Jenny

Young love is so sweet and promising.

I want to take the time to express my gratitude to Jenny for standing by Caleb's side through all of this. She has been here every day since he returned home,finding the time to see him tho she was juggling work and school. She drove to Boston (when we were there) when she could - usually once a week; scaled down her work load and was completely broke so that she could be part of his healing. She asked the Doctors poignant questions and smiled when the pretty nurses flirted with Caleb. She has rubbed his head a thousand times, cleaned him when he had accidents, and looked across the bed in anguish to mirror mine when he was not doing well.
I was not certain of Jenny when she first appeared on the scene--she was afraid of the dark, had to be accompanied everywhere, and was much more of a girlie girl then I would ever be...(it is a mother's perogative to scutinize.)
She was Caleb's second serious girlfriend and as a second wife, I always felt that I was misunderstood,out of favor and generally disliked. There was always an uneasy queasiness, a recoil with my inlaws and I was determined to not let Jenny feel unwelcomed......
She has proven to be the substantial young woman who I hoped she would be and I admire her for her staying power.

I have learned so much from the younger women in my life. They are soft and yielding, stunning in their youthful beauty, but most importantly they have dignity and they know their truths. Long gone ( and so may it be) are the days where women will setttle for less.....at least with this crop of adolecent Wellfleet women who I know. They are determined and satisfied with only the best that life has to offer. Hats off to them!

So as Jenny packed her things to go off into the dark last night ... alone, unattended..... Caleb walked to the french doors to watch her go
and I stood behind watching him watching.

Thank you Jenny!

Girlfriend update!!

I lovvveee this picture. This is Caleb on his boat, The Get Go. Look at Caleb's face, he is enjoying the moment he is experiencing to the fullest, with his eyes closed and the cape cod wind in his hair. I am trying to think of something reallly good to write here, but i want people to interpret it their own way. If i have learned anything from caleb, it is to live every moment and cherish EVERYTHING and EVERYONE!!!


---Hello everyone...jennie is back writing on the blog. First off, Caleb is doing very well. Like Sharyn said before, one of caleb's meds were lowered and now we are back on track with his progress. Caleb has been going on little outing these days. His brothers and friends have been bringing him bowling once a week for the past couple weeks now. I went along one of the days, because I wanted to see caleb in action. It almost brough me to tears watching caleb have such a good time and acting like a normal 25 yr old. Max and some of his friends are on a league at the bowling alley and they are really good, so they make caleb's experience even better.

---Kai has been coming down over the weekend and when he walks in the door and sees caleb for the first time in a week...you can see the true love that these brothers have. It truely is beautiful and can take your breath away. Max is at the house everyday helping shrayn and caleb with everything and anything that needs to be done. He is really shining and he loves to spend his days with his older brother.

----Caleb is still going to therapy at RHCI and is making alot of progress. All the therapists who help him are so caring and i personally think that they work extra hard with him, because they also love seeing him get better and better throughout this recovery process. He was with Lee, his speech therapist today and they were working on initiation of asking question, and she asked caleb to ask her a question and he said, " do you like working with me?". How adorable is that? I wish all of you could see caleb's face when he asks a question....here is a visual....he raises his eyebrows alittle and slowly turns his head, looks at you with his big blue eye and asks you a lil question. Caleb is still doing workouts everyday, going on long walks with Spud and Boof, doing yoga, getting acupuncture, painting, and drawing. He is a very busy man but he enjoys every minute of it, because he knows that everything he is asks to do, will make him better.

---Since Caleb has gotten back from his last hospital stay, we have not been able to go out on a date. And caleb and i used to go out to eat alll the time, so that was something i was really missing. But, Caleb and I went on our first date the other morning at the Wicked Oyster and it was soo fun. Before Caleb got hurt, we would go to The Wicked and get breakfast sandwiches and go eat them on the beach. We did this every weekend and i have not had one since he got hurt. So...Sharyn let me take caleb out and we were both really excited. We drove there holding hands and we sat in the corner of the restaurant, so we could have some quiet and alone time, because we dont get that alot anymore. We order our sandwiches, and caleb ordered his own, asking for the same sandwish he used to order. and didnt even have to look at the menu. We "clicked" forks before we ate, which was this lil tradition we used to go before we ate and we enjoyed an amazing lil date.
-- As sharyn mentioned before, I just graduated from a Certified Nursing Assistant Program. I am currently...Jennie Smith CNA. I am working at a nursing home and really loving it. As sharyn says, i am now a workaholic, working two jobs, but making sure i see my caleb everyday, even if it is for 20 minutes. I get my caleb fix for the day. All i need is my bear hug and kisses and im good for the day.

---So i think i will be posting a blog every week, letting everyone know what caleb is up to these days. I will be taking pictures and posting them, so you guys can see how good he looks. thank u everyone for your continual support of the blog, none of us could have gone through this without all your prayers and love.

"If I Had To Live My Life Over" -By Erma Bombeck

(Written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn! With my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love you's"; more "I'm sorry's."
But mostly, given another shot at life, I would seize every minute...look at it and really see it...live it and never give it back.
STOP SWEATING THE SMALL STUFF!!!
Don't worry about who doesn't like you, who has more, or who's doing what. Instead, let's cherish the relationships we have with those who do love us.
Let's think about what God HAS blessed us with, and what we are doing each day to promote ourselves mentally, physically, and emotionally. I hope you have a blessed day.

WOW

I am humbled by all of your comments-I was never seriously wanting for anyone to feel guilty about not writing in.
I realize, rather than telling, I should have asked if we should discontinue this blog--after all it belongs to you now just as well.
I am going through a really rough spell...all those tears I could not release from July 4th till now are draining through. I literally cannot stop crying. Kai, that wonderful, sweet Kai will blog for awhile to let you know of Caleb's continued progress, and I am assuming Jenny will as well. Max, as you remember, is the strong and silent type.
I will be back as soon as I can hold it together. I need this!
Thank you Beth for the reminder that things can always get worse, as they did for your family. I once remember saying that as well- and that is how I have come to know that I need to just breath deeply again and trust...I have lost perspective.


And to all the rest of you who wrote in..you are @%&*****+++%%%$$$$$$$###### ing amazing.
And to the rest of you who chose not to write in-- the same applies!

Thanky you all for being there. mumsie
PS. to Blackbird- I hope we have that talk.

Adios mi amores

This will be my last entry. With the decreasing numbers in people who respond, I at first felt hurt and a little dismayed, (I have come to rely on you so) but upon closer inspection, I realized that those faith-filled people (as all of you are) who have moved on, had come to some kind of conclusion that Caleb is fine and it will be alright for them to proceed with their lives trusting that we in turn will be fine without them............and this is so.

A private letter to me...

I admit to being schizophrenic.
I live a double life. The outside Sharyn is full of laughter and luster. A whirlwind of tosseled blonde hair who can't sit still for a moment. A sneering perpetual grin smeared across my face, spread thickly; a peanut butter and jelly smile with licking lips as tho perhaps I actually witnessed the original sin. People are drawn in....But I hide the real me deep inside like a prisoner in lock down. Even in brief moments when the doors were flung wide open, I never let myself escape to freedom.
I hid the real me......... I thought there was virtue in this.
The thief of my soul who sent me to the shackles answers to the name of hatred. Even as I write this I find a delicious comfort in the idea of exposing names and faces attached, but I have learned that revenge does not peace bring, and through all of eternity the theme may be the same while the names and faces change- ----but how you change is what counts. I have allowed myself to wallow in self-pity for years and now all I seek is the peace that forgiveness brings.
There is no simple highway that leads to the road of Caleb's accident. It is salt and peppered with faces that bridge to one-another in a twisting, turning, connect the dots, dangerous course... one that I perpetuated with the velocity of venom.
Everyone who you will ever meet has a connection to you ....the trickle down effect of who you are and how you conduct your life is staggering and comes full circle........and so the story goes.
I would not learn ...... how to forgive. I realize that I held pain so tightly to myself that it began to feel like home, even as it began to choke me. I now realize that to forgive means not that you agree with the behaviors of others, but rather that you agree with yours ...and in doing so you beckon freedom to yourself ......and with that the clutch around your throat lets loose with a sigh that can be heard way up in the unearthly blue.... . If you walk away from this scrawl without checking yourself and cleaning out your closets that are blanketed with the need for forgiveness- then I have lost what I have set out to expose.........Hate remains till pride is gone!




I cannot bear to begin to imagine that I will ever laugh again. Will I be destined to seek out new friends whose children's lives have been altered like mine because I cannot any longer listen to the lovely prattle of everyday conversation? Will Caleb's well intentioned friends slowly move forward and quickly leave him behind? Will I be forced to watch young men dance with their mothers on their wedding day while I claw at my silken dress? Who got to toss the coin of fate for him and where will he land? Like the lucky penny ? – face up and we will anxiously bend to it with a promise of good fortune or will we rear back and ignore it as we attempt to stall our fate as it lands face down?
The feel of this pain is like staring in to the wide opened, gaping mouth of the child whose balloon was whisked away from pudgy hand in a sudden flurry of wind.
The silence in that moment before the wail comes forth is where I reside.
I have left a thousand footsteps in the sand in a feeble attempt to be counted on this Earth and to be remembered. But footsteps are meant to be washed away with a gushing tide that wipes the slate clean and prepares for the next set of travelers to walk on uncharted sands, tricking them into thinking they were the first.
More than anything in this world---I want my Caleb back..........
but now our old footsteps have been erased by the moon's mocking grin ..... and we walk forward digging our toes into granules that have swallowed many a mother's tears.

Bless all of you for walking with us.

We were having a bit of a problem with Caleb's meds and the proper dosage. He was getting sick to his stomach, experiencing headaches, had a blotchy red face, and was becoming withdrawn a bit- so now we are back to all of us feeling better since Caleb is feeling better.

Jenny has decided to get a nursing degree (she certainly has had enough of nursing over the past few months to know that she will be good at it) and I am thrilled to know another great care-giver will be standing in line to help all of those out there who need a smile and a hug...the best meds there are. We were so fortunate to have the cream of the crop at both MGH and at Spaulding and now we have the very best of OT's, Speech and PT's for therapy. We have been blessed.

Max is setting up a weekly bowling outing for Caleb and he is never so happy as when he is with his guy friends just hangin out.

Kai is trying to hang more with his adorable girlfriend, Liz who has been more than patient and understanding as Kai heads back to the Cape every weekend and leaves her behind.

I have posted on my computer the quote that was sent to me in the comments;
"Life is either a daring adventure or nothing.
To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable".

I will be skinny dipping soon !
Love, mumsie

coyote moon

It is a coyote night- big moon with flooding light to catch a glimpse of the animals of the night who usually dart about unseen. Beauty in disguise.
Caleb has given me a new life ...a questioned life now.... I stare at a picture that Claus took in his circular window..it is me when I was young and beautiful- tho I did not at all know it then and could not begin to see it because I did not feel it--now I look into the mirror - and tho I am wrinkled and have sun spots with brows that turn gray in spite of constant plucking..-.. I finally know how beautiful I am. I can ferret out just how flawed I am and I like myself in spite of it all. This is true beauty.

As I mentioned, I have been cleaning all week ... but the house of me is still dirty....
I grew up with a healthy dose of mistrust of women and so that is what I drew to me in spades-- women I could not trust. There is one in particular who looms darkly in the corner- who like the coyote lurks and reminds me that she is dangerously darting about and it is only with acceptance that I can rid. I am trying to see the flip side of the coin in all things - and as I was today contemplating this woman I realized that because of her I have invited and introduced into my life women who I can truely trust and who love me. I have moved beyong those dark, frightening boudaries and will never have to revisit that pain. In this she has been a gift and I can let go from the suffering that like liitle wrapped feet binds me to such discomfort.

With Jan - I am asking what part I played that could possibly have him hate me as he has...hate me---- the person who once adored . How did we get here? I am trying to remember what I once loved about him that I now bury so deep to keep the self-righteousness so infallibly alive....because of him I have learned to be a self- examining, self reliant human being. Always keeping myself in check and knowing who I am as a result of it. He has given me the gift of faith and belief in myself - and what better gift than this!

Caleb is well- he resides in my every waking breath- this is an all incompassing job and one that I have been groomed for- for all of my life. The tough get tougher and I now know that in all of my weak moments , where I had to call on every ounce of strength to get me though--well those are my coyote moments-- lurking and preparing to catch a glimpse---of the unseen beauty that is mine and mine alone.

Typical Sunday morn.

Kai and Caleb just finished making Sunday morning banana pancakes...and polished them off without chewing. They are presently trying to rouse that sleeping Max in order to take a dump run for me while I scald myself with that fifth cup of coffee. The Times sits on the chair still coalated waiting for the curious seeker of bad news.
Life seems almost normal in the Potter household.
After a grueling 8 months, we are finding our stability in ordinary life at home. We are accepting in order to except and more more frequently we are finding our balance in laughter, as has been our sanctuary in the past.
Caleb is stronger than all of us and I catch the boys with a sideways glance watching him as tho he knows something that they don't. Caleb has bequeathed us with an urgency to get our lives right, to question those safety berms we hold to our sides, and is nudging us into a healthier state of mind. Caleb's stillness has made us loud with intent.
Now when I wake in the middle of the night I can tell my heart is slowly mending itself ..it is no longer a mess of puzzled pieces on the ground trying in vain to make sense of this picture.
Kai and Max continue to inspire and Jenny plays witness to his smile every day.
I will be burning today- nothing better than a good blaze to fuel the thoughts and sear the fears.
We are ever hopeful- ever willing and earnestly looking forward to growth. Spring is in the air.
Love to all of you, mumsie
PS. On Caleb's slate of goals is a listing: to walk in the forth of July parade as Yellowbeard...we will see you there.

Blind faith

I was living on the Cape at age 22 and returned home to buy my sister Carol's VW bug, drove the 800 miles to Wellfeet only to have to fly back the next day. Carol was broadsided by a drunk driver and was in intensive care. I was met at the airport by my brother Steve. He is a man of few words but the look in his eye told me it was grim. He said to me " You need to be strong for mom" - no - can you be strong? - just "you need to be." His look also said- I believe you can do this---- and so I did.

When I traveled cross country with my 3 little ones and Cedar in tow I drove a Camper which was given to me and believe me-the old adage," you get what you pay for " applied.. The floor board on the drivers side was wide open to the road in parts, it was covered in rust and was making funny sounds as we pulled out of Fleet for a whirlwind cross country tour. Our pit stop in Ohio on the farm brought peels of laughter from my sisters all poking fun in good spirit, but it was my brother who said out loud--"If anyone can do this, Sharyn can." --- and so I did.
Isn't it that blind faith that someone has in us that can make us pull ourselves up by the bootstrap and carry on with the belief that we can?

As I sit with Caleb while sleeps in the early morning hours when only the outside world is whispering, I tell him quietly..."You are healing, you are beating the odds, you will astonish everyone with your recovery, you are healing easily and completely." ------and he will !


I have contemplated so many times what it is that brings you all to us at this time when it is so badly needed. You have helped us so much more that you could ever know....and I could stare off into this moment forever.........mumsie

Happy Valentines Day!

OK you stiletto tall-thinking people- youv'e done it again! We are back home in one piece with good news. From the looks of the latest CAT..all the air pockets in Caleb's brain have re-absorbed naturally and his ventricles show no more enlagement than before - so we are back over the bridge, safely snuggled in for naps, close to ocean waters and salty air mixed in with my double-day stored up sigh of relief.
Now for the best part- I walked in to find a hugh bouquet of flowers - all white as Sheils knows I like em..with a hand written Valentine from Caleb. " Mom...from your boys who love you alot...so thanks! Love ..the boys".
And thank you.........
Leaving Boston is always a mixed bag of feelings for me--always so happy to be coming back to Fleet and yet finding it difficult to say good-bye once again to our fabulous nuggets of nurses who we have come to love and adore. We stopped by Ellison 12 and Spaulding for hugs, kisses and well wishes and we expect to see a good number of them on the Cape this summer. Watch out Cape Cod beaches!!!!


Again - sending you white flowers of thanks and thoughts...
As white as the flowers which adorn the table...as pure as my gratitude is to all of you!
The Happiest of Valentines days to you....mumsie

Trip to Boston

"What lies Behind us and what lies Before us are small matters
compared to what lies Within us". Ralph Waldo Emerson
We are off to Boston this morn to determine if Caleb needs that shunt put back in...
be with him please! mumsie

Lucky stars

Caleb is gaining ground and is experiencing some freedom. Today is his second time out with just the boys and no mom running around watching him like a hawk. Where does one go on Cape Cod on a blistery cold day to have fun? The bowling alley! He loves it and I love it for him. He not only bowls a pretty consistent 72 average, but he is in charge of the score card and does his math with precision. Watching from behind as he and Max walk out the door.... well it looks as natural as could be.
In my heart I know he is going to be just fine...my mind plays tricks on me, but my heart stays the course.

I have never been the kind of woman who cries easily...I can easily count the times over the past few years that tears were shed- but last night the dam broke free and the deluge of hurt was let loose. I no longer love innocently but instead with a fierce arc of desire that circles around all of my children. This torrent of tears was a sign of letting go and I knew immediately that I was finally beginning to trust that Caleb is fine. The even better news is that I think I lost three pounds from that!

I am so proud of my family-as I observe I see that each of us has decided in our own way that we will not let Caleb's accident define who we are or who we will be. We bravely put smiles on our faces and go about our day , and take pleasure from the little ordinary things we do. Life does not stop for us while we are grieving and so we must not stop for it .
I have been openly observing my demonds as well and I want to take the time to suggest to you that simply by wishing to forgive with sincerity; the process begins. I have been aware that my thinking has begun to shift and I am beginning to see that all those years that I was left alone to raise three boys has served me well and has given me the necessary strength that I need to survive this situation. I am beginning to see that Jan must have felt that I was so capable, and in doing so he has brought it about. I am beginning to thank instead of blame.
I have a long way to go and so many more musty skeletons still reside, but I am determined to see things more clearly in this lifetime and not wait around to see if I can re-do in the next. Caleb could not have been more instramental in bringing about the change that he has, and I bless him for that.
I also thank my lucky stars that each time I sign off from this computer I choose , just like Caleb did, to hit the sleep button instead of the quit!

Letting go

I needed a distration today, when for the first time I allowed Caleb out for a period of time without me, so I started cleaning . I have polished off the kitchen and the hall- washing the beams and then the walls and the floors- Cinderella style,on hands and knees, then taking out all the ingredients pilling up in the cabinets and washing below and above and throwing out all the extras.
I recall doing this with the same intention- when I was having my firstborn who was to be Caleb....
So then long ago- 25 yers to be precise- I was preparing for a birth and now I am preparing for a re-birth. He is just older now, but is coming into this world with the same big expectations as before. No-one will stop him. No limitations are placed and the sky is the limit.
As I clean I listen to Andrea Bochelli at sonic boom level and I cry alot.... but many of the tears are for the posssibilities rather than the losses.
I look at him and I search his face for answers- but what comes back to me is - what ? I am still here and I am oK and I am just feeling my way back to home. I am trying to make my way back- don't resist- just let me be.. I am well and locked inside but not for long.... Love mumsie

Caleb and his progress

When we first brought Caleb home he was so weak he could not get up without a helping hand to hoist him...he is now getting in and out of bed alone, climbing in and out of the car and is enduring and enjoying a 25 minute daily workout with weights. He has yoga twice a week, has acupuncture which has helped rid of his headaches, takes a long walk daily with the dog and our cat who thinks he is a dog...and is generally in pretty high spirtis, all things considered. We have checked out puzzles from the library and sit around evenings fitting together pieces of cardboard, and fitting together the pieces of our lives.
Max and I take him to MGH next week for a scheduled CAT scan to determine if he has to have another shunt or not...we are pretty certain that if he continues as is, he will be able to do without it---this is major!!!
I am trying to schedule a visit with plastics to determine if we can lift the left side of Caleb's face to match up with the right. He is young, and handsome, so we want to give him every possible advantage to enable him to feel better about himself in the future. We are a good team; each of us with our own particular strengths to bring to the table and we are becoming streetwise punks when it comes to Neuro.
We have had a punctuation in our lives as they were but are settling into a new syntax and with Caleb waking to each and every day with a big broad smile, it is difficult to feel sorry for ourselves.
"And I say to myself, it's a wonderul world."
mumsie

ahhhand ohhhh

Sitting on a floating dock at the Pargo Rojo in Bocus del Toro, Panama , surrounded by balmy waters and loitered laughter with my Frozen Daquiri in hand -my companions were two handsome young surfers in their 20's who found me amusing. The owner was an Israli who had had his tongue cut out ( I never asked) and a piece of his thigh sewn back in so that he could amuse us in return - which he did. He was peevish, but took a liking to us so dinner was otherworldly... I can remeber thinking this was as good as it gets - an ahhhh moment in time . ...an ahhhhhh moment in time.
There are always two sides to a stick and now I am in a Ohhhh moment in time...but are they not one in the same?
The ahhhh moments are to be savored and enjoyed for what they are..just like the company and dinner. A space in time to cherish, a space in time to replenish.....
But it is in the ohhhh moments that I find I learn the most . I am trying to learn to cherish these moments too. I am a seeker as I know all of us are.....we love; we are dissapointed, we laugh; but feel empty inside,
We are proud, but we feel we don't deserve....we are fearful and whistle into the dark to soothe ourselves.
Yet all of my questioning dissipates when I realize that Caleb was only 6 months ago, a thinking, functuning human being who was the life of the party -and the heartbeat at our dinner table. When I expected company I called Caleb in hopes that he would be free- he made impressions by making people laugh- he made impressions by being himself- an authentically humble human who always saw the light in others.
The ohhhhhh moments- I am not asking for more of them--Caleb is healing in his own time and in his own way and we are grateful,,,,,,,- but I am asking that I can see through them to the other side ..I am asking that I can cherish these moments too; knowing and trusting that we as a family will move through this to a better time and a better place and that we will feel replenished in the aftermath. No matter where we land- we cherish!

ahhhand ohhhh

Sitting on a floating dock at the Pargo Rojo in Bocus del Toro, Panama , surrounded by balmy waters and loitered laughter with my Frozen Daquiri in hand -my companions were two handsome young surfers in their 20's who found me amusing. The owner was an Israli who had had his tongue cut out ( I never asked) and a piece of his thigh sewn back in so that he could amuse us in return - which he did. He was peevish, but took a liking to us so dinner was otherworldly... I can remeber thinking this was as good as it gets - an ahhhh moment in time . ...an ahhhhhh moment in time.
There are always two sides to a stick and now I am in a Ohhhh moment in time...but are they not one in the same?
The ahhhh moments are to be savored and enjoyed for what they are..just like the company and dinner. A space in time to cherish, a space in time to replenish.....
But it is in the ohhhh moments that I find I learn the most . I am trying to learn to cherish these moments too. I am a seeker as I know all of us are.....we love; we are dissapointed, we laugh; but feel empty inside,
We are proud, but we feel we don't deserve....we are fearful and whistle into the dark to soothe ourselves.
Yet all of my questioning dissipates when I realize that Caleb was only 6 months ago, a thinking, functuning human being who was the life of the party -and the heartbeat at our dinner table. When I expected company I called Caleb in hopes that he would be free- he made impressions by making people laugh- he made impressions by being himself- an authentically humble human who always saw the light in others.
The ohhhhhh moments- I am not asking for more of them--Caleb is healing in his own time and in his own way and we are grateful,,,,,,,- but I am asking that I can see through them to the other side ..I am asking that I can cherish these moments too; knowing and trusting that we as a family will move through this to a better time and a better place and that we will feel replenished in the aftermath. No matter where we land- we cherish!