keeping him from running out the front door or grabbing a knife, I don't want to bruise his arms. I want to be hopeful and positive but the times lately have left little room for hope. I'm tired and mad at the world - angry and upset with everything because I can control nothing.

I know these chains are of my own doing. The things I do as an adult are my defense mechanisms that are deeply ingrained and no matter what I do - I know I will never be good enough.