Monday, January 26, 2009

GOD LIVES UNDER THE BED!!!


There is nothing I need to add to this. Just read and enjoy!


GOD LIVES UNDER THE BED

I envy Kevin. My brother, Kevin, thinks God lives under his bed. At least that's what I heard him say one night.


He was praying out loud in his dark bedroom, and I stopped to listen, 'Are you there, God?' he said. 'Where are you? Oh, I see. Under the bed...'


I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.


He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult.


He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.


I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?


Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed.


The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.


He does not seem dissatisfied.


He lopes out to the bus every morning at 7:05, eager for a day of simple work.


He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores.



And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. 'That one's goin' to Chi-car-go! ' Kevin shouts as he claps his hands.


His anticipation is so great he can hardly sleep on Friday nights.


And so goes his world of daily rituals and weekend field trips.


He doesn't know what it means to be discontent.


His life is simple.


He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.



His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it.


He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax.


He is not obsessed with his work or the work of others. His heart is pure.



He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.


Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.


Not confined by intellectual reasoning, when he comes to the Lord, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that is difficult for an 'educated' person to grasp. God seems like his closest companion.


In my moments of doubt and frustrations with my beliefs, I envy the security Kevin has in his simple faith.

It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.


It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances - they all become disabilities when I do not trust them to God's care.



Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.


And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed.


Kevin won't be surprised at all!

Sunday, January 25, 2009

Mommy Time


SOOOOOO this weekend went by fast. We had Piper's party, which was awesome. Got to see a lot of friends and new friends.
I never realized how much I need Mommy time. Just going to the movies with my girlfriend..or making plans to go for a stroll while the kids are in school.
I really need to work on this....my new friend just told me: "If I dont I will loose my identity." She's right. Some days I get up at 8am...and by the time I go to bed at 11pm...I realize I havent done anything for myself or sometimes even just sat down to eat.
That can't be good. So tonight I speedwalked on my treadmill for an hr.
Ey .....I just may be daring and get some wrist weights lol.
Good night everyone.

Tuesday, January 20, 2009

Inspirational!!!!!


SOOO I have this friend (Hi Ang.) I just met her last year, but she is growing very near and dear to me. She has made my day on several occassions..even during difficult times...just by sending a little bracelet for my girls..to make them laugh.


Anyways. She sent me a link today...to a youtube video. She said the father reminded her of me. I watched the video and cried like a baby.


I am so honored to know that there are people out there that think that I am doing this good of a job... it's very encouraging...inspirational and keeps me going. It was also the perfect follow up to yesterdays blog of "Grieving the child you thought you would have." This video will show you... I dont grieve who Lilly should be.... Lilly is who she should be!


SO thank you Ang...this ones for you.


Check out the link...(get the tissue out.) http://www.youtube.com/watch?v=flRvsO8m_KI


BTW...I enabled leaving comments on here for people who do not have an account with blogger.com....so please feel free to comment....also you can subscribe to my blog...


Monday, January 19, 2009

Grieve the Child You Thought You Would Have....


OK so I joined this group on Facebook for women whose children have a seizure disorder! This young woman was asking for advise. Her 3 yr old daughter has been having unspecified seizures. She was asking "why her, why her daughter and why won't the seizures stop."
One lady said to her: "I read a book once that said you almost have to grieve the child you thought you would have to be able to continue raising the one you do have."
I am sorry, BUT I almost fell out of my chair. I had to answer her. I could not let that woman give this girl advise like this. It was bothering me for about 30 min....than I wrote her back.
I told both of them: "How can you grieve the baby God gave you ... so you can raise the child you have???? Like Pastor Ned said: God loaned these children to us. They are who they are. They were meant to be this way." Lillian was given to me, because our Lord knows that I am the only person that can take care of her.
Is that something people want to hear "NO." Did I want to hear that my daughter has Aicardi Syndrome...NO....but am I going to grieve her, because she is not like my 4 year old daughter just so I can go on with my life? Absolutely NOT. I am going to LOVE her for who she is....even when it's one of them days...when I just want to yank my hair out (or somebody else's for that matter.)
How can one say that...or believe it..or even worse..give somebody else advise like that. It infuriates me...it makes me sad..it almost makes me want to cry.
Lilly is my child... always will be. She is who she is...and always will be. She will never be like her sister...she will be unique in her own little way.
She will always be "THE ONE, THE ONLY MAGNIFICENT LILLY!

Friday, January 16, 2009

HAPPY BIRTHDAY!!


We all went to the Long Beach Aquarium today....that was Papa and Grandmas present to Piper. Uncle Doug, Pam and of course Lilly Billy went as well. Piper had a great time. She touched all kinds of sea creatures..and saw starfish (to all you Spongebob lovers that's Patrick.) BUT...when she saw a tank full of "Nemos" the day was PERFECT. I believe she told everyone around us: "Look it's NEMOOOOO!" LMBO


After that we went to "George's...that's where Auntie Pam works. We had a great time. I believe we were in the restaurant for 3 hours. I ate and drank so much .. I was hurting (actually..still am.) Piper was happy. Auntie Pam decorated a table with balloons for Piper and got her a "Princess crown." The ENTIRE restaurant sang "Happy B-Day" to her. I dont think it get's much better than that! Besides the presents she got to open lol.


Other than that we all had a great day. We are going to Marky's (oh I am sorry Bat-boys) party tomorrow....Piper is gonna love that!!!!!!! She loves her Marky lol....and I got to catch up on work a bit since I played hookey today.


On this note I am ending this blog with Piper's favorite saying: What a lovely day it was.!


GOOD NIGHT FOLKS.

Thursday, January 15, 2009

Oh Lord!

SOOOOOO Ms Barbara is nooo more. I found out she locked Kala in the garage for 2 hours without food and water...and I dont have one of them nice garages. When it's cold out...it's cold in there. So that didnt make me very happy....and as I was walking out to run errands she said I really dont want her rubbing on me. So almost in tears...I locked Annie up and locked Kala outside with some water. I called my friend in tears and said please come get Kala. I met my mil and uncle after this for lunch and both agreed...Ms Barbara is history.

SO I called the agency and the regional center, who funds the agency. They all assured me they'd find somebody else. I also made sure to mention that next time. Please do not send me a nurse that smokes...I do not enjoy my child smelling like smoke and being coughed at.

Anyways...now that that's out. TBALL was absolutely hilarious. Marky and Piper had a blast. It sure is fun to watch a couple of 4 y r olds (4 TOMORROWWWWW) trying to figure out the game of tball. It was a hoot. This should be great fun every Wednesday night.

Piper got to take cupcakes to school today...which were a hit. I ran some errands, which took a load off. I been working since about 1pm, because we are going to the Long Beach Aquarium for Piper's B-day tomorrow. I hope I can get it all done...plus I have to pack everyone up!!!!

Lilly had a "so-so" day. She threw up her medication twice last night, which never happened before. So I tried to make up for what she threw up, while trying to not to over or underdose her for that matter. Than this morning she woke up with a fever and shortly after she had a seizure. The rest of the day seemed to have been much better. She slept and played quite a bit..but shes having a little temperature right now....so we'll see how it goes!!!!!

Back to work I go......

Tuesday, January 13, 2009

"American Idol"

SOOOOO American Idol started...as always I went in with high hopes.....BUT lotsa losers AGAIN. I like when it gets down to the show in the small studio or even Hollywood sometimes....when the guys/girls with the real voices come out. For all of you who watched it... what in the world was up with the gal in the bikini. Can you say DESPERATE!!?!?!?!?

Today was part running children around and working. Nothing eventful happened. I am actually quite tired.

Tomorrow Ms Barbara is coming again..and I am going to pick out some stuff for Piper's Bday party.....and Ms Piper starts her Tball tomorrow. A little birdie told me Marky is going to be there as well. That should be FUNNNNN!

BUTTTTT. I do have to vent for a minute. IHSS (In Home Support Services) the state funded agency that pays me for staying home with Lilly. NOOOOO sit back down they only give me 48hours a month..nothing earth shattering.. I am still fighting them (but that's a whole nother blog.)

Welll so I finally get my paycheck for the month (it's the 13th people) and without any explanation..they took out dental and dues!!!??!! DUES???? WTF for?????? And DENTAL???? I have dental..this is the military people. So now I have the pleasure to call my friends at IHSS again tomorrow..and find out why they are taking this madness out of my check.

It's always a pleasure to talk to ignorant people that totally picked the wrong career. I dont even think half the people working there know what it means to take care of a handicapped child. Nor could they bring up the compassion to even attempt being a caregiver for a handicapped child. I dont even want to go there, but do I think that they understand what the word "caregiver" means. Probably not.

On this note.... I will end it with ALWAYS SOMETHING!!!!!!