Dear Caleb,
As I watch from afar, and nurture from near, I am always smitten with the integrity with which you live your life...in spite of all that has happened to you...... while I tend to be suspicious...you have not altered your belief in people, you have not stopped smiling, when tears are far easier for me to let loose than laughter, you are positive and giving, while I fight to stay afloat and draw in, and you beilieve in yourself, while I have discomforting doubts.
Like marriage vows, you repeat your intentions , and I in the congregation believe in you and hope that you will beat the odds.
You have taught me more about life than I have learned in a lifetime., and you have caused the
temperature of my heart to be altered from a chill to a fine burning ember that glows for you.

Late at night when I cannot any longer sleep, I steal away to your room. I lie down to watch your brewing breath and I snuggle while you suck in life in a way that I have never been capable of doing. I have often wondered how one human can be so negative, while another meters with magic.

Life is given to us as a gift, but not many of us take it... you, my Caleb, prior to your accident and still now, know the fine art of receiving.......We are nearsighted beings..so busy with the things that take time and which give us a false sense of importance, but you have slowed to a fine tuned, sensual song, and while you dance the day away......other's are rushed; while you sit silently, other's are haughty, vying to be heard, while you dream, other's are distorting.... you have bravely taken your life beyond and to a breaking point, which was such a fragile move, and in it's fragility has become a strength...and while you sit back and observe....... I am observing you -
how I am smiiten with you...really, no different than the first second I laid eyes on you!

It's always good to have a fresh perspective..and this time I have two. Mike and Kate, just back from Peru, and close friends to Caleb are pointing out how very well they think he is doing from the last time they saw him, just two moons ago.

I have been giving him chores to do - take out the trash, put the dishes away, make your bed, simple things in the past...and now we are progressing to cutting a section of grass, and helping move wood. He is pysically doing quite well, if only slower than his rapid fire velocity prior to the accident. He has more weight on him than I am comfortable with - but that can be said about me as well. We will take to the gym this fall.

It seems to me that his brain is the mirror to the movement of his eye. It moves at a slow, blinking, staring leisurely pace, this eye, as tho he is trying to siphon out what makes sense to him in his new world. It remains a sincere eye, one that holds so much hope. It is a big, beautiful blue eye with feathers dusting over it ..so soft and protective are his lashes.

We hold faith in him and in each day.

I can tell you that when I want to, I can conjure up Caleb's voice. It comes to me at night when I think he is calling to me, but when I wake the voice turns pale-- the color of a person who has just died or that of one who has not yet been born.
I am trying to turn the corner.
I arrived on the shores of Cape Cod when I was 21. But mostly it is my 22 birthday that I remember because my mother made such a fuss, for some unknown reason, over the day of birthdays which coincided with the day of birth .. so I turned 22 on the 22nd of June - my birth- date. and I was celebrating alone without family - exhilerated to be as far East as one could possibly go..young and feeling free... a bit frightened..but did I mention free? - oh yes so free!
I did not intend to stay here. I was destined to go to Wyoming, or Utah to become a cow girl.. that was my calling. Instead, after staying here a few years, working to make enough money to move, I met a handsome young man -and simply after one day after our chance meeting.. I found myself exclaiming to my girlfriend
" I have just met the man I am going to marry" then just as quickly I found that I sucked in those words because I could not believe that I had uttered them. I was not the marrying type...and even the girls in high school voted me the most likely to travel and never settle down.
So... My first major mistake - getting married because I thought it was what my mother wanted of me - it would bridge the gap, make her happy..make us closer --- so I did what I thought was right instead of what I thought was me -- -----Life became a a blur of babies, bedlam, bottles and barters for sleep ...and soon my handsome young man was no longer as interested in me.
I remember the look that passed between them on the forth of July. ( The universe loves to choose the same dates in order to to drive things home.) The graze of eyes was electric and was seared into my brain. It does not matter what her name is - or even the face...because, as I have painfully learned, someone else would have filled the shoes if not her.. what matters is what I have now long after discoverd... I had been vying for my mother's attentions , have not learned to love myself enough, did not choose myself over her, and therefore gave my power over to someone else. I invited her in!
We have been locked in battle ever since... till now. I had a chance encounter with her today...no different than before - we ignore eachother and slide by like slimy snails ...but this time I stopped to remember who I am and and I knew that if she knew all the horrific thoughts I have had of her over the years.. she would laugh out loud as I am doing now...and I realized that above all.. as it was when I turned 22 ..all I want is freedom. I will be choosing myself this time around - thank you very much!

So tonight's voice, along with Caleb's stengthening voice will be mine - strong and clear -- I will perservere, I will choose for myself, I will pay attention to myself above all, I will choose differently -- Thank you my beloved Caleb for showing me the way! Thank you for helping me to turn the corner.

There are days, maybe now even stretches of days where I really do envision us as" making it", then with a single blow we enter into a night like last night, which threatens to unravel us to one single silken thread that some bird will most likely spot and simply add to her nest...leaving absolutely nothing left of us behind.

Kai is sporting anger, which like a cheap suit, does not sit well on him. It bulges out here and there and it folds and crumples him and makes him into someone I cannot recognize. I am worried again, and sleepless after a longdrawn out night of sitting up with Max, who is suffering inside and does not have the tools to work through this particular pain of ours . So I pace and I fret and I run between rooms to check on Caleb, and then to check on Kai and then back to Max, all of whom have become patients in their own way in this hospital house of mine. I am wearily making my way through night shift and don't know where I will find the strength to continue into another day.
I have been accused of writing of things too personal to share here in this space, but I feel strongly that if we can give a name to someting frightening, it then becomes more familiar and is forced out of the closet so that we can face it down with integrity. If I can reach but perhaps one young mother who is traveling down the road that I did and I can get her to recognize this and turn around , then this writing , this spillig of my soul is worth it to me.
When Max was young and Jan and I were recently separated, against my better judgement, I allowed him to become Jan's child. I think that at the time I believed that it would somehow link Jan to us and force him to become the father he never knew how to become ..I was wrong. The effects have been just the opposite and Max resides in a body that is prisoner to this miscalculation.
It has taken me years to reconcile the love that people had for Jan and the distaste I had for his ways. With age and experience under my belt, I have realized that he could be both -- and both he was--a loyal friend, a "great guy", a wonderful boyfriend...but to us, and to me in particular, he was difficult at best to understand.. My mistake, and one that I so regret...was in letting Max be the "fall guy " who got caught in the battle between.
I should have insisted, in spite of Max's loyalty, on wisking him away and taking him back into the fold. I simply did not trust my instincts the way that I do now , and even tho I can forgive myself for this, I am left with the risidual mess that I helped to create.

And now I apologize if I have spilled too much...but I am weary and tired and forelorn.......the night shift is over and I am just wanting to find a sliver in the clouds where the sun might reach us again.

This night, not unlike many others, Caleb and I are alone for dinner. Kai is off with his beautiful and lovely inside Lizzy and Max is off fishing at the gut waiting for his equally lovely Laira to get off of work ... so Caleb and I are standing together at the kitchen sink shucking corn and rubbing the fine silk off of it, slicing into the first juicy home grown tomato and talking about how delicious dinner will be when he phophetically announces " but when it is done..it is finished."
Which brings to mind my feelings about life in genenral...we have had some really rough moments, some incredibly difficult days, some notorious nosedive nights, monumental months ..and still I want to wake each morn with a renewed look at life.. I want to figure out my demonds and face my foibles and realize that yes .. when we are done, we are finished - so why not try to get it right this time around... I am a the perfect example of a life gone wrong... I thought that I had it figured out, I was soooooo together, I knew with certanty that I was certain......what a farse this silly little life of mine....
I sat today with Caleb, rubbing his head as he tried to fall asleep, my hand sliding over his bumpy railroad track of raised skin scars...and I said to myself - I want to get off at this stop - where all things are well.. he looks like the same ole Caleb I remember and want - but I do not get to choose...this is what I have to work with--- so work with it ...and remember that when it is done - it is finished....
so laugh away the days and find peace with what is ... and love .... just love!

Caleb's Nurses Visit Wellfleet

Thank you to Cortney, May and Corey for sharing these photos of your visit last week. It was great to have you ladies in Fleet. Hope you'll head back this way soon!

We are bound as a family to Caleb and his physical/ mental condition, so instead of trying to overcome it, which would be futile and frustrating, we instead simulate his handicap in order to understand it. We have all slowed down a pace; we all talk a bit more leisurely, we saunter to wherever we are destined to go , we mosey through meals, we delay chores,.... in short, we are living the way that I believe we were all meant to-- a fine tuned, metronomic pace of slowly measured ticks that moves us through the day...not huridly, but well marked and almost casual... as if we are living in a dream.
.....and the effects on our personalities? well..I should have behaved this way long ago. Not much can ruffle me, not much can shock me, not much can give rise to my temper.... I have lived through hell and have come through the other side of darkness back to light. I appreciate more, and the subtle changes in my personality are welcomed guests who I wish will never take leave.

It is by no means a picnic having a child who has suffered so many humilities as Caleb has. It is no means a simple task to traverse the choppy waters of suicide with your children, ...but long ago in a younger phase of my life I vaguely recall a dream I once had where as an older woman, I was standing with my three sons , old and tired and towered over by them now that I had shrunken to a diminished size. But it is the look in their eyes that I remember clearly as they peered down on me with love and I call to mind the fullness of pride that welled up inside...and I know that we will make it to that very same point...... somewhere down the line.

Like old friends, indeed, we here on this blog connect in joy and in sorrow....These kind gifts filled with your words sustain me and keep me centered throughout the day and the wisps of musings come to me in the night to cradle and to rock me into the dawn's new light.
I feel comforted by all...and by knowing that there is nothing more powerful than a mother's prayer!

If we only allow ourselves to breathe through it ..the next day usually turns out to be a better one, and so it was with today. I refuse to live a boring, airless life...and Caleb, who taught me that long ago, is still teaching. I will say "Have a nice rest" and he will reply "Have fun". I will say "I'll be in the kitchen doing paperwork" and he will respond "Have a good time" I will say "Goodnight and sleep tight" and he will always wait till I am almost out the door and he will echo "Thank you".
Somhow I knew if I stood in the summer wind and watched the summer moon rise, things would shift.

There seems to be a bit of stardust in that boy of mine!

I am scorched, not only by the sun , but the realization that we have a ways to go before we can determine how Caleb will do in the future. Tonight as we eat dinner, he is asking for his real mother - and I am sittting across from him, staring in disbelief. This is the kind of emotional fire that when drawn near... only burns, but never warms .
Jenny comes by and reports that hot shot surfers are reaming out others..mostly their best friends.. for dropping in on them...when Caleb only ever went into the water for the sheer delight of it ---to have fun and to push Kai off his board at every opportunity...and yes ...I do find myself asking why? Why my kid when there are other's who seem more suited for danger and are less appreciative of life! I know it unfair of me ... but those are the thoughts!
Remember ..Life is a daring adventure..life is a daring adventure!

I netted and dragged a bloated and very dead chipmunk out of the fish pond today..perhaps and oversight on his part as to how far from rock to safe rock... perhaps in curiosity he leaned over too far, perhaps he jumped out of frustration..I know not! But what I am learning is that we are ..none of us safe from what will be and it is only in our imaginings that we live fully - be well and think happy thoughts!
Not far from the busy highway is the rock wall... not far from the rock wall is a sapling. That sapling will grow and overtake the wall at some point.. that seemingly weak sapling will grow into the oak and the oak is stonger than rock! History has not been written yet!

There are times in your life when all things seem good, and this day is one of them. The cat stayed out all night and fought off the coyotes single handedly, the humidity is down and the MGH. nurses are here. I have been waiting for this visit since the invitation was put forth. Toasting them at a table full of friends, and sitting under the canopy stars at Mac's Shack, I found myself saying " The doctors may have saved Caleb, but these nurses saved mine.." And that is the truth! These young women are dedicated, kind, thoughtful, professional, funny at the right times, and on top of that they are luscious and bodacious. The boys of the beach who gave them all a successful surf lesson yesterday joked about why it really was that Caleb pulled through with this staff peering over him!
We are off sailing today with a cooky professor/sailor friend of mine and then a trip down the streets of PTowne should top off the night.
I am learning to look toward the directions that bring joy. Sounds so simple, but each day I find myself strolling back toward sadness and prying into pain. But now I find I am able to pay more attention to my emotions which vividly act as the barometer to my present moment........ and I am learning to choose differently, just by paying attention and switching my focus.
Today I am grateful for life, for my children, for my well being, for my ability to be joyous and sad, for all of life's lesson which nudge me forward, for all of the people who walk with me ....and for Caleb's lovely nurses. Bless you.

We are all connected, and so I imagine that you too are becoming a bit more used to the new Caleb, just as we are. The parchment paper layers of emotion that we peel away at each day reveals another and always yet another feeling to deal with, and this rawness leaves us bloodied and spent sometimes, and then laughing at others. The ups and downs of having the kind of year that we have had allows us to re-invent ourselves each day...because with pain, and the unbearable burden of it, also comes rockets of desires that we shoot off because we hope for a better way. We have to insist on it to get through another 24 hours.
I do not know why this course is now ours to follow...I do not know how we manage sometimes...I do not know where this will all land, but I do know that love never fades .
I have been remembering the morning how it was that I walked into the silenced room where mother had died. The permanency of it. Caleb is holding my hand each day and breathing a thank you of gratitude at every turn. He is smiling and studiying the birds who perch outside his window seemingly for his entertainment alone, and I watch from the shawdowed corner of the room and am glad that tho this is tough, it is not by any means permanent,and I bear witness to this miracle called Caleb.

July 4th Parade. Wellfleet. Pirates Take Grand Prize.

Pirates take over Wellfleet


Cedar and Caleb heading to the pier


Captain Yellowbeard and his crew


Kai


Linette, Jill, Shannon, Caleb, Keri, Cedar, Amy and Ennie


Cedar, Ennie, Jill, Linette, Amy and Sky


Sharyn, Cedar, Amy, Jill ('s hair), Caleb (with Grand Prize trophy) and Ennie



The crowd looks on while the pirates entertain


The next generation (Dante)

[Photos: Sky]

Check out this video (thanks to Kevin):
Just click on the play button in the window below...




More photos from the parade (Thanks Kevin and John!)

It was no accident that twice when I tried to call Max today, I instead got Jan's answering machine. "Hi this is Jan"......and then the familiar voice that followed. At first I was slightly annoyed, then frustrated, finally amused... and then a calm came over me knowing that he was joining us for the day!
Caleb was in full regalia at the parade, beaming and playing the crowds as usual. He was light dancing on light and was connecting with a memory of past that was built into him like a fine tuned machine. . As a tribe of pirates, Caleb and friends never officially signed into the parade roster in years past, or this year for that matter ... and Caleb always lamented the idea that they could never receive the big bang prize of "best in show" without being "legit" ....however the judges saw fit to hand over the golden trophy today to the man who would defy the odds. Thank you for that kindness!
My pleasure was in not only seeing Caleb march again, but also in meeting so many blogger friends who were so kind to show up and say hello and to lend their support...... and of my silent girlfriends who escorted me wherever I went.

At three I woke Kai from his slumbering dreams of days gone by to celebrate and toast the year gone by. It was around three that I stood in the kitchen, barefoot and exhilirated from a lovely day watching last year's parade....when Shaye called to let us know that the mighty pirate had gone down.... it was the call which would change my life forever.
It was the call that would change my life from now till eternity. That call is now a ringtone that has been branded into my cells!

As we left his friends and brothers on Fisher beach tonight after an exhibit of fireworks, compliments of PTowne, we stumbled like drunken ole friends down the quarter mile of dark beach to get to our truck..arm in arm ...my eyes weary from age and sadness..his vision diminished to one ...and I thought for a moment that I just might be jealous of all the young people we had left behind so full of promise with lives untouched by Father time. But as youth passes, and the blazing fireworks pass as well......we found we were were following the dim light of the skyline, stumbling- yes-but still with one another, hands locked in hope.......and I realized I would not trade this moment for anything!

Happy Fouth of July

The Fourth

The Pirate Route will be :

Jumping in on Holbrook about half-way between the Pier (which is where the parade begins) and Main. Continuing down Main through town.. down to the boat , turning back on Commercial as far as the Juice. I will be in front of Kevin's Spirit's Shoppe with Kevin as I always am. For those of you wanting info on the parade - the old cars start around 9:30..the parade starts at 10- but it really is always about 10:30. However since Fleet is small and they close down the streets, you must get there early!

I would love to meet any or all of you who are here--I don't think I will be holding a get together at Long Pond as I said earlier that I might because we are still quite overwhelmed...but walk up and say hi in town.

I am looking forward to celebrating all that Caleb has conqured over the past year and for all of his accomplishments. I am one proud mumsie! Thank you all for being with us --we are all walking this walk!

Another night in the ER...but this time with the 3rd Potter boy!
I can remember all of my sister's going off for a day alone with my mother, a rare occurance with 6 kids, because they needed glasses and I never did. Boy did I hate my 20/20 then. I felt somehow as she carted them off that I missed out on all the attention that would certainly be slathered on them for the day....well now all 3 Potter boys have had their turn alone with mom and I hope we are in the clear. It was difficult at best, as we near Caleb's one year mark, to sit in a waiting room full of distorted memories of sleepless nights and heartache and fear. Watching other mother's holding their crying child; their fears echoed in their child's eyes, ... staring at old women with thier even older fathers who sit and twist at a wedding band which threatenes to slip off the crusty and knarled knuckle...the last reminder of a life once lived. The endless feeling of waiting for your name to be called when it reminds you of those horrible gym line-up's where you think you will most certainly be the last to be picked.
Max is probably facing the fact that he has a bleeding ulcer.. not so bad in the bigger picture, and we can deal.
What still remains - is what remains...we are all here together and facing a new day with a gentle breeze and an even gentler reminder of what counts as we pass our time together.