Rebuilding the wall

I apologize for taking so long to let everyone know we are okay. Initially we were thrown back into crisis management. Fortunately we have an awesome team to go to for help, and the experiences with CPS, etc. were very positive and reassuring as you will see below. Life has settled back down for us. I had abdominal surgery last week, which meant I spent the week before preparing to be out of work for a month and doing what I could to get things ready at home. My parents came to help out and I was able to spend a few days with them before the surgery. I promise a blog post about the surgery soon. I started writing this post two weeks ago and am finally tonight finishing it.  

It's taken me a few weeks to decide if I was going to write more about my last post. In part because there is more than just me involved. In part because of the lingering memory of my mother pounding it into me that we don't air our dirty laundry in public.

But here's the thing. Years ago when I started this blog I started writing about our journey. I wanted it to be honest and real. As our life got messy and we struggled I shared not only because it helped me to put it in writing, but because I hoped that someday it might help another family to see they aren't alone. And it has helped others. The truth is, bad stuff happens to good families. Just because a child struggles doesn't mean the parents are bad. It's important to me to share that message, because too many good parents feel they have to hide in shame.

A couple months ago I read Beth's (from Five Kids is a lot of Kids) blog post about Naked Breakfast and her post script at the end where she questions how much of herself should she share on her blog, and she says "I’ve decided I’d rather be me out loud." That statement resonated with me. In the real world I'm pretty shy, but I don't hide our life because it's an opportunity to educate people. On my blog I'm far more open because it's much easier for me to write.

Beth's post helped me realized that that is what I'm doing, especially here. I'm being me out loud. There are times when I've let outside influences stop me for a while, but I keep coming back.

I've made it a point the last few years to tell only my story. This means that what I write is how I'm feeling, what I experienced, what I saw, what I said, what I heard. I will not speak for another person.

After thinking about it, I decided I'm not going to stop now. I'm going to continue to be me out loud. So I'm going to share more about what happened a few weeks ago. However, I am going to do this carefully, because there is another family involved and despite how dismayed I am at how they have handled this, I will respect their privacy as much as I can. That doesn't mean however, that I won't call them out on their questionable and hurtful behavior towards us.

Something happened that night. It wasn't great, but it also wasn't the end of the world. Far from it actually. Unfortunately, what started metaphorically as a small kitchen fire that could have easily been put out with a fire extinguisher was turned into the World Trade Center bombings.

There was a lot of drama that night. A LOT of drama. Adult drama. Parental drama. It was a freak out. All because two six year old boys did something when left for a somewhat lengthy period of time unsupervised, that surprised us adults. Something that after talking with the professionals I realize is not such a big deal.

I fully admit that initially I freaked out too. Fortunately, because of Noah I have a team of people to  reach out to for guidance.

Because I called one of our therapists to ask for advice on how to handle it with Kiel and how to handle the other family, and because of a misremembered conversation from several months ago, and how he has seen Noah and Kiel interact at times, he was concerned enough to feel that as a mandated reporter he needed to report the incident. That is how CPS became involved. Initially I was freaked out, but I understood that he was doing what he thought was right.

In the first few days after the incident, the other family contacted us several times via text and phone. They asked for "open, honest, raw communication." They said the boys were still ok together as long as they were supervised.  They kept the communication going for four days, then it suddenly stopped. No warning, no explanation. I realized we had been blocked on Facebook. They would not look at us. They turned their head away if they drove by us. They drove the LONG way around the block presumably so they wouldn't have to see us at the bus stop. Sometimes their child is left completely unsupervised at the bus stop, again, presumably, so they don't have to see us.

Kiel has come home from school several times telling me that the other boy told him he is not allowed to play or talk to him, and that the other mom hates him. Kiel has been having nightmares about the other mom trying to get him. That makes me incredibly sad. Both for Kiel and for the other mom, because I think if she knew that she would be upset. I don't think she is a bad person, she was my friend after all. 

This is a family that we were very close with. The boys were best friends. We did things together as families. Kiel was always welcome at their house just as their son was welcome at ours. We helped each other out when one of us was in a pinch. In fact, just the week before Rich had picked up their kids from daycare when neither of the parents thought they were going to make it in time. I really enjoyed having a family in the neighborhood that we could share with and count on. The boys played soccer and baseball together and Rich would often take both of them to practices since he was going to be there anyway. Kiel spent the night at their house several times. We took the other boy out with us when we went to the movies, and once to a  baseball game. While I wasn't comfortable having him spend the night at our house because I didn't want him to have to see one of Noah's meltdowns, I tried to make up for it by inviting him to go with us when we did family activities outside of the house. I was very honest with them about Noah and our struggles and why I was careful about when their son was at our house. I treated their son like he was one of mine, just as they did with Kiel.

As far as CPS becoming involved, it is something I have always feared. Yet I knew that it was inevitable. I just always thought it would be from something Noah did.

My fears came from horror stories from other families with special needs children and from my trauma momma network.  I truly feared that their involvement could lead to the boys being taken from us. Not necessarily a rational fear.

The truth is that from the first contact with CPS they have been wonderful and nothing but supportive. The social worker assigned to us, and her supervisor have both been kind and very complementary of how we are parenting the boys. When we met with the social worker for the home visit she said the case was being closed.

As an aside, I was very nervous about their home visit, again, from horror stories I've heard from other families in other parts of the country. I made Rich stay home and help me clean the house. I had no idea what they would look at and how critical they would be. It turns out she never went past the front part of our house.

Rich and I were never the focus of the investigation. The concern was if Noah was abusing Kiel in some way. Because of that Kiel had to undergo an interview with a child forensic interviewer. The process involves a team of professionals watching through one way glass, including an assistant district attorney and a local police detective. When I first heard that I was pretty freaked out. They had just told me what had happened was not a big deal, but then they were going to grill Kiel with the police and an ADA there?

Fortunately, it wasn't quite like that. While they were there, it is standard procedure, and done in case the child discloses that an adult is abusing them. I believe it has to do with hearing the disclosure first hand so it isn't hearsay and to do with the chain of custody of evidence since the interview is videotaped.

Kiel was a trooper during the process and I am so proud of him. He answered their questions and nothing he said concerned the team. They felt confident, as did we, that nothing inappropriate was happening with Noah. In fact, both the ADA and the detective told us that we had taken on far too much of the responsibility and guilt for the incident with his best friend. They made it very clear that what happened was under the (non)supervision of another family, that only the two six year old boys really know what happened, and that the way things were handled that night with the other child being grilled repeatedly by his parents, and that Kiel was basically refusing to talk, that what we "think" we know from the other boy can't necessarily be believed. The detective flat out said that kids do stupid stuff, and that we don't know what the other boy did, and we probably never will.

It was very reassuring. So was hearing that we can't take on the other families issues, that they were the ones not supervising the kids, and that their behavior has likely caused more harm for their son in the long run (okay, that part wasn't reassuring, I'm actually concerned about the other boy and how he is being traumatized by how his parents are acting).

The social worker told me later that after we left the team talked about it some more and that they were all shocked at how the other family was acting and that they felt sorry for us that we had to deal with them and how they have continued to behave. The detective told us that if we find out they are spreading rumors about us that we are to call him and let him know.

I am concerned that they may be saying things about Kiel or our family to people at school or in our neighborhood. So far I haven't heard anything, but given their strange behavior the last several weeks I do wonder.

Rich tried to talk to the other mom the other day and she refused, then she ran away from him into her house. She literally ran away from him.

Halloween night they had a party in their driveway with the families on our block. Except for us. It felt like a very public shunning. It hurt, a lot. And to be frank, I don't understand it. I can only speculate as to why they are acting this way since they won't talk to us. Perhaps their son disclosed a previous incident with someone else, or perhaps he admitted to being the instigator. I honestly have no idea. The problem with being cut off in such a way is that you can think a lot of different things.

Post script: Tonight I found out that the other parents went to the school and spoke to the principal about Kiel. I don't know what exactly was said, but I hope to talk with the principal soon about this. I'm seriously beside myself at how the other family is behaving towards us.

And the walls came tumbling down around us

 I wrote this a couple weeks ago but didn't have a chance to finish it at the time.

For the first time in many years we aren't living in constant crisis mode. There are still moments with Noah, sometimes even daily, but we are handling them better and we are seeing progress despite them. Noah is doing better right now than we have ever seen him. It's amazing. 

Now that Kiel is in first grade, both boys are home at the same time in the afternoon. That means less individual mom time for both of them. It also means more time for the two of them to be together. The boys are making more friends in the neighborhood now that Kiel has classmates living on the same block. There are other kids running in and out of the house after school and on the weekend. The door bell rings and someone is asking if Kiel and Noah can come out and play. It's pretty awesome and NORMAL and I love it.

Having some normal in our life is amazing and encouraging and well, kind of weird. It's sure is something I could get used to. 

You would think I would know better than to put something like this in writing. To admit to things going well. To write out loud that we aren't in crisis!

Hahaha. What nerve I had to write that. We aren't meant to live a normal life. How dare we not be in crisis the universe says.

Last Friday something happened and our life exploded again. Right now I feel like I'm living in a snow globe that someone is shaking the crap out of. The pieces inside have rearranged themselves. The person finally put it down, but left it on it's top, upside down. Everything I once knew has shifted and tumbled. 

As we are managing this crisis we realize that Kiel has become a victim of our family. I've spent the last several years educating people about trauma and how it affects Noah and his brain and yet I never considered how the chaos in our house was traumatizing Kiel. 

We don't have an official diagnosis but I believe as this crisis teases itself out Kiel will end up with a diagnosis of post-traumatic stress disorder.

CPS is involved, which has always been one of my biggest fears. So far it hasn't been bad. Just a few phone calls and an appointment set up for Kiel to be interviewed next week. 

This part of the crisis I'm good at. I know how to get services and find therapists. While I'm making appointments and searching for resources I'm OK. When I'm updating providers I'm OK.

When I'm not doing those things I'm a mess. Any time to think and I'm obsessing about it. Forget going to sleep. Even with drugs the sleep is hard to find.

I knew that our time out from crisis wouldn't last forever.  Noah is maturing and going through puberty. He is almost a teenager. It is inevitable that something will happen with him in the next few years. I know that and while it will undoubtedly suck, we will be prepared.

This. This I was not prepared for. This has rocked my world in a completely different way. 

I know we will get Kiel through it, because that is what I do. I don't give up. I move mountains when I need to. It will take some time, but with a good therapist we will lay that trauma monster to rest and we will make the changes in our family that need to be made.

The guilt though is overwhelming, and it's amplified because another family is involved and I'm watching them fall apart in front of me. The fucked-upness of our family intersected with another family and the walls came tumbling down around us all. Even though it wasn't something I could ever have anticipated, the guilt I feel about it is more overwhelming than what I'm feeling for Kiel in some ways. 

It hurts too, because I let down my guard and started to get close to someone. Something that is very difficult for me. I doubt it will make it through this. Keeping to ourselves causes less pain to those around us, and to us. I won't forget that again.


 

And finally - I bring you the NOW

I promised you an update weeks ago and clearly my follow through sucks.

The concise version is that Noah is doing so much better.

The longer version starts with Noah being discharged from the hospital after 22 days. He wasn't really better, he was just different. His emotions were back. All of them, not just anger. He wanted to come home. The next step typically would be a week or two of outpatient treatment, but he did a trial  run that went spectacularly awful for him and he refused to go back. So he jumped right back into school.

I had a meeting with the school before he went back and made many demands requests, most of which they put in place. It was interesting how they were finally taking Noah's needs and my concerns seriously.

Noah was back. He was happy. He had a full range of emotions again. But he was still so fast. Too fast. Exhausting to those around him fast. His speech, his body, his thoughts. All too fast!

But he was happy. And he hadn't had a single motor or vocal tic since he left the hospital. A lot of medication changes had been made and we were trying to keep him off stimulants because of the tics and the anger.

School was trying hard to work with him and help him be successful. They finally put regular/consistent movement breaks into his schedule. They put an exercise bike into his class room. Each kid was given a laminated pass kept at their desk to use if they needed a break. They changed the aid that was working with him from a stern grandmotherly woman to a young male. And they gave him his own bus to ride home in each afternoon. (Did I ever tell you about his afternoon bus driver and aid for the first part of his year? Oy, disaster.)

All great stuff. Yet he was still struggling. His point sheet that they use to monitor his behavior throughout the day was coming home with similar numbers as before the hospital. It was obvious Noah was trying, and the school was trying, but he was still struggling - behaviorally and academically.

At home things were better, but his speed was causing big problems. It really was exhausting being with him. He never stopped talking or moving. He had very little concept of where his body was in space, so things got knocked down around him all the time. He really struggled with Kiel too. Lots of jealousy going on there.

This went on for several weeks until one weekend when Rich was working. By 10am I was ready to lose my mind listening to Noah, especially how he was terrorizing interacting with Kiel, which meant Kiel as crying every other minute. So I caved and gave Noah a half dose of the stimulant that he was on prior to the hospital.

OMG People! It was like a magic pill. Within an hour he was able to have a real conversation. He was interacting appropriately with Kiel. He even told me that he felt better in his head, which was a first!

We sent him to school on that dose the next Monday and his teacher called midday to ask me who I sent to school because the kid that looked like Noah was amazing.

It continued for the rest of the school year. Just like that he was bringing home point sheets with 99's and 100's, instead of 75's and 80's. And even better he was learning again!

This summer I hired a college student to work with him 32 hours a week when I'm at work. It worked out very well and Noah enjoyed being with her every day. They played lots of basketball and went bowling almost every day. I had hoped they would spread their wings a bit and try some new things, go on some different adventures together, but Noah's anxiety is still an issue, and he preferred staying close to home or doing things he was comfortable with already. I did send both boys to a week of soccer camp (locally run, 9-1) in both July and August. Noah did well the first week, but struggled the second with his anxiety. Overall it was a good summer for Noah.

Right now it's the end of August and we have ten days until school starts. He's nervous about starting sixth grade, which he has told me several times. Soccer season has already started and he struggled going to the first practice but once he got into it he did fine. He did fine the next practice, but then fell apart at the first academy practice. Too many kids and the commands were too fast and too many steps. He was so afraid he was going to embarrass himself that he froze and refused to participate.

So that's where we are right now. Gearing up for school, worrying about his anxiety, hoping we can still keep soccer his positive place.

Maybe next time I'll write about something totally not related to Noah. How novel...




 

The During - You don't get casseroles when your child is in the nut house

Another post from the time Noah was in the hospital. 

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I get that people don't always know what to say to me. My honesty about what is going on with Noah is uncomfortable for some.

Having a child at a psychiatric hospital isn't the same as if they were in a "real" hospital. At least that is what most people think.  Noah might not be fighting for his life (right now anyway), but we are damn well fighting for Noah's future right now, and for our family. 

If Noah was in a regular hospital we would be able to stay. We would be able to be with him 24/7 if we wanted. At this hospital we can visit twice a day for an hour. On the hospitals schedule, not ours. They give us a few minutes leeway on either side, but don't bother asking for anything different.

The house is staying neater without Noah here, and the kitchen isn't getting as messy because we aren't eating regular meals. The laundry is clean but still in baskets. The vacuum hasn't been touched in a while or the toilets cleaned. A wonderful friend of mine has gifted me with a visit from her cleaning woman. She will come sometime next week. I feel guilty accepting what feels to me like an extravagant gift, but I am accepting it gratefully. Very gratefully. As awesome as it will be to have someone clean our house, it is even more wonderful to know that we are being thought of and that someone understands how difficult this time is and that help is appreciated.

Two other friends of mine, teachers that have worked with both Noah and Kiel, sent me a gift bag with chocolate and a gift certificate for a massage. While the gift itself is wonderful, it is another reminder that we are not alone. We have isolated ourselves in the past, but as we go through this I am learning how much we need help and that we can't do this alone.

My trauma mommas have been unbelievably supportive. So many of them have been through this themselves. There is no stigma when talking about it with them.

The parent's of Kiel's best friend have been very helpful, especially taking Kiel at times so we could visit Noah together.

Unfortunately, it's situations like this that show you who you can't count on as well. I'm incredibly sad that my brother and his wife have not contacted us at all. I think that hurts me more than anything else as we go through this with Noah.

 

The During - A day in the life of a psych unit mom

Another post I wrote but didn't go back and publish. I thought about not posting it at all, but someday another mother will be going through this and maybe they will find this post. If it can help her by reading about someone else having been there, well, then the words stay. 

I wrote this about two weeks into his stay.

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For the most part I feel like I have my feet back under me. We have a routine now. One of us visits Noah at noon (usually me), one of us at 5:30pm (usually Rich). It depends on the day and if Kiel is at home or school.

I don't have to get Noah on the school bus in the morning obviously; therefore, I have the luxury of sleeping in twenty minutes later. Technically anyway. Most mornings Noah calls and wakes me up. His calls either involve his lunch request or him crying wanting to come home. Sometimes both. Either way the calls are difficult. If his call is just to ask for something he feels distant. If he cries begging to come home I feel cruel.

I shower and get ready for work in a quiet house, since Kiel and Rich have already left for the day. There is no yelling downstairs to remind Noah to eat his breakfast or put on his socks then his shoes. No running down stairs to find Noah waiting for the bus in front of the door...with it closed so he can't see if the bus is there or not. The quiet is more disturbing than it is peaceful.

I get to work. Late. But with no excuse right now other than I'm not a morning person and the motivation to get out of bed is not there.

I check in with Rich to see if he talked to anyone at the hospital or to update him on my call with Noah. We confirm who is seeing him at noon, and who is going in the evening. Who is picking up food for him or what we have at home already.

I missed almost two weeks of work so now I'm trying to catch up. Projects don't stop just because I feel like our life is on hold. I'm concentrating better than I did two weeks ago, but I still find myself drifting off into worry at random times throughout the day. I have no choice but to commit to meetings and deadlines even though right now I find it difficult to see the future at all - be it next week or next month.

I'm very fortunate that my coworkers and my boss have been supportive. One of my coworkers completely took over the final piece of a project I had due earlier this week. My boss has stepped up and is taking a bigger role in another project I'm leading. I feel guilty. In the past I've managed my commitments at work, even when life with Noah was a struggle.

It's not a secret where Noah is right now, but most people at work don't know outside of the team I work with. It's not something that comes up naturally in conversation, although I have been known to just blurt it out.

At 11:45am I leave to visit Noah. Most days I'm slipping out of a meeting early, or trying to rush a conference call so I don't miss any time with Noah. If he's having a good day he might be at the gym, and not notice that I'm not there right at noon. If he isn't at the gym sometimes he is waiting for me. Even if he isn't I'm guaranteed a huge hug when I do arrive, which is the first time I've felt whole all day.

Most days I'm the only parent there visiting at that time. I'm lucky that the hospital is so close to both my office and our home. Some of the children receive no visitors. I don't know if it is because they do not have families or their families are too far away. The other day I watched a child leave dragging her belongings with her in a black trash bag. It made me sad. I don't know for sure, but I don't think she was leaving with a family member.

The noon visit is almost always our best visit of the two. It makes a difference when we are the only ones in the small classroom that is where families are allowed to visit. When it is just the two of us, after we talk for a bit I read to him while he eats lunch. Then he curls into me as best as he can since we are sitting in plastic desk chairs. Some days he falls asleep. The new medication combined with the lack of sleep at night makes him tired. Some days he looks drugged, especially the first day the dose is increased. Before that his body was fast. He was up and down during my visit. The only thing keeping him in the room was my reading to him. He constantly moved in his chair, or paced, sometimes climbing on the desks until I made him get down. He wanted to be there though, and I knew that listening to my voice reading the story was keeping him connected to me in a way that just talking with him could not. Perhaps not having to respond removed some of the pressure on him.

After an hour I have to leave. Visiting time is over and I have to go back to work.

Since I don't have to get home in time for the afternoon school bus I can stay until almost 5pm. I've turned off the alarm on my phone that used to go off at 2:45pm as a reminder that I need to leave by 3pm. I stay as late as I can to make up for my time away at noon, and to try to catch up. It isn't unusual for me to bring work home with me to finish up after Noah's homework is done, or after the boys are in bed. Right now though I don't have the energy to work in the evening.

I get home in time for Rich to drop off Kiel and head to the hospital for his visit. Or, if I'm visiting I go directly to see Noah.

Whoever is at home feeds Kiel dinner. We have only had one real meal at home with Kiel in the last three weeks, and that was because a good friend came to watch Kiel so both Rich and I could visit Noah together. She also brought us dinner! I've learned you don't get casseroles when your child is just hah fucking hah in a psych hospital.

It's 7pm by the time Rich and I are both home. Kiel has a lot more freedom right now since he can handle a less structured schedule than Noah can. We've moved his bedtime to 8pm instead of 7:30pm. We take turns putting him to bed. One of us snuggles with him until he is asleep. Sometimes when it is my turn Rich comes up soon after and goes to sleep himself. Most times when it is Rich putting him to bed he falls asleep with him.

Noah usually calls between 8 and 8:30pm. We both talk with him, and most nights he and Kiel talk too. Some nights, like tonight, the call is good. Other nights he cries wanting to come home. Some nights he doesn't sound completely connected to the world.

I spend most evenings by myself. Rich deals with the stress by going to bed early. I'm tired, but can't sleep.  I watch TV, or check in on Facebook. Sometimes, like tonight, I try to write a blog post. I flit between activities. I don't have the emotional energy to fully concentrate on one thing, or to do anything but sit on the couch. The kitchen is dirty and I don't really care.

I force myself to bed around midnight. It's hard to see Noah's empty bedroom. I've never been a good sleeper and it is even harder to fall asleep now. If it's a good night I'm asleep before 2am. My stress shows up in my dreams.

The alarm goes off, far too early considering my lack of sleep. Then I do it all again.


 

The Time Between

I wrote this shortly after Noah came home from the hospital. I was letting it sit overnight before I posted it. Obviously I never came back to it. 

To those of you who have commented recently asking how we are doing, and to all my other readers, thank you! Thank you for caring about us! Thank you for pushing me to update! 

This post is about how things were. I will post again about how things are. They are good! Right now things are good! I thought about just posting that, and deleting this all together, but I think it's important to know what the in between was.

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If it isn't obvious to you by now, let me just put it out there.

I only come here anymore when I need to wallow. Roll around in all my drama. Like a pig in shit you might say.

There is no time to come here with the good stuff. Hell, I have half a dozen partially written posts waiting for me to finish that have nothing to do with the good stuff.

There is good stuff. There is. Kiel is full of the good stuff. And Noah has plenty of it too.

I get overwhelmed by the crap we are dealing with, and then as I start to write it down here, I feel like kicking myself in the teeth for all the damn self pity that surfaces.

For cripes sake woman. You are the mom. You don't get to fall to pieces.

Noah is doing differently since his hospitalization. I wouldn't say he is doing better however. He's full of energy and emotion, but it comes out in overwhelming ways. He's too fast. His body, his thoughts. He's defiant yet loving. Stubborn and reactive yet more connected than he has been in months.

He constantly picks on Kiel, and as I understand from his teacher, a couple of the more vulnerable kids at school.

For whatever reason, he has decided that he's going to act crazy. I guess he figures if that is what people expect from him he's going to give it to them.  

That's how I roll, he says.

He's loud, obnoxious, a step beyond just silly. He won't stop when asked. He won't lower his voice. He says really strange things.

I think it's an act. Most of it is an act. I think. I don't always know. I hope it is an act.

Last week he told me he can't stop thinking about killing me. He was helping me put away dishes and when he was doing the silverware he handed me a sharp knife and said "get this scary thing away from me." Then a few minutes later he threw himself into me for a hug, his head pressed into my chest, almost in tears. He tells me he doesn't understand why he can't stop thinking about killing me because he loves me so much and he doesn't want me to die. This was not an act.

We are on top of it. I spoke with the psychiatrist and he thinks it may be because of a recent medication addition. It freaked me out, still does actually, but I talked to him today and he said he only thought that the one day, but I probably shouldn't let him have any knives.

Last week I offended the psychologist. Well, it seemed like he was offended. Perhaps it was just irritation. I questioned him on why we were continuing to do a behavior program that wasn't working. I asked the same questions I have previously about applying behavioral modification to a child with brain damage, when the current info says it doesn't work. When our history says it doesn't work. I told Rich I can't waste my time on this when it isn't getting us anywhere. Tomorrow I will officially end our professional relationship.

I interviewed a behavior specialist (BSC) last week for Noah. I got the impression that most families don't interview prior to them taking on a case. I guess they aren't used to working with someone that has been playing this game for so long. I asked her about her education and experience. I asked about her knowledge of trauma and trauma based therapy. I asked about neuro-behavioral theory and what she knew about the brain when exposed to alcohol and when it doesn't receive appropriate care as a newborn and infant.

I found out today I scared her away.  I am not surprised.

I'm tired of spending months working with someone that doesn't understand what we are dealing with, and tries to apply traditional methods to my very non-traditional child, despite all my explanations of what we have tried in the past and what didn't work before.


Mostly though, I'm just tired. Very, very tired. Bone tired. Hard to get off the couch tired. Napping almost every day after work tired. Struggling to get even the basics around the house done tired. The stress is not just affecting my mind now, it's affecting my health.

His Empty Room

I have looked forward to Noah's first night away from home for several years. It is a right of passage after all.

I always thought it would be his first sleepover with a friend, or a night with grandma and papa. Maybe his first time at summer camp.

I always thought his first night away would have happened by now.

I have mourned the absence of invites from friends and grandparents.

I never imagined his first night away would be at a psychiatric hospital. Or that one night would turn into fourteen. Or that fourteen would turn into sixteen and then more.

At night as I get ready for bed I look down the hall at his empty room. He sleeps with his door closed, but for now I keep it open. I keep his night light on. I won't pretend he is here, even if I cry myself to sleep most nights because he isn't.

I know he's not sleeping well at night. Yesterday he asked us to bring him one of his blankets from home. (The blanket you made for him when he was a baby Aunt Robyn.)

This morning we were told he is having auditory hallucinations. The door is telling him if he sleeps he will die. When I talked to him about it he said it was a dream. That isn't what he told the psychiatrist though. 

Tonight he asked if I remembered his blanket. I didn't. Now I'm awake at 1:30 am worrying and hoping nothing is talking to him, even in his dreams.

 

Decisions: When the head knows, but the heart is saying "la la la...shut up bitch, I can't hear you."

We find ourselves in the unenviable position of having to make a very difficult decision regarding Noah. The most difficult decision we have faced yet.  It's not that we haven't made difficult decisions about his care in the past, and I know we will likely face even more difficult decisions in the future, but this one just sucks. It means we have taken that next step forward on the path of mental illness.

Noah has been spiraling downward for several months. We've watched it happen, but kept hoping with every doctor appointment, medication change, and relatively good day scattered amongst the difficult, that maybe it would get better.

It isn't though. It isn't getting better. He is getting worse. The line is getting thinner, and more and more often I see him leaning perilously close to the edge of reality.

There are times that I am not sure if he's walking in the same world that the rest of us are. 

He needs to be admitted to a psychiatric hospital. He needs his medications changed and we can't do that safely at home. He needs a set of eyes on him 24/7 that aren't mine or Rich's. 

My head and gut know what needs to be done. My heart though is fighting me and fighting me hard.

I'm scared. I'm scared to leave my little boy somewhere that I can only visit twice a day for an hour at a time. 

I'm scared because he has never been away from home without us.

I'm scared that he will be scared.

I'm scared he won't be able to take GG's blanket. Or worse, that he will and it will get lost.

I'm scared that he will hate me for doing this.

I'm scared that something bad will happen to him there.

I'm scared the other kids will teach him things, or behaviors, that he doesn't need to know.

I'm scared if we don't do it he will keep getting worse.

I'm scared if we do that they won't be able to help him. 

I'm scared that I'm going to feel relief when he isn't here.

I'm scared that if we have a few days of normalcy and peace in our house, days where we aren't constantly dealing with behaviors and meltdowns, that it is going to be even harder to go back to it when he comes home. And yes, I do want to throw up after writing that because I know it is awful. I also know it is true. I don't doubt my love for him, but I am so tired. What does that say about me? 

I expected the psychiatrist to tell me today that he needs to go. Instead he left it very much up to us. He didn't say it was the wrong thing, but he also didn't say "yes, you need to do this now." He did remind me though, that I'm the grown up and that I need to look at the bigger picture, because Noah can't.

The psychologist thinks we should, and he's spent more time with Noah than the psychiatrist.

His teacher is concerned, and said today that Noah isn't the same kid he was last fall.

I know what needs to be done.

I know.

I hate it, but I know.

I'm just not sure I'm ready yet to tell my heart to shut up and let my head lead the way.

I'm scared for what is and what is yet to come.

Sometimes I bend, but I will not break.

There are times when the weight of the responsibility of raising Noah to be a decent, independent adult that is able to function in society threatens to break me.

I don't think I'm supposed to admit that though. 

As the parent of a child with special needs I should be worthy of hearing "I don't know how you do it," "I couldn't do what you do," and "he is so lucky to have you."

When I complain, and admit to not being perfect, to struggling, to god forbid needing help, it makes people uncomfortable. I rather think they prefer when I write about vibrators over sharing with the world that my son has a mental illness and it really, really sucks.

You know what? I get it!

The truth is, I lose track of that line between sharing and complaining quite often. Too often.

Yesterday, I found out that Noah will not be able to attend the special needs summer day camp he has attended for the last three years. They changed the age range of their program and somehow we missed the letter telling us that. It wasn't until earlier this week when I started to think that I have usually sent in his camp application by now that I thought to question why we had yet to hear from them.

Just as I finished a conference call with my team at work, I received the email telling me he wouldn't be able to attend this summer. 

It is without exaggeration that I say I came close to breaking. I bent, and I bent far. I thought I was going to snap. Like the snow and ice laden trees behind our house did in the storm the night before.

What are we going to do? Where will he go this summer? I will have to quit my job. I can't do that. How will we survive? What will I dooooo???

I cried. I sobbed. I took to my bed and wallowed in my tears.

Oh, the drama!

We are in the midst of snow and ice-storm school closings. Yesterday, we spent part of the day without power. My children forgot how to play with REAL toys, because Oh the injustice, there was no TV or cable or internet or Xbox. And LIFE IS SO HARD YOU GUYS! This house sucks! You obviously don't love us because we are SOOOOO bored! It's not fairrrrr! You are the worst parents ever!

I looked at them through my puffy, tear filled eyes, and said YUP. And then I cried some more.

Because I too was feeling that LIFE IS SO HARD. And IT'S NOT FAIR!

I was tired. Tired of the fight. Fighting to have a family, fighting to bring Noah home, fighting my body to get pregnant with Kiel, fighting to find Noah the help he needs, fighting the school, the system, the insurance companies, fighting my own needs and my own health. Why can't something be easy for a change!

I yelled at my children to pick up their toys, and put the coats away, and stop leaving your shoes and boots all over. 

I can't stand it! I screamed, Why can't ANYONE MAKE MY LIFE A LITTLE EASIER!

Again with the drama!

I texted Noah's behavior specialist and said "I can't do this anymore."

It didn't matter that this was far from the worst thing we have had to deal with - I bent as far as I have ever bent before. The only reason you could not hear the cracking was because my sobs were too loud.

~~~~~~~

Today I received a message from one of Kiel's teachers. Thank you universe for my boys amazing teachers - especially this one!

My dearest Kristine. I am having snack with your son and he happens to share how sad you are that you got fired from your job. He doesn't know why "that man would do that". Now she is home taking care of Noah. He was so sweet and concerned when he was telling me the story. Not sure if it is true but if it is I'm sorry you lost your job. :) I'm enjoying teaching your sweet boy. Have a good day.

This child! I am so blessed to have this boy as my son!

Kiel saw me cry at the same time he knew I was working. Both boys wanted to know what was wrong and all I told them was I received bad news. Kiel put two and two together, and since he doesn't know how to add yet, he came up with "the man fired mommy" as the answer.

It reminds me that they see everything. They see me bend, and they see me stand back up.

I wish they didn't see my tears as often as they do. Or hear my screams.

I know that I will continue to stand back up because I have no choice.

Today I know we will figure this out. We always do. We have no choice.

I just hope that when my boys see me bend like I did yesterday, then stand back up as I did today, that they realize they too can stand tall and strong after a storm.

Even better if they can do it with less drama than their mama.