Can you go back ?

Is it possible to go backwards in relationships ?   I don't think so  I think the memories and ideas of what were once  there will be haunting 

The wondering what he is doing and who is he with will start to make me crazy. The jeluousy.  I won't know if he's off with another girl,  playing paint ball or staying up all nite with shaughn  

Then there's the tricky part when doses he come over ?  Weekends only to keep kids out of itb?  Do I let him stay involved with the kids ?  Minimize there contact ?

Probably. No family movies and out dinner all of us.  Too weird now. His responsibility to help keep it clean will be gone. No reason for him to help with Ella. Trash or laundry. He is now a guest once in a while. 

I get y he wants it. But is going to be hard on me. I will need to do more. Step up and take care of it.  At same time I think I often don't in hopes he will help and once it's expected of him he stops.  

I really need to get depression as well as feet under control so I can do more for myself.  

Other Han not loosing all adult contact I'm not sure what the point of keeping the relationship going is. He still won't be there for me emotionally. No holding or hugging. No dating. He works till midnite unless school nite. 

No more trips. Family trips.  It's like getting divorced byes I'll see him but we see no longer a family.  Wow. Still amazed. This is all so he doesn't have to admit his actions have a consequence. And influence on me and my kids. So he can walk away instead of listening not get pushed into talking.  Lol

Jokes on him.  He is always on phone and ignores me.  Why would I want to hang out with that ?

Sigh.   I guess ending it slowly is all that it's really about.  Ok no cold turkey. 

Alexia

Clearly I need a blogging for dummies book as we as a simple guide to how to write a book self published. I am going to raise money for the publishing on indegigo.  Alexia deserves this and I need this to heal. 

Summary

It will be a quick summary of her life, stories anecdotes of family, siblings . You know the stories that loved to be shared around the thanksgiving table to show the world out connectedness. 

Then to describe both the physical of what she went thru the tragedy for her and the horror it wreaked on our family and the strength and grace that shined thru as "Alexia". 

Sad, poignant and funny tales of her. Life in the and out of the hospital. Her trying to grasp what was hipping to her young body as it gave way slowly to a non life threatening disease

Some of her shining moments as we go thru her war stories from fact point Drs point and her point of view. Than we try to compile all the new information on a rare disease that no one had answers for. So we can make an informed section for out daughter

Add to that that we have twin babies at home. Very little family support. No sleep since she was never once left alone in the hospital discussing dr options on phone and telephone and voice conferencing latterly trading home life and hospital life at midnight with a quick update on her meds and status and dr rotation. We went thru hundreds of residents. 

To a very rough and rewarding comeback of our Alexia after 6 mos of hard wok at Spaulding

Only to find out a year later the real horrors would begin. Constant apathy, incontinence, loss if focus, headaches - damn a trip into ER Boston for a spinal tap and 9 times out of 10 a surgical replacement of her shunt running from base if skull to abdomen.  

A few months reprieve and here we go again into the hospital. Retold stories and old friends with nurses knowing the routine so well we felt we lived there - so sad. 

Almost a year of relief. Thinking we are home free for her teen years only to see a significant change the summer after 16 bday.  She and I took a vacation of a lifetime to WA state to see long list family friends. I could tell she was happy to be there, but not her jovial self. 

A few more trips into hospital for more surgical shunt replacements. Then May 13th she turns 17. On may14 she gets admitted to hospital for the last time. She was fighting for her life  the biggest fight yet. It this time was difference.  Difference in her energy. She wasn't perky with staff and didn't bounce back from surgery the same way

Fear crept inside of me as I tried to keep it at bay.  Was she getting tired of the stress. Was her body getting worn out ?

Well the beginning of October showed us what was in store for our daughter.  She slipped into a coma and immediately needs life support. She left our safe home on 9 North and head for ICU stat. 

Many debates tests ad crying tantrums later we decided that she needed to pass in peace, the way she would have wanted. 

She was the brightest of stars at that hospitals always a compliment to make you feel better. Dance parties I. The rooms when activity was okay. The light in our dark life. 

We left ICU, went back to our friends at 9 north and went into a special bereavement room.  We decorated with her twilight posters, her art work and her poetry.  And we waited.  And waited meanwhile it was a living wake 2 whole journals of thoughts, prayers and remembrances of a child who made a large difference in her short stay in this world. And then on October 16th almost 5 months to the day for that stay and almost exactly 9 years to the day of her first grand mal seizure - she was gone

The most giving and sweetest soul I will ever meet taken from our arms after a 9 year battle with a non life threatening illness she died

A small piece of me died with her on that same day and I'm still trying to find my way

Huge

Wow this is huge.  I have seen pieces of this before but never connected the dots this way.   His love is conditional......

On me being there for him.  For me being who he needs.  For me not being upset with him.  

At almost any point in an argument if he told me he need to hear an I love you from me I could do it for him.  He can't from me.  I have tried. I have asked and been denied.  He denies hugs when he is upset for gods sakes. 

He sleeps downstairs not for peace but to show his lack of love for me.  He can't sleep with women he doesn't love - his words ;(Cherie). And when we are fighting or more importantly when he is angry like now, probably for grow up comment, he can't sleep with me. cuz right now he doesn't love me.  

It's not all about him.  Wow. I never felt quite so derailed. Out of nowhere with this one.  

Okay, I didn't expect that coming ...

MMy last post was my first blog post ever. I usually write more privately in an art journal.  But recently I have been reading post from others that I have found helpful and insightful.  So I decided to write in a more public place. See about feedback. 

The first feedback I got, I wasn't surprised by. It was my mother, telling me I write really well and should do this more often. She has always been supportive so no surprises there. But she also told me she could feel the pain in my words and it brought tears to her eyes. That I was surprised by.  Not that my pain upset her, but that my words could convey such depth of feelings.  But ok, it's still my own mother. 

The next person I heard from was my boyfriend. Now his reaction floored me. He was angry at me, for what I wrote.  Not the situation but me.  He feels as though I am blaming him for all my problems in life and that I hold him responsible for my severe depression. 

Now I'm good at reading signs that aren't there, but wow. Was that far fetched.  After some thought about it I realized maybe he was more mad that he didn't think he had a place in my new life. Or was refusing to move out of state without knowing what I wanted.  

But that does sort of sum up our relationship. We don't communicate well (he hates to talk. and I'm a yapper)  so we both assume a lot.  Surprisingly enough we are both often wrong in our assumptions. And he makes all his important decisions without any discussions and informs me once they are set in stone.  

I on the other hand want to discuss everything. I am often told I over discuss and over think everything. 

I am not the same ...

I am not a better person, hopefully not a worse person, clearly not a perfect person, what I am is a changed person. How could I not be after the death of my eldest daughter, Alexia. This type of profound loss changes a person.  Not for better or worse, but changed - for ever.  

Wiih this type of profound change in me, how can I be expected to live my life the same way I always have. It is too painful to live in the same house, see the same faces, shop the same stores and live my life as though nothing happened.  Oh I speak of her, talk to her and see her artwork in the house daily. But on the outside, I feel like life has continued on - as "normal".  

But how can this be ?  Nothing is normal, I will never be normal.  I stutter when asked "so, how many kids do you have ?"   I avoid grocery tellers who were once her best friends, no longer able to watch them grow up and become happy young adults. I find myself talking about her so much that I worry I am not paying enough attention to my two other children by not letting her go.  

But how do you "let go" of a person when you are asked to live the same life you had lived, but now without her.

It's simple,  you don't. 

Such a profound loss means something dramatic has to happen in equal proportions to the loss. Does that mean I give all my possessions away and hike the Himalayas ?  Maybe, if it was just me. But it's not. I have Alexia's younger brother and sister to think about.  They are floundering as much as I am at the moment.  It's time for a change. Not a small one, but a life altering one.  One that will equal the loss we experienced. 

Then just maybe, the real healing will be able to begin ...