Thursday, June 21, 2012

I Believe

I believe in God. I have faith that He can and will perform miracles. I know it seems like I can write about negative things, but that is the reality of our world.  I want people to understand the "special needs world."   I know my situation is only temporary. When our 5 weeks of pure chaos is over I know we will be okay and stronger. I have no doubt that with prayer and persistence we will be okay.
Please don't think I want a pity party. I only want you to see what special needs families go through. We don't usually get the tons of money that most people think we do. We are usually the first that the government takes from. The only thing that I ask from you is to pray for my family.

Monday, June 11, 2012

When the Stress Keeps Coming

The comments I hear often are "You are the strongest person I know"
"I admire you. You always have a smile on your face."
"I could never do what you do."

The truth is that I have plenty of reasons to smile. I have been blessed with an amazing son. My son loves me and is able to show me his emotions. I was told he would never know me. I was told that he would not understand anything around him, Well, as you can see from the picture above and below the doctors were wrong.

My sweet boy is watching Abby Cadabby on the Nook here.
When he is happy it brings me joy.

He loves to play like other kids

He likes to relax, play with his toys, and watch some Dora at the end of the day.

He loves to travel. We climbed a mountain here. If there is a path for the chair we're there.

He loves the water.

He makes me smile.

God has provided me with a miracle and I don't take this blessing for granted. Yes, I have many things to smile about.

However, being the Mom a child with special needs can also take a huge toll on you. When nobody is looking and my beautiful boy is asleep....
I look like this

I cry often. I wanted to spare you the full picture. I am not a cute cryer. Sometimes the stress and responsibility that I have can be overwhelming. There are not always services in place to help us live a somewhat normal life.
I can't send my child to after school care. They don't offer it for children with special needs in my area. I can't send him to daycare, again they won't provide services to a child that is so severely delayed. I can't work, because my son goes to a year round school and he is off for weeks at a time, several times a year. Not to mention the absence I would need to take due to sickness.  If I send Josh to school with a little cold it could turn into something much more severe to one of the other children in his class. Sometimes children with special needs have a much weaker immune system. A small cold for Josh maybe pneumonia and hospitalization for another child, so I have to protect the other children from his sniffles.
This is my life right now. I have to move because my landlords are selling my house. I need to find a new place to live, but I need money for that. My family members that have helped me financially will no longer be able to help. I moved my ex in, but with all of the stresses he has decided to leave again. You know the saying " When the tough gets rough, the tough gets going." Well, that's him. He could never handle stress.
My beautiful son needs to have major back surgery. One doctor wants to put in a full rod in the next few months, and the other doctor wants to put in a partial rod next month. On top of that Josh's foot has been causing him pain. The back surgery is no joke. It will be painful and there are a lot of things that could go wrong. I live in an area where I have no one, and I have no where to call home anymore.
We have never had a tremendous amount of emotional support, so I don't know what to do. I keep praying and trusting in God that I am making the right decisions, because right now my life is in complete chaos.
I am strong! I will always do my best, but sometimes a girl just needs a shoulder to cry on. Someone that isn't going to judge me and tell me what's best even though they have no idea what they are talking about. I get lots of advice, and I know people mean well, but they have no idea what is best for Josh and myself. I need someone that isn't going to make this about them, because it is not about them.
I have lots of people say they will be there, but when I need them they are no where to be found.
Please understand as a parent of a child with special needs I don't want pity. I have an amazing child why would I need to be pitied?  I don't want you to fix it. I have accepted Josh for who he is disability and all, and I really am okay with that.  I don't want your charity.I want to stand on my own two feet and figure out a way to do that.  I just want a true friend. Someone that will listen, not judge me, and love my son. Someone who can see Josh for Josh, and not allow his disability to fog their view of him.