Sunday, April 22, 2012
count your Blessings
OK I admit I do not click everyones emails and status updated that talk about breast cancer or what is happening in politics. I get that. But what I do get is the fact that I try to communicate with most of my friends on here. all 1900+.... because almost everyone I added I have mentioned Noahs disease or the fact I am doing what I do for him. And I do not mean to sound rude or crass but seriously I see more feedback from the moms with schiz kids than any one else and sometimes I am shocked over it....
so a little shot out to the many people that deal with what I deal with on a daily basis for a few seconds I will be talking about what others seem to not care or want to understand!
what irrates me more about all of this is the people that post complaints everyday about their lives. I can assure you that you cannot find one single post that is complaining or crying about something. People spend more time thinking about themselves in life that they cannot see for one minute what the world would be like without themseves as the main attraction. well let me break down what my life would be like without knowing schizencephaly.....or what life was like without noah
I would be selfish, never for once thinking about the fact i could not go out with friends or even plan anything that did not involve noah and the fact everything has to revolve around his life
I would work a 9 to 5 and maybe go to college full time instead of making sure I can work from home and take online classes to make ends meet
Probably I would still be married and have two people helping instead of the fact I have to explain my situation right away because I have zero time for a drink or a night out without telling someone the fact I rarely do so and how precious my time is
I would never have seen a seizure let alone seen someone have one and freak the hell out!!!! 11 yrs ago I was teaching wakeboarding and singing in a band!! no clue what being a caregiver or a person that could be the link between life and death or being sober 24/7 was all about!
I could shop.like a normal human, not for one minute knowing what people go through with wheelchairs and shopping carts
I could not read stuff like this......because it didnt effect my life
I would not know senators and drs and therapists by first name. and would never have been interested in things like that to begin with
I would not get sad everytime another birthday went by because Noah will outlive me keeps a mom up all night...worst fear ever!
I would never go to church...not that I do now but at least I believe in something because I know That It has to be bigger than this
I would not cry everytime I saw a kid like noah pass away, I feel guilt and anger I do not and have not done what I need to to bring a stop to this
so everyday I will be posting something I am grateful for and noahs link. I will also be posting a fact abut schizencephaly that I did not have when he was born because There were only 4000 counted when he was born.!
my little man is lucky to be awake everyday. two years ago he died. for 30 seconds he died from a seizure that was 45 minutes long so I think of you want to be my friend and want to be some business connection You need to understand why I even joined facebook to begin with
Be grateful your kids can say I love you. many parents I talk to on a daily basis with kids like this may never even say it let alone know the meaning....think about that deeply for a few minutes. I am so happy I have the ability to say I love you and mean it. and noah has taught me to be careful about using the word without thinking. when he first said I love you it was the happiest day of my life on earth. But too many of us use it, abuse it and waste the meaning, wait till some kid that cannot walk, talk or have an abilty to ever ctch a ball says it. then and only then will you think about it the way I do
I am a little upset with my friends that never for one second think about the stress and bearing noah has in my life.
I have fought so hard for him, since day one at 5 months pregnant being told I should abort to losing my dad to suicide because he said it was too hard. I have made it and will spend my life making sure noah and schizencephaly are a part of everyone that knows me lives.
if you can for one second think how would your life be different if you had a child that you could not describe a sunset to. Cannot understand what it means to run, jump or sing, no clue, noah will never understand these things because he will never have a chance unless more people take an effort and help learn about it. and yes I am human and it pisses me off. over 1900 friends and hardly 600 like noahs page or even ask me about him. if there is one thing in life I have learned it is facing the unknown and understanding I am only here for a blink.
so here is my final comment about the subject. You never will know when breast cancer or Autism will touch you and God Bless you if it does, but do not think for a minute something like this will not either. because It can. I adopted Noah out because his father had me convinced I could not deal with this disability, and by far the most under researched and saddest and varying I have read about. I had to fight for 4 months to get noah back and I did get him back. because I knew Nothing in this lifetime would ever be worth the pain I felt never seeing him again
the day I saw him after 4 months was his first smile and the foster mom said to me " omg I did not think he could smile" that was the first time I knew what love was and when I let go of being selfish. every smile, hug and hurt is mine now
my schiz family I will keep on. but understand I am a mom that will never shut up or stop being what I need to be for this. I encourage all of you to comment and tell me all about each child . I know the stories but I want everyone to know because if you were anyone or anywhere like I was 11 yrs ago and still today it is meesed the hell up ..... we need more research and we need people to step up. Tonight BTW I did ask A pretty inportant person if he would help with the 501 for schiz and I still need a few parent. ones that can stay at home and devote time to schiz.....or ones that cannot stay at home but understand what 501 c's are about
we have a person willing to help with getting this disorder known now we need parent that want to help in battling it with me
everyone on my page that does not like noahs page is just a superficial friend at this time so pardon me if I refuse to like your status or do your events.