routerecalculation

About 3 weeks ago I decided to cash in a bunch of air miles for some rewards. I’d been saving for a trip, but the reality is it would be A MA (against medical advice) to go anywhere for the next 6 months to year, so what the heck! Time to cash in! Both my fiance and I have been trying to get our own health on track, so we both got fitbits. Pretty cool device actually. Tracks your sleep, your steps, and you can track food, water exercise and even post challenges to each other. Surprisingly enough it’s made me extremely conscious of my sleep, or lack thereof, and I’ve been working hard at fixing it.

Last night I had my daughter home again for another overnight, but this time it was a surprise. She was not expecting me to pick her up and take her home, so I was interested to see how this would play out. It had been an intense treatment day, so I was just going to play it all by ear. She was indeed surprised, but was ok with it, so home we went.

I was quite excited. My sister in law had come over and helped me paint the spare bedroom (my oldest sons old room), and I really wanted to show her it. My middle boy was working the late shift, so we were going to get a girls night. We decided go get drive thru and bring it home and just chill together. We cued up a movie – The Search for Happiness, made some popcorn, got out the blankets. “This is so awesome!” I thought. Girls night, great movie, seems so normal. Some complaints of stomach pain were in the background, but we both know that’s from anxiety and stress, so we tried putting that to the back, and began the movie. Everything felt great.

At the hospital, they are really great at executing their timetables. Everything happens at the same time, each and every day. Wakeup at 8, breakfast 830, programs, lunch at 12, more programming, snack at 3, programs, dinner at 5, individual work, 630 fun event, 8 evening showers, meds, bedtime regimen, lights out for teens 9 pm. Yup – 9 pm for teens. Word is that they still don’t get to sleep till 10, so I’m betting by 930 the majority of them are asleep. This is a real area of growth for me, and I’ve had 5 months to wrap my head around it. My daughter thrives on scheduling – how am I going to replicate this? Routine is going to be drastically important. The other aspect all of the programs are really strict on is no caffeine of any kind. The closest they get is chocolate. Here is where I made the mistake. Special night, no pop for 5 months.

“What do you want to drink sweetie?”
“Ummmm, coke?”
“Really? Umm, well, I guess this once would be ok.”

NOT OK.

The evening progressed well, despite a hiccup that sent us to shoppers at 10 pm looking for contact solution. Quick trip back, shower, and we were about 1 hour behind. “Not the end of the world if it only happens once,” I thought. I gave out her meds, got her all tucked in and things felt great just as they should. I went up to bed and did my own regimen, set my fit bit to track my sleep.

I remember waking up during the night around 4, and a bit of tossing and turning, but otherwise felt pretty good. Making a conscious effort in how I sleep seems to be making a difference. I still haven’t cut out late night caffeine, but I’m on the right track. The weird thing is, when I woke up in the morning, my watch was missing. ” Strange, where’s my watch? I must have taken it off when I was watching the movie. Nope, I remember putting it on the opposite arm when I put my fit bit on. Hmmm. Weird. Maybe it fell off? Nah. I must have taken it off”. Oh well, time to get up.

I went downstairs to wake up my daughter. “Good. In bed and still sleeping. Wait a minute. Why is she wearing my watch?” I gently woke her up. I went and folded my laundry, thinking more about the watch. She had fallen back asleep again so I woke her up again.

“Time to wake up sweetie”.
“I’m tired mom. I didn’t sleep well. Oh, here’s your watch.”
“How did you get my watch?” (Dare I even ask?)
“Don’t you remember?”

No. I didn’t remember. I didn’t remember at all.

Apparently she couldn’t sleep. Laid in bed until around midnight or 1 when she came to my room. She said she told me she couldn’t sleep, and wanted to know what time it was, so I gave her my watch. I DON’T REMEMBER ANY OF IT!

So what’s the big deal? If she woke me up, and I don’t remember, what would happen if she was in distress? How would I ever hear the front door open? What would I have done if she had been self harming and I couldn’t hear her or even wake up enough to help? Why wasn’t my mom radar working? That instinct you have that can wake you up at a baby’s soft cry. Have I lost it?!!!!!! I’m supposed to be able to keep things safe. How do I do that if I don’t wake up. I checked my fitbit. It doesn’t even say I was restless at that time. I know it’s not perfect but really?

What if???!!!!!!!!

I’m worried I feel awful. My guilt cup is full this morning. Fortunately she just went back to bed and laid there till she fell asleep. She can’t see me panicking on the inside, but I am. Why didn’t I wake up? Am I really that tired? Now I really have to make some decisions. How do I change what could have hapoened? I would never forgive myself if……. This is one thing I have to fix – and quickly too. 1 week till D. 1 week to plan. 1 week to get things together. I can do this.

What kind of people suffer from mental health issues?  What do they look like?  What do they wear?  How do they act?  Would you recognize  someone who suffers from mental health issues?

Did you know 100% of people encounter or have experience with mental health issues every day?  That means everyone.  Everyone has been sad.  Everyone had been depressed, or anxious, or worried about something so much that they felt sick, or sweaty, and everyone at some point will either know someone or be the someone that questions their existence and struggles with that.

On Tuesday nights at the ACH, they have bingo for all of the patients that can come off ward, and that stay overnight.  Parents come, nurses, caregivers, etc. and sit with the kids while they play.  The prizes are amazing, and in the 1.5 hours they play, they manage to give almost every patient a prize.  Anyone can play, but only patients can win.  Every Tuesday night the mental health unit joins in the fun, but they’re usually late.  It always seems to take extra time to gather everyone up, and make the trek to the cafeteria.  The lady on the mic announces “Hey, lets welcome the mental health kids”.  It’s quite funny actually.  I’m not sure what the people expect to see, but the parents hold their kids a little closer, everyone turns and looks, and all of the kids come and join in.  I was joking with my daughter one night, and said the kids should drag their legs, drool, and start beating up on each other or screeching.  We had a good laugh about it.

I really think that is what people think.  People with mental health look strange or scary, are unpredictable, and you never know what they’re going to do.  On the contrary really.  People with mental health issues look just like you and me.  They are.  Just you. Just me.

The thing I admire a lot about the mental health kids is that they get to work really hard on discovering who they are.  They are the kids watching Dr. Who, coloring their hair bright colors, wearing teenage back packs with teddy bears, sporting super hero logos, painting their faces, doing a spontaneous dances, cos-playing and so much more.  Do you ever feel like some days you should just be wearing a cape?  I do.  I wonder what people would say if I did?  Truth be told, I’m chicken.  I know how harsh people and they’re judgements can be.  And then what?  Sadness.  Depression.  The inability to experience life as I want it to be.

There’s another person I admire – my fiancé.  He wears Mr. Potato Head t-shirts, and converse running shoes – a different color on each foot.  He breaks in to spontaneous dance in the middle of a subway station, just because a good song is playing.  He also wears a pin on his lapel each day, to support something he feels passionate about that day.  He loves with an open heart, and does not ever judge.  I wish we could all be like that.  Wear different colored shoes.  Sing happy songs.  Love passionately, without judgement.  Perhaps then there would not be any mental health issues at all, because we’d love each other so much.  Can you imagine a world like that?

1 week from now is our discharge date. A sobering thought in some ways, and yet the longer she stays in, the worse she gets. We’ve been given a date twice before, and each time it resulted in near disaster. Those trials led to a series of bad decisions that will forever be etched deep in my soul.

I remember having each one of my 3 children. I loved the baby stage so much. I loved holding thdm, snuggling up, rocking and singing them to sleep. If I didn’t want them to do something i just picked them up and changed directions. I never had to worry about them getting in to things as long as they were out of reach. They all loved playing outside but always stayed close. Taking care of them was pretty easy. The words “don’t touch” was all it took. Same baby, different circumstances.

I had a piano student once that was a mom of 3. She was tired and a little bitter, and when she met my kids she said to me, “Just wait till they’re older. It’s not so much fun then.” I’ve never forgotten those words I was so horrified that someone could speak so poorly of their children. It’s funny how we judge when we don’t know the whole story. She used her outside voice to express the pain she was feeling on the inside and I didn’t understand. I think I understand now a little of what she was saying. I have never felt resentful of having children, but I am guilty of muttering, “I’m too old for this s**t” in the middle of an escalation before.

As I look around my house, and the constant disaster it’s in I wonder to myself, “ How did things get this way? Is this all because of the divorce? I worked too much, wasn’t there enough. How in the world do I fix this? I hope it’s not too late. It just can’t be…….” Time to prepare for the return.

There’s no possible way to hide and remove every danger from your house. No way to get rid of every sharp or potentially sharp item, and every string or cord longer than 3″. I wish I could barricade doors, put in alarms, nanny cams, voice recorders, baby monitors, motion sensors, automatic locks, electronic property barriers………sounding paranoid? Not me, nope, lol! Reality is, there no way to get rid of it all, make the whole world safe until her brain develops enough to understand, we don’t always need a reason to be alive – we can create our own reason.

That’s what I’ve got to do. I’ve got to help her, we’ve got to help her create her own reason important enough to be here. She needs to believe.

How hard can it be?

As you get closer to discharge, the hospital will start trying more overnight passes, and try and get your child home safely. In our case it’s a little tricky, because my daughter has been there so long, she’s more institutionalized. She’s forgotten things like chores, washing dishes ( no dishwasher, so that means really, wash your dish!), sharing a bathroom and other shared social graces. The idea is get them home, do normal things, and see how they react. You get things set, perhaps plan a special meal, and fingers crossed, you might even forget there’s any issues.

A dear friend had made a special lunch for us. We stopped on the way home to pick it up, and I was truthfully super relieved not to have to worry about cooking when I got home. Now in a normal situation you would think nothing of jumping out of the car and running in somewhere with a teenager left to wait in the car, but in this case, that could be the difference between ……well let’s not go there. I took the small chance (building trust – tefrifying) and got the meal – it looked beautiful and I was so excited. When I got back to the car, I was told my phone rang twice. I looked at the missed call and it was the hospital. “Why would they be calling? I have her with me. Seriously?! Did they see me get out of the car? Am I being watched ?”

“Yes. I see. Ummm yes. Ok? Do we have to come back? OK then. I will in awhile. Yes, I understand. That’s not likely. I’ll let you know. Thankyou.”

Pretty obvious at that point there’s an issue. The nice day we’re having now has a hiccup. As if it wasn’t hard enough having an small escalation the night before, now we have to deal with something else.

Apparently, 1 in 3 kids is cutting, or has at least tried. Word on the unit was that my daughter had been sneaking in sharps, taping them to her body and then self harming on unit -probably at night, but most likely the night before. I now was stuck with the chore of questioning her about the whole situation and trying to find out if she was injured and needed care.

How do you tell if your child is cutting? It’s very hard because they’re sneaky creatures and very good at hiding. Are they wearing clothes that are loose fitting or long sleeves when they wouldn’t otherwise? Have you noticed the first aid kit out, if you have one? Have you noticed a request for pain killers or your child avoiding hugs or personal contact? These could all be signs that something suspicious is going on. Instead of bullying her with a bunch of questions I was very matter of fact. I then drove to Walmart and went to the first aid section. The look on her face was one of surorise, especially when I said to her “tell me what you need. If you won’t show me the wounds, at least tell me what you need to keep them from getting infected.” She was reluctant so I reached foe the alcohol swabs. “No, those hurt.” She reached for the gentle bandaid cleaning anti sceptic, some polysporin, and latex free bandaids. Once we got home, I let it go for awhile. Another call from the hospital, angry texts to me from her dad – seriously everyone, this is hard enough as it is – give me a chance already! At one point I thought we would be making a trip back, but each time she managed to use coping skills to recover, and she did. Listening to music, looking at pictures of puppies and kittens, talking with her brothers, having a snack – all distraction tools to move beyond the pain. The fact is that whatever had happened the day before was still with her, and the pain of that was real. Bed time comes along and it’s shower time – another trust building exercise. All went well but after was when I had chosen to talk. I needed to pick a moment away from anxiety that I could get real. The choice was given – “you want to build trust? Let me take care of the wounds, or at least see them so I can assess if further care is needed.” I don’t think I was very popular at that moment, but she reached out to me, and I did what a mom does. I stayed quiet and cleaned the wounds. Perhaps others would have scoled, shrieked, cried, been upset, but not me. No room for that here. This is one time to keep my emotions to myself and just deal with it. Bedtime. All is well. Late night check in – very scary. “ Dare I look? I’m sure she’s sleeping. What if she’s not? Nah, i have to trust. This is ok. Shes ok. What if……..?” Deep breath. Look around the corner – sound asleep. Whewf. We’re good. Trust is going g to be a huge difficult endeavor. Should I get a nanny cam? Baby monitors? Or do I just inch forward, blindly hoping for sucess. I don’t think there’s a right answer. The big thing here is building trust with eyes wide open, and hopefully not being caught off guard. Hopefully.

There is so much to write, and so much to tell, I’m just so tired I can’t remember what I want to say, so I’ll keep it short this time.

You don’t know what that person is going through behind the smile. You can’t imagine the calm face that lady is trying to keep while she hears news on the phone that she doesn’t want to know. How many people around who do you really know? Really. Do you have any clue what’s happening in their life?

The reason we don’t know is because sharing is a sign of weakness. We’re scared of judgement and disapproval. It’s just so easy to throw out a statement based on what we think, rather than what we know.

I won’t preach on. My current state in life does not make me a bad person or a bad parent – just a regular person trying to cope with an extraordinary situation .

Hug someone.

Love someone.

Encourage someone.

Bake something for someone.

Stop the judgement

There is so much to write, and so much to tell, I’m just so tired I can’t remember what I want to say, so I’ll keep it short this time.

You don’t know what that person is going through behind the smile. You can’t imagine the calm face that lady is trying to keep while she hears news on the phone that she doesn’t want to know. How many people around who do you really know? Really. Do you have any clue what’s happening in their life?

The reason we don’t know is because sharing is a sign of weakness. We’re scared of judgement and disapproval. It’s just so easy to throw out a statement based on what we think, rather than what we know.

I won’t preach on. My current state in life does not make me a bad person or a bad parent – just a regular person trying to cope with an extraordinary situation .

Hug someone.

Love someone.

Encourage someone.

Bake something for someone.

Stop the judgement

The decision had been made – ADTP (Adolescent Day Treatment Program) would be the way to.  The question was – when?  Our counselor was told the waiting list was 5 weeks.  A different counselor said it could be 2 weeks.  I remember the Dr. saying she had connections there….how do they make the decision anyways?  The reason we were going there was because my daughters diagnosis’ were so serious, going straight home with no support would be a bad choice.  We’d already spent 5 months in the hospital – if there’s a 5 month wait…….I didn’t even want to think…….

We got a call from the hospital about an appointment at ADTP the next week.  We would be meeting with one of the psychiatrists to see if she would be a fit for the program.  “Wait a minute, I thought it was already decided that she would be going there?”.  Once again, the disconnect between programs and communication was showing.  “Oh well,” I thought.  “At least we’re getting in the door”.  We were told the appointment would be an hour and 45 minutes, given instructions, and to make sure we didn’t miss.

I really didn’t know what to expect.  More counselors, psychiatrists.  Changing teams.  Change – never, ever an easy thing – especially with all of this.  The last time we had a change it did not go well at all.

The day came and I picked up my daughter at the hospital.  I was determined to be early, however it is never easy to get out of the ward.  You go over safety plans, sign a sign out sheet, talk to nurses……eventually you get out.  We got to location – a little strange but hey, we could do this.  We walked up to the door, and pressed the buzzer.  Shortly after heard a click, so I tried the door and it opened.  Once we got inside we didn’t know which way to go….up or down?  We decided up, walked through another door, and were asked to sit down and wait.  I had been so eager to be on time, that I had mistaken the appointment for 30 minutes earlier than it was, so now we had to sit and wait for 40 minutes.  That’s ok – we could wait.  Eventually a lady came out, and asked my daughter to go with her.  I got to sit and wait, longer.  I didn’t bring anything to do this time, so fortunately they had some magazines to look at, and I hadn’t used up all my data yet, so fb was always an option.

An hour and a half passed.  What could she be talking about?  What was she saying?  I thought we were through this already.  Eventually I was asked to come in the room.  They psychiatrist told me the words I wanted to hear.  “We need a 1% glimmer of hope from our patients.  I got that today, so we’ll take her in to the program”.  Music to my ears!!!  The next words were some of the most frightening I’ve heard for awhile. “Due to the severity of the issues we’re dealing with, you – we all, are going to have to be vigilant with the safety piece.”  Vigilant.  She was saying that until treatment is over – and beyond, we would not be able to take our eyes off her.  I don’t mean following around, watching everything she does, but it does mean never, ever being left alone.  “There may be more readmissions along the way, and we may have to stop and start, but we will hold a place for her.”  Readmissions?  We’re just starting to talk about the D word, and now I’m already planning to have to take her back?

When you take your child back, I’m told you have to do it from scratch.  All over again.  Emergency.  Waiting.  No guarantee on the same Dr., or even the same location.  ACH may not even be where she would be……………Oh well, I’m not going there.  I refuse to let my mind hover over something that isn’t even happening yet.  Let’s take this 1 step at a time.

Through this whole process, I have been thinking about relocating and trying to make sense of steps going forward.  One of the biggest things has been where do we live?  Seems to make sense that we should probably move to the city.  Closer to hospitals, closer to programs,  closer to my fiancé, closer to my family for support – just seems to make sense.  With one word that all changed.  Vigilance.  Where we live, it’s pretty hard to get lost.  There aren’t a whole lot of places to go.  No trains, busses, no public transportation, and the hills around the town are too exhausting and time consuming to climb.  At the very least, they’d take time to get past if you really wanted to get somewhere.  How easy would it be to get lost in the city?  I can’t even imagine going through what we have in a large city.  I would have had no idea of where to look. I have seen first hand, how effective our search and rescue is when called in to action.

Vigilance.  Like having a new baby.  So many things to think about.

The best thing is that there is support out there, and fantastic programs available.  I’ve even heard of new ones that are being created right now that are even more specialized.  Listen to the professionals, take time to think, and then follow your gut.  I don’t think we give ourselves enough credit, or else get just too tired to figure things out.  Listen to your heart.  You’ll know what to do.

Here is a typical example of one of my days since this whole ordeal began:

0400 – Can’t sleep.  House feels weird and brain won’t stop

0600 – Get up and get ready for work

0700 – Work – a few hours till my break

0930 – Hospital calling – it’s my daughter – (usually a good sign if it’s her)

0945 – Break over – work again

1300 – Lunch break / Counselor from hospital calls.  Update on progress or lack there of

1330 – Work again – pray phone doesn’t ring – hate the afternoon calls.

1500 – break – check emails/ phone messages.  Call hospital.  Why?

1630 – work done – stay longer and get extra stuff done

1800 – head to hospital for a visit or head home…….or stay and work some more.

2000 – call my sweetie and hope he’s able to chat

2100 – dinner.  Talk with hospital.  Update from my daughter and nurse.  Discuss any plans/appts for the week. If I’m not at home already, head home

2200 – laundry, scan fb, dishes (yeah right), answer emails, plan the next day

2230 – son home from work – chat for a bit – pray no call from hospital

2300 – accidentally doze off in my chair

2330ish – head to bed.

When I look at it, it sounds like just another day.  Mix in there calls from psychiatrists, extra clinics, nurses asking questions, escalations, consultations on medication and treatments,

Things have changed a bit now.  We’re working on the new program, and I have to do the driving at first, so we could add in a trip to the city and back in the morning and late afternoon.  Family counseling.  Group counseling.  Trips back and forth to ACH. We have some weird stuff happening with my daughters feet now too, and that means trying to get some attention from a different Dr., which can be like pulling chickens teethe.  Mental note to self – call hospital again in the am and ask for the consult again.

This is a little of what you will go through while you’re engaged with the Mental Health Unit.  How much or how little you’re involved is up to you, but I will tell you, the more you engage in the treatment, the more you will learn.  There is just so much to learn.

Don’t give up.  Things will get better.  Reach out for help.

The week after my daughter was admitted to hospital, I decided I needed to talk to someone, so I found a local counselor that I could go talk to.  I think the first session I spent about 2 hours there, crying my eyes out on her couch in dismay.  There were 2 main things she said to me that stuck in my head: 1.  Follow your mother instinct and do what your gut tells you to do, and 2. reach out for help to your friends and take care of yourself.  I took that first statement very seriously.  I felt I needed to be there at the hospital every for support  to show I was there for her, so I would go every single day after work, on days that I didn’t work, and would spend all my time there till 9 pm every night.  I’m pretty sure my boys forgot who I was during that time.  As the treatments strategies changed, I went whenever I was allowed and always made sure that I was flexible to be there.  Pretty much everything was taking second seat.

I went and saw the counselor again one, maybe two more times, and then just ran out of time each week to go anymore.  I was working, trying to spend time where I could with my boys, working more, and spending the rest of my time at the hospital.  I hardly saw my fiancé, and our plans pretty much got put on hold because of everything that was happening.  It was life was just humming along and then everything came to a screeching halt.  For each of those subsequent visits the counselor asked me what was I doing for myself, and who had I asked for help.  I told her I asked my dad to cook something for me (lasagna), and I asked a friend of mine who’s a foot care specialist for a free treatment because I couldn’t afford it.  That was huge.  2 big asks – I thought I was doing pretty good.  I didn’t think I deserved to be goaded in to more, after all, I’m a giver, not a taker.

I have always found great joy in giving, whether it be my time, an actual gift, a donation, or even just a smile.  Giving brings me great joy.  Receiving has never been easy for me.  My mom always told me that if you don’t receive graciously, you rob someone else of their blessing.  I’m super great at giving and telling people they’ll rob me of my blessing if they don’t receive (*chuckle*).  They usually roll their eyes at me, and then on we go.

Part of having a child at ADTP (Adolescent Day Treatment Program) is attending the mandatory Caregiver Support Group.  It’s a session only for the parents or caregivers intended on helping with the things we’re dealing with through this mental health journey.  Our first session was this week.  It was incredibly awkward, sitting in a room with a lot of parents, and my x, talking about our feelings, and learning about some of the things they teach our kids.   I sat and listened to the other parents speak, and if they’d done their homework from the week before.  What was their home work?  They were to reach out to a friend, and ask for help.  Almost every one of the parents in the room talked about how incredibly hard it was to do, and about half of the parents didn’t do it at all.  The new parents had to share a little, and speak about what help we’ve asked for along the way.  Not one of us had much to share.

I have received help along the way.  Two friends sent me a small sum of money, allowing me to pay for a parking pass, and also to pay for a new sticker for my license plate so I could continue to drive.  That $75 was a gift out of the blue that I was incredibly humbled to accept.  Someone at Christmas anonymously bought me a new stove after they found out I hadn’t had one since May of last  year.  I had spent so much money on medication, treatments, and everything else that I couldn’t afford a new one.  I cried so hard I was speechless.  An anonymous family heard that we were struggling and bought some gifts for my kids and delivered a turkey, also at Christmas.  Little did they know I hadn’t bought a single gift – I had no funds to do so.  I still don’t know who those people were – and was tremendously blessed by them.

The question was still looming.  Who, have you actually asked for help?  Any kind of help.  A walk, a meal, someone to watch the kids while you take a break (not applicable in my case), a massage, coffee, parking passes, lunch, help around the house.. anything.  Who have you actually asked – and mom doesn’t count?  I couldn’t answer.  I don’t ask for help – just really not good at it.  It makes me feel weak, needy and actually makes me feel horribly guilty.  Plus, then I have to talk, and explain, and I’m just far too tired to do either.  I’ve been told so many times by people in my life, that if I need any help, just ask – and yet I truly wouldn’t really even know what to ask for.  I’m a strong adult.  God gave me hands, feet, a brain – I should be able to do this.  There are people far worse off than I that need help far more than I, and I should probably be helping them.

At the end of the group, we were given home work.  First, for the newbies – ask for help with something.  Secondly, chose a self care activity.  The second is easy.  I just so happen to have booked the next 10 days off for vacation (my boss made me but it still counts). I ordered a massage gift certificate with my airmiles, and I plan to take it.  (There’s about 100 things on the list we can choose from).  I am going to go to a movie – at some point.  I’m going to bake something – and not burn it. So there – that’s 4 things  – and all I have to do is complete them.  My boss forbid me to walk through the doors of my store over the next 10 days – so that shouldn’t be hard.  All I have to do is call on the certificate – should be easy.  I have a free movie ticket I’ve been saving – piece of cake!  Baking – that shouldn’t be too hard – I have 3 bananas turning black on my counter – just got to do it.

That brings me back to my first bit of homework.  How do I ask for help?  What do I even ask for?  What would you ask for – if you were in my place?