Wednesday, October 15, 2014

Wordless Wednesday--October 15, 2014








Thursday, October 2, 2014

About yesterday...


     Since yesterday was World Cerebral Palsy Awareness Day I had to make a post, it couldn't be the usual "Wordless Wednesday" post.  So this one will be a "Throwback Thursday" combined with a "Wordless Wednesday"!  Enjoy!


Cousins--best friends.  October 2013

Kerstin on World CP Day October 1, 2014.








More to come...


Wednesday, October 1, 2014

Cerebral Palsy Awareness Day...not just a day!

     I hope you have on GREEN!  Today is World Cerebral Palsy Awareness Day!  What does that mean?   Awareness to those that don't fully understand Cerebral Palsy.  Awareness to let the world know that more and more people are both with Cerebral Palsy and countless others are diagnosed with it every day.  What do you know about Cerebral Palsy?  

     Don't worry, Cerebral Palsy is not contagious!  Cerebral is of or pertaining to the cerebrum of the brain.  Palsy or palsies are muscular conditions that are defined by tremors of the body parts.  There are three types of cerebral palsy:  spastic, which causes muscle stiffness and difficulty with movements;  athethoid, causes involuntary movements and ataxic causes problems with depth perception and balance.  So, there is no catching any of those. 

Cerebral Palsy info

      For so many families, mine included, Cerebral Palsy is not just a term, awareness day is not just like any another day, it's life.  We live and battle each day.  These battles include those stiff muscles, seizures, wheelchairs, countless doctors, therapists, specialists, medicines, hospital stays, surgeries and many sleepless nights.  I haven't met a parent of a child with special needs that don't understand what I am dealing with and they have faced some of the same battles or they are about to.  Connections are so important. 

     Along with the struggles and the battles, there are immeasurable joys that come along with raising a child with special needs.  I know that raising Kerstin has changed my life in ways I will never be able to fully explain.  I am more patient, having to speak up for her has bought out the advocate in my...that voice that will speak for those that cannot do it for themselves.  I will type/write too!!  I am not only Kerstin's mom, I'm her advocate too!  She has forced me to grow and become a better person. 

My reason!


     So, as the world is made aware of Cerebral Palsy, I encourage you to follow some of the links in this blog post.  Read up on Cerebral Palsy and gain a better understanding of our loved ones living with it each day! 









More to come...

Monday, September 29, 2014

Her Wheels...My Shoes...

     


   There's a saying that goes something like you don't know about a person's life until you've had the opportunity to walk a mile in their shoes.  Basically, until you have had to go through what the next person has gone through, you don't have a complete understanding of what they deal with each day.  This is especially true  when it comes to understanding what a family is dealing with when they are raising a child with special needs.  Oftentimes, when raising a child with a disability, things don't happen as easily or as quickly as they usually would.  Nor do they happen as others traditionally think that they should happen.

     I've seen post after post on blogs and articles where parents of children with disabilities wanting people to understand them.  Just because they have a child with special needs doesn't mean that they want a life where they don't have the constant worry about their child(ren).  This life, of raising a child with special needs does require dedication and a tough skin.  There is also a facade that shows extreme strength.  Underneath it all, we need someone to listen to us, to be there and just to understand.

     Her wheels...my shoes...you can't understand what we have to go through unless you've done it.  I can guarantee you that most families raising children with special needs don't want others to sympathize or feel sorry for them.  We truly want understanding, and a little compassion!  




     When we're a little behind for an appointment, school or other things, know that it is not intentional!  Think about our situation.  It is not one of those that I can say to Kerstin, go get your shoes, your clothes, or get dressed, eat your food, brush your teach...take your meds.  I have to do all of that for her!  Then, I have to do them for myself.  Let's also add in the factor of a sometimes spastic child. Dressing is little more difficult.  

     When the journey is understood, it means more than you even realize.  Take a stroll in her tracks and a walk in my shoes!  Tell us about your journey...



More to come...

Thursday, September 25, 2014

What's in an introduction?


   

  Hi, My name is Mattisa.  This is my daughter, Kerstin.  How much more do you just willingly give when you first meet a person or a group?  When you meet new people do you tell them your name, your medical diagnoses?  Not many of us do!  Then why do some feel the need to just volunteer information on their child with special needs?  "Hi, I'm "Sue", this is my son, "John", he has Cerebral Palsy, he can't walk, or talk, etc..."  Would you tell another person things about your "typical" or so called "normal" child, especially when it's personal and medical?

     I've sat in meetings and conferences and other gatherings when parents have introduced their children and they have pretty much told all in the matter of seconds.  I can't help but think and wonder, would the child want you to do that?  It's doubtful, especially if they are preteens or teens!  I can't help but think that the child(ren) would be like "Really, mom, you're giving all of my personal information out!"  

     What's in an introduction?  A greeting?  Your name?  Your age? Your medical history? These things are appropriate in the right settings.  Medical history, I feel should only be given when you're meeting new doctors with/for your child.  Think about your child, as the person first...would you really tell all at the first meet?  

     Yes, this blog is dedicated to Kerstin and our journey!  Yes, I've included medical things here about her and I've done so without giving too many intimate details.  Cerebral Palsy is an umbrella with many details underneath and so is Epilepsy, there are many types of seizures.  

Tuesday, September 23, 2014

Some People Just Don't Understand!

     Some people just don't understand!  Remember DJ Jazzy Jeff and The Fresh Prince's "Parent Just Don't Understand"?  In the song from 1988, Will (The Fresh Prince) talks about how parents are all the same, all across the land...they just don't understand their kids. He goes on and on about how his mom made, in his opinion bad choices about the style of clothes and many other things parents and their children did not agree on.  




     This post isn't about parents misunderstanding their children or vice versa.  Like the subject states, "Some People Just Don't Understand".  As we all are pretty much aware, the very arrogant Kanye West went on a rant at one of his recent concerts and basically demanded that everyone in the audience stand in his honor.  He apparently became offended when some patrons did NOT stand, not because they didn't want to but because they couldn't!  This fact had to be verified by his (Kanye's) handlers.  Shameful!  

     No national outrage of this man's ignorance.  This story didn't make it's rounds on the evening news.  However, parents of children with disabilities and adults living with disabilities were very much outraged!  I know I was and still am!  My daughter loves music and I know, if she could she would be dancing and singing to her favorite tunes!  The actions Kanye showed at his concert and the blatant arrogance he showed after the fact is often expressed by many, in more subtle ways.  So many people say things that shows that they have no full understanding of what it is like to live with a disability or to care for a person with one.  

     When you factor that in, it is, as a presenter said at a conference I recently attended, ignorance.  Ignorance is when there is a lack of knowledge.  We have all been ignorant to many things in life.  You have no knowledge of something until you learn about it.  So, why was Kanye still ignorant on the entire audience standing?  That was both ignorance and arrogance.  What do you call it when you're in church(es) and you hear things like "you're not blessed" or "if the Lord's done anything, you should stand..."?  I'm not sure, and I don't care what the world thinks the Lord has or hasn't done for me.  I will continue to sit with and beside my daughter and many others that cannot stand in the face of  those that just don't understand or just don't care!

     So, Kanye and preachers and church folk around the world, the little music lover in the picture below, isn't able to stand on her own right now, she is beyond blessed and loved.  Her mom (me) is her biggest fan and number one supporter...I sit with her and stand for her and I am a voice for her! 


"Momma's daughter :))