Search This Blog

TREASURE yesterday DREAM of tomorrow LIVE for today

Our families journey with a life threatening neuro-muscular disease, from searching for a diagnosis to end of life challenges to the grief roller-coaster. PCH1A, a altercation of the VRK1 gene

Posts

Showing posts with the label NORD

Show all

No results found

Home

Powered by Blogger

Marci Scher

Visit profile

Labels

. 2 years1
#ItStartsWithWomen2
#jwrpmomentum1
0-16 years1
15 months1
16-25 years1
18 months1
20181
25-35 years1
35-55 years1

548 days1
55-70 years1
6419
730 days1
9111
A Bed For My Heart3
a way back to each other1
acceptance3
accomplishments1
act out1
activities1
Activities of daily life2
adaptive learning support1
adults1
advance directives1
advice1
advocate7
affection1
after1
age 0-11
age 1-21
age 12 and up1
age 2-41
age 4-91
age 9-121
aha moment1
air way clearance1
amazing1
Ambry genetics1
ambulance1
analogy1
anger4
antibiotics1
anxiety2
apology1
appreciate1
April 221
April 22nd3
April 271
Aretha Franklin1
Assateague Island1
assistance from others1
awareness3
awkwardness1
Baby ImaginArt1
Back to school1
bad2
balance1
balloon release1
band1
batya1
be prepared1
beach1
Beatles1
beauty1
Becca9
before1
before and after1
beginning1
behaviors1
Behcet's disease1
believe1
benefit4
bereaved parent6
bereavement3
best feelings1
best things to say1
bingo1
biological1
biomedical program2
Birth1
birth happens1
Birthday5
Blanket1
blue cross blue shield3
boardwalk1
Boat2
body1
bond1
boundaries1
brain1
brave dads1
bridging the gap1
broken parts1
brokenness1
Buddha1
Camp4
camp fire1
camp louise2
camp oest2
cancer1
caregiver2
Casey Cares Foundation2
celebrate1
cemerery1
cerebral palsy3
ceremony1
change5
changes1
chaos1
character3
checking in1
chest physical therapy1
child life1
childlife specialists1
children's books1
children's grief awareness day; six word stories1
choice3
Chorea1
chores1
chronic illness2
circle of life1
circumstances1
Class of 20211
cliche words1
clinical trials1
closure1
club1
Coco1
coincidence1
cold1
collapsed lung1
color war1
Columbus Ohio2
comedian1
communication1
compassion2
complex1
conflict1
confusion1
consideration1
contagious1
continue bonds2
control1
conversation1
coping3
cough assist4
counselor1
courage3
courageous parents network4
COVID2
COVID-191
crazy hat1
crusade1
cry1
cultural construct1
custom1
dad3
dad to dad1
dagadars1
dark places1
daughter1
dead-end street1
death9
decade1
decision making1
define a person2
degenerative1
denial1
depression1
deserve more1
developmental delays1
diagnosis5
different dream2
diffusion of responsibility1
dignity1
disability5
disabled1
disappear1
disappointment1
disats1
Disney1
Disney cruise1
diva1
doctor2
does not mean giving up1
Dr. Seuss1
dream1
dreams1
Dreidel1
dying1
eating well1
elul1
embrace1
emotional1
emotional health1
emotional intelligemce1
emotional reboot1
emotional strength1
emotions5
empower1
empty2
Empty Chair2
end of life1
equipment1
ER3
Eulogy4
eventually1
evermore1
exome test1
expectations1
experience1
eyes1
face your feelings1
Facebook4
falling1
families1
Family14
Father's Day2
fear4
fears1
feeding tube1
feelings4
field hockey2
firefighter1
flu season1
focused1
football1
for always1
forgive1
forgiveness2
four parts of yizkor1
fragile1
Francis Peabody1
Franklin High School1
friends5
Friendship circle1
frustration2
function1
funny1
future2
garden maze1
GBMC1
genetic5
genetic testing1
get help1
get over it1
Gilchrist1
Gilchrist (hospice) (Palliative care)5
Girl Scouts1
Give Kids the World3
Giving Sorrow Words1
global genes1
goals2
good2
good choices1
good days1
goodbye2
graduation3
grateful3
gratitude1
Grief57
grief support1
grieving1
group work1
grow more distant1
grow up1
guilty2
Hanukkah4
happiness5
hard work2
healing1
health1
heartbreaking2
heartstrings1
helicopter parenting1
Henri Landwirth1
hero2
high holy days1
high school1
history1
hobbies1
holidays2
home1
honor1
honor him1
hope8
horseback riding3
horses1
hospice misconceptions1
Hospital15
hugs1
hypotonia1
i am listening1
i forgive you1
i love you2
i'm proud of you1
i'm sorry1
i'm wrong1
Ian7
idiom1
illness2
imperfectly perfect2
in my life1
inclusion1
individual worth1
infants and toddlers1
infertility1
innovation1
inspiration2
inspiring1
intolerance1
Isaac5
isolation2
israel3
it's ok3
jealousy1
jeans1
Jewish Community Center (JCC)1
Jewish tradition2
join cake1
journey7
joy5
JScreen1
Judaism1
judgment1
July 4th4
JWRP2
Kathryn Swoboda1
keep your eye on the ball2
Kelley Lynn1
Kelly Farley1
Ken Doka1
kennedy Krieger2
keyboarding1
kids1
Kindergarten1
kindness3
Kintsugi1
lacrosse1
laughter5
legos1
lerner's permit1
Les Miserables1
lessons1
letting go1
life9
life after loss1
life is a journey1
life-threatening illness1
lifetime journey2
limitations1
listen1
live2
living life big1
living life with intention1
loss1
loss of a child5
loss of a mom2
lots a helping hands1
love19
love never dies1
love open wide1
Love Poem1
loved ones2
Luray Caverns1
Macy's Day Parade1
Make a Wish8
malignant1
mantra1
Marriage2
mars vs venus1
Mary Poppins2
mask1
matchbox cars1
May 61
meal prep1
Medical1
medically fragile child1
medicine6
memes3
memorial kaddish1
memorial service2
memorial walk1
memories5
memory2
Mensch on a Bench4
message1
microcephaly1
milestones1
misconceptions1
Mitzvah1
mitzvah day1
mom1
moment1
Mother3
Mother's Day8
motivated1
motorcycles3
mourning1
move forward1
move on2
move through2
move with1
movies2
moving on2
MRI1
Mt. Washington Pediatric Hospital1
muscle2
muscle clinic1
muscular dystrophy1
music1
MVC2
my wishes1
name1
national honors society1
National Hospice and Palliative Care Month1
national twins day1
nature1
nerve1
neurologist1
neuromuscular2
neuropathy1
Neurotransmitter disease4
never forgotten2
New Jersey1
New Year3
NICU3
NIH2
Non Typical Sibling1
non- treatable1
non-invasive ventilation5
non-judgment1
non-reversible1
NORD1
normal6
not alone1
November 301
obstacle1
Ocean City1
Oh the Places You'll Go1
ok3
old soul1
older1
on this day1
one child1
one is always missing1
opinions1
Option B6
orioles1
orthopedists1
OT1
out of place1
outside play time1
over 70 years1
overthinking1
overwhelming1
own ways1
pain4
pajamas1
palliative care1
parenting3
parenting evolves1
parents3
parents perspective1
part of you1
passage of time1
Passover2
past2
patients1
patientworthy1
PCH2
PCH1A6
peace2
pediatric geneticist1
pediatric motor disease research program1
pediatric patients1
peer counseling1
perceptive1
perspective1
petition2
photo1
photos1
physical health1
physical strength1
physical therapy (PT)2
pictures2
PICU5
pissed1
pity party1
pixar2
planning1
play keepers1
PLTW1
pneumonia1
Pontocerebellar Hypoplasia1
Pontocerebellar Hypoplasia Type 1A2
positive thoughts1
poweful1
power2
power of positivity1
powerlessness1
praise effectively1
prayer1
predictors1
present1
priceless5
Princess1
proactive1
problems1
programs1
progressive3
prolactin level2
psalm1
psychological1
PTSD1
pulmonologists1
Pushy parents1
qualify1
queen1
quotes2
rare disease11
rare disease day3
Ravens1
reading1
reality1
referral to professionals1
rejection1
relationship2
remember3
remember me1
rememberance1
research1
researcher1
resilience2
resolution1
respect3
respiratory1
respiratory support1
respiratory therapist (RT)1
routines1
RSV1
safeguard your marriage1
scare1
schedule1
School10
scoliosis1
Scooby Doo1
scouts6
screams1
Sea Glass1
secondary loss1
seize the day1
self-care2
September 14 Celebrate1
September 152
serving others1
seven habits of highly effective people1
shabbat1
shalva1
share1
shattered1
shemini atzeret1
shooting1
shower chair3
Sibling1
sidecar1
signs2
silence2
silver lining2
simchat torah1
simple pleasures1
sisterhood1
six word story1
Skyline Drive1
sleep1
sleep apnea1
sleep study2
Sleepless Night1
Slumber Party2
SMA3
smile2
smiles1
snake1
soccer1
social1
social media4
social norms1
society is broken1
solutions1
songs2
Sorority1
sorrow3
soul2
speaking the truth of your heart1
special3
special needs parenting3
Spiderman8
spinal tap3
spirit3
sports1
stamina1
start living1
statistics1
staying connected1
Stephen Covey1
steps2
stess1
still standing mag5
story1
strategies1
strength5
strong2
struggle1
stuffing sad emotions1
successful kids1
suction3
suffering1
superheroes1
support7
support groups1
surgery1
swallowing study1
swimming pool4
talk2
Talking to a Dead Loved One1
teacher1
Ted Talk1
TEDWomen1
teen grief1
Teen Vogue1
teenagers2
terminal3
terminal illness2
thank you2
Thankful2
Thanksgiving4
the ball and the box1
The Care of the Patient1
The Dash1
The Grief Tool Box1
The Guardian1
The Little Prince1
the mighty3
The Precious Baby Project1
the signs1
therapeutic methods1
Thirty-One bags2
this is your responsibility1
thoughts1
time2
tiny superheros1
TLSO1
today1
tolerant1
touch of grey1
toys r us1
tradeoffs1
trails1
trauma1
treasure1
treatments2
Tremors3
triggers4
trust2
truth1
twinless twins9
twins4
Typical sibling1
tzedakah1
uncomfortable1
unconditional love1
understand2
understanding3
undiagnosed2
unite1
Universal1
Up1
urinal1
urologists1
Utah3
vent1
Viktor Frankl1
Village2
voice1
VRK1
VRK18
vulnerable1
walker1
Walking1
Walt Disney World4
warriors3
weather1
what helps1
what is already there1
what's your grief23
Wheelchair3
white coat1
who has the right1
who's to blame1
widow2
Wii1
winter1
wisdom1
wise1
wiser1
wonder1
work1
working out1
working together1
worries1
worst days1
worst things to say1
xray3
Yahrzeit2
Yahrzerit1
yizkor1
yom kippur2
you didn't deserve to die1
you have what it takes to succeed1
younger self1
your child1
YouTube1
zip line1

Show more Show less