tip toe through the tulips...

i first planted

tulips

at our home...

in south euclid

back in the fall

of nineteen eighty eight

they were beautiful

that first year

the next august

we delivered sarah

she arrived with an unexpected

extra chromosome

and all of a sudden

tulips

took on a new meaning

a few years earlier

a woman named

emily perl kingsley

had written a poem

about the shock

of learning your child has

down syndrome

she likened it to going
on a trip

to holland when you

thought you were

heading to italy

i didn't want to go to

italy or holland

so for a short while

i hated tulips

then something wonderful

happened

i feel madly and deeply

in love with sarah

and tulips too

but as life evolved

so did the deer

that were multiplying

faster than rabbits

in our first ring suburb

they ate all the tulips

every last one

thirty years after first

planting those bulbs

i started over

in a new home

nearer the country

i was hopeful

yet realistic

i could hardly contain

my enthusiasm

when i first

spotted sprouts

early in april

then the buds started to appear

followed by flowers

each morning

there seems to be more

and more

tonight

i took jackson out

with me

the sun was shinning

perfectly

and off in the distance

of the flower patch

you can see
sarah's angel

so appropriately

placed

with the tulips

in our new home
new beginnings
with a healthy dose
of gratitude

one happy mama...

it's been a while

since

i've shared...

 

 

...a post about

 my favorite

daughter

it's good

 i suppose

that i have

 just one

that way she

can always be

number one

there was a time

that i questioned

whether we

would ever

share a

love of sewing

not just

because

she would need

to discover the

same infatuation

with fabric

that i have 

 

rather because her

diagnosis

of down syndrome

lead me to believe

she would have

greater challenges

than some

including

 her manual dexterity

for years and years she

had some wonderful

therapists who worked

diligently with her

hour after hour

day after day

 her fingers now work

with the greatest

of precision

her seams are near perfect

her patience

extraordinare

 

today

not only does

she share my love

for quilting

she is also

learning

the fundamentals

of running

a business

it has taken a

very large village to

get us to this
stage in life

for which i am so

 very grateful

for everyone

who has had a place
on this journey

with us
thank you

 

market miracles...

there's nothing

quite like

the inspiration...

 

 

of quilt market

to get

the creative juices

flowing

yet beyond

the colors and fiber

the friendships

the camaraderie

of like minded souls

is the simple fact

that i am

blessed beyond measure

to be sharing the

experience

with my girl

my miracle

of all miracles

and that

is the greatest

inspiration

of my

lifetime

so

very

grateful

healing threads

for three years now

we have been

stitching for others...

 

 

in beautiful happy colors

our mission is

simple

to help others

feel better

to let others know

we care

it's a simple gesture

that allows our

sarah to create

then share her talents

this week

for the first time

in more than four years

she herself

has been in the hospital

double pneumonia

last night

 at the suggestion

of a customer

i brought her a pillowcase

and a quilt

this morning as the room

became chilly

following a power outage

due to a massive

ice storm

i witnessed first

hand

what a difference

it can make

as she slept so

peacefully

the first time

in more than a week

miracles in the clouds...

days like this

remind me

although i want...

 

to think i'm

in charge

i'm really not

 we indeed arrived in

 new orleans last night

but by four this morning

i knew sarah

was in trouble

 so we called for a taxi

 and headed back

to the airport

 for the first flight

to ohio

the taxi driver

no doubt

divinely sent

 midway through

somewhere over the midwest

it was apparent

her airway

was collapsing

 so i asked

 the flight attendant

for a small tank of oxygen

 instead

 i got multiple emt's
quickly responding
 to her plea
for help

 they were heading to a

first responders

 convention

in south bend

the one who stepped up first

a gentle giant of a man

sarah adored him

the admiration

quickly became mutual

then we landed

to see out our window

three firetrucks

 and two ambulances

 at the gate

as the doors

 of the plane flew open

chicago's finest

 dressed in blue

raced in

to scoop up my girl

 and in the process

we educated

 an entire plane
 full of strangers

who cheered, clapped

threw praises

and blessings our way

feeling very grateful

that we safely arrived home

and thankful for the

strength that

comes over me in times

like this

so sorry to have missed the

wedding

and the quilt shops

we had planned

to visit during our stay

we'll have to make

a return visit

one day soon

especially to thank

tommie walters

of baton rouge

our hero on flight 1792

wings of a friend...

it's been a rather

hard week

for many reasons...

 

 

it felt like i'd been

punched

 in the gut

more than once

life is hard

i get that

but add a child with

mental challenges

 to the mix

and it is often

 heartbreaking

not the disability itself

rather the adults

around us that should

know better

but elect to not think

or just not care

by friday i

was emotionally

about done

so i decided

we needed a break

a quiet night at the pool

before that would

happen though

i had to jump through

a few ridiculous

hoops

in the midst of the chaos

we stopped

at the construction site

where a house

 is being built

for sarah

for her grandparents

at first

i had to coax

her out of the car

but once we got

to the back of the lot

all of a sudden

her face illuminated

as she spotted

a beautiful butterfly

she perfectly announced

it was her friend

 kristen

her enthusiasm

at that moment

was contagious

to the builder

and to me

i have no doubt

kristen flew in

to bring comfort

to us all

for the rest of the day

was perfect

 in everyway

this side of the aquarium...

one of our

favorite easter

memories...

.

 

...is the year

our precious sarah

discovered

the easter bunny

travels in a big white limo

we've never had

the courage to tell her

that only happens

when he is visiting

sick kiddos

she was a patient that year

another respiratory crisis

followed by pnuemonia

i just happened to

be pushing her

in a wheelchair

down by the lobby when

the charming scene

unfolded

i've never forgotten

 all those times

we spent on the floor

of the cleveland clinic children's hospital

i was always so touched

by the various gifts

delivered by volunteers

that's why our delivery

of more than one hundred pillowcases

feels so extra special good

i know there are parents

who are hurting right now

because

 it is a terrible

feeling to watch

 your child suffer

in a hospital bed

those thoughts were confirmed

as we walked about yesterday

words do not need

 to be exchanged

just eye contact

is enough

followed by the slight smile

when they realize

our girl has done something

special for them

in loving memory of her

friend kristen kirton

i am so very grateful that

we have been given the

 privelege

to return to the peds floor

and be on this side

of the aquarium

our quilt healer...

this photo

is making

it's way...

.

 

...around the world

 on facebook
as part of the
"i am" campaign
by the idsc

as of this moment

it has been shared

 more than 290 times

it has over 2,300 likes

and more than

175 comments

in several languages

it's impact is far reaching

yet

the irony

of this photo
of that green dress
of that day
is this...
the last time it was posted
in cyberspace
it created a firestorm
of anger
of resentment
of a venomously hateful tirade
and it shut me down for
days, weeks even
and then
slowly
 i started
over
a new beginning
with wobbly legs
  yet just like a newborn foal
i started to stand up
for myself
for my family
for sarah
and slowly yet
very deliberately
i found new footing
on more solid ground
and soon
life took an amazing turn
one that was so
divinely lead
there were days it felt
greater than award winning fiction
i realized a path
had been created
for us
our purpose
 was taking shape
and i started to see the fruits
of our hard work
our belief in something
greater
a higher power
was confirmed
i am humbled
that our story
is making such a
difference for others
there is no irony that the
message is this
all life is precious
indeed it is

it's all coming together...

just a few

 weeks ago

i wrote about...

.

 

 my fifty third birthday

and mentioned that

twenty thirteen

was going to be the year

i was so looking forward to

for the first time in

my life

i feel like i am

beginning to see

how life all

comes together

how cleansing your heart

 makes room

for so much more

and that

 believing in myself

believing in others

believing in miracles

just believing

was allowing a

 beautiful synergy

and creating an atmosphere

for humbled greatness

the first of which

 is now in print

to read more

click here

sweet warrior princess...

it's been

a hard day

a sad day...

.

...an unexplainable day

the world has lost

another precious

sweet child

so much like our sarah

born with down syndrome

so many of the same

health concerns

tracheal stenosis

a fragile respiratory system

heart and lung defects

but

a fighter

a warrior

a survivor

until today

when infection set in

just too much for her little body

my heart breaks in two

thinking of her dear

mama

and her teenage sister

the rest of her family

broken

crushed

and empty

hug your children today

in loving memory

of aziza

thank you houston

fabric + fun + friendship...

that's what quilt market...

.

 

is really all about

and houston

 did not disappoint

on one single thing

for me personally

it is also

 a warm and friendly

environment

where i can take sarah

 i so appreciate that

we had such an

amazing time

we reconnected with

good friends

met new ones too

viewed lots of new fabric

hooked up with

a former neighbor

sarah rode a bull

even learned a few line dances

we ate some great meals...

 

then we spontaneously

extended our stay

a few extra days

because of hurricane sandy

we went to a bar

where sarah got carded

and then proceeded to order

a glass of milk

we smiled and laughed

a lot

we toured the city

with map, feet and transport chair

we ate lunch in a park

fed a few homeless gals

with the extra bags of food

 we purposely bought

we looked at some really

 old houses...

 

 

we met a lovely couple

 from boston

also stranded in texas

they took this picture

right before

 we discovered a tree

planted for jane ellen

we rode a train through

a tunnel full of sharks

we met a mom and her son

in the gift shop

he too had a transport chair

and a trach

and down syndrome

we chatted for a long time

sarah's story

 gave her such hope

then we saw the biggest snake

 ever

which freaked us out

big time

and i mean BIG time

body shaking

hysterical screaming

trembling limb freak out

then magically a hidden door
opened

and a handsome young man

came to our rescue

he spoke little english

but saw the fright

on my girl's face

and quickly took us out an

emergency exit

and that's when i recognized

the rescheduled flight

sarah demanding

to hit the aquarium

very late tuesday night

it was all designed

 to be a chapter

of this journey we are on

we help others

so we in turn can

trust another to help us

i am so very, very

 grateful

i am traveling down

this wonderfully, winding road

a miracle indeed...

just about this time

four years ago

life started to take...

.

 

a twist and a turn

sarah's health was failing

quickly

right before our eyes

i recently came across this pic

and posted it on facebook

 with the following caption...

 

Do you believe in miracles? I'm currently uploading photo cards from prior years. This pic just caught me by surprise. It was taken about three months after I left my job in 2009 to care for Sarah fulltime. Her doctor suggested it was time to write a dx of COPD and bring in hospice, as there was nothing more they could do for her. Looking at her tiny frail body, I can almost see why. I am so thankful I was given the courage and strength to not give up on her. Thankful too that my hubby was able to step up his business so we could continue to pay the bills. To-date, we have been hospital free now for 3 1/2 years-the longest stretch in Sarah's 23 years of life.

 

the seventy two likes

and many comments

took my breath away

it seems our girl

is an inspiration

to many

it's a good reminder to me

to follow the lead

of our creator

the path that is ours

has been masterfully

orchestrated

and i know now

more than ever

we are where

we are supposed to be

dreams do come true...

we just wrapped

up our sweet

treat extravaganza...

.

...at jellen's house of fabric

to celebrate our

second anniversary

i still pinch myself

almost daily

we are having so much fun

and

at the same time

making a difference

we had

cameras in the store again

this time for a book

being written to illustrate

all the things that

 persons with down syndrome

can accomplish

such as...

...sewing on a machine

it's simply amazing to me

to look at this picture

and visually see

just where we have come

all because i was born

with a love of fabric

so very grateful

for that

in kristen's memory...

this day

will always

be etched...

.

...in our mind

july 20th is the day

the kirton's lost their

beloved kristen

the day they held her

 in their arms

as she took her last breath

the day her siblings

had been dreading

yet they knew

was inevitable

so they selflessly

moved their wedding days

on a few days notice

to an earlier date

so kristen could attend

i thankfully have not yet

buried a child

although i know

the possibility is there

it often lurks

 in the dark hours of night

and when it does

i think of kristen

and how brightly

 her light still shines 

and how i know

in my heart

we would not be

where we are today

without kristen

i think of how much  good

has come from her

and what she was

able to teach us before

she had to say goodbye

my heart is heavy

as i write this

for polly and her family

left behind to grieve

with a void

 that never goes away

we are so very grateful

to have been given the

honor and privelege

of being introduced to

this wonderful family

not a coincidence i'm sure

but rather by design

please leave polly

some love tonight

here's looking at you...

who me

yes you

no really...

.

i knew the camera

was coming

to interview sarah

and then

i found myself

looking directly into the

big round lense

with a microphone on my lapel

ugh

i'm not one to stand

in front of the camera

i prefer to be on the other side

yet the story is so

important

i feel like i've prepared

 for a lifetime

to be able to share it

of course i did not know that

was the direction

 it was headed

as i sewed night and day
for several decades

it just fell into place

so very grateful it did
and so happy to share in the
friendships we've made
a huge thank you
 to anchor woman kristi capel
camera man darsi ayres
and the editing team at fox 8 cleveland
click here to watch the segment

a musical angel...

i've been asked

to write a

guest blog post...

.

 

...by sarah's music therapist

you can hop over and

 read it here.

the purple knickers...

twenty years ago today

that's how sarah and i

often start posts over...

.

on her blog

it's fun to see what

we were up to

twenty years ago today

at times i think

twenty years is so long ago

and then i look

 at the photos

and it seems like

just yesterday

tonight

as i looked at what

we were doing

i huge wave of emotion

comes over me

first off

it's the purple velveteen

the true color doesn't shine

 in the pics

tj's knickers were made

of a rich deep

luscious purple

the top of sarah's dress too

the matching plaid

 was heavy, gorgeous taffeta

brought in especially for me

by jay broida the owner

of cutting room fabrics

he knew about my obsession

 with purple

so on one of his

 new york city buying sprees

he had me in mind

and my little girl

he was so excited to show me

i couldn't bring myself

 to tell him

that sarah was not doing well

in fact

the doctors were

starting to loose hope

her lungs were

continually collapsing

filling with fluid

she was aspirating liquids

to cause pneumonia

that would not respond

 to medicine

still i sat in my sewing studio

in the wee hours

 of the morning

to stitch up this

matching ensemble

for brother and sister

today as i look at

these photos

i recognize there

was a greater journey

one of immense teaching

the brother

the one who stood beside her

who protected her

without question

is right beside her

nearly every single day

i truly could not be more proud

of the man he has become

my heart swells with pride

each time i see the two of them

i hear them

engaging in grown up

conversation

yet my heart allows them to go back

to the day they

were wearing

taffeta plaid and

 fancy purple knickers

shattered dreams

precious iris

sweet adorable girl

forever angel...

.

Iris Catherine Palma

7/7/10 ~ 11/20/11

...gone much too soon

for weeks i've followed

 your daily struggles

open heart surgery

followed by complications

 fluid filled

and collapsed lungs

infections

irregular pressures

pulmonary hypertension

plummenting oxygen saturations

then a complete code

each hour i relived the emotions

with stephanie and anne

as they were posted

you seemed to be following

 the same path as my sarah

day by day

hour by hour

i felt the constant heartbreak

followed by

intense elation

when one tiny flicker

of activity on a monitor

gave new hope

i wanted so to believe that your

outcome would be different

that your mommas

 would hold you once again

that they would see

 your precious smile

instead what they have right now

are shattered dreams

and broken hearts

i know there were several girlies

waiting to take your hand

kristen, carly and lois

 to name a few

a party in heaven

where that extra chromosome

is celebrated

in glory

 i am sure

a perfect plan

october is national

down syndrome

awareness month...

.

...they say that nearly

twenty three years ago

at the moment

of conception

a somewhat rare

anomaly occurred
yet it would be

several months

before i'd know
for i was

 blessed with a

a perfect pregnancy

a quick and easy birth

then early
the next morning

august tenth of eighty nine

the doctor shared the news

forty seven chromosomes

one extra for my girl

the shock

 it rocked me to the core

i didn't understand

why were we the ones

to travel down this road

today as we stand

 in our store
surrounded by bolts
of fabric you've selected

 in your favorite team's
 colors of scarlet and gray

there is nothing

 that could bring

more joy

 than to clearly understand

 the absolute perfection

 of the grand

 and miraculous plan

the gift of love...

there is nothing

greater

than the affection...

.

...of a child

their pure innocence

uninhibited censors

carefree boundaries

when you are a mother of a child

 with greater challenges than most

that gesture can be delayed

some may never receive

an outward display
or if you're lucky like me
those tender moments
like a hand wrapping
 around your arm
when you assist with a simple task
like threading the needle
last for a lifetime
just one of the many
extra special gifts
of parenting a beautiful girl
with down syndrome