A MONDAY FULL OF DOCTORS

DANIEL GOES TO THE SYMPHONY

DANIEL GOES TO THE SYMPHONY

DECEMBER IS HERE

SHAKE YOUR BOOTY DANIEL

JULIE HAIR CUT

I HAVE A PROBLEM WITH MY DOGS

HOME AND THE START OF CHRISTMAS CHEER

SO HAPPY TO BE HOME

HAPPY BIRTHDAY DANIEL 20 YEARS OLDWMV

MAKING VEGAN BIRTHDAY CAKES

UNFUSSY ATTEMPTS

A DATE WITH MY DAUGHTER

WOODSTOVE CLEANING AND GETTING SICK

YOUR SMILING

MY NEW SPACE AND DANIEL NOT WELL

FINGERPRINT CHRISTMAS TREE

BANQUET FUN

BEAUTIFUL VOICES AND NATIONAL CHAMPIONS

COFFEE COFFEE COFFEE

TAKING DANIEL TO WHOLE FOODS

TAKING DANIEL TO MARCHING BAND

SPINAL FUSION CHECK UP DAY

TREES DOWN AND HALLOWEEN 2017

IM A WINNER MOM

GUTTER CLEANING SPLASH ATTACK

DANIELS BIRTHDAY IS COMING

DANIEL IS GETTING FAMOUS

WORKING DESPITE THE PAIN

DANIEL'S HOME!!!!

DOG MERMAID

TAG SALE, PUMPKINS AND BAND SHOWS

HE DID IT!!

SPECIAL DAY, OUT OF TOWN GUESTS

NEED TO FIND A UROLOGIST??

DANIEL HAS A SILLY NIGHT

CARING FOR FAMILY

TERRIBLE SPASTICITY

MY NEW CHIHUAHUA SKELETON

DECORATING FOR HALLOWEEN

WE BOUGHT A SUBURU

IT WAS A BUSY DAY

SILLY OPERA VOICES

HAIR CUT DAY

WHY I DIDN'T GO TO THE HOME SHOW

FUN DINNER OUT

DANGERS FROM THE TREES

PULMONOLOGIST VISIT

WHEN THE DOCTOR IS CLUELESS

POST WEDDING SICKNESS

It doesn't take much to trigger Daniel into illness.  Although we had such a beautiful day at my niece's wedding the day before, Daniel was exhausted and fatigued.  He had a fever and could't exert much energy without suddenly falling asleep again.



All day, on this Sunday, I kept going....working and working, cleaning, doing laundry, checking vital signs, changing diapers, documenting... and doing everything else that needs to be done.



I was exhausted too. 



Special needs Mother's always have to be one step ahead.....   its hard when you are tired.   There is no break.



Thanks for your support, if you actually watch these video's, and subscribe to our youtube channel, thank you. 



Love Julie

AMAZING

A WINDY DAY

  PLEASE HELP..  RAISING FUNDS FOR DANIELS NEEDS....  WE COULD SURE USE A MIRACLE

SHREDDING PUPPY

REALLY HARD WORK

LOOKING UP LIKE DANIEL DOES

DANIEL MEETS HILLARY CLINTON

VACUUM CLEANER FEARS

PRIMARY CARE FOR TESTS AND CHECK UP

PRIMARY CARE FOR TESTS AND CHECK UP

Medically Fragile and Non Verbal

Sometimes its a complete mystery.  Thank you for following my blog, and our videos...   My goal is to share awareness and tell my story, about my life as a Special Needs Mother.   So here it is.



Spread Love Friends.   We have to take care of eachother...

STAYING DETERMINED EVEN WHILE WORRIED, just "push into it"

MUSIC FROM THE BASEMENT

TAKING DANIEL ON A DRIVE

I FINALLY DID IT!

CHANGES IN SCHOOL DAY

SPONTANEOUS BEACH ADVENTURE

DANIEL INSTALLS WINDOW BLINDS! WITH LOTS OF HELP

TUBA POLISHING PARTY?

BONFIRE TIME

JUST BREATHE

Anxiety from not being able to handle everything financially and all of the pressures from every direction...and worry about Daniel's health, hits me like a hurricane sometimes, and I have to work extremely hard to get through it.   Sometimes, I can breathe through it, and meditate...     Its just SO much to manage mentally, all the time, every minute....   But I am trying.    And I always pray for miracles, and help.

POSTCARD FROM ANOTHER YOUTUBE FAMILY

The amazing people we make on our youtube journey are just one of the many suprising treasures of vlogging.

IN THE MIDST OF CHAOS FIND PEACE

Chaos surrounds us.  And by practicing mindfulness, we can block out the pressure of it all...  even if for brief moments.  Learning to love and have joy, no matter what, despite all the limits and restrictions and frustrations...  is my biggest conquest in life.  Should it have to be so difficult, when life has already given my son a deformed brain...   well.... that's just how it is.



And this will be my legacy to him.

FIRST DAY OF SCHOOL AND PRESENTS FOR DANIEL!!!

September 4, 2017



Its Labor Day today.  I'm just reflecting on the many things I have to do... and want to do...and wish I could do.   As a Mom of a disabled son, my life centers around Daniel.  There are so many things that I manage.  In addition to Daniel.  And sometimes, I totally get lost emotionally, and I feel very alone.



People don't tend to ever understand me fully.  But my life is spent, loving, caring, creating... and also planning, trying, searching, praying...    resources are never enough.  There is always a crisis, or a trauma happening.  Trying to modify the mortgage, keep the cars running, put food in the fridge, pay for the doctor visits, manage the home such as...  electric, oil, septic, appliances, cleaning the fireplaces, inspecting for any damage, taxes, yard work, gardening, .....   and the special needs van???  It is so expensive to maintain.  



Because of Daniel's 100% 24 hour care needs, I can't work a full time job.  My phone is always ringing with someone trying to tell me a bill is late and I owe them money.  I don't sleep well.  I live in pain.  I try to make money when I have a few minutes to focus.   And people say "do things for yourself"  Which is, quite honestly, a very sad statement, because when I have time for myself, I am scrambling to figure out how to find a few extra dollars to keep the internet on.  etc.



I believe in love.  I want to stress that my family means the world to me.  Yes, if we had an extra $20,000 a year, things would improve.  But we spiral backwards.  John works full time, and he feels its not enough.   But I do EVERYTHING...   for the home side of things, except for cutting the grass, and splitting wood.



So when you see a special needs Mom, like me, realize, there is so much more to what you are looking at.    The goal is to care for our beloved son, in our home.... but the resources to do that incredible.

I DO NOT GIVE UP

Dear Friends, Although I seldom write as much as I used to.  Please know that every day is full of so many care giving details that its hard summarize what life is like.  If I ever look back on all of this...  I will know that my energy was never wasted.



After all, its about love.  Every minute of it all.  

WE PAINTED THE OCEAN

HERE WE GO AGAIN BAND

KEEP DANIELS GTUBE BUTTON SAFE

ECLIPSE DAY 2017

HOLLY GETS CARSICK

KEEP THE LOVE BAR HIGH

ETSY SALES HAPPENED

IM A LITTLE BEHIND BUT I WILL GET THERE

MOMENTS ON A THURSDAY

BAND CAMP TIME

BEST BATHROOM EVER!

BUGS AND TALKING TOILETS

A LITTLE RESPITE TIME

SILKY PUPPY

VERY ABNORMAL SINUSES

TURNING 18 CHANGED EVERYTHING

BUTTERFLY SUNDAY

BUBBLE PUPPY

NEEDING A CHANGE OF SCENARY

A VERY BATTY MORNING

DANIELS SUNFLOWERS GREW

WENT TO THE POOL ALONE

BEAUTIFUL SUNDAY BEAUTIFUL DAUGHTER

WALKING IN CIRCLES SATURDAY VLOG

SPECIAL LUNCH DATE SURPRISE

SPECIAL LUNCH DATE SURPRISE