January 5th, 2012

     A rental house Danny and his mom were "sure to get" for next week, fell through yesterday. It sounded to us like the landlady didn't want to rent to them due to his disability...a lot of stupid reasons/excuses. Welcome to the world of discrimination. But perhaps that was for the best. It was next door to one of Danny's mom's old guy friends, who drinks a lot and can be a charecter, although a nice person. I don't think Danny getting involved with someone with those activities would be such a great idea anyway. So they are looking at another apartment tomorrow (Friday). Danny would like to put off this step indefinately and work on buying a car instead, but his thinking is delusional about that. He has no license, and has somewhat of a big process in the way of getting one. Things are getting tense at his sister's house as well, and this can't be put off too very long.
     Meanwhile, Dr. Diorio (Danny's neuropsychologist) continues to STRONGLY reccommend the brain injury rehab (ReMed) and will be having a phone conference with them most likely next week after the admissions committee reviews Danny's files again on Monday. He really needs to get accepted and I know the docter is going to push as hard as possible for it. Then we need to hope Danny agrees to go there. He was all for it, but now he seems to think it's a place to "put him away"...some sort of mental hospital. And he continues insisting there is really nothing at all wrong with him. My heavens how far from the truth.
     It feels like I have him here with me more than not. He stays 2 nights at a time lately with just two nights in between. I don't really mind it, but it does concern me a tad. He talks about just being able to "come home" and that breaks my heart, but I can't go back. It would only result in more crisis all over again after some time, and would do nothing to get him healed. This is so hard.
     Good news is I am returning to work at my pediatric nursing job...three nights a week, which will help me tremendously to get back into the groove. I havn't worked since June, and I miss it, although I do admit enjoying some time off. I'm quite certain I would not have been able to go through all the ordeals with Danny for NEAR as long had I been working.
     I keep having faith, and thinking about my future goals...just kinda small things....small things that are really big in actuality. Spending much more quality time with my kids, possibly furthering my education, writing more...maybe publishing my poetry, stories and even writing a children's book, and starting a little account to add to bit by bit so that I can in maybe two years take my trip to Ireland that I've dreamed of since I was a little girl. My life can be what I want it to be, and I am too old to keep waiting and "putting off". Danny can be part of things in my life, or he can choose not to, but it's time to live again, and because he seems to have given up on living and trying, does not mean I can. So I continue to pray for us both...together...apart...where ever the roads lead us...

Let's Not Forget the Happiness

Despite the month of December being so chock full of emotion and change... the fun, love and happiness can not be left by the wayside. Yes, December was the one year mark since Danny's horrific accident, and marked the anniversary of the start of 9 weeks...then one year... of waiting, hoping, crying, praying...and watching as Danny pulled through his trauma and began to travel the road to recovery. As the year went on there was so much that went on, and none of it was easy...but we got through it. But as one year passed by, we both found things to be getting too overwhelming, and together we discussed options. As heartbreaking as it was, I was forced to make the decision to give Danny over to his family. I needed rest and relief, and Danny knew I needed that as well. God bless him...his heart is unselfish deep inside.
So mid-December the move was made. For a solid week I did nothing much but cry. I guess I needed that to start to heal. Every time I went upstairs I looked down the hall and expected to see Danny lying in our bed...and if I heard someone coming downstairs I expected it to be him. My year-long ground-in routine is now full of holes...setting up his meds every week and giving them each day, prodding him to do his self-care, making sure he eats right, routines of getting up, appointments, dinner and movies and TV in bed...falling asleep wrapped tight in one another's arms. Kinda silly maybe, but that last thing is one of the very hardest to let go of. 18 years with my ex...he seldom wanted to hold or be held, and thats something I need. With Danny, above all else...hand-holding, sex, kissing....holding and being held is a must. We weren't an annoyance to each other by cuddling up tight. It was just the way it hadda be. And even the things that were soooo nerve-wracking about him...the TALKING through TV and movies, the analyzing of people, places, things, events...I could go on forever... its just difficult. I even miss all that.

But looking back, even a week ago...that unrelenting sobbing I was doing...how dumb. I should be proud. I gave ALL I have and did ALL I could. (thank you to several friends on FB and my support group who point that out)...but I also have an obligation to myself and my kids, to keep their lives as normal as can be....and there are those who remind me so very very gently that I need to remember my worth, purpose, power, and to just be myself...(thankyou James and Glenroy)......so anyway, Danny and I mutually knew that things must play out this way...and so they are.
So what about not leaving happiness by the wayside? There was much happiness over Christmas and New Years. I shopped happily with my older son, I treated myself to a Kindle (I NEVER treat myself to anything), I went a bit overboard but thats ok, for Christmas...last year was sad and hard...this year I wanted Nick to have a great one, so I went over my budget a bit...oh well...life goes on. We had a wonderful Christmas morning, and I appreciated having myself, 2 sons and his girlfriend all together just us....and later it was exciting to go and bring Danny for Christmas evening and watch him open his 5lb Hershey bar....lololol.....there's been an obsession with Hershey bars past few months...but I think we are over that. But anyway...it was great to have him home. Nick played with his new stuff and Danny too, and Christmas night we got to go to sleep cuddled up....my heaven :-)
New Years Nick went with his dad to my daughter's house and I spent New Years with Danny at his sister's, plus the 2 nights previous he was here with me again. Things seem better this way, although it is a confusing thing for Danny ...like what's going on now with getting his own place with his mom and all. We really need to guide him and help him. I didn't want things to be this abrupt and sudden, but it kinda just fell into place that way, and its been at least 2 months in coming.
So my only real thing at the moment, is that the longer Danny's away from me, the more he seems to be begging to come home...with promises of good behavior etc....well he has a severe traumatic brain injury, and he is not capable of controlling all his behaviors. So i'm torn....I love having him home, but I dont want to sabotage the whole "independance" thing we are working on either.....
One Day at a Time...every day :-)

A New Year

2012...a few weeks before Christmas I remember thinking that this coming year had to be a better year than 2011 was. It was very odd, thinking back, how Danny and I seemed to be mutually moving toward a change. We had begun spending nights pretty often...discussing, contemplating, wondering, crying, holding each other and trying to figure out the meaning of our relationship and what it meant for both of us together, as well as alone. These talks weren't easy, but we struggled through them attempting to make sense of it all. Danny was aware that the past year had been, and still was putting an enormous strain on me, and he kept saying that he felt he was "getting in the way" of my life and family, and that he wasn't doing right by me in having me continue dealing with his inappropriate behaviors and other challenging problems. In some of our worst moments as of late, I had told him I "was done"...that I couldn't deal with him any more. He was becomming possesive, controlling and accusitory. His lack of memory, disorientation to reality and confabulations about all things so much of the time, were putting up a huge red flag. I'd dealt with all these things, and much worse, during my marriage, and where it took me many years back then to realize and face truth, this time Danny forced me to face it quickly. When he'd say we should live apart, maybe even move on, I would cry and become so distraught. My love for Danny is so strong, and that romantic inside me wanted to believe that everything would be alright eventually...if I just hang on a little bit longer...just a bit more...and maybe it WILL get much better eventually, but what about the meantime?

What has taken place since December 17 when I took Danny to live with his sister, has been so very hard, and the courage it's required for both of us has been unimaginable. We have been through so much together over the past almost 3 years, and in the past year it's been just a complete stormy sea of trauma, fear and sadness, along with beautiful successes and accomplishments. I have only slept in our bed 2 nights since Danny has been gone, except for the several nights I've brought him to stay over. I am awake late into the night, thinking, sometimes crying...but the crying is getting better than it was at first. I try to feel proud of the decision we made...feel happiness that I was able to make that decision and remember why it had to be made. But its so hard. I feel an emptiness I can't explain. I would say it's even an anger. All this...for THIS??? To have to feel as though i've given up? Am I just put into people's lives to help them through difficult things? Am I only shown love so that life can simply cruelly snatch it away?

I am at odds with all this. I have been Danny's caretaker for over a year, and I must say that I know I've done well. Now he is with his sister and mom, and don't misunderstand, I know they love him dearly, but I am not comfortable that all Danny's needs will be followed up with. They simply don't have the means for much of it. But I am grateful that they are stepping up to the plate with and for me, and for Danny. They are getting a place to live for him and his mom will stay with him and help him. Together we will all help him manage his money and bills, and all the things in life he has trouble with that you and I just take for granted...and I hope it all works out. For certain, reality for him will be a cold, hard slap in the face...perhaps one he actually needs. I need to have faith that this turn of events has a reason that will be revealed later.

Until then, day by day, I will continue to stand by him in any way I can. But I will also strive to keep in mind that I am strong, life has twists and turns we sometimes don't understand until later, and that my job as a mom is priority, with all else falling into place after that fact.

Monday Dec. 16

Spent some precious time w/ Danny @ his mom n sister's, talking n holding eachother. 


Funny how Danny has always been my knight in shining armor since he came into my life...he always instinctively knew what the right thing was 4 me 2 do when it came to me n my family n things like that,n he helped me in so many ways with things, habits, and opening up abt traumas in my life that I'd held secret. No one will ever ever mean more to me becuz of those things. 


Even w/bipolar and now severe brain injury, and all the awful behaviors and attitudes they carry w/them, he says we both know, that he can no longer come before my children and he knows its wrong and can't do that anymore. 


So anyway, I plan to continue to help him getting places and in any other way I can, and we arent cutting ties...neither of us wants or is ready for that...and to be honest, neither of us is sure where exactly we really stand right now or what this is...and how important IS it anyway? Whats important is both of us having the courage to do the right thing even tho its so very painful. Not everyone can say or do that...


,,,,so I guess its just one day at a time.

so this is it

Brain injury has stolen the person I love and changed his life and mine.

 We are no longer living together...we may not even be together at all. 

I was holding myself in one piece somehow until tonight when we talked on the phone. Now i'm just crying and crying. 

It hurts so bad. Nothing in my life has ever hurt like this. 

I had to draw a line between what is more important, and that has to be my family. I dont want to lose Danny, but we cant live together either in the current state of things. 

He is no longer here, and my heart is aching...but I have to put it all in a Higher Power's hands.

A year ago I was sleeping alone and crying because he lie in the hospital close to dying. Now 5 days before Christmas, I am without him again...and crying. I remember thinking the night of his accident when he was so critical, "If I had only known you were leaving I would have held you a little longer...a little tighter last night." Now i'm thinking the same thing. I would have kept my head on his chest all night and listened to his heartbeat. Instead, we were quarreling about some silly shit.

We both know that rationally thinking, it needs to be this way...but our hearts say a whole different thing. 

I know I will get to see him, and probably even be taking him where he needs to go, but everything will be different now. And all I can think about right now is our happiness and funny times...our hours cuddled together making silly jokes and laughing...how safe I felt in his arms. How we understood each other without even speaking. And even how we argued with the same amount of passion as there was in our love.

Life and its twists and turns is unfair, and yes, I am angry about it. I am angry at brain injury and how it has fucked up so much worse something that was already so hard to try to overcome...but we WERE.

I don't know what to do with these feelings...the love, the anger, the sadness and the fear. I am just trying to hang on. I couldn't sleep last night, and tonight I've been to bed twice, and then the sobbing hits me. So I am awake...

I didn't think it would turn out this way...

A YEAR AGO...

    Sunday Dec. 4th was one year since Danny's accident. A year ago I was at his bedside night and day, fearing the worst and hoping for the best. I was given the gift of a life experience during which I was able to witness the miracle of near death and the journey back from it. Yes, it was a gift. My love and prayers were undying. I learned about faith, and realized for the first time in my life what love really entails. As things improved and we traveled the rocky road of early recovery, I felt in my heart more and more, that everything would be ok in the end.
     My faith is waning at times... my patience, and on some days here and there even my love. 
    Traumatic brain injury changes brain chemistry...some of it anyway. In the past months we have switched from making slow progress, and have slipped onto a downward spiral. Danny's mixed bag of predisposing issues further complicated by brain injury, has become a nightmare that no one seems to be able to rescue us from. 
His lack of motivation has been a detriment. The medications which helped him so much over a year ago no longer work. Its become a routine of trudging from doctor to doctor hoping for some light to be shed. The attitudes caused by his personality disorders, and the attitudes caused by brain injury, are blended together and nearly inseperable. He needs psychiatric guidance, perhaps before additional brain injury treatment has any hope of being successful...but by the same token, its likely that without brain injury rehabilitation, he won't have the ability to absorb any of the psychiatric help offered.
    I don't know what is going on alot of the time. It has all become so complicated. So often I don't even recognize this person that brain injury has made Danny become, and I really feel sometimes that he no longer recognizes me as well. He knows that our near two years before the accident happened, but it is sketchy and sometimes only recalled by me giving reminders and clues...then it seems to come back as a memory. But I feel as though he is "on the outside looking in" alot of the time and can not really feel, or remember how we felt. Sometimes I feel I've become a stranger to him, or a "new" person and that what we had is gone. He continues living in the past and pining for an ex in Germany who has gone on with her life and writes asking me to please have Danny stop emailing and calling. Its painful for me feeling as though she is who he remembers most. And where our age difference made no difference to him before, he is looking at it at absurd now. He says it doesn't matter much to him, but he worries about what others think. 
    In the past weeks we have been discussing perhaps moving on. He feels he is wasting my time and my family's, and that I should be looking for someone my age who is good enough for me, unlike he is. And he in turn could eventually move on and maybe start a family of his own. With his aggressive and anxious behavior increasing in the past month, I actually have agreed with him on the fact that we should just call it quits. But then we talk further and end up in tears...both he and I, and don't know how we would actually go through with a break-up, even if it WAS for the best. Danny has always been a jagged pill to swallow, but I am so in love with the golden parts of our relationship...the closeness, the conversation, the crazy silly fun we have. We've always understood  each other and make each other laugh. Yes, he also drives me insane...but I love his heart and soul. I feel deep down we belong together.
    However...things are not going well for him. He is at a stuck point. One of his doctors and I convinced him to hospitalize himself last week to see if his medication could be adjusted, which they did.  He has been much better since, but continues toying with the idea of letting each other go...maybe getting an apartment with his mom. I would continue getting him to his doctors and all I suppose since his family has no means of doing it. I just don't know what's next. His neuropsychologist is still pulling for the brain injury rehab to accept him. He really needs it. His delusioned thinking tells him he can just pick himself up, dust himself off and walk into the sunset.
   An added complication is that he was approved for disability, and with a small wad of back-owed money he wants to buy a car, even though he does not have a license and won't be able to get one for some time. His checks come in my name and I am faced with monitoring his spending. How in the world can I do that? I may have to have someone else appointed to do that.
    He is the victim of a double-edged sword...
    Traumatic brain injury is a monster who can't be figured out, and I fear never conquered. All I can do now is continue to pray for guidance.
    

THANKSGIVING...

    I had Thanksgiving dinner at my house. My mom had invited me "and the kids" as she doesn't approve of either Danny or my daughter's boyfriend. The relationship with my mom has been in turmoil since I was a preteen, and her narcissistic behavior has torn me to shreds for years. Its a long story that does not belong here, but anyway, I told her I was having my own dinner in my home for all the members of my family and friends and that she was welcome. I received an onslaught of nasty letters...well...I have grown kids and traditions to start and keep, and there's no time left in my life for senseless head games.
    Danny has the mistaken belief that he has spent Thanksgiving with his aunt and uncle every single year for years. In truth that is false, but the week before Thanksgiving he got into a big discussion with his neuropsychologist about it, and about having me drop him at their house for dinner...unannounced I might add...because he is "expected" to be there. The Dr tried talking to him about "appropriateness", which Danny has a huge problem with. Dr. D. explained that you wait to be invited somewhere, and you never assume people are going to do things only because you expect them to. We finally hammered out a plan of action where we agreed Danny would call and ASK first, and that if ok, I could run him a half hour away to their house in the morning, but would be unable to pick him back up before our own dinner. He also needed to call early enough in the week. Well, he mentioned it alot during the week, but ultimately waited until 9:30pm Thanksgiving eve to call and ask. His aunt was caught off guard, and said their dinner was at 1pm and since mine was at 3pm maybe it wouldn't be the best idea. Thats what Danny told me was said anyway.
    My dinner went nice. Its always a bitter-sweet thing when family relationships and situations are out of balance, but it is what it is. I tried to present a beautiful dinner table for my family and my friend Barb and her son and grandson, who also came. I am always amazed afterwards about how much time and effort we put into these holiday event out of love for our families. Two full days and nights of cooking and preparing and another 6hrs of dishes and clean-up, for a dinner and visitors that lasted around two hours. Same thing at Christmas. But at least this year I tried to be relaxed as possible and enjoy my company. Never mind that Danny's inappropriateness caused him to attempt to have dinner in a dingy white T-shirt with a hole in it and sweat pants he had on for 3 days...I made him go change...and he sat through dinner with a big wad of slightly blood-tinged tissue paper stuffed into and hanging out of his right nostril. Oh well...

    The day before Thanksgiving a package arrived for me. It was from one of my friends in the brain injury support group...an older woman from Oklahoma whose husband got his brain injury almost 4 mo. after Danny got his. She is a wonderful sweet woman, who like most of the girls in our group have gone and still are going through all sorts of assorted behavior, cognitive and physical problems with their brain injured loved ones. Her husband was strikingly similar to Danny in some of it, and her and I are very alike as people too I believe.  Well, thinking the package contained a book to read since she sent one a few months earlier, I opened it to find a cute little hand crafted note card. It read...


                                 "Just for you Blue-so you will
                     remember that you are loved and cared
                     for.  This has been broken and mended
                    as all of us sisters have been...but I
                     wanted you to have it as I have no
                         truer sister...love you, Sybil"


My eyes welled up as I lifted a beautiful statuette out of the box. I felt an odd awareness that this was one of those moments that will stand out in my heart more so than most. The figurine was two angels facing eachother, and was inscribed...


"Some sisterhoods don't happen at birth...but grow in the hearts of people who completely understand each other."

How remarkably beautiful and appropriate...in the support group we call ourselves a sisterhood, and we understand this journey we are on, and each other, as no one else possibly can. Over the past many months some of us have grown closer than others, and have found so many more similarities between us...in our lives, experiences, hardships, traumas.... 
One wing lay in the box...obviously had been glued but came off again during shipping. We ARE angels with broken wings...but with love and patience and support, can mend ourselves and each other. 
It was ironic that the wing was off. It seemed almost as though there were some message coming from somewhere that was meant to be heard. There was definately a lesson therein. 
My first thought was "super glue"...the easy, quick and fail-safe solution. My son ran for some at the store for me. Well, the surfaces wouldnt even slightly bond...it was as if I had put a drop of water there and expected it to work like glue. Ok, so the quick easy fix doesnt work. It doesnt work when we try it in real life either. Life requires work in order to progress, to change. So out came the slow-drying Elmers School Glue. Long story short, I glued and waited, over and over again. It seemed to get tacky and stick, and then with the slightest movement as I tried to set the figurine down, off came the wing again. As it ended up, I actually sat and held the wing in place for a full hour until it was dry enough to set down, and then I pain-stakingly balanced it on the counter top and left it alone even longer. Hours later, I applied another layer of glue. It is fixed, but not without much patience and care, some level of intense frustration, and a great deal of perseverance. All the while, I was aware of the lesson being taught about life.
My wonderful friend made my Thanksgiving holiday. I cant even reMEMBER when I've received an unexpected gift, and one so meaningful and very precious. Thankyou Sybil for all you've taught...