Happy New Year

We are well equipped with crackers (not the edibles) and hats for the New Year and spirits which look forward to change. Today is the day we will find out how much longer we need to embrace hospital life and Caleb seems up to whatever has to happen. He has had time to relax and eat plentifully; has gained some weight along with perspective. He has never wavered from just being pleasant and positive whereas I am finding life up here to be suited only for the criminally insane. Where he constantly holds his head up, I drop mine feeling old and obsolete like an extinct breed of animal. His strength is constant. His focus is on healing and I feel often times I am concentrating on the pain and helplessness and physical humiliation which he has had to endure. I am fearful of the future and worried that the memories of Caleb will escape to the underground. Feels like forcing the hands of time backwards like dammed water at the same time that I am loosing the grip on the slingshot releasing us into the unknown. I will wish for a changed outlook for the coming year.
Kai and Max have had a break which I practically begged for- they addressed the dusty house and the musty animals and are ready to join me either today or tomorrow depending on our verdict and Carol and Ray came by for the Christmas we missed so we have not been alone.
I crawled into bed last night feeling sorry for myself, for the boys and for all that has transpired. I do know that we will survive this and we will be better for it- but sometimes the thick of it is engulfing and I am consumed by smoke and cannot breathe. Yet.......
This encounter with all of you has evoked our souls and I keep hearing the pleading in your words rolling over and over again in my brain like a soft whisper in the winds . "I love you more than even one more day".
Love mumsie - and a Happy New Year to come for all of us!

Half empty

The days are moving slowly as if in a dream one cannot wake from and this time around, after having been home for 3 weeks, I am actually finding it more trying to be here. Caleb, however is thriving. He is gaining strength and endurance and if we win this medical lottery, he will continue as is and won't need the shunt back in. As far as I can tell, the test on the 31st will be the determining factor.
Kai and Max are taking a bit of a break at home, cleaning and preparing for another homecoming, even tho I will be the only one returning. I am excited about his going to RHCI in Sandwich. It will get him back more quickly to where he was when we did have him at home and give him a jump start for therapy in Orleans.. It's amazing how quickly one deteriorates just being in bed all day. As usual, his spirits are good.
I have discovered that even here, sitting all day watching my son fight for scraps of health - and where I constantly struggle to keep my grip, I can still say that if I find my glass half empty- I puncture it and drain it out imagining worse case scenarios. No matter how far you sink, there is always someone - somewhere who has it worse than you.......Smile on an inhale and breathe life in.

Santa Baby !!!

Here are come pictures that were sent to me of Caleb, Kai, Max and Sharyn on Christmas day!!!

moving towards home

We are nearing the end of our stay at MGH. Caleb was in ICU over Christmas which meant we had to move away from our beloved Ellison 12 where I consider the whole tribe of nurses extended family. His tube which connected to the shunt was removed and we are test driving the idea that he will not undergo another surgery before we speed off to RHCI in Sandwich for the next phase.
Christmas day was a blast. A new friend of mine who owns a shop sent us the most hysterical assortment of gimmicks - right up my alley. We had Santa hats that sang and gyrated, monkey sling shots that made jungle sounds on impact, flashing necklaces and glasses; you name it- we had it! The boys and I laughed the day away, passed out cakes and cookies to fellow patients and Jan brought up Jade's famous chocolate oysters and the best caramel covered apples you will ever eat..The room was decorated to the hilt and we had beautiful hand made little Wellfeetian people snowflakes all over the windows. As I tucked Caleb in for the night he open his eyes, held his hand out for mine and whispered "thank you". I will always remember this day as one of the best..we were all together- bottom line.
The last dose of antibiotics is administered tomorrow- on the 31st Caleb will have another lumbar puncture and then we will see if we get the green light - perhaps midnight on New Years eve I will once again be in the kitchen making my celebratory homemade donuts to bring in the Year. See you at midnight!

Christmas eve

Caleb is finishing his course of antibiotics and then it will be determined if he still needs to have another drain put back in. Seems his CSF fluid is finally being absorbed naturally as it should be- by the brain Yahooo!
I woke at about 3 am and have been captivated by a full(ish) moon peering down at us, me perched by the window and Caleb's chest rising and falling softly under the sheets. We have had a sleepless night - woken every hour on the hour by the room-mates bed alarm, then by the early cleaning man so I just decided to beat the coffee line and sit near my young man and share an intimate conversation with you.
It is one of those gifted mornings where I rise with a gratitude filled heart for all of you and for all that I have, and for who I am. I have grown into someone who I am finally beginning to like. It has taken me 54 years to get here, but the journey has been worth it. This walk has been full of pot holes and land mines and cow dung and I am realizing that stepping into the poo is what has lead me to where I am now: a woman of substance who has a long way still to go - but one who for the most part is willing to laugh along the way while trailing all my many flaws, like a long tail of toilet paper stuck on my shoe. This holiday will ever remain in my heart as I count out the gifts I have been given : the ones I cherish the most.
From Caleb I have gotten the giggles. No one can make me laugh like he does, nor piss me off and then just as quickly disarm me with his charm. Caleb has given me his heart, fully beating, wildly warm, pulsing and pleasing. He is pure, positive energy and is indeed the heartbeat of the family; the one who holds us all together like glue. He slams through the door like he is walking into a saloon and we feel drunk and a little crazed in his presence. He has taught me to not take myself and things in life so seriously.......Caleb has given me a lighter heart.
From Kai I have received the gift of purity. He is honest and kind, quiet and sincere. He is the Ed McMahon to Caleb's Johhny Carson - always willing to be in humble background and therefore is never overlooked. Kai does not settle - he strives for perfection and pushes himself to be a bit more than he was yesterday. He is Zen in his approach to life.
Simply put...by example, Kai makes me want to be a better person.
Max is the mirror that I get to look into. His pool full of big brown eyes calls me on everything and like the good poker player that he is, he is seldom wrong. He forces me in his silent, but deadly way, to look at my shit and to right myself as best I can. Max is a no frills, keep it straight kind of guy who grounds me. From Max I have learned about honesty and the possibility of being humble.
From you - My head swims with all the warm words of encouragement and I float atop the bubbles of kindness that have been presented.
From this laughing,humbled woman who is attempting to be a better mumsie I want to say - Merry Christmas to all and to all a goodnight. I love you.

(click to enlarge)
I just came across this photo. I couldn't help but draw a connection between Caleb's facial expression and your words in the post below, Sharyn.
with love, sky

kiss in the night

It's a three dog night and I am numb form the snow, the cold and the chill of hospital life. Caleb continues to progress and we are encouraged, his strength is awe inspiring and his determination is dense. I still ride the veritable roller coaster ride of ups and downs, of laughter and tears, of stength and weakness, but it is when Kai and/or Max arrive that I find my heart shatters like ice. I have lived through the death of both parents, a good friend in high school, my grandparents and a divoce so I have learned to trust that time does heal and life does go on, but they have no reference for this and I can see the distraction in their eyes and the pain in their souls. It is difficult to suggest to them that they need to let go of the pain and accept when these words are hollow to me and so hard to digest that I vomit them up.
I was asked today to comment on what positive things I could say to those who are following Caleb's story but it is not in words, but in gesture that I find hope. As I lie beside him tonight rubbing his hand till I think his skin has disolved, he feigns sleep and when I begin to move away he tilts his chin ever so slightly and blows a kiss into the dark.
So many of you will be enjoying the company of those you love this Christmas and we wish to remind all of you to enjoy eachother and to take time for one another and to tilt your head ever so slightly.....
Home is where the story begins.
Merry Christmas

A Nice Initiative...

Hi everyone,
The following message is from 'Susan in Portsmouth'. Please take a look. love, sky

This request went out a month or so ago and had a sweet but limited response - I'd like to try again:

Wondering if all of the far-flung members of this tribe might contribute photos of themselves for a virtual family album...I'd be happy to collect and paste if any of you would like to donate. I'm a visual person and would relish images to go with all of your names and beautiful words....thinking that some of the rest of you might feel the same. We are all blessed on a regular basis with fabulous pictures of Caleb and Sharyn and Jennie, et al. - I'd like to offer them a small glimpse of their extended family of friends and well-wishers - perhaps as a "Happy Holidays - Welcome Home" gift!

My email is ssavory@comcast.net. If you have something to send - please write "Caleb" in the subject line.

Susan in Portsmouth

We are on the 19th and Caleb's count plummets and stays there. He is fighting the infection and is strong. The Doctor's say that he will have to run the course till around Christmas and then we can start talking about putting a new shunt back in. Everytime one goes in or out, he is at risk of more infection, but we are running short on choices, and this is a necessary step before we can get Caleb back to re-hab. His appetite is good and the meals are the highlight of his day. Whoever thought hospital food could be so tantalizing? Perhaps with any luck, we will be moving on around the 2nd or 3rd week in January.
Kai will be finishing up with his semester this Thursday and he will more than likely join me full time in Boston. Max comes up as frequently as he can, usually catching a ride with his dad. We are hoping that the neighbors will watch Spud and Buuf so that Tim can join us for Christmas day. Carol and Ray will celebrate with me the following day so that we don't overwhelm Caleb with too many people. I am blessed to have such a wonderful beatings of hearts for Caleb.
Lack of sleep is becoming an issue and I feel myself slipping a bit... emotionally and physically . Like having a burning fevor while sitting on ice cubes. Time is an inch worm and I sit most nights holding Caleb's hand, fading in and out of a delusionary state myself, listening through the diaphanous cutain as the Columbian next to us speaks almost silently in Spanish, counting out the ingredients to his favorite paella, going over and over the chopping of onions and tomatoes and making certain it is just right. He comforts himself with the repetitions.
I find comfort in the sounds as well. Caleb's voice brings me home as does the sound of his IV banging gently against the pole. It is the sound of lines of our boat clanging softly in the breeze in the harbor while we sleep. The boys are small and rock with the waves. The nurse whispers in the dark and I think she is my mother, encouraging me to be strong. The quiet sounds of the night are defening and I try to remeber that this too will pass. Por Favor.

Forward Ho Ho Ho

So as I sit here and miss the smells of the wood burning stove with cinnamon/clove steaming on top, the fresh smell of sheets on the line, and my pine Christmas candle billowing around the house disguising the smell of boys, I am happy to say that this Caleb of ours who always throws the snake eyes, pulls a rabbit out of a hat and trips over four leaf clovers has done it again -- he is slowly - but most definitively pulling through. The infectious disease people are once again smiling and saying things like " he makes it look so easy"..."he has done it again".

I am guarded, like a snake just out of his skin, but I am confidently basking none the less and I want to say that if your prayers are working this well... couldn't you just ask for Brad Pitt to come waltzing into this room?

Another week and we will have a time line for the new shunt which needs to go in and then it will be a wait and see situation before Caleb is discharged. He has lost ground here - happens whenever someone is in bed for a time, so he will more than likely spend the next four weeks in re-hab at Spaulding -- this time we hope the Spaulding in Sandwich instead of Boston. For the time being I have been graceously offered the use of the apt I had before and can stay till the 27th..thank you. The boys, Tim, Jan and I will celebrate Christmas in room 34A and I am in hopes that for Christmas I will get one more kiss from Ari before he and Loren head back to California. (Ari is yet another one of my boys . now a grown , successful man.)
I have packed some Bailey's nips into my purse and will flood my hot chocolate tonight in celebration as I sit on the sill looking over the Charles. I have this game that I play where as each car passes over the salt and pepper bridge, I match it with something I am grateful for. Your names are glowing in those headlights. mumsie

More Candles for Caleb

May the light of the candle I lit for Caleb in Freiburg Cathedral
yesterday bring some warmth and hope to all!
Ken

“May you have warm words on a cold evening, a full moon on a dark night and a smooth road all the way to your door.”
-Irish Blessing

gluttons

I think we must be giving the impression that we are gluttonous for hospitals but I assure you that we are feeling frozen in time, stuck in a funky plaster of Paris. Yes, Caleb is back for another round and as discouraged as we could choose to be, we were indeed warned and we are indeed trying to focus only on the positive. Caleb has a staph infection in the CSF fluid once again, but not the same ugly bugger we fought before, but a gentler cousin- one we can tackle easily. Caleb is stronger on this round, was home long enough to gain some strength along with some weight and is no longer a welter, but instead is ready to be in the ring with the big boys. He is beckoned from illness by my feminine yearnings and I am asking for the powers to be to handle him like clay; to mold and fold life back into him and to shape a fine destiny. It would be untruthful to say that we are not frightened. The Neuro's warn us that with each infection, the cure becomes more and more laborous........
Coming back so quickly? - well it has been difficult with another Holiday facing us with yet another prospect of being here instead of home. Kai, Max, Jan have rallied and Aunt Carol arrived with Christmas decorations. They are strong when I can not. I have a slow numbing feeling and I am as removed as the compact staring back at my face. It is the same old, sorrowful moon in the night sky who keeps me company and I shiver through the darkness along with him waiting for the warmth in a ray of light while Caleb remains angelic. mumsie

Girlfriend Update--Start Praying again...

I am so sorry to report this, but we have had a set-back. This past Wednesday, Caleb had to be brought to Cape Cod Hospital, because he was having severe stomach pain at the site of the incision in his stomach. When he had the shunt put in, the valve went from his brain to his stomach, where the extra spinal fluid would drain into, and this is where caleb was having pain. Sharyn brought Caleb to the hospital and he had a fever and his white blood cell count was high, which means his body is fighting an infection. They withdrew some spinal fluid from Caleb and they discovered that he has bacterial meningitis again.
He was then brought to Mass General Hospital, so they could figure out where the infection started. They then discovered that the infection started somewhere within the shunt, and the infection traveled to his brain. This morning, Caleb's shunt was removed. The Infectious Disease doctors are looking at the cultures of the bacterial that were found in Caleb'ss CSF ( Central Spinal Fluid), and when they figure out the specific strain that he does have, they will then know what specific medication to give him. Last time he had bacterial meningitis, the medication took 3 weeks to go through its cycle of healing, so we think that Caleb will be in the hospital for a little while again to heal from this.
I will give updates about Caleb's condition when I hear new information. Right now, he just got out of his surgery to remove his shunt and he is recovering with his mother by his side. Mass General Hospital has become a second home to Caleb and his family, and we are on the floor that we have visited with Caleb many times before. The doctors and nurses there are amazing and so caring.
The main reason that I am writing this post, is because we need everyone to start praying again. Before, as you all know, the prayers and positive thoughts worked. Right before Caleb was starting to have stomach pain, he was going really well. There are many different types of bacterial meningitis and we are just hoping that he does now have the same strain as he did before. Lets all pray that he has a less dangerous strain and pray our hardest that Caleb will get through this and fight his hardest like he always has. I love you all.
-love jennie

Just how far we have come

Hello out there in blog land- I have missed hearing from all of you, but find it difficult to sit down at the computer as often as before with soooo much to do. Caleb is progressing - sometimes it feels like a snail pace, but he is going forward and I have to remember that it was the turtle not the hare that one that famous race. Leb is now ambulatory so we are finding it condusive to doing his therapy as an outpatient rather than an in home where we could not convince a speech therapist to travel this distance. Is Wellfleet in another country or something? He likes his work at RICH and does it willingly knowing that this is key. He is now making little jokes when they occur to him and we are delighted at this as this is a reminder of Caleb's former self - always so full of laughter and always with full intensions of making us crack up. We are quite simply blessed to have him home and blessed to be able to feast our eyes on him at all given hours of the day. Kai has been traveling home every weekend which is a strain for him, but he insists on it and Max has been my right hand man, always eager to help out with his big bro when possible. Max is generally in charge of the day's walk with Caleb and Spud and I feel this bonding is perfect for the three boys even tho Caleb was caught eating the dog's treat during the last trip and Spud was pissed. Caleb's appetite is enormous .

As for me- well I can only say that out of this tragedy - a tremendous treasure has been placed in front of us. We are stronger now than ever and we are each seeking out the gift that Caleb has brought to us. This has touched each of us personally and has shown us that a slightly lower form of us has transended into a slightly higher one-- we are becoming a better self.

As always- blessings to you, mumsie

Girlfriend update!!

This picutre was taken today when Caleb and I took a walk to Dyer's Pond. Caleb's smile is getting bigger and bigger everyday and he is looking so handsome!!

Caleb and I trying to keep eachother warm!!!

Caleb and Max taking a walk at Indian Neck Beach. What a Cape Cod view in the background.

Caleb and I taking in the Cape Cod fresh air!!! And ya, it was alil cold that day.


The first thing I want to say, is that having Caleb home is so unbelievable. Today is the 6th month anniversary of Caleb's accident and I think that he is going so well considering what he has gone through. As Mumsie said, Caleb has a very strict schedule and he is now having his therapies in Orleans, which is an out-patient facility. Physically, Caleb is going great. He does almost everything by himself; including dressing, showering, making his bed and cooking. We let Caleb do these things on his own, but at times, we like to keep a watchful eye on him. His speech is getting better by the day, and he now speaks what he is thinking, instead of just answering questions that we ask him. His memory is something that he will start working on at his therapy, and we try to work on it at home as well. His short term memory is patchy, but I think that his long term memory is slowly coming back. We can now have little conversations with Caleb, and hearing his voice, is like hearing an angels voice. He is such a sweetheart and so thoughtful. He is thankful for everything that everyone does for him.
I get to see Caleb everyday now, and walking into his mother's house, and hearing him say, "Hi sweetie", puts the biggest smile on my face. This morning he made us french toast and eggs, we went on a walk and watched the Planet Earth DVD, which is the best DVD's ever, and Caleb really loves watching them.
I just wanted to give everyone a lil update and let everyone truely understand how well Caleb is doing. All your prayers and positive thoughts worked, and are still working each and everyday. I love you all and I am going to try to update weekly and post some new pictures with every post.
-love jennie

For Peg

You have been with us all along on this journey with Caleb so you need not think of it as Caleb's alone - this belongs to all of us. We wish you well and are sending thoughts of healing your way. Please let us know.
In so many ways, and in most ways it is good to be home. Now the work of the family begins - we are inching Caleb back to life with little pushes and prayers that he will heal well enough to live a fullfilling life, independent of us as much as can be possible. It is a frightning path. At some points we are convinced that he can get there, at others we are worried sick. What do we do with the memories that glare back at us and carve the lines around my eyes deeper and deeper? Night time is the hardest when I sit alone next to his bed. While sleeping he looks ever the same ole Caleb, then he wakes to say that he is in pain and I fall apart inside- that gut wrenching pain that cries out to the heavens- let this not be! I also worry that the boys will forever be watching over him and will not live their lives - they are so young and deserve so much goodness.
Here is where we are- Caleb has a rigid schedule with time for visitors on weekends. He starts outpatient therapy this week. He is strong physically but suffers from dilusions and headaches almost daily. He has short term memory loss, but smiles at familiar faces and has the demeanor of an angel.
We are adjusting the very best that we can. Kai and Max are right there with him and are strong. I am staying positive for the most part and will wear this journey with Caleb until we are as worn in and comfortable as the soles of my walking shoes....
A poem from Max - given to me on mother's day when he was in kindergarten...
She has long yellow hair.
She has a peach color face.
She puts make up on her eyes and lips.
She likes to drink coffee.
She likes to be outside. She helps plants grow.She plays with me alot.
I love everything about her. I hug and kiss her when she is sad. I love her alot. Max

I am in good hands don't you think?