December 4, 2005
Please see my
post on Planet SMA, the home page. We lost Morgan
Saville today and I am just too empty to post about it
again. I loved that little girl so much...and my heart
is just breaking for her parents, Stacy and Bill.
Stacy has become a loving, caring friend...and I have grown
to love her and Morgan so much. This loss is almost
too surreal. Life without Morgan? It doesn't
usually get down...but today, I'm allowing myself to do
it...to feel anger and frustration...and pain. Morgan
wasn't sick. Not that it matters...but it was so
unexpected. She was just being a three year-old
playing with Polly Pockets once second...and gone the next.
It just doesn't make sense to me. I can't wrap my
brain around it...and honestly...right now, I don't want to.
I am blessed to have known and loved her...and will continue
to honor her and her memory as long as I am alive.
People NEED to know that she...and all of our precious
kids...LIVED and made a DIFFERENCE in people's lives.
I've got today, folks...
November 24, 2005
Happy Thanksgiving, everyone!
Yes, I'm going to do it...I am going to make a rather
lengthy (okay...a REALLY lengthy) post about today and what
it means to me. I know you're all shocked..."KIM is going to
make a lengthy post?! THAT never happens!" Sorry, guys...but
here it goes...(and NO SKIMMING!)
I've been up since 2am, thinking. Miss Skyler woke then...at
2...and wanted to play. That's fairly typical for her, and
usually, I am trying to get her back to sleep. Sometimes
BEGGING her to go back to sleep, because these middle of the
night play parties can go on for HOURS. But last night was
different. Last night when she woke, I was happy she
did...THANKFUL she did. We talked, we played, and it was
great. Truly great. And I think I know why (and so do you
Last night...not at 2am...but at around 4pm, I realized I
needed to run out and get a few things for today. Jeff has
been on his "bad" leg too much lately...so I wanted to spare
him another trip to the store. Of course, I needed to
shower. That hadn't been #1 on my priority list yesterday. I
took a look in the mirror...and was slightly horrified. I
color my hair (again...I know you're all shocked there...it
looks so natural! lol)...and my roots somehow had grown
out...about 3-4 inches out. Looking back at me in the mirror
was a woman looking as if she were trying to relive life in
the 1980s...bad dye job and all. There was nothing I could
do, of course, I had to shower and go out as is, hoping I
wouldn't see too many people I know. I never want people to
look at me with pity, as a frumpy housewife who just seems
as if she can't get it together. I don't CARE what people
think of me...but I don't want or need pity...especially
because I don't pity myself...
So, I showered and left...
It's really cold here, in MA. In fact, it's snowing today. A
pretty, powdery white snow. I love the first signs of
winter. I always have. So, as I stepped outside my front
door (tripping over the walking stick that is there to scare
off the coyotes when Skippy is let out), I was hit with a
blast of cold air. And it felt GOOD. Really refreshing. As I
was driving to the store, my mittenless hands actually
smarting from the cold sting of the steering wheel, I was
hit with another blast...literally. It was a realization.
About my 3-4 inch roots. As I started thinking, allowing the
realization to sink in, I began to smile...wide...almost
foolishly. I felt so stupid. I began to repeat the works
"thank you", out loud - over and over and over again. I was
thanking our Creator for my dang roots...the ones that had
inflicted such horror in me less than an hour before...
I realized that I was proud to have these roots. The meaning
behind WHY I have them is so incredibly significant. The day
I DON'T have roots, that my hair is perfectly coiffed and
colored...that might be the day that I don't have my
daughter here with me anymore. I have these roots, because I
don't have time to think about my hair, my
clothes...sometimes, yes, my hygiene. I have these roots
because I can't often leave my house...and can't have my
sister-in-law over to color my hair because of sickness,
appointments, etc. I have these roots because I am given the
precious gift of being allowed to live yet another day with
my child...a child who was given just months to a year (2
years at the most!) to live...yet she is still here 4 1/2
years later! My hair is currently a wild array of colors
because I am BLESSED...incredibly blessed to have an amazing
husband and kids...and a disabled daughter who works her
fanny off every day to LIVE and be HAPPY...
So...needless to say...I pretty much skipped through the
stores last night. I held doors for people, said "excuse me"
til I thought I could say it no more and I smiled at others
when they were snippy or rude to me. In the package store,
while I was buying wine for today, I'm sure they were
thinking, "I don't know if I want to sell this woman ANY
alcohol!! She doesn't need any more!" LOL I was literally
drunk on life...and looking very much the giddly, silly
woman that I was at the time...that I still am today. And
that I was at 2am this morning, thankful that my daughter
awoke, wanting to play...wanting to sing me songs...
Not everyone is so fortunate. There are people who live life
on a smooth terrain...not a bump to be seen or
felt...because I don't think those people know what it's
TRULY like to be thankful. I know *I* didn't know...until
Skyler came into our lives. I think those of us who have
been blessed with Angels...either still here or in
Heaven...wouldn't have traded a second in time with our kids
for something different. Of course, we don't wish SMA on any
child...but it came into our lives, in the form of
beautiful, intelligent, brave little babies...and we were
BLESSED to be given such gifts.
I won't speak for those of you who have lost children. But I
will thank you...for loving our children who are still here,
for sharing your babies with us, and for continuing to
spread awareness and love throughout our community even
though you have gone through the most devastating of losses.
We are BLESSED to have met your children - and to have you
here, with us, in this family. It is all of you who bring
home the fact - day after day - that I am so fortunate that
my child is still here. When a child passes, we all feel the
loss so greatly...because we know it COULD have been our
child. That realization is so da*n frightening. So, I THANK
YOU and your amazing kids for your inspiration and
So, I'm thinking...maybe the roots can grow a little longer.
6 inches might do :) It'll be a few more hours of LIFE not
wasted on something that really means so little...
THANK YOU...all of you...for being in our lives. I don't
know what I would have done without you...or your incredible
Happy Thanksgiving everyone...
Thursday, October 27, 2005
Gee, do you think I've taken
too long to update this journal?! I'm sorry.
Life has just been moving along...and sometimes it's tough
to catch up. By now, most of you reading this journal
know all the news that has been taking place during the past
2+ years since I last wrote in here. But for those of
you who don't know, I'll give a very brief synopsis.
Skyler is doing GREAT.
Thank GOD. Really, I thank Him EVERY day for allowing
us to share our life with Skyler and our other two children.
Sure, each birthday is a HUGE milestone for Sky...another
year living with this disease, another year our Miss Sky
proves that the doctors can't tell you when you are going to
die. But it's the day-to-day I am really thankful for.
Each morning she wakes with a smile. Each afternoon
she spends yelling out at books, the TV, her siblings...her
mom and dad. And each night she closes her Big Baby
Blues and drifts off into sleep. I am thankful for the
milestones...but more so for being allowed to be in her
incredible presence day-to day.
Last late Spring, Skyler
became ill. The illness led to a collapsed lung,
intubation...and eventually a tracheostomy. It also
led to a five week hospital stay, where it was Skyler who
made each day in the PICU bright and sunny, when it could
otherwise have been dark and gloomy. I was there with
her...all five weeks...and never went further than the
bathroom just past the PICU doors. I stayed by her
side every possible moment. I missed my other two
children desperately...but even they begged me to stay, to
care for their little sister while she was away. While
I stayed at BMC with Sky, Jeff stayed home and cared for
Luke and Casey, got the house ready for our newly trached
daughter, visited Skyler and me...and he also worked. He was
one busy guy. My parents also visited several
times a week...and kept me fed :) We considered
ourselves lucky, though. It was Sky's first hospital
stay since she was 10 months old...over two years...and we
were thankful we had been able to care for her ourselves, at
home, during her other illnesses! We were also VERY
thankful to be spending her third birthday with her...even
in the PICU. She had survived...and she was thriving.
What else could we ask for?!
This past year since
Skyler's tracheostomy has been a busy one. I began
homeschooling Lucas (and Skyler, too!) in January (which I
love!), Skyler started with a new Speech Therapist, Marie,
who she loves (so do we!). Alice has (thankfully)
stayed on as Skyler's Physical Therapist...and we are so
grateful for all she has done to keep Skyler pliable and
comfortable the past 4+ years! Jeff has also been
ultra busy with work, and with helping me out by doing
laundry, dishes and playing chauffer for Luke and Casey.
So much has gone on, and I'm sure you don't want to read it
all here :) I guess one of the biggest steps we took
this year was starting Planet SMA, the New England Chapter
of SMA Support, Inc. You can visit us at
see what we have been doing thus far! We decided that
we wanted to do something locally, to help kids and families
living with SMA. Even though I've been busy
designing, planning, etc. it has been SO worth it...and such
a rewarding experience. Laura has done so many amazing
things for families over the past years via SMA Support...it
just made sense that we would partner up on something like
this...and we're very honored that she has deemed us
honorable (and sane!) enough to open her first official
So, Life goes on...and
on...and on. And we just go with it...wherever it
might take us. We are SO THANKFUL and BLESSED to be
part of such an amazing community...to have such incredible
children...and family and friends. Life is Good.
It really is. It's a blessing we often take for
granted. Skyler has taught our family that we should
cherish each and every day...and that the important things
in life are those we find in the heart...and in the company
of those we love and respect. As my good friend,
Dorothy, said, "There's no place like home." And
though it might sound corny, it's incredibly true. You
don't need to look very far when searching for your heart's
happiness...it can be found right at home, within the
relationships you have with your family.
Take care all...and I'll
try not to wait so long before I update next :)
May 7, 2003
12:30A, I truly thought we might be on our way to the
hospital. We couldn't stabilize Skyler after a cough
session (she had been rattling so much in her throat and kept
breathing against BiPap, causing her alarms to go off)...and
then she plugged. Big Time. She went down by
10's...very fast. I had the cough machine right there,
so Jeff cranked up the O2 (which we use in emergencies) and I
just kept coughing...until I saw the breaths break thru her
chest and tons of stuff came flying out of her mouth.
Immediately, Sky's numbers began to rise and within seconds,
our precious little bingaling was SINGING on BiPap. It
was nothing short of amazing. I called Karen and Bill
(who were still awake at 1 AM!) for the PICU number for Boston
Medical Center (couldn't find it, though it should be within
grasp) - just in case we had to go. But after I hung up
with them, I turned and found that Skyler was still singing to
her favorit! e Barney tape (Mother Goose) - and every part of
her body that could move was moving! Arms waving,
shoulders, legs and head were wiggling. We kept telling
her she had to stop moving her feet, because we wanted to get
an accurate reading on her pulse ox...but she just laughed and
kept wiggling them anyway. I listened to her - and her
lungs were clear...and there was no rattling sound in the back
of her throat either! Her SATs weren't as wonderful as
they usually are (they were 94-98), but then they settled down
and stayed 97/98. She did sleep with lower SATs the rest
of the night (maybe because she was exhausted) and her alarms
went off a few times when she fought BiPap breaths...but when
she worked with the BiPap, her SATs stayed around 97.
And when she woke this morning, she was happy, happy,
happy - and clear - and got through 2 cough sessions with no
problems! Right now, she is SATting well, playing with
toys...and singing.! ..again! I'm not sure we're out of
the woods yet...but I am sooo ooo thankful that we had the
cough machine and BiPap...what we needed to try and get her
through this illness. Sky's been a little fighter...and
even as she was plugging, she was working so hard to cough
whatever it was out of her throat...and then she celebrated by
singing and dancing at her success. I could just cry...I
am so proud of her. Hopefully, we're at a turning point
in this illness, but even if we have a rough patch ahead of
us, I am still so incredibly thankful that our baby is with us
this morning...Hugs to all, Kim
March 28, 2003
I just want
to say that our thoughts and prayers are with MJ and little
Jimmy right now. MJ, we love you and are so glad
that everything went well!! AND...we are SO glad that
you are going HOME!! Lorraine...please know that we're
praying for you guys...hope you get to NJ real soon so that
Jimmy will be in the best of hands. You're lucky that
you've had Karen in your corner...she's such a great person!
I'm lucky to have her so close by...
and Casey are doing just fine. Casey started with a
cold, so we're on RED ALERT in this house! Thank
goodness Spring is HERE and we can all start going outside
more often! Good news, too...we will most likely be
getting a Wizard! Sky outgrew her Tiger 2000 so
fast and we need more room for her BiPap...so we're looking
into it. Hopefully, everything will run smoothly
(uh...what is smoothly?)! Oh...and please pray for good
weather on Sunday! It's Casey's big bash at L'il Folks
Farm (we've already had to reschedule it once) and we're
expecting cooler weather...and possibly SNOW!
Yikes...not again! I'm sure we'll all have fun
regardless of the weather :o)
great weekend everyone!
March 23, 2003
Well, Luke has
strep...a pretty bad case of it. We put Skyler on
antibiotics...preventatively for the strep...but I also took a look
at her ears this morning and the left one is looking pretty red, so
we decided to treat her with a full course. I'm having to up
the acidophilus, because her fingers have been a bit yeasty lately.
She hasn't had this problem since she was an infant - before we
started her on acidophilus. I think it's due to all the
antibiotics she's been on and the fact that she has been having
problems with sugar. Her heart rate has gone down considerably
since we cut back on her juices. It's back to where it was this
past fall. Whew. Thank you, Stephanie Price! I
just don't want her problem with the yeast to escalate. We
know how messy that can get (right, MJ?!)!!
I'm sure many of
you are watching the Oscars tonight. It used to be a MAJOR
tradition for me, but I've only seen one of the movies nominated
this year (About Schmidt) and I'm just not into it for some reason.
So, I think I'll just go to bed and pop in a video of the TV series
M*A*S*H (okay, I'm a BIG fan...and it's either that or Buffy the
Vampire Slayer or Little House on the Prairie...you can see that my
tastes vary!). I like mellow evenings.
Here's wishing you
thinking about you! Good luck on the 26th! You'll do
March 20, 2003
Well, this is my first
public journal entry and I'm not sure what I should be saying. I
guess I'll start with...Welcome to Skyler's Website. It has been
a long time in the making...I procrastinate many things in life and
this was one of them! Skyler has been doing really well lately
(I almost hate to write it for fear I might "jinx"
us!)...and tonight I was able to walk around the house with her on my
shoulder...one of our favorite past-times! She was so happy...I
couldn't put her down, because she kept saying "Up! Up!"
Tomorrow, we might be able to play "peek-a-boo" like
that...we walk around the house searching for Skyler...in windows,
mirrors, etc. She LOVES that game!
Luke and Casey have one
day left of school this week and then it's time for some real fun!
Luke has a bowling part this Sunday, and Casey and I are hopefully
going to share in the fun! Hopefully, Skyler will behave
for her daddy! She's been so used to having mommy
'round-the-clock since she got sick. Jeff has been amazing,
picking up extra household duties, as well as putting in more than
full work week! I don't think there is such a
thing as a 40 hour work week anymore! I'm very lucky to
I want to take this
time, too, to wish everyone peace. A lot is going on in our
world right now. It's so easy to become consumed in all the
negativity and fear. How can we not? I am just so thankful
for the freedoms we have and for the family and friends who have
supported us over the years! Our prayers are with all the
families whose loved ones are in the Middle East. We pray that
they will come home safely...soon. Our prayers are also with all
the kids battling illnesses right now. MJ...we love you!
Jarred...you hang in there! You are so strong and so very lucky
to have your mom and dad...and your sisters! Cole...we're so
glad you've been having some good days and we wish your family many
more of them in the days to come! To the rest of the sick
babies...feel better real soon!
Good night all...