I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Thursday, September 28, 2017
Wednesday, September 27, 2017
Tuesday, September 26, 2017
Monday, September 25, 2017
Friday, September 22, 2017
Thursday, September 21, 2017
Wednesday, September 20, 2017
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...
Monday, September 18, 2017
Friday, September 15, 2017
Thursday, September 14, 2017
Tuesday, September 12, 2017
Sunday, September 10, 2017
Saturday, September 9, 2017
Thursday, September 7, 2017
Wednesday, September 6, 2017
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.
Monday, September 4, 2017
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.
Sunday, September 3, 2017
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.
After all, its about love. Every minute of it all.
Saturday, September 2, 2017
Friday, September 1, 2017
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