Wednesday, October 29, 2014

Wordless Wednesday--10/29/2014




Monday, October 27, 2014

Scars of Strength

     As November approaches, I can't help but think of the year that was 2013!  This was a year filled with what seemed like surgery after surgery, hospital stay after hospital stay; three in one year.  No matter how hard it seemed to me and for us, I am aware of the families we came across that were dealing with a little more than we were.  However, Kerstin was dealing with a great deal.  At times, I felt like she was dealing with more than any little girl should have to deal with.

     I've said it before, Kerstin's will and strength gives me the strength to go forth each day.  There are times that I have had absolutely no idea where the strength has come from to continue doing the things I do for her each day.  I know that if my sweet pea can smile through the things she's endured in her 12 years, I can keep fighting!  

     "Scars of Strength", came to mind when giving Kerstin a massage after a bath one day.  I was looking at the scars on both her feet, so long and almost around the entire foot, looking as if it was sown back on, with pins/screws to boot.   The bilateral triple arthodesis, was done because her feet had started to turn in  at the ankles and had gotten to the point that she could no longer wear her AFO's and the bone was starting to cause callouses on her feet.  We were even told that if her ankles continued turning, she would not be able to wear shoes.   Now, she is able to wear her AFO's and shoes, comfortably. 
Day of surgery 02/28/2013







     Then, there's the g-tube, an everyday reminder that there is an unnatural hole in her stomach.  Yet, this "scar" is there because she was no longer able to eat the way she had been most of her life.  It was unhealthy not to mention unsafe.  She aspirated, silently, during a swallow study at Children's Hospital.  
Kerstin's new belly button...


     Kerstin's biggest "scar" is over 17 inches long and directly down the middle of her back.  She endured over 7 hours of surgery to have a spinal fusion.  The incision is a few inches from her neck down to her tailbone.  Underneath the scar, rods and more screws to correct a 50 degree curve that had started to cause problems with her lower right lung. 

One month after spinal fusion. 

Before and after spinal fusion

Continuing to heal...



     Kerstin even has scars from central and PICC lines that had to be placed during her spinal fusion.  Still visible are scars on her neck and her left bicep area. 

PICC line scar

Central line scar...and scopolamine patch

     So, Kerstin's "Scars of Strength" are just that, signs that she is a tough little girl.  She has more strength than many.  I've looked at her, watching her in hospital beds, at times with so many tubes, lines, and wraps covering her little body and have wondered; "How much of this can one child endure?"  "How does she manage to smile when in so much pain?"  Faith!  Strength!  No one in her life telling her to give up!  No one with negative vibes surrounding her!  
     Her scars, are reminders for me.  Don't give up fighting.  Be strong and have strength...



More to come...

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.