Today

Today I sit and wait.......yesterday, I didn't have that opportunity.....she was frantically crying at our bedroom door while Don was dressing for work....the day before she came upstairs looking for me just after he left for work....today.....Don left about fifteen minutes ago....and I'm waiting.

Yesterday,as Don left for work...I sat her down in front of the television....thankfully Olympic programming is on...instead of listening to the inane pre teen programming that we are forced to listen to with three developmentally delayed adults in the house, we listen to sports.....hockey....ya, I know...my older kids would have a laugh about that...I.normally hate hockey...I never let my boys watch it while they were growing up....ya, I know ..in Canada that's got to be against the parenting rules ....but I hate the stupid , immature fighting that the crowds seem to perpetuate with their hollering.....I'm sure most of it has to win the hockey players the drama award......I never felt it was a good role model for my boys...this immature fighting at the drop of a stick....then all of a sudden my boys would be copying them and I would turn the hockey off.....but now, it's Olympics ....fighting is not allowed....I still don't understand the extreme pushing and shoving into the boards...seems kind of violent instead of just using athletic skill to be the champion....anyways...I digress....the hockey is playing...two countries that I rarely if ever think about, but it keeps her occupied.....occupied, while I make her breakfast, assemble all her supplements,....pills and capsules that we hope keeps her healthy while her mind is locked away.....somewhere......

Her breakfast is ready and I break another rule...I let her eat in the living room, in front of the television...it seems to preoccupy her and she eats without being prodded as we have had to do the last few days.....it gives me a few extra moments that I don't have to repeat myself three times before she completes the simplest of tasks......
'Put the lid down, Maya...no, Maya , turn and face the toilet, and put the lid down, ..Maya! Put your hand on the toilet seat lid, now ...put it down....that's it...now flush the toilet....no, put your hand on the handle and push it down....down, Maya, down....that's it.....now come over here and wash your hands.....get them wet....and now put the soap on....rub it in good...yes....now rinse the soap off...rinse the backs of your hands.....rinse...there's some soap there....okay....now dry your hands....no, that's your face...dry your hands...no, Maya...your hands ...not your face, your face isn't wet....oh, never mind...just come out of the bathroom.....'
Back to the living room we go, I gently push her down onto the chesterfield....in front of the sports that she loves so much....she sits....she cries, she laughs.....she keeps saying, I'm sorry,...over and over and over...or thank you, thank you.....

Yesterday, while we were watching the television.....we do a lot of that.....it keeps her occupied.....there's nothing else that she can do.....and I sit with her....when I get up to go somewhere....the kitchen, the bathroom, she calls my name in a panic.....nothing is accomplished these days....the house needs cleaning, meals are quick or get your own.....but yesterday, during her tears, she asked if she could pray....I said , sure.....she moved off the chesterfield to her knees and bowed her head, then her back...and she just sobbed...and I cried with her....and it reminded me of the bible verse that says something about not needing words that our God understands the groaning and cries of our heart......we don't have to utter a word...which was good because Maya isn't big on words and sentences these days....in fact she'll start a sentence...get two or three words into it and stop.....forgotten what she was going to say.....

Later, it was bath time......maya is usually willing to have her bath.....my friend gave me some nice smelling bath stuff for my birthday and I pour some into her bath water......when Maya was very little she had a favourite video...called'The Biggest Little Ticket Birthday Celebration'...she asked for it constantly.....in it there was a Happy Birthday song sung in kind of a jazzy way..she loved it! Yesterday, as she was getting into the water she started to sing the Happy Birthday song just the way they did in the video....I was very surprised...I hadn't heard it in at least fifteen years......to try to figure out just how her mind is working right now just boggles your mind...

Throughout the afternoon she watched Olympics, Don came home from work early...our youngest daughter had an appointment to get her needle..it would have been difficult to take Maya...I was grateful that he could come home. I left with Megan and Don sat down beside Maya, taking my place. I stopped on the way home to buy some more disposable underwear for May...she seems to have developed an incontinence problem this time....not fun...these make it a little easier.

I arrived back home an hour later, Don is still beside Maya, with his laptop in front of him, a text book beside him.....finishing up some prep for his evening class that he teaches at the local college. After sharing some tea together , he leaves again......not too late , he says.....around eight-thirty- nine.......bring milk I say, we are almost out.....

We went on with the evening, maya surprised me, asking to go on the treadmill...I said sure....she went down stairs...I didn't hear anything....I went to check and she was standing beside the treadmill, in the semi darkness, ....just standing......I turned it on for her and encouraged her to get on.....I started it up and told her I'd get her supper ready......while in the kitchen, I heard silence again...I went to check...she was standing on the quiet treadmill, looking confused....I started it up again.....

After supper, with her napkin from supper folded up in her hand, she asked to go on her computer....sure, I said...it's in dad's office...go and get it......she was gone for a bit...I went to check....she was coming down the hall , carrying my glass case from my bedroom......I decided that she wasn't ready for the computer yet ....so we sat back down in front of the tv.....

Don came home from class, he forgot to bring milk....he was tired too....we are all tired......he went back out to get the milk.....

When he returned, we started the bedtime preparations .....I found some pyjamas for her and got her changed.....helping Maya do these simple acts is exhausting and my arms and hands are aching, hurting. It's like working with a two hundred pound one year old. We gathered up her pills.....she takes a Benedryl to help her sleep, a Melatonin also, she takes her depression capsule...a little yellow one and , the night before and tonight we will give her an anti psychotic pill......I don't like giving her those.....they only have a positive effect for about five days and then the cause her to have very bad hallucinations....it's a very powerful medication but we are desperate....desperate to have our girl back, desperate to have our lives back.....just desperate.

The last two nights she has become very obstinate in taking her pills for some reason.....she takes all her morning stuff without a problem but fir the last two nights, she holds the pills in her mouth and refuses to swallow them...she will drink a whole cup of water and they will still be in her mouth. I tried feeding her yogurt , thinking that would help...it did minimally, and resigned to just letting the last pill just sit and melt in her mouth. Don made her Sleepy Time tea, and when she was done, he took her down to bed.

I went to get ready for bed, opened my glass case to put my glasses away, and there was Maya's folded up dinner napkin......

When he came back upstairs , we crawled into bed, two exhausted parents...in mind, body and soul.....Don barely said a prayer before we were sound asleep. Another day is done.....

........and now another day has started, Ben came to my door as I was writing this, maya was in the bathroom, she was calling for me.....I got up and went to her......so far the day is the same, she's had her breakfast, were sitting watching Canada trying to get a Gold medal in the curling.....

......another day......


~ Marie

Fear........something that plagues us, something that eats away and destroys our peace.....if we let it.....
As Christians we learn all about Fear Not.....the words that we put out there when we're uncertain, words that we cling to....most of the time we are able to remind ourselves of that , and as were swirling down the drain overwhelmed by the flowing water that we feel will consume us, that we will surely drown in, we hold on tight, til the water stops....til we can breathe again. Sometimes we feel our facial muscles will never relax again, ...but they do. 

As a mom, I try to hide fear from my kids, when they feel fear, I talk to them, talk them through it, talk them off the ledge, as one of my kids has said.....when I feel fear, I try to hide it, try not to show it, after all , they are looking to you for security and if mom can't give it then there's a problem. All their growing up years you try to mask, especially with the big things like surgeries, medical diagnoses, close relatives dying, employment in jeopardy, financial instability and debt....the list goes on.....the things you truly have absolutely no control over.....the only one I truly show it to is my hubby, my Donald.

This mental illness with Maya is something I truly have no control over ....it comes and goes as it likes.....so far she's been back from the Dark side , sixteen days.....she has started a new medication....this one not an antipsychotic but an anti depressant.....for the first ten days it was at the lowest dose, and then they upped it, doubling the strength...they said it would take a number of weeks to notice the difference. Meanwhile , Maya feels she's great....she spoke last week about getting sick at Christmas, two years in a row....it would seem that she is equating the two.....hubby and I have talked about how we need to get her over that fear, that self foretelling prophecy that it will happen Christmas, after Christmas...because, as we witnessed this past Christmas...if she believes it, her brain will make it happen...cause it did. It's a fear she lives with and I do too...as her primary caregiver when this happens, it affects me too....and Donald and the other two kids in the house and even to some degree , her two older sisters who help me when they can. 

We try to control our circumstances or environment so we don't feel fear. We keep busy, busy, busy...so we don't feel fear.....some people opt for sleeping...they sleep the time away and hopefully the fear will go with it, they hide from it through sleep. The trouble is that we can never control our life or other peoples....as a mother, if I could have done that then my kids lives would have turned out a lot differently then they have. It doesn't work that way though....we're all given this thing called free will, so even if their father and I would have chosen differently for them, the bottom line is their free will....I am not responsible for their choices, I am not a failure because they've chosen differently then I thought they should....but sometimes that finger of fear does wiggle it's pointy finger into your heart and brain and try to convince you otherwise.

Fear was the first thing that grabbed me in the grocery store on Friday night. Mama Cass was belting out the tune 'California Dreamin' over the speaker system....I WAS enjoying it....there's something about the music from your teen years that just puts you in a good mood.....when it was done, Don turns to me, with a sheepish grin on his face....' Oh ya, that song about California reminds me.....Don V. And I have to go back there again...in March'.... Right there in the middle of the aisle, the light hearted feeling I had had, seconds before , was gone...replaced by fear.....'for how long'........another grimaced smile..( there is such a thing, I saw it on his face......he wasn't just reminded by mama Cass about the trip, it had been on his mind and she just gave him a perfect set up for 'dropping the bomb....'a week' said he.....we finished the shopping in silence.........as we were driving home and the tears were silently rolling down my cheeks...I whispered ...'but what if Maya gets sick again...I can't do it alone....Leslie and Lauren are busy, they can't always help......what will I do'....the fear took over.

Through out the rest of the evening, as my mind worked through it all, I felt exhausted and worn out. I went on my email.....there was one from Don...I was confused...he was out in the kitchen , putting all the groceries away (it's a very long story just why he always puts the groceries away)....so when did he have the opportunity to send an email...ah...the ease of having a cell phone clipped to your belt......his email described a little get away that he's planned for April...I looked at it in despair because I knew he had done this to lift my spirits, to give me something to look forward to...he knows that's imperative for MY mental health...but all I felt was despair as I read the plans he had made...lovely plans, really...but at that moment I couldn't enjoy them...fear had taken over...

The next day dawned brighter, the next day I knew that what ever happens with Maya that I am not alone and even when there are no humans around to help me that there is One who never leaves me, who never forsakes me, who is holding onto me. I opened the email again and reread Don's plans...at first I had thot they were just preliminary plans but then he grinned and said that they were all set...and booked....accommodations, flights, and adult care...all set. I looked at him and admitted...'well, you just might have to pour me into a container by that point to take me, you know'....( meaning I just might be too worn out to manage it)... He just grinned. 

He really is a great guy.







~ Marie

Maya Continued

I sit in my bed, the house is quiet......hubby has been gone to work for almost an hour....Megan followed not long after for school....although she did try to get out of it...I did let her stay home for a few days when we had that extreme frigid weather last week. I really couldn't see allowing a young woman with a fragile heart condition to walk down an icy road, in the dark and stand at the side of the highway waiting for the school bus.....and for what ...a day of glorified babysitting? I think not.

Tiny snowflakes are falling from the sky that is streaked with pink.....what is that saying....red sky at night, sailors delight, red sky in morning sailors warning....is that an indicator of my day?

If it is then I would like to crawl under the covers and stay there....stay until when?....I don't know.....stay until my life is organized again....stay until the only concern I have is when Megan and Ben are going to be granted living accommodations in an assisted living situation. Ya, those were the days.

I sit in this quiet, as the day slowly unfolds around me....my first thoughts of the day, and continuously throughout the day, are of Maya.....

After eight months of not having a mental breakdown...she had one on November 9th of last year....it last for 31 days..31 days of me trying to still organize my life, carrying on, as they say....not giving up, trying to find the answers that even the professionals shrug their shoulders and look at you sadly, and say...'we don't have the answer'.

We had almost two and a half weeks after she finally came back to us....our beautiful , enthusiastic daughter would return from that dark side that she slips away to, that no one can reach her at....when she left again on Christmas Eve. She almost predicted it, was the author of her own destiny as she sat around the Christmas tree that night....we were going around , saying what we were thankful for on this Eve that we celebrate the greatest gift of all. I said that I was grateful for Maya being healthy....she looked at me and said....'healthy for now'.....she was so anxious about passing through this anniversary...no, anniversary indicates a joyful time....passing through this marker, this occasion....of a year ago when she slipped to the dark side for the very first time.

Hubby and I saw her slipping away , after everyone had gone to bed....her restlessness, her agitation ....her fear.....all too familiar to us now....and we were helpless to stop it.....helpless to hold onto her...

Life goes on...the next day being Christmas Day.....it was suppose to be a joyous day...and as you moved through the pretext of joy...some of the grandchildren were here....you did try to 'soldier on'...make the dinner, serve the dinner, open the presents..presents that Maya would hardly remember that she had gotten....

We took Maya to the Dual Diagnostic Clinic the first Monday after New Years....we were hopeful...Dual Diagnostic is for people that have a developmental delay plus a psychotic event.....yes, we were hopeful....Maya was 'on fire' the whole time, she was melting and getting very upset with us that we weren't doing anything about it. The doctor and his nurse were encouraging...he started her on yet another new drug...an antipsychotic drug...even though after several days they seem to have a bad effect on her....they felt her episodes were based on anxiety and depression.....they said.....they said that we would work with this and then when she was better, they'd start the grand juggle( my words ) to get the antidepressants and anxiety meds at the proper dosages, that she would probably have to stay on the rest of her life......but would prevent her from going to the Dark Side again.

We were all for it....something was mentioned about a follow up visit...we figured it would be in a few weeks....I was shocked when the appointment card came in the mail and it was MARCH 17!!!!!!!!

They sat there and commiserated with us, saying we must feel so alone, that they were there to help us and then the card says March 17!

I read some comments the other day on a site for a new place opening, they hope in 2015.....2015!!!! This is a place that some families are starting up for young people like Maya , where they can get the help they need...it's named after a young woman, with a similar story to Maya.'s . These parents want to help young people in this same predicament that find themselves being shifted around, and waiting, waiting....their lives and all the caregivers around them, who have their lives on hold. One comment said that the problems of young people today originate from them having too much, to doing too much for them, of not letting them grow up..one other said that we have a perfectly good mental health care system and people shouldn't be pouring needless money by seeking help elsewhere. ( the parents of this girl who the place is named for, couldn't get the help they needed and tried getting it in the states).

I was appalled when I read the comments..my son said , ' oh no, you never read the comments!) but I did, I couldn't believe it that these people were so ignorant about the situation and wanted them to come and stay in my home for a few days.....it's not that we don't want Maya to grow up, we don't want to treat her like a baby...but when you have to toilet, bathe, dress, feed and watch continuously lest they walk out the door in sub freezing weather in their bare feet....well, then yes, I guess we are treating her like a baby.

I laughed to myself when an email came into my box today.....25 Ways to Organize Your Life......right.

How to organize waking up every morning and patiently waiting for Maya to wake up, for looking at her face when she comes up the stairs, to gauge the response on her face as I brightly say, Morning Maya, how are you today? How was your sleep?

Yesterday, she responded a bit better than the other days, she actually got her own breakfast, started to get her vitamins and supplements out to take, she was saying full sentences.....the last few days she'd start with two or three words and then trail off....she got dressed in her own room( she usually gets dressed near me , in the bathroom, so that I can instruct her on each piece of clothing to put on)....she brought, from her room...all her art supplies she had requested for her Christmas presents ......I was getting cautiously optimistic that she was coming back......she helped me fold her laundry and made her own lunch...but as she sat at the dining table , with her supplies....she couldn't copy a poster that she drew from her sketch book to the canvas board....she had sketched in large block letters...I LOVE MY FRIENDS....she copied I
LOVE FRIEND.

The saddest thing about that whole exercise wasn't the fact that she copied it incorrectly but that she doesn't have any...friends that is....this loyal, fun loving, caring young woman doesn't have any close friends, no one that would call and check on her, no one that wants to go out to a movie with her ....why?..I don't know...friends she used to have , have moved on in their lives and left her behind and even though Maya makes friends with complete strangers, kids that she has known for years don't have time for her now. The acquaintances that she makes now , usually influence her to do things that are harmful to her ( she is easily swayed) or they take advantage of her.

We are at a loss to know how to help her.....when she is ' healthy' she is quite active.....cooking class, gym class, monitoring a university class , guitar lessons, youth group at the church.....but in all of this...not one friend that when she hadn't been seen in a few weeks, calls and says...'hey, I've missed you...what's going on?'

As the day wore on, and the sun set...she became more confused again...reminded me of the Sundowner affect that they talk about with Dementia/Alzheimer's patients....hubby worked late. He's back to teachings twice a week, in the evenings. He missed her doing well, because by the time he got home at 10 pm, she wasn't.








Maya when she's with us.








Maya when she's slipped away.

So, I sit here, writing this,waiting for her to get up....waiting for her reactions to the day....maybe someday I'll be able to organize my day 25 different ways...but it won't be today.



~ Marie

Maya

It has been a very long time since I did a post. This post , you may not want to continue reading.....it may become a 'woe is me' post...is that how you spell woe ? Have no idea and in my funk , I really don't care. You get the gist.

A month ago yesterday, Maya slipped quietly into a state of regression....again....after eight months of me watching every move, every action , every word, every sound, every look that came out of her, of being petrified of it happening again.........it did.

The first few weeks were filled with exhaustion as we took turns sleeping beside her...her on the living room chesterfield while us on the floor beside her.....believe me, when you're in your sixties your bones really protest over being on the floor. Sometimes she slept....usually it was in short naps and then she would be up again, talking a non-sensical talk....
During the day, after I made her food and encouraged her to eat, bathed her, dressed her, sat with her as she went back and forth between hysterically laughing or crying.....constantly telling her that she was okay....but she wasn't.

After the first two weeks, she seemed to be coming out of it....we were encouraged...but it wasn't without a horrifying incident .....Maya became violent...if you truly know Maya, you know that this goes completely against her personality altogether...Maya is one of the gentlest people I know. Even when people have treated her wrongly, she doesn't retaliate .....she forgives. This gentle soul turned into someone that we didn't even recognize .

That all changed one afternoon when I heard a 'NO' come out of her with such force that I've never heard before. That night , she poked at me, like she was testing the waters...not to hurt, but to see what my reaction would be.....

The next day, it got much worse, Don had gone to work and I was there with her......she started to escalate....when I would try to go by her in the narrow hallway, she wouldn't allow me to pass, when I would politely and in my most gentle voice, ask to go by she would scream no. Then she started the verbal abuse....she would scream that she hated me......sometimes she would come right up to my face, and in a low tone, angry guttural sound, forcefully say she hated me. She even went out on the front porch , in her bare feet..( it was very cold out) and screamed it to the neighbors.

In all this, I wasn't scared for myself but I was scared that she would start walking down the road in her bare feet, and I couldn't stop her. Maya is about eighty pounds heavier than me, extremely strong and towers over me in height. In this state , she did what she wanted to do. At one point, she wouldn't put her pyjama bottoms on after she had been in the bathroom, she refused. I was so emotionally exhausted that I started to cry and begged her to put them on. When she saw my tears, she immediately became contrite and put them on. It was at that point that I called Don at work and told him that she was escalating and needed to come home.

When he arrived, things became much worse . When he put his hands on her shoulders to try and stop her from going outside , she shoved him....hard...he went flying like a toy doll....unfortunately landing with his heel on my big toe, cracking the nail and causing it to bleed. Don called the police for help. After twenty minutes no one had shown up and since Maya had, at this point , become calm and docile, he cancelled the call.

We made the decision, with much difficulty, to take her into the hospital. We didn't want to but we had no idea what to do....we even at one point turned back, and came home, second guessing ourselves. We weren't home long when it became clear that we had made a mistake and needed to go to the hospital and get some help.

When we arrived, we told the emerg doctor that we weren't looking to have her admitted to the psych ward that she had been in last Christmas,....that we were just looking for some help, some medication for the aggression. He agreed with that but she still needed to see the psych evaluation team. We spent the rest of the day in that ward, while she was evaluated.

We left there at nine in the evening, two prescriptions in hand. I'm pretty sure that both scripts were administered when she was in the hospital last Christmas with poor results but they insisted that since the home environment is different that they believed that she would be fine .

For the first few days she was fine. In fact, she even went to youth group with Ben and Megan.....we were thrilled...until we picked them up and she was slightly confused and emotional....okay, that wasn't a good move...although leading up to it she seemed ready to go.....on her computer ( she always goes completely off her electronics ...computer, cell phone, iPod ....when this happens)....she even insisted on washing her hair! So, we agreed to let her go. It must have been too overwhelming because when we checked on her two hours later she wasn't doing well.

The next few days seemed to go well, she attended church on Sunday, sat with her friends....Monday and Tuesday went well...she was to go for a followup on Thursday. They had said to try her without the daytime meds and see how she did. I chose Wednesday to do that so I could tell them on Thursday what , if any reaction, she exhibited.

Wednesday morning I didn't give her the day time meds....the day went okay, a couple of things made me wonder but she still planned to go for her guitar lesson that evening. After her supper she went down to get her guitar and came up holding a tiny leaf that she was convinced had come through her window....she was in a panic. I immediately went and got her day time meds and gave it to her. She did not go to the guitar lesson , but spent the evening very quiet, the odd time emotional (crying) but watching television.

I berated myself for trying her without her daytime meds and the next day, when we went for her followup appointment at the psych ward, I was sure that they would confirm this. I was surprised when the doctor didn't...in fact, she said when things settled down that I should try it again!

The next few days were a fog....she was back on both meds......I even gave her them together at night to ensure that she would go to sleep...no, I didn't overstep on this, the pharmacist said they could be taken together because they each dealt with a different form of anxiety.

On Friday night, she really wanted to go through with the plans she had made, long before she regressed, with her boyfriend and her youth group to attend a performance of Aladdin in Toronto. We were unsure of this but she was quite upset at the prospect of not going, and we thought that it might make it worse for her if she didn't. We couldn't get an extra ticket so Don took Ben and her to the theatre and waited at a nearby mall in case she needed him. The youth pastor was aware of the situation and did text Don before intermission to say that Maya was asking for him. Don went to the theatre and saw her and gave her a daytime med since she seemed quite anxious but then she willingly returned inside for the second half.

The next day we had a scheduled trip to Petawawa to visit our son Paul and his fiancée ....they had just moved into their first house. Originally, it was just suppose to be Don and I but we couldn't leave Maya so we took her too. It was a whirlwind trip...twelve hours of driving in less than 24 and staying overnight in a hotel, but parts of the trip went well. Maya had the odd meltdown , but the scenery was very wintery and beautiful for the drive and it was good to see Paul and Sara and their new house. Sara's parents were also there and we all sat and discussed upcoming wedding plans.

We returned home on Sunday evening....we were quite tired out but glad we had made the trip. I think if it had been just Don and I, I could have easily convinced him to make a ( huge)detour on the way home, via Parry Sound to help celebrate grandson William's fourth birthday but it was better that we came straight home. This was the first birthday of William's that we have missed. :-(

As we drove it seemed that Maya was telling us about various hallucinations that she had been having of late. That got me to remembering that the night medication , when given in the hospital, ended up giving her hallucinations , after she'd been on it several days.
It dawned on me that maybe, just maybe it wasn't the LACK of the daytime meds the previous Wednesday but the build up of the night meds in her system that caused her leaf imagining. That night Don felt that we shouldn't give her the medication, so we didn't. In the following days, she still talked of some hallucinations but not as much and we figured it was just the meds leaving her system.

Last week, Maya kept asking when she was going to get better. I didn't have an answer for her, since this was going on much longer than the other episodes. Sometimes, she seemed in quite a fog, and quite discouraged that she wasn't getting better.

In the previous episodes I had only kept her on the meds for the first few days and then let her own responses bring her out of it....at this point, except for the few hours that one day, she had been on the daytime meds for two weeks.
I made the decision to try taking her off the day meds to see if she could come out of this.
The next day , Maya had a consultation appointment to see an oral surgeon for a tooth that needed pulling. I wasn't sure if she'd get through the appointment without the need for the medication but I thought I'd try. I took it with me just in case. Except for having to convince her over and over that the dentist wasn't going to pull the tooth that very afternoon , she did quite well.

At this point, we are taking one day at a time....compared to a month ago she is doing a lot better. She still isn't well enough to leave on her own unattended, or to attend her activities. I still have to lay out her clothes for her and prepare her foods but you can, at times , have a 'regular' conversation with her.

The only 'medication' that she is on is supplements and vitamins. When she was at the hospital two weeks ago, they did tell us that they had been in contact with a program that saw Maya last spring...they were going to refer her to a Dual Diagnostic clinic but so far we haven't heard anything from them.

One day at a time....that's all we can do...some days are more difficult then others, some are more discouraging then others....but that's all we can do. Mental illness is an insidious disease that attacks for no apparent reason....we have no idea why...Maya has never used drugs or alcohol....her lifestyle has been fairly innocent.....we'll probably never know why.


Added on Thursday, December 12, 2013
.........on Tuesday night, Maya started showing some 'normal' behaviour.....she actually went down to her room on her own, and put herself to bed......up until that night she always insisted that one of us come and 'tuck her in'. The next morning, I had to wake her up because we had to go out. When she came up she didn't have the vacant look in her eyes, she was focused and conversing normally...I was optimistically hopeful.
Wednesday went well, today was even better...I pray it continues.







~ Marie

Stealing your Joy.....

All the ladies are chattering in your little group...this little quilting group that gets together every Tuesday morning....we meet to share our work, to share some tea, to share our lives.....

I sit there , quiet.....it takes me a bit to get going....sometimes, your mind is swirling with so many details that it takes awhile to sort them out, you sit there , listening quietly, waiting for your thoughts to unfurl.......

Everyone is sharing, everyone is filled with ideas and thoughts that they want to reveal, some to share happiness, some to share sorrow, others their despair.....

I like to just sit and listen, the weariness of the day has already taken over and it's only 10:00 am,....have you ever felt too weary to talk, as the jumbled thoughts tumble like blocks in your brain, you make the conscious decision to not speak...it takes to much effort, too many details....if only you could just give the Readers Digest condensed version...maybe that would work...you run the conversation in your mind, just how it would go....and then you make the decision....no, I really don't want to get into all that.....so, you stay silent...pulling out your work....a quilt that has been worked on, on and off for two years...between other projects....you're determined to get it done....it's for yourself...you've never done one for yourself...you always give them away....I think that's why it takes so long to complete...there isn't the urgency...it's just for you.


Not every season of motherhood is perfect. Some are colder than others. Some burn straight through you. But those days of extreme make the ordinary average ones gleam with perfection and beauty.

I read that in someone's blog post today....the words jumped out at me......

'Cody saw Emma the other day'....the voice of another quilter breaks through my thoughts.....'he was so shocked....I didn't know she had blond hair'....'it's a wig', I reply......'oh..well, he was so surprised...she's lost weight and he says she was dressed......scantily, like.....' ' like a hooker', I replied....'well, ya', she said.
'Oh, Marie,' another said...'you just tell it like it is....just straight out there'...she laughed.

I didn't laugh...I just thought...ya, where did that come from....I'm a nice person....everyone says I'm a nice person....

My cell phone chimes...an email has come in.....someone thought I should know that my son, the son that has the worst Fetal Alcohol Syndrome of all my kids that have it....this person says that he was taken to jail last night...again....driving while drunk....again....ran over a pole, landed in a field...he was fine...his car and the pole were not.....

I am grateful that it was a pole and not a person.....I wish someone could stop him, some how, some way....they keep on arresting him, but he keeps on doing it.....

These are the burning moments....the moments when you become so cynical, the moments where you would like to say...' No more....no more'....you want to but you don't , because deep in your heart, you know that you don't give up, deep in your heart, they still have a place.....these kids who had their brains messed up before they were even born.....

Others, well they don't understand...they look on in disgust, they ridicule, they laugh.....you just keep all these things, and like Mary, ponder them in your heart.....sometimes you try to make others understand,.... they don't ....they don't live with it....everyday, everyday for almost thirty years....

Some people don't want these kids around them....yes, they feel sorry for them, but a lot point an accusatory finger, putting them down for their lack of control, their impulsive tendencies, their immaturity, and their negative behaviour.....to be honest....yes, they are hard to be around, but society wants the acceptable....not the unacceptable.....

You sit quiet while others are chattering round about you.....you know this can steal your happiness but you try not to let it steal your joy....

Like Ann Voskamp says.....


Let something steal your joy — and you let something steal your strength.



....and I need my strength, I need to keep going, one step at a time....

I need my strength so I can still feel the joy.

~ Marie

The Two Daves

I have two brothers in law named Dave.....it gets a little tricky talking about them at family gatherings....one is married to my sister, Adele and one is the twin brother of my husband. When my kids ask about them we usually have to qualify who we're talking about by adding their last name....and in the last few months we've had to qualify it in our prayers.....

For the last few years we've prayed for this guy, this Dave , who I saw at the same time as I saw my hubby for the first time.....he was loud and boisterous and most people gravitated towards him because he was the life of the party....I chose the quiet one. :-)







The two brothers last January after hubby's surgery


Dave and his wife Joan


Last week, on Thanksgiving Day......


As you can see by the last picture, David isn't doing very well....a few years back he had surgery on his liver...the doctors thought, at the time , that it was cancer, it wasn't.....but when they opened him up, they found the bile duct twisted, and part of the liver destroyed...they did what they could and put him on a list for a liver transplant. The trouble is, we've since found out....you have to be really, really sick before they put you on the active transplant list....as you can see by the Thanksgiving picture , David is really, really sick....he is on the active list....we keep praying every night that he will soon receive a new liver. It's been a long battle for him and his wife Joan. Battling isn't new for David though....a number if years ago David's first wife, Frannie died from cancer, that horrible disease that attacks all people, of all ages....that, too, was a hard road.....

For years we've been praying for the health of hubby's brother Dave...but this past June, we had a rude jolt when our other brother in law Dave became ill. It started with pain in his back, the doctor suggested many things, exrays were taken...the radiologist confirmed it was something else....they were all wrong and in two short weeks sister Adele and her husband Dave had their world turned upside down...a world where they had already scheduled great holiday plans for the summer...the trailer was ready, the canoe, the bikes...all the camping sites booked, their twice a year trip down to Sanibel Island for the fall, their cruise next spring.....all cancelled...because, you see, the doctors were wrong....it wasn't a pinched nerve, it wasn't a swollen disc, it wasn't just extreme constipation....it was cancer....so advanced that it took your breath away.

Dave was in the hospital for a few weeks when they decided to bring him home. The family room was cleared out, a hospital bed set up, a wheel chair brought in....one of the severe consequences of the cancer fractured his spine...he was a paraplegic ....a daily round of palliative doctors, nurses, personal support workers, case managers...became their life.....twice he would be hospitalized with a severe urinary track infection from the catheter he was required to have....

My sister has worked tirelessly to care for her husband, yes,....they've had help but the bulk of it has fallen to her because as I said in my last post....where else would she be.....this past week, things have rapidly deteriorated. Before, except for him being in a hospital bed or wheel chair...he was still same old Dave...he was always a talker, and anyone that visited...and they had visitors daily ( he was a very popular person!) conversation never lagged, it was never difficult to visit...Dave always carried the conversation...you could really fool yourself into believing that this wasn't really happening.....BUT IT WAS, and IS.....Dave has taken a significant turn, just last week we were able to get him out to the local coffee shop...a place he loved to go with my mom and his wife....We all knew, even Dave did, that it would be his last.....a worker told her yesterday that Dave should be in hospice care.....he is sleeping a lot, and when he's awake he is confused...he has moments of rationality but they are becoming less and less. My sister is worn out, exhausted.....time is passing quickly .

This same worker told my sister that it would be difficult but that she had to hand the caregiver role over, that she just needed to become a wife again.

I thought about those words, the more I thought , the more I disagreed....in everything that Adele has done for Dave, she has been his wife...whether it was making special food to encourage him to eat, washing his body and yes even changing his diaper....she has been his wife....something that she committed to over forty five years ago....they agreed all those years ago to be helpmates to one another....and she has been and will be.....so, even if he goes into hospice....that will not change.


Adele and Dave...in happier times


Last week at Tim Hortons with my mom....








With two of his grandchildren....he adores them...he has four...all with a special place in his heart....


Two Daves....two godly men, who love The Lord..... Who have been a great witness to family and friends....who have made a tremendous impact on all who have come in contact with them.....

I sat with Adele's Dave yesterday, while Adele had a nap ( sleep has been scarce) ....I sat and watched him breathe....the impact of the moment is heavy on your chest.

These two Daves, yes, they've been my brothers in law for over forty-five years but I would argue with you that there is no 'in law' status here...they are just brothers. Good, solid brothers.....fighting a fight.....

We are praying that hubby's brother's liver comes soon....and as for sisters' hubby.....

You have fought the good fight, the battle is almost o'er....

Well Done....Good and Faithful Servant.

We will see you again.

Where Else....

'I love you' he says....I lay there, tired....a little confused....hadn't he just said that? As I lay there, befuddled, after a very long day....he says, 'I wanted to say it again...I wanted to thank you for being with me this morning'...

Where else would I be.

He had his surgery last January...surgery that removed about a foot of his bowel, bowel that had been damaged by Crohn's Disease.....bowel that gave him pain and discomfort, that caused him not to want to eat, that had him lose huge amounts of weight in a very short period of time, that caused his skin colouring to be perpetually white, that caused him to have extreme fatigue, emotionally and physically.

We were frightened.....nobody could tell us what was wrong....internal bleeding they said.....they did tests and more tests and more tests......

We tried different diets......nothing really helped, nothing really made a difference....

In the back of our minds was the memory...the memory of another couple, years ago...who just before they were to celebrate their fortieth wedding anniversary, got the dreaded medical pronouncement.....the big C as they call it......they celebrated their fortieth, with their family....and eight months later he was gone...a godly man to meet his maker....

We were fortunate though.....our 'C' wasn't the big one...as they say....but still one that would be with him forever, that he would always be aware of, that he'd always take medication for, that he would always be careful of what he ate, where he went, that a bathroom was always near......

Crohn's is a disease that can come back at any time.....he must have regular check ups, regular colonoscopies...regular appointments with the internist....to check, to see if it was returning....

Yesterday, nine months after his surgery, we awoke early, left the house in semi darkness and travelled back to the hospital.....

The waiting room was cold....why do they keep hospitals so cool....you sit there tense, from nervousness and the temperature, they call his name and off he goes...a brave man, a lot braver than his wife.....

He admits, later on in the day, that the morning reminded him of all the testing that they had done in the year previous, all the uncertainty that we had experienced,...it all came back, swirling around him as he followed the nurse.

Two hours later, my name was called.....he was done, he was ready to go.....he was sitting on the side of the bed, looking pale and sedated.....

The doctor had told him that everything looked good, praise The Lord....they did one small biopsy, but that was just to be sure.....

I kept looking at him, as I drove him home.....he continued to sleep,.....he laid on the bed, when we got home, and continued to sleep.....I made him some tea and toast....he had a little, and continued to sleep......

The day continued on....he slowly started to wake, the colour returned to his face....he was back....back from the ordeal.....he had some soup, we went for a short walk in the October sun......

I was tired...it's tiring watching someone,...watching and waiting....waiting for them to wake up...waiting for them to look like their self again,....so you can breathe.

Forty three years, forty of them married.....

Where else would I be.




~ Marie