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
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24 comments:
Sharyn, On a day when I REALLY need some spirit lifting - you come through AGAIN! I was sitting here at my desk waiting to get outta here and figured I'd check out the blog......what a delight! Caleb's progress sounds GREAT. I've recently started YOGA myself and it is my new workout "addiction". I've been practicing "BIKRAM" which is where they heat the room to an un-Godly temp. Google it if you haven't heard of it. I've found it to be GREAT physically and ever GREATER for "my head". I've heard a TON of testimonials about ALL sorts of healing...probably how you got Caleb into it. I also read somewhere that people in physical therapy have been playing that NINTENDO WII game. The theory is that it works on hand/eye coordination and there is limited movement....just another thought and is a fun family kinda thing to do. Well - have a GREAT day and thank you again for filling my today's sad heart with sunshine!!!!!!!!!!! Becky
sharyn
thank you so much for your update. you all are a WONDERFUL team!
i love to hear that caleb is doing well at home, where he should be!
louis armstrong.... what a great reference.
thank you for making me smile on this dreary afternoon.
i think of you all EVERYDAY and keep you in my prayers.
be well
amy in ct
Sharyn-the progress sounds wonderful. Probably the people who do not see Caleb so often will notice it even more than you, Max and the regulars do. We can always count on you for the "ups", there have been many "downs" in this epic saga, but I think it is safe to say there have been more ups. Checking this blog regularly has really helped me appreciate the little things in life. If Sacha or Sophia asks me to read them a book as I am runnning out the door, I will do it, it takes 10 minutes... but it means so much more. In the past, I would not have done that as often. Last night, my father fell to the floor when he was trying to get up (having his right side paralyzed from the stroke)out of his chair, my mother did not have the sterngth to lift him up herself, she had to call me and ask me to come over. My father sat there for 20 minutes on the floor and boiled over with frustration. I arrived, lifted him from under his arms and he was up in a second. He wept in my arms, so frustrated from not being able to help himself (and not being able to talk, to express his "bloody" frustration). Between the young children and the ageing parents, I have many opportunities to put your words/advice/theory into practice. Your spirit, encouragement and sense of humour is the perfect recipe for Caleb's continued success. And coincidentally, I have just started doing yoga as well, and absolutely love it - which also has its Wellfleet influence via Dick Duck. Be well. Sending my positive vibrations. Love-Claus
thank you for making me smile.
it is a wonderful world...
because of beautiful people like you.
Hi Sharyn,
Puzzles are a great idea! That all the pieces are coming together is the best news of all!
Keep smiling Potter/Lindsay tribe!!
Kevin
Thank you very much for helping us. You are truly amazing!!!
Sharyn....A beautiful post. I read the blog every day and update my boss who has a summer home in Wellfleet. He and his family are surfers and he knows Shaye. We will be renting his house again this summer as we did last and maybe we will get to meet you and your family.
Peggy from Western MA
To Claus,
Your story about your Dad made me cry. I am holding him in my heart tonight. Stay strong, my prayers are with your family.
Great words again. The last one, the one that was after the eye.. ohhh the moments... sooo good! Right on. again passing on the deeper meaning of the hardest lessons while you are in them.. that is hard. I am so impressed and in ahhhh of your momrets of enlightenment. Pressing your soul against a wall and realising that it all just is. Thank you for being you. I am here in Miami getting ready for my trip to Costa, leaving tomorrow. Anxious and excited, wishing I had another moment with caleb. I love you!
Sharyn, i am so glad you're still blogging. I think about you and caleb everyday. All is well . Love you . Xo
Ahhhhh - "What a Wonderful World"!
I've had that sitting here on my computer all week, just waiting to send it to you.
"I see trees of green,
red roses, too.
I see them bloom for me and you,
and I think to myself,
what a wonderful world.
I see skies of blue and
clouds of white,
The bright blessed day,
the dark sacred night,
And I think to myself
what a wonderful world."
Oh yeah!
So happy to read such an UPPER!
See you soon. Hugs and Love to all, God Bless. Natale
Sharyn and Potters Three,
I am thinking to myself and humming along to the Wonderful World with you, for you and for all that you are to me in my wonderful world. The pieces of the puzzle are forever put together
and then put back in the box and pieced together again.
I am sure you and Caleb can put the "jig" back into any jigsaw puzzle.
Skies of blue to you all.......
Kolleen
So much progress in spite of so many setbacks over the past months. Life itself is such a puzzle ...just when we think we've got it figured out, the pieces change configuration and we must rethink...but the picture comes together in the end, perhaps just not the one we expected.
It sounds as though things have settled down considerably for all of you....while visiting the past once in a while is a good thing, too much wistful remembering can cause one's steps forward to falter.....and forward motion is the key. Caleb, you are on your way and doing a fantastic job. Keep fighting back!
Thank you, Sharyn, for such a lovely, positive post. You are a wonder in this wonderful world.
As always, with hope,
peg from PA
The puzzle image, as Peg said, is perfect. Aren't we always taking apart and putting back together our lives?
I am so glad to hear of Caleb's progress. I will keep positive energy going for a good MRI.
Amy from western MA
The ups. The downs. We're all along for the ride, Sharyn, balancing on each of your words.
Caleb's progress is astounding. Each day it seems, a new miracle.
NY/Wellfleet Mom
Ms. Mumsie..
I love it! Leb is really making progress, and for those of us who are so far, it makes it so much lighter knowing he is doing these things. Sounds like he has a good, solid schedule full of things to bring him back, and keep going strong.
You guys should gather around the table and play UNO, it is such a fun game..
I love you all..xo Clance
Thanks so much for the update on his condition! Caleb is truly blessed to have a family like yours to help him through this challenge! There are a lot of families who wouldn't have been able to step up to the challenge this well! His progress is thanks to you, the family, and his friends in Fleet (and beyond). That amazing strength and positive vibe is what has pulled him through so fast.
Happy to hear the great progress and his growing strength
Lauren in CT
Cule news...buzzing now...Ali Manchester UK
Every summer we have a tradition of buying a big puzzle to put together as a family while vacationing on the cape. The anticipation grows towards the end of our stay to see who will finish with the last piece. For the last few years one of our 3 kids will hide a piece and mysteriously "find" it to complete the puzzle. (last year we had 3 "missing" pieces.) Thought the prankster in Caleb would enjoy this story.
Here's to finding all the missing pieces! So happy to hear Caleb is doing well!!
Hi to All- What a truly eloquent writer you are Sharyn. Thanks for keeping us up to date on Caleb's progress. We keep all of you in our thoughts & prayers daily. Keep it up!! xoxo Dana & Mike, Diamond Point, NY
You are all an inspiration every day to choose life , laughter and love. Thanks for the details. Yoga has been my lifeline, ( when I chose to grab it). I.m a big fan of the wii too. Keep it up.
Streetwise Neuro-punks... you have no idea how much I love that!
On balance, your news sounds fantastic! I'm glad Caleb is gaining strength and, it sounds like, making progress on all fronts.
The news in our family is that our Rebecca turned 16 last week and passed the test for her learner's permit on the first try, without accommodations. We've been out on the road, practicing. This has become my mission of the moment. In a small way, I have that us-against-the-world, determined-to-beat-the-odds feeling back - the feeling you know so well. She's doing very well, despite having minimal sensation/tactile feedback in her right leg, foot, and hand. I pass this along not to brag (well OK, maybe to brag a little) but to hold out yet another example of what can be possible, even when the view from ground zero is grim at best.
Please tell Caleb to keep walking, keep lifting those weights, keep talking, keep pressing onward. If he wants the plastic surgery, he should go for it. The future may not be limitless, but it may be brighter than you've ever imagined!
Much love,
Jerry G
You guys are awesome. =)
http://www.sun-sentinel.com/features/health/sfl-28wiitherapy,0,1639888.story
Sharyn, Check out the link above. it is an article that was in our local paper here about the Nintendo WI for Physical Therapy...you probably already heard about it, but I found it interesting. And in one of my previous blogs I mentioned that when I first heard about this I thought of your son. Have a Great day!! Becky
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