routerecalculation

Well today is the day. In 2 hours I will be picking up my daughter after 4 months and 23 days. It’s hard to believe because there are so any times we could have derailed, but we made it. 3rd time is the charm. They will have a rock ceremony for her, we’ll get prescriptions and then go home. No more parking passes, no walking the halls of the childrens, and no more late night calls from nurses.

This is it. Time to put in to play all of the things we’ve learned in therapy. We now go from constant watch and Q60 check ins, to creating our own routine. The question will be “How much is too much?”. For now, program pick up and drop off will be at my work. No home alone time. Regular safety check ins, and regular monthly visits to our pediatrician will be scheduled. Counseling and psychiatric care changes to ADTP. Sharps, meds, and alcohol locked away.

I realize we will have better days and worse days. I watched her restrict food for 2 days this weekend, and then recover on the 3rd. I will have to try and separate regular teenage behavior from things that may be signs of a decline. I know I will also have to decide……….when do we return. I think we are learning some of the triggers, but unfortunately I can only do so much. She will have to learn what to keep or allow in her life, and what to restrict or get rid of. In a way, it’s almost too much for a 13 year old, and I so wish I could stop time a little and just put a little time between now and the tough stuff. Just let her progress a little bit, you know?

“Hi, mom? When are you coming?”
“They said 10……”
“Can you come earlier? I just want to get out of here.”

I’ve been waiting to hear those words for a long time.

Scared. Happy. Nervous. Light headed. Now my real work begins. Fasten your seat belt folks. It’s going to be an interesting ride.

1 year ago my daughter started complaining about stomach pain.  It was a daily nagging ache in her stomach that we couldn’t explain, so I took her to Urgent Care in our town (small town equivalent to Emergency) to get to the bottom of it.  She was complaining a great deal, doubled over and pale, so I thought this would be the right move.  We headed over, and the waiting regimen began.  We eventually saw a Dr., who ordered xrays, did vitals etc. and waited more.  Eventually the results came back, and the Dr. said she was constipated.  All we had to do is up the fiber, drink more water and get things moving.  Good to go.

Two weeks later, we were back again.  This time after the xrays, they said things were cleared out a lot more, but to keep it up.  Give Tylenol for pain if necessary, but just keep up the water and fiber, perhaps add in restorlax (similar to Metamucil) and things should be good.

A few more weeks went by, and the pain was still there.  It usually hit at night, and would get worse and worse.  I tried establishing a pattern.  Could it be hormones?  Food?  Surely not – she eats, that’s ridiculous.  Stress?  Bullying?  A close friend of hers had just moved away, and that seemed to make things worse.  I was thoroughly convinced that this was it.  (Later I found out this girl had been the source of severe bullying for 7 years).

As the months went on, we ended up back in either emergency, or Urgent Care, with each visit been at least 8 hours or longer.  I spent many of those visits in a chair trying to lean my head on the counter and sleep.  We went back 18 times between February and August and even went to a psychologist.  The pain continued to get worse, and worse, and worse.

Every Dr. had a different explanation.  One told us adolescent abdominal migraines.  One said it could be crones and we were scheduled for tests.  Another said IBS – referrals to the GI clinic were based on the level of emergency and had a 6 month waiting list.  One Dr. said this was something she would just have to live with.  We would have to get used to it.  That night I remember specifically, and I’ll never forget it.  We were both so discouraged.  She slept with me that night and she cried herself to sleep.  Once she had finally fallen asleep, I then took my turn.  The tears flowed a long time that night.

Again the pain came, and we ended up in Urgent Care.  This time, the Dr. gave her IV meds – Toradol, Naprosyn, and even 3 shots of Phentanol (extremely addictive!)  This actually seemed to take the edge off, but the only problem was that because it worked once, she wanted it every single time.  The last time we visited the Emergency department for the stomach pain, a senior Dr. came in, and said although every single test was negative, we needed to realize that she was glucose intolerant, and that all the problems were stemming from her diet.  We needed to go at least 2 months gluten free and then reevaluate.

I spent a ton of money.  Medications, imported temperature sensitive probiotics, essential oils, gluten free food, specialty teas, books, cookbooks………everything I could think of, yet nothing was working.  Plus, on top of the stomach pain, we were getting arm pain, chest pains, headaches….it was overwhelming.

After she was admitted to hospital, they started testing for the source of the pain.  They even wondered at one point if her heart was failing.  After months of testing, counseling, psychotherapy, group sessions, and more, they discovered that the pain was purely the result of extreme stress and anxiety, and malnutrition didn’t help either.

She’s been on a 2 day trial home.  Yesterday was pretty good, however she discovered after reading a pamphlet in my purse, the side effect of one of her meds is hunger, which made her upset.  She hardly ate yesterday.  Breakfast today – ½ cup of Special K with a glass of water.  The pain is back.  Requests for painkillers are starting already.  I can’t tell you how frustrated this makes me.  All the feelings of those nights in emergency, all those different opinions, and all of the exhaustion comes flooding back.

I know the cause.  Stress.  Anxiety.  Ugly, ugly stuff.  The challenge is how do I figure out the trigger and deal with it before it get’s bad again?  She knows deep down it’s stress, but either can’t or doesn’t want to admit it.  Dealing with the cause can be as or even more painful then the pain itself.

I have to be patient and not let frustration get the best of me. We have a long way to go.

For 5 months now I’ve had to contemplate what life will look like once my daughter comes home. How will it feel when she’s here? Will things be the same? What should my expectations be?

There are many different ways I could probably look at this, after all, there is no hand book. I feel like I’m writing one as I go.

We’re in day 2 of our trial weekend home. One of my bigger fears has been letting my guard down too quickly, and I hope I’m not failing at that one. When you see your child acting “normally”, you forget, then the sleeves come off, the healing wounds and scars from the past show, and the quick reminder comes back that we’re not done with this yet.

The other side of normal is paranoid. “Is she eating enough? A broken plastic spoon? Strange? Where is the other half? Has she been out of sight too long? How long is too long?” I find my mind flipping between the rational mind and the emotional mind, when really it needs to settle in the middle at the wise mind.

It will take time to create normal in our house hold again. I will no longer be able to sell real estate as I can’t be away from her anymore. That makes it pretty hard to show houses, so after 10 years, I’ll be closing that down and will have to find a new way to supplement my income. Simple errands like running to the store will have to be more carefully planned trips together. Technology will have to be managed and handled differently with a turn in time at night. Safety check – ins now will have to happen. Simple questions like “feeling safe?” are now really important.

The wonderful thing about all of this is that planning and spending time together can be a really fun thing. We’ve always wanted to spend more family time together, so my fiance and I will now plan more family centered times on the weekend, and try to think of ways to engage these teens in something they find interesting. It might boil down to blankets, popcorn and movies, or a trip to a best kept secret restaurant, and may even a drive to Banff once we’re feeling more confident and adventurous. Travel is not recommended for 6 months to a year after something like this. I’ve seen parents disagree and take their kids on cruises or family trips, having to end short and bear the expense of an emergency trip home to hospital. How far is too far? That’s the question.

Meal times are different now too. No more eating in your bedroom or out of sight. Food is a tool now, used as a control piece, so attention to it has to be minimal. Finding vegetarian food that tastes good, has enough protein for a growing teen, and doesn’t get wasted is a new challenge. Plus, making sure my son gets what he needs also needs to happen so this will take some serious planning.

My work routine will also have to change, so thank goodness I have a tremendously understanding company. After this long of thinking, it only dawned on me yesterday that I may have to bring her to work in the morning to be picked up there. I can’t leave her alone for the 15 minute gap between when I will start and when she will be picked up for school. At least not yet.

I’m sure there are many more things that I will recognize along the way. Awesomely enough I’m feeling supported by family, friends, and work which makes a huge difference.

There is so much help around, and people willing to reach out, all we have to do is ask. Things will become routine again. Life will feel regular. I’ve hopefully learned enough to press forward with eyes wide open

5 days and counting. I thought I’d be feeling really happy, but I think my fear is standing in the way. Truth is I’m scared. Quite scared.

I remember reading a book when my kids were first born. It listed all the things you should have around, what kind of medicines to have, handy phone numbers, all the little things you should do to prepare for the new baby.

There is no book for this. No hand book. No prep guide. No real “guide for the depressed, self harming, anxious, eating disorder, vegetarian teen”. What a title that would be, eh?!

I made some appointments this week, during my staycation, to learn a little more of what I should prepare for.

1. Have an emergency number of a close by friend in case of escalation. You may think you can handle it on your own but you might not.

Done. Messaged a friend from 20 years back and we programmed numbers in yesterday. She lives around the corner. Very fortunate.

2. Start a food train. Ask someone to organize week night meals for the next while so you don’t have to worry about that and can concentrate on what you need to.

Done. Asked the same friend to help. I’m horrible at asking but will need to ask someone else on this too. I really hate asking. I much prefer helping !

3. Remove all alcohol from the house or from access.

Almost done. I don’t drink much so this is easy.

4. Remove all vitamins and medications from reach or access.

Almost done. 1 bottle of Tylenol left to lock up.

5. Sharps. Remove all knives, razors, and dangerous cutting tools from reach or access.

Not done. This one is a pain because it seems so ridiculous and unbelievable. Will be done this weekend.

6. Emergency numbers. Program in emergency numbers to the phone for easy access. Hard to think when you’re panicking (or trying not to).

Never took myself as the panicking type. I’ve always been pretty calm, and even animals chill around me. At that moment when you’re standing in a field screaming at God, you’re panicking. Numbers are programmed in.

7. Emergency kit. Have a small bag already packed with necessities for the hospital in case of quick return. Pack toothbrush, deodorant, contact stuff, granola bars, magazine or book, pen and note paper.

Almost done. The pen and notepad is important. They tell you so much stuff and your brain is overwhelmed so it’s hard to remember sometimes.

8. First Aid Kit. Throw out expired stuff and get antiseptic, ploysporin, bandages, etc.

Done. Self Harm is an epidemic. Trust me. This is like a virus and has become the way of choice to express feeling. People don’t believe me when I say how rampant this is. Don’t let denial fool you. Watch for the signs. I NEVER would have believed this was happening if I hadn’t seen it with my own eyes.

9. Gas up. Don’t leave your tank empty.

I’ve always done this, perhaps because of living outside the city. Last thing I would want is to need gas at 2 am and not have it. I’ve even searched the couch for change sometimes to.make sure I at least have enough to get there. An ambulance costs $490 from where I live to the city and they don’t let the parent ride along. Best to be prepared.

10. Support chain. If you need it, have a number you can call to put family and friends in to action.

It takes a village to raise a child – at least that’s what I’ve heard. That saying didn’t really come across clearly till now. I’m fortunate because my son at home is 18 so he doesn’t need much care, however this is extremely stressful on him as well. Put people in to action around you to help support, make calls, and whatever else you need. A simple check in can be all that’s necessary sometimes.
I don’t know what the future holds. I want to be optimistic but quite truthfully, I’m terrified. I’m scared of letting my guard down too quickly. I’m scared of the what ifs. I’m scared I won’t do the right thing. I’m scared of being judged. I don’t want to go back again. I don’t want to keep doing this. I don’t want to cry anymore.

I’m just scared.

Take a deep breath. Put on the cape, however thin it may be and stand tall. Be brave. You can do this. I can do this. We got this.

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