Thursday, November 24, 2005

THANKSgiving-and 3 shots of the kids over time







I had a wonderful Thanksgiving. It was spent with people
that were important to me. For that I am thankful. I am so lucky.
The table was full. My heart is full. It doesn't get any better than
this. Poor Ali must be exhausted but she put out a great meal.
Brother Jimmy looks great. The three of us are still here and healthy.
How lucky is that. I know it won't always be so and because of
this I treasure these moments all the more. I try to absorb their
beings and save them within myself.
Jimmy is home. It's so good.

Sunday, October 02, 2005

Then and Now



The bottom picture was taken when Jimmy was coming up on the age of two. He liked to stand on chairs to turn light switches on and off. We lived in Acton, MA at the time. He was a very busy guy. The top picture is in Ptown. He's still a ball of fire.

Fooling around


Thursday, August 25, 2005

My Sun






















months gone by
now he's home
i rejoice
chatty as usual
phone ringing
always making plans
go, go, go
clothes strewn about
car is now very busy
where are my keys?
went to the mall with
my MOM
i love that word
MOM
watch the sox
golf, dinner
time is limited
until his departure
every moment cherished
i absorb his being
refuel myself
feel better, happy
happy he is happy
so full of plans
endless
asking my opinion
the best medicine
my sun

Tuesday, August 16, 2005

Nine and School

Sarah is NINE today. Nine!! And tomorrow she has her first day at school for orientation. Her first day in the school building. Wow. I am very happy for her. She is ready. It will only be an hour at a time for now. That's all she's up for. It only took nine years to get to this point and we are so fortunate to have teachers and a school system that are accomodating Sarah so well. It is the start of a new chapter for my girl. My big girl.
Today was her birthday and we took her to the Mall-her most favorite place. She had a great time both anticipating it and doing it. She had a new hairstyle with just a hairband to keep all that hair out of her face. She looked adorable. I bought her a new necklace and bracelet. Yesterday was her party-she liked opening her gifts and tolerated the chaos pretty well. She had pizza and cake.

I can't believe nine years have gone by. In one sense it seems that she was born just a few days ago and in another it seems like I have known her all my life. I do feel I have always known her. It started in sixth grade when a serious little blonde girl needed my help to learn to read-her name was Sarah-and that became my favorite name. There was a quiet dignity about that child I never forgot. During those early years whenever I was asked what I wanted to "be" when I grew up, my answer was always "a mother". I was born to be a mom. The time went by and I clearly had a medical interest. I read lots of books about kids with issues. My favorite was that book mentioned in an earlier post "Karen" about a child with Cerebral Palsy. I went into nursing and my mom said it was purely to care for other people's children until I could have my own. She was correct. I did have two wonderfully healthy strong intelligent boys. But I could not believe that I was destined to go through my life without a daughter. It just wasn't right. My mother remarked a few times times that I really should have been given a child with a disability as I was becomming more and more intrigued with the neighborhood kids that had various issues. My boys had no issues. I did lots of reading and was fascinated with what made them tick.
The day came, my daughter arrived. All 8 pounds, 8 ounces. A single mom, a surprise pregnancy at the ripe age of 37, and all MINE. My daughter. Wow. Sarah had made her appearance. Beautiful with not a hint of the challenges to come. When they did surface in the coming months and years I was ready. I could really care less. Sure, she had CP but so what. I already knew all about that. Sure it was a challenge to find out what made her tick, but so what. I already knew all about that. She's the best- bringing joy, laughter and sensitivity to my two sons. Rounding out our family in the most perfect of ways. And like the "Sarah" before her of my many years ago- there is a quiet dignity about this child that is not easily forgotten. In my experience, and I can only speak for myself, life is amazing, and there is nothing more fulfilling than being a mom. Of course I already knew that when I was little. I am lucky enough to be able to live my dream.

Tuesday, June 07, 2005

What is it about John?


John is a very interesting person. I say "person" because
that's exactly how he's always been--a very specific
person, never the mercurious baby or meandering toddler
or questioning child. He already knew it all when he got here.
John was an observer rather than a participator. He saw no need
for speech early on. If he needed a drink he just sat on the floor
in front of the refrigerator. He pointed only if necessary. Serious
Sam I would call him. He slept easily, ate well and never
required discipline. I did not need to raise my voice with
John-just a slight change in tone was enough. Easy, sensitive
and always listening--with one surprising personality development-
a hilarious sense of humor. John was funny, very funny.
John has grown up true to form. He is solid, dependable and
no-nonsense. He is blessed with common sense as well as
intelligence. In our extended family he is the voice of reason.
We all turn to John in times of uncertainty. Often heard in
our family-"What does John think?" John can sum up in one
sentence what for the rest of us takes a paragraph to convey,
if at all. He is accurate and to the point, cutting through all the
non-essentials. As Jimmy says, "How does
John DO that?"
Along with this comes an amazing sensitivity to Sarah. He
recognizes every nuance of her being. He knows every
thought she is having as well as I do (and that's saying
something-lol). He is completely in tune with every sound,
movement and expression she makes-knowing exactly
what she is feeling or wants to convey. He is her most
favorite person, her buddy. She thinks he is the best.
And I have to agree, he is.

A New Family Member


Crestview's St. Regis

A new puppy Regis
my sister bought
brown and white
ball of fluff
springer spaniel
every little boys dream
but really it is the mother's
a new baby
sniff sniff sniff
he waddles around
on bowlegged legs
big floppy white paws
scamper flop bite snuggle
auburn soulful eyes
can't i chew just a little bit-
on your shoelace?
no biting bubba
i call him bubba
a bearcub wubbie
prancing with a toy
ears up-play with me?
the puppy dance
then flop to the floor
big sigh, eyes close
rest time-but not for long
where's mommy

Tuesday, May 31, 2005

Sadness


I miss my son. It feels like he is entirely gone. Summer is here.
All his friends are home. He is not. I know he is doing great
things down there is D.C. Big drops of gloom are falling on
my summer season. He should be at the beach, he should be
surfing, he should be playing golf, he should be kissing his sister,
he should be taking my car keys on his way out the door, he
should be leaving his laundry all over the house and crumbs
all over the kitchen, he should be answering the never-ending
ringing of his phone, his computer should be on our kitchen
table, his friends should be hanging out here on our couches,
he should be sleeping in our familyroom when I come down-
stairs in the mornings, his wallet and baseball cap should have
taken up residence by the front door---------i should hear him
calling to me as he runs out the door "I'll give you a call" and
I should be able to say "OK honey, drive safe".

Boohoo.

Monday, May 09, 2005

Karen


When I was a little girl I had a favorite book. It was titled Karen. It was the most amazing true
story about an extraordinary mom and her daughter. It took place in the 1940s. Karen, the daughter,
was affected by Cerebral Palsy. Mom had to search far and wide for a diagnosis. In those days
these children were hidden from the community and did not attend school. Leg braces and
equipment were heavy, cumbersome and often non-existant. This mom was not daunted by the
challenge ahead of her--that of teaching and raising a child with CP. She was creative, assertive,
and hopeful--not only for her child but for all CP kids. Her journey with Karen was so inspiring
to me. Her can-do attitude was uplifting. She brought the world to Karen--other children, numerous
pets, schooling, younger siblings, family support. I must have read her story 100 times.

The day came when MY daughter was diagnosed with Cerebral Palsy. It was like an old friend had come to visit my house and I knew exactly how to entertain . I went up to my bedroom closet, dug out
that old childhood book, pages soft and worn, and reread that wonderful story. Karen's mom, Marie,
was my hero. To this day, eight years later, I still pick up that book and reread various passages.
If I had to pick out the one thing Marie said that is the most influential to me it would be that Karen was not
a child afflicted with CP, she was a child affected by CP. She was a child FIRST. I love that. It was
such revolutionary thinking in those days. People learned from Marie's example. Not only did Karen
and Marie teach other, they taught everyone around them. Wow.

Thursday, May 05, 2005


Jimmy playing ball after the injury-see story below. Can you see a small portion of the scar peeking out from under his cap in front of his ear? Posted by Hello

For the love of Baseball




Five years ago today Jimmy was badly hurt playing baseball. He was pitching for our highschool at an "away" game. He took a hard line drive to the side of his head off of a metal bat. Slowly he collapsed to the pitching mound while the ball rolled over to third base.. It took the coaches at the game a full half hour to decide to send him by ambulance to the hospital. Maybe because he never lost consciousness? I'll never really know...


I got the call at home as I was not at the game. Off I went to find the small hospital in the middle of nowhere where he was lying. On the way I got a call from his dad-he said they were going to send him home- "NO!" I say. "Please keep him there until i arrive." I find my oldest child in the ER-he's lying on a stretcher looking perfectly fine. No cuts, no bruises, nothing. But strangely he can't tell the time on the clock.... The ER doc comes over to his dad and I saying "The CAT scan room has opened up-why don't we do a scan just to check for the heck of it since you are still here." After the scan I am told there are 2 small spots that are showing on his brain and they should be watched, so they will transfer him into Boston Medical Center sometime tonite. Jimmy and I eventually head off for the transfer in the ambulance at a leisurely pace. It was dark and cold out. It's now about midnight."Fun, huh, Jim?" I say to him, but he only nods and is oddly quiet.
We arrive and they redo the scan as is their policy. "We don't accept other hospital's scans," they say. Thank God. At this point Jimmy is saying his eye hurts and his speech is now garbled and halting. I wait off to the side while they repeat the scan. A guy suddenly comes running down the hall with a wet film in his hand- yelling "HE"S GOT AN EPIDURAL, HE HAS TO GO TO THE OR NOW!!" I am suddenly aware that we are in a life-threatening situation. "Shhhh," a nurse says, "that's his mother".


They call in the brain surgeon. He quickly arrives. He examines Jimmy's CT scan in a nearby room, I see lit images of my child's brain on the walls. He comes out. In his hand is a little brown leather bag containing his tiny operating tools. He speaks very quietly to us.
"Your son needs to go into emergency surgery-an artery has burst in his brain". The neurosurgeon continues to say before he goes in to cut open my child's head-"I can't promise you anything....". His dad and I nod. What else can you do? I kissed my son for what I prayed was not the last time and told him all would be OK. And he was wheeled away. The longest 3 hours of my life.


Out he comes into intensive care- with a big bandaged head. Tubes everywhere percched on him like a big spider. But he's doing well I am told. What followed was a difficult few days for him. At one point a nurse was doing a very painful procedure to him and when it was over Jimmy murmured--"Thankyou". At that moment I was filled with such pride and admiration for the person my son was becoming. He humbles me. Handling himself with more grace and dignity than expected from a 15 year old, let alone from an adult in such a situation.
Eventually we can go home but with lots of restrictions. He can't ever play hockey again, can't play football, can't ride a bike, can't wrestle, can't go back to school this year, can't lift over 20 pounds, can't play baseball, can't, can't, can't, CAN'T........a long recuperation with tutors at home and multiple trips into Boston to see the neurosurgeon and neurologists.


Not only had an artery been severed at the point of impact from the baseball but also his brain had bounced against the back of his skull causing an injury to the back of his brain that would take at longer time to heal and require frequent MRIs to be sure it did not develop into a further problem.
Over time a few restrictions were lifted but not many. He struggled with this but remained upbeat. He was also trying to put on the 20 pounds he lost. Apparently with such a severe head injury, weight loss is common. He was also adjusting to a big 6 inch surgical scar on the side of his head. He was having a little trouble with word retrieval.
Months go by and at each visit to the doctors he would ask the most important question for him----Can I play baseball this coming spring? Can I? Can I? Can I??????? Finally, they say "yes--but with a full helmet on at all times". He is silent, silent, silent..... "OK, I'll do it", he declares.
April came along and practices began. Out to first base he trotted, comfortable, a natural and at ease. He was born to play first base. His helmet was on, but the kids on the opposing teams yell taunts, make fun. They are unrelenting. "Why are you wearing a helmet-hahahahaha!" Jimmy just played. He was doing what he loved. One day he said to me -"Mom, I don't know if I can take the mound again to pitch". My response was -"that's fine-no one would expect you to. Play first base-that's YOUR position, that's where you shine". And I meant it. He is so graceful out there.
"But mom, I want to pitch". I was fearful even with his helmet on and tried to dissuade him. "Stick to first base babe". But he was persistent.
"Mom, I have to try...". Part of me admires his courage but I was so afraid. "Well, OK", i say, afterall he has the helmet on....so the coach starts him out slowly-pitching to the younger kids in practice only. A couple of weeks went by and then I heard --"mom, I want to pitch in a game"--now I was starting to get a little itchy about this....but ok...the helmet is on....and it went well......until I heard a few weeks later -"mom, I am going to pitch without my helmet". "No! No! No! You can't, it's not safe", I explain, almost hysterical, "I can't watch you do that. The answer is no." But he pressed onward, " Yes, mom I have to"....for many reasons that he proceeded to explain to me in quite an adult manner and that I cannot for the life of me remember. But I do remember this: he said at the end -"Mom, if I get hit in the head again then it was just meant to be". I sat silent. He was right. He was so right.
It was time to let go and pray that I could cope with HIS destiny-whatever it was to be. I could not protect him any longer. The only one who could was God. And Jimmy had great faith. Others were critical and disagreed with my decision but this was between me, my son and our God. I loved my son so much that I had to let him live his life, whatever the risks. This was not about me.

There were no more incidents in the following years of baseball. He was courageous, aggressive, enthusiastic and talented. I cried the day he played his last baseball game, knowing I would never see him play again. The end of an era. My admiration for him is more than I could ever put into words.


One of the lessons I learned from this experience was that I had been so worried about my daughter's issues and survival that I took the boys' perfect health for granted. I assumed I'd have them forever. I was wrong. I almost lost my oldest son that day...not my daughter. Every day I am so thankful that each one of my children is thriving. I feel very fortunate.


Oh and one more important thing I want to say...after any impact to the head...never, ever assume all is well...get a CT scan. No one, not even doctors are qualified to "guess"...get the scan. If I had taken Jimmy home that evening as suggested by the first hospital, he would not have survived the night. Something told me there was more than just a 'bump on the head'. And that 'something' was right.

A brother

Somewhere out there
is a brother
a BIG brother
something i always wanted
when i was little
and never knew i had
i know now
but where is he
adopted at birth
a big blonde baby
to a couple with a doctor dad
my dad's a doctor too
was he told about a birth mom
i wonder
is he looking
our mom died but i am here
if he wants to find us
signing up at registries
hoping he is curious enough
to take a chance
you never know
but i am trying

Wednesday, May 04, 2005

Living twice

I live my life twice-every day! Once for me and once for Sarah-lol. I get up twice in the morning. I brush my teeth twice after breakfast, which I have eaten twice. I take a shower twice, wash my hair twice, brush my hair twice, put on socks twice, put on shoes twice, put on my glasses twice, put on my shirt and pants twice, put my jacket on twice, get in and out of the car twice and eat lunch twice. I put pjs on twice at the end of the day after eating supper twice and I go to bed twice. My double life.

They don't know


We're going to the mall
my girl is so excited
down the bumpy road
she looks out the window
at familiar landmarks
her hands clasped
big smile
in anticipation
chirp, chirp, chirp
we stop
mama's gonna come get you
woohoo
in we go
shiny lights, people walking
music, movement
what fun, fun, fun
legs straight out
in joy
glances from passersby
i meet their eyes
we're fine, we're fine
wanting to reassure them
my girl and I
so lucky i am
wheeling a jewel
they don't know
can't see beyond the wheelchair
the lightness in my step
happiness in our hearts
i feel sorry
it's our secret
i am privileged
what price glory


Tuesday, May 03, 2005


Talking with her hand Posted by Hello

Thursday, April 28, 2005

The left hip

What's up with Sarah's left leg? She still won't fully weight-bear on it. Does it hurt or just feel awkward?
It still turns out since the surgery over 2 years ago. I could work myself up into a tizzy thinking about it.
Maybe it's just the "CP" and its the best it can be. I'm not ready to give into that yet though. I've got
her up and standing and taking steps but I am afraid she will loose ground over time. I am fighting a
battle-my own private war-me against the leg....her future rides on this...always in a wheelchair or the
ability to stand and walk at times with assist. That is what I am fighting for-the chance for her to stand
and walk with help as an adult. I will not let this go until I have to.

Tuesday, April 26, 2005


Sarah tastes sand at one year old Posted by Hello

Television

OK, I am a TV addict. I love TV. I love looking forward to my favorite shows and then settling in to watch them. I love old movies-the black and whites. These days I watch without fail Nanny 911, Gilmore Girls, House, Everwood, Eight Simple Rules, The Amazing Race, Special Delivery, among others that I can't recall at the moment which is rather ironic. Oh, I can't forget Ellen if I am home at 11 am. Does that mean I have no life? It doesn't seem that way. In fact, it is very full as far as I can see and I wouldn't want it any fuller. So maybe it means that I just really like TV.

The New Side Rail


the old bed rail gone
too flimsy
new rail on her bed
what is this, she thinks
uneasy
two long days of silence
in her bed
no laugh, no chirp
no bunny play, no hand play.
silence, stillness.
waiting...
looking...
wondering...
a moment of bravery
roll over, touch it with her nose
nudge of her forehead
roll back and stare
tap with the toe, tap-tap-tap
gentle ping-ping
making friends
a lift of her head and she peers over
anyone there?
hi mama hi mama
blue eyes hover
hi sarah hi sarah
back down she goes
arm stretching for bunny
hi bunny hi bunny
nose to nose
and the giggles begin again
sweet angel girl

Monday, April 25, 2005

Circles

My life is made up of circles. The beginning of every one of my circles started earlier in my life. Now as time goes along each of the circles completes itself. Here is one little example: Six of my growing-up years were spent living in Virginia with my father working in Washington, D.C. I've always wanted to return to the old neighborhood, look at the houses and see my old school. Many years went by. When I was a new mom I flew down to D.C. to visit my father with my little boy. Dad drove us around Washington with me nursing the baby in the back seat and we took in the sights, but didn't get the chance to see my old home in Virginia. Flash forward to present day--My little boy is now in college in Washington and I flew down for the first time to see him last month. Well, it just so happened he borrowed a car from a friend and drove me around Washington to see the sites.
Twenty years ago it was my father driving me and now it is my son......A Circle....and guess where else we went? That's right, to visit the old neighborhood that I hadn't seen in over 30 years. My son driving me around my childhood. Another Circle.

The Beginning

So here I am, my own little spot on the web. I'm not quite sure what the theme will be but there certainly are plenty of thoughts rolling around in my head on a daily basis. Some are fleeting and some have set up camp for the long-term, humming quietly in the background as I go about my day. It will be interesting to put them on paper- exposed to the starkness of the written word. I may learn a few things about myself, but mostly I want to have fun.
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