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.