I was suffering from such a misery hangover yesterday that by the time I put Julia to bed, I was exhausted with a headache that I only get when I am over tired and useless.  Over the last semester, I have been intent on find a connection, hopefully a mentor or teacher at the Center for Investigation Healthy Minds which is part of the Waisman Center.  I hesitate for a long time to find a connection because I understood the CIHM to be full of hard nosed scientists who might have difficulty listening to a mom with an idea.  But in the past month or so, especially after the AUCD conference, my passion to begin what I see as my work has been growing exponentially and my chutzpa quotion has soared.  I pressed my LEND mentor for some contact and she finally, and possibly reluctantly, gave me two possibilities.  I emailed both, one at the beginning of December with a gentle reminded at the beginning of last week when I had not gotten a response, the other on Thursday morning.  By Thursday evening, I had been definitely put on hold by the first and roundly blown off by the second.  

And I was so disappointed.  This was the first time I have had to face an honest, big rejection by myself.  David and I had suffered so many together -- we started in theater and fiction, after all, and we never abandoned the cultivation of dreams and possibilities.  That kind of life is full of the opportunities to fall flat on one’s face over and over and over.  And when my nose got bruised from a fall, I would lay in his arms railing against the universe and my own bad luck or bad timing or deficiencies.  Maybe we would have had some chocolate ice cream or a glass of wine or watched a very junky movie or fall into bed together.  We would have done something to try to easy the sting and then gone to sleep.  Last night, I wrote until the sting was dulled and this morning, Lisa listened to my passionate complaints and offered much counsel.  It was enough that I could go in and do the work that I am allowed to do at the Waisman Resource Center.  I like what they allow me to do and I am grateful that I am allowed to do it.

In the morning while I was talking to Lisa, I was still hurting enough to wonder whether I should abandon this idea of meditation for families like my own.  After all, I am no expert and that seems to be my most serious deficit, but I cannot get the thought of it out of my head or my heart.  And so, I will bank the coals for a long winter’s night and prepare for spring.

In the midst of the misery - written with tongue firmly in cheek -- Julia continued to have compliance challenges.  She has had a hard time in school this week following directions (the discovery of that is another thorn in this week’s crown) and has been challenging to me and her therapists.  On Thursday, she had finished therapy and was playing a game on the wii.  I called in from the kitchen that it was almost dinner time and she would need to set the table.  She acknowledged that she heard me.  A few minutes later, I told her to stop playing and start setting.  She replied with a, “Right after this game, mom.”  The pattern this week has been that she will respond by putting me off or not respond at all, and then I would asked again, multiple times, until I became annoyed and raise my voice and threaten all manner of consequences, at which point she would comply.  On Thursday, I was just too defeated to mount such an effort and so when Julia did not set the table, I went on with the finish of supper.  I set the table, plated the food, put the plates on the table, sat down to eat, finished eating, cleared the table, washed the dishes, put away leftovers, and finally, went into the living room and told her it was time to go to bed.  This is a small house, and Julia was about 10 feet from me as I set, sat, ate and cleared.  

She asked me about dinner, I told her it was over and there was breakfast the next morning.  She is proud and stubborn enough not to moan and groan, and went upstairs promising to “listen and do better next time” -- phrases learned from my constant patter.  We went upstairs and I told her that she needed to take a shower.  She answered, “no,” and I was very aware that my eyes widened and mouth hung open in response.  I was almost ready to fight with her about it but stopped and said, “ok, then” and went to my room.  She realized that she had stepped over the tolerance line and did what she could to make up for it, including undressing and standing naked in the shower calling for me to turn on the water.  I refused, admittedly had some choice unhappy words with her and she went to bed.  

Julia was starving when she woke up on Friday, but possibly the compliance factor really jumped for the entire day.  She did a good job in school, during therapy, and afterwards, that we had chocolate ice cream, with nuts, and sauce, and whip cream for dessert.  And I do think we both deserved it.  

Can we count the lessons in that day!

Not hearing from my Resource Center supervisor of whom I asked to if I could come in before the spring term begins at the end of January, I will probably be home the rest of this week.  I’ve taken it very easy for the last two days and besides putting away Christmas and doing some errands, I’ve read, taken naps, ran a few errands and met Julia at the bus.  I’ve also gone to bed when Julia goes to bed and as a result have fallen asleep early and woken up early.  (David had a morning habit (I almost wrote ‘practice’ which it may have been) of early rising to write.  It was how he wrote three novels for the most part.)  I’ve decided if I wake up before 4, I will put on my guided imagery for sleep and try to catch a few more winks but if it is after, I will get my fingers moving.  

Yes, I’m rested and refreshed from the holiday and a few days of gentle living!  I have a heap of resolutions to dive into and a long to-do list.

Through Facebook adoption friends, I’ve been hearing about two little girls who are very ill and fighting for their lives.  Both are heart babies from China, adopted after their grave conditions were known.  I read about their progress on blogs their parents keep, knowing the blogs tell part of a story, and that brave and prayerful postings to some extent mask the fear and sadness that faces them.  Without commenting, because they both are receiving many comments on each posting, I send them support and strength in the days ahead, but I see that  I come from the “other side” now.  I have lost profoundly and I will never be able to have the completely optimistic outlook of the rosy outcome.  I cannot look at their chances for survival and imagine that they will be in the percentage that lives.  

David’s chances of surviving for a year after his transplant were 80%.  Those were pretty good odds and we never, for a moment, believed that he would be part of the 20% that died.  I took the miracle of surviving for granted.  The assumption protected me at a time of incredible stress from understanding how much my life would change when David died.  

I am feeding this observation with words and not truly explaining what I feel.  Maybe it is  is merely that my heart has been opened to the wonder of life.  The opening, however, includes the possibility, no, the reality that if living another day is a miracle that I should celebrate and make the most of in many ways, not living is only a breath away.  Death is close and ever present.  It is not the scary monster behind the locked door.  It is not even the end.  It is just there, unknown, to be sure, but as present as the bowl of oatmeal that Julia was eat in another hour.

I was not so much scared of death, it was more that I did not consider it.  I knew and heard about it from my Catholic upbringing, I experienced it when my grandparents, my niece and my dear friends died, but I did not carry it around like I do now.  I miss those people who I loved who died.  There are times that I still want to tell Jon Jones something  or pause to realize that if Jennifer had lived how old she would be right now and what she might be doing, but I could also put those losses aside, not have them enter my consciousness for days or weeks at a time, and push on.  I could hold the mistaken belief that I could not be torn apart from almost everyone who held me firmly to this earth.  I could not believe, did not fathom, that my life could be absolutely shattered and that I would need to make a conscious decision to hold firmly to this earthly plane.  I did not consider it when David was diagnosed, when he found out that he needed the transplant, as we waited for a new heart, as I waited during the transplant, as I watched recovery, even as I called 911 the night he was taken back to the hospital because of the gall bladder infection.  I assumed that he would be healed and we would be living a long time together.  For all of my years and life experience, I was so utterly young.

Now, I cannot hear of life threatening conditions and not imagine death.  Months ago, I heard the news that Dick Chaney needed a heart transplant.  As the radio announcer told us about the 80% survival rate during the first year after a transplant, all I could think about was that 20% and felt awfully guilty for thinking so.  It was as if I was condemning the man, who I didn’t know and never liked, to die on the operating table.  I felt awful for even thinking of the 20%.  But I see that I was, for the first time and with a completely stranger, just looking at the whole picture set out before me.  

And now, I am thinking about the friends who counseled me before David died to get our finances in order, to make sure documents was available, to do small things that would make that profoundly awful time wash over and through me without the practical bumps.  We did those things and it helped.  I think about the constant friendship offered by the women who called, sometimes daily, to check in with me, the food offered by friends, the garden cleaned and the sidewalk shoveled, the people who drove hours to be with me for David’s memorial.  I’ve done that for others but never understood it.  

This last paragraph moves on from where I started, and I don’t want to go there right now.  I want to write that there is something in the mystery of life and death that I have taken into my everyday, pedestrian experience of living.  It makes living every day and loving my beloveds and reaching out to more people much more precious, but as powerful as the preciousness of life can be, the understanding makes death a partner with life.  Perhaps that is maturity.  I know I have lost innocence.  There are conversations that I did not have with David.  It would have been good to talk to him about these things.  I can’t regret not having those conversations because we did not know how or what to talk about.  It was a mistake that I will not make again.

I go through this feeling every few months -- of having nothing to write about, of wondering what I am writing about, of trying to figure out whether I should have a theme in my writing, of feeling like I am writing the same thing over and over, of feeling like I only write about small, trivial things.  I have been surfing the web for various reasons and have come across more and more good blogs about parenting kids with special needs.  Most are personal stories, some professional.  Sometimes I want to be like them.  

Ok, right now, I want to be like them.  I think I was at some point when we were first discovering Julia.  Then, this was an adoption blog and I was hell bent on writing about my experience is in a painfully truthful way.  Then we moved, David got ill, David died and I discovered the grieving process.  All of that life happening threw me a bit off topic.  Maybe it expanded my topic or bent and shaped the topic in a way I never expected.  So, every so often I have to go through this minor tantrum of purpose to realize that just like my daughter, I am and must be exactly who I am.  I write what I can write about.  

And then, it is time to go on.

Julia’s birthday is coming up and she told me she wanted a party.  I was so excited when she said that!  She has endured a few parties that I've given her and wanted to bring a cake and candles to the therapy team meeting we had last year on her birthday so that we could celebrate, but I think this is the first time she has asked for a party.  Of course, this is the first year in a long time that I am in any way mentally prepared to give her a party. 

And then, of course, there are complications.  

Julia is not a kid who is invited to parties and does not have friends to make up a kids party.  If we lived in a community with family nearby, I would just have a family party, but as we don't.  So instead I sent out an email feeler to a bunch of friends, including Julia’s therapists and some grownup friends, who could celebrate with us.  Those with kids, I invited the whole family.   

Part of me hated doing that.  Be it special treatment or the possibility of pity or whatever other negative spin my over-active mind could put on it.  But that is me and my need to look “normal,” it is not what Julia needs.  Which is just to be who she is! By the end of the day, I had heard from everyone on the email list and although there may be some time conflicts, everyone wants to come.  I am still tearing up about that.  We have good, kind, wonderful friends!  And they love Julia.  And it breaks my heart that I have to have a different kind of party because of where she is right now with her social interactions, but those damned tulips are beautiful!  (You know that Journey to Holland story and what might be considered a response and also this one by the same mom.)

So, I righted myself again and will get into the party planning mood soon.  As I think of it, I am ready to throw a party.  I haven't tried for a long time.  I need to ask someone to help me host a bit -- after having a few folks over for dinner last year, I felt that I really fall down in the hosting department.  I am still half of a couple when I entertain.  And if that is the case, I just need to ask for help.

The house is as done as it is ever going to be (and even clean right now) and I am as normal of the brain as I can be at this time.  And my birthday is a week after Julia's and a party on the weekend between the two will be good for me as well.  And right now, I am thinking of it as a birthday/come out of mourning party.  That is what it feels like.

Ok, been up for a while now.  Writing some.  Answering email.  It has gotten to be the time that we usually get up but we are still on vacation and I am hoping to jot a bit here and then catch a very early morning nap before Julia wakes up.

About Julia.  Math.  And I think this happened with reading as well.  We hit walls.  I wonder why.  Julia will do 12 addition problems.  Carrying over with support from me, but basically on her own.  And then she gets to the 13th and has no idea of what to do.  What is that?  

We had an appointment with her meds doc yesterday so I asked her.  No idea at all, but she took notes.  She may be the kind of person that may think about what I said and possibly get back to me.  I am going to ask more of my natural resources to see if anyone has any idea.

We are unpacked and really back home.  The house, which needed a cleaning before we left, still needs it.  No gremlins who clean here.  I was going to do it yesterday, at least a vacuuming, after we got home from the docs but then decided to take out one of Julia’s new puzzles and start that.  I started a fire and lit candles and later put on our window candles and we worked together with music and some silence for hours.  And I take from that that I don’t understand Julia’s power of concentration.  I don’t know if I really understand mine but mine is more neurotypical.  I know that hers follows her interests.  Should I be making more use of that than I am?  

Second night of Julia in my bed and I remember why we cannot share a quilt.  Oy!  I have a king sized quilt on my bed and by the middle of the night, I am contorting my body and straining to get enough covers to stay warm.  This is not what woke me up or kept me up, but that being said, I do want my bed back.

I’ve resolved to have Julia in my bed until her arm and foot heel.  I may cave eventually, but I need to give it another try right now.  Her foot heeled for the last 48 hours.  She managed a bit of picking on her wrist when she went to the bathroom.  Pondering whether to follow her everywhere this week.  

The year is still so new and the writing of 2013 is still unnatural and I congratulate myself when I remember and get it correct.  It is cold enough that the windows leak cold air a little bit.  I close the chimney flu when there is no fire and that makes a difference in the living room.  Julia is still in bed, my bed, and it is after nine, but she is stirring and in moments, she will be up.  

My aim today is to set a pattern for our days off together.  Julia thrives on patterns and I appreciate them as well.  Sometimes without school or a therapy schedule, we drift and the day gets away from us.  We have not done anything therapeutic together and very little school work.  I make excuses for me, for us and many allowances because there has always been a therapist coming and a session planned, but we are coming to the time when there will be very little therapy.  On June 30, Julia will be finished with her intensive therapy.  She will still have some group work, speech, and attachment/trauma therapy, but her after school and vacation time will be mine.  Nothing needs to be set in stone but I need to develop sensible guidelines for us -- a bit more than our best days on vacation, a bit less than formal therapy.  I want her to keep learning and developing.  And I also want to have some fun.

Then again, sometimes getting up and dressed is a daunting task.  And by sometimes, I mean almost always.

She is up, singing as she dresses.  Anyway, I think she is dressing.  Time for my shower, meditation and breakfast and a good dog walk.

We are home.  Late last night.  Travel was easy.  Spent the day salting the icy sidewalks, unpacking, clothes washing, putting groceries in the house, cooking a much fancier dinner than I had even intended.  Julia was pretty compliant today, trying to please.  Not sure why.  She did a bit of math and read a few chapters in the latest magic tree house book.  

It is cold.  Much colder than NYC, but I/we dress and go out.  And I find that I like the snow landscape.  I deeply approve, if that makes any sense.  It is winter and it looks like  it.  

2013 resolutions

live simply, be mindful, give more, expect less

seek the present, take joy in my body, prompt spirit to travel far

pursue the serious cultivation of inspiration

love

invite passion

seek the likeminded and kindred spirits

go fearlessly through the dark

read again

gather, organize and use resources

write

seek dreams and dream
ask for what I need

and do all with intention