My Best friends and a fallen hero

 

FOR GAVIN 

 Growing up.  I  never had solid friendships   A  tall  black  feisty  stubbon hard  headed  disabled  girl was the last person kids wanted to befriend .  When  I was  15  I  started reading blogs, and that  summer  I    started  my own blog.   I have been blogging online ever since ,  I also have  found good friendships with  amazing  people  all connected to  one thing, disability. Over the years  I have met numerous  women , and men who have become  my friends. They have read my blog  and  commented and  I have  read   and commented on their blogs.


 One  such person  is  Kate Leong.    She  has had it hard.  Her  oldest son  has CP  Her youngest has had to overcome a speech  impairment and penut allergy.     Her oldest son, Gavin  David Lenog died tonight after having  heart  problems.   I have  watched her Facebook post since  Wednesday, the day he got sick,  hoping that  he would pull through.  Unfortunately he was pronounced brain dead.   He was  Five   and a half.   He is a  little boy who will never live to be six.


  My Aunt came to town this weekend  and   I  was  happy to see them.  On Friday Gavin took a turn for the  worse.  I read about it  as  i  had a meeting   with my  school DSPS program.  I felt like  I was in a fog. I  had hope that  Gavin  would pull through. I  told  my consular about it.  My speech therapist about it my parents  my aunt.  I have    had  the pic above to honor him.

  I feel pain  for a kid I  never "met"  because of the blog spere. I  may not have met  him in person because  he lived  across  the country   I   knew  he loved music . I was happy  when  he started to walk around  Christmass last year . And I was thrilled when  just last week  he used a switch to say I want water  at school.  Then  this   happend. I am soo  mad at God.  Kate has  already  had a still  born.  She had been trying for  more  kids   without fail and  now  her super hero is  gone.   I do not understand why god makes  life so hard for people. I am  soo mad. Please  keep   this  family in your prayers,

 For any of you longtime  readers  please know that you have been my greatest friends.   A  special  shout out  to  Ellen ,  Kate ,  Jan , Nicole,  Michelle,  Debby, Shannon , Tim, Rick and  those who  I forget  thank-you  for reading  and  inviting me into your homes  and   share  your kids with me.  You may be older then  me; however you are my best  friends .    Kate  you  are amazing  thanks for sharing Gavin's  story  with me and countless others.  I   hope you can find  peace on this difficult day.
 Kate  this  picture is  for you.

News at home

            Hay  guys  I am back,  As  I type this today , Sunday,  its the last day of  spring break  so  its  back into  school and stuff  and blogging.

               First I can  not help post   these  cute pics of  me and my Dog on World CP Day.   I  made these using a cool app  called    Pic
Stich

  Over break   my family got a new car.

 And I  have only have three classes now.   One classI was behind in and the other one  well  i do not  want to go into details here yet  but I am still upset.  So  now  I am going to try and apply to a college with some  Withdrawals  so  it will be interesting to see i  if i get in.   Now that I have some time I should be able to  put my application in  within the week.  Exciting stuff.   How have you  guys been? Do you like my   new blog  header  let me  know  in the comments 

Happy Easter

What would you say to a new parent in honor of national CP Day

 CP did not prevent me from being a cute baby

   So today is the  day to  go green to honor those  like me who live  with CP.   To celebrate  I  have asked  some people on Facebook.  what advice they would give to a new parent  who just received  a CP  diagnoses.   Here is what they  said. 

  First I asked in a CP group on facebook

 "That no matter what she needs to remember that regardless of the"Label" her child  is still her child the same as yesterday and nothing will change that , and though therapy etc is important, so is being a kid - remember to still have plan old FUN!"

  Fall 1999  swinging away

"Cp does not give you limits, live life to its fullest "

 




"Your child has cp, they are not cp. it is simply a part of who they are,its does no define them"





 "Expect your child to be able to do everything(albit on an extend timeline) until she clearly shows that she just isn't  physically capable  if doing it. If you want other to treat your child like they're any " normal kid then you a s the parent need to treat her that way"


 "For me.. I wish someone had told me to work on his communication. That milestones will be there just different ones. Its Ok to cry and it's ok to ask for help. treating them normal is so important.. [my son]is not able to walk.. but I always put him on the floor to play.. he would roll around.. sometimes whacking his head on the roll cause he didn't have the control at

  cousins  may 2012

 first.. but he didn't cry so I didn't make a fuss. because I treated him like any other kid.. he know is a pro at rolling.. he even log rolled, pushed him self from his room into the back yard to get to his puppy.. he's a normal kid.. with a few hiccups he's working out."

"Remember Dr's are practicing for a reason. I personally will not get a surgery without talking to people who have experienced it before. I was told, "If it sounds too good to be true, look into it, it might just be."


" You still have the same child you had before the diagnosis..."

I  then asket my mom  and she said 

"I would tell them to be thankful for their child and prepared for the amazement of the power of unconditional love. Your child will teach you many life lessons and demonstrate the strength and resolve of the human spirit. With  AZ, I learn every day just how amazing she is!"

 

I also asked other people with  CP  ( cause  we are the experts  right ) 

"it's not the end of the world, and your child is whole and perfect just the way they are:)" 

 piano concert spring 1998

"just to love the child as much as you would without the cp, and the biggest thing is even though it's important to listen to doctors, don't let the doctors tell you the future of the child. help the child reach it's full potential no matter what that may be."

  My thoughts 

  Aloha  Spring 2000

  Assume that    your child can understand.   Know that  raising your child  will have its ups and downs.  your kid will bring  you moments of laughter and moments of joy and  that they are not  broken  and  do not  need to  be fixed.   Also know that your not alone millons of other families are dealing with CP  as well.

WEAR GREEN

  On monday for National Cerebral Palsy Awareness day. 



  Have a good weekend  and I will see you  on  Green  Monday.   

Words from AZ in honor of world Down Syndrome day

 " People with  Disabilities are not  (great amazing  talented  inspiring  etc   )   because they have a disability no   they are  these things because of their strengths  talents and  personality"




 Happy  World  Down Syndrome  day

Everyone loves Max

 This blogger does not  need  much introduction she is big in the special needs blog  community .  Her name is   Ellen  and her son  name is Max.   Ellen writes at  Love that Max, which is easy to do because he has a great personality, and  she is blogging for me   today   Here is Ellen and  one of her Amazing  kids  She  also has a daughter  named Sabrina   who is also amazing,  Max.

 Do you know someone with Cerebral Palsy?   

Oh, yes: My son, Max, who's 10. He rocks.

Have they changed  you somehow?  

I think parenthood generally changes you as a person. But Max has been eye-opening and life-changing in many other ways. Before I had Max, I nee knew anyone with cerebral palsy, and wasn't close to anyone who had special needs. Mostly, I pitied them. Then I had Max. He had a stroke at birth and doctors told us the worst-case scenarios about him—that he may never walk or talk, that he could have severe cognitive impairment. I was pretty devastated. But what they didn't know was that Max had supersonic determination, and that luck was on our side, too. Max command-crawled at age 2 and walked at 3. Today, he is able to articulate words and use his iPad to communicate. He rides a bike. He has a great life. Max has shown me the amazing powers of human will. He has shown me that no matter what people say, you CAN achieve.

 Whats  one thing you wish  that everyone knew about them?     

I wish people understood that children with cerebral palsy should not be pitied. No matter what their physical impairments, in many ways they are like any other kid and deserve to be treated as such.

How  are they  awesome?  

Max is bright, funny, determined, curious, charming, perceptive and ultra-cute. Also: He has great hair.

  

Thanks Ellen  Got  stories     its not too late to submit them  for more information click here