A Note from Kai's Mom: We are ok!

I don't want to make a habit of hijacking Kai's blog, with my personal "stuff", but at times I feel the need to make a reflection, vent or share a mother's pride. So it is today that I want to address something that I have recently been talking to people about; interestingly, most are strangers. Since I was sharing this information with perfect strangers I thought it was important to let our friends and family in on it. So, I'll have to start from the beginning...

The emotions we felt when Kai was born (see post from Nov 21 2005), were very conflicting. We were elated, scared, worried and hopeful all at the same time. When we started to get diagnoses and prognoses, we were devastated, terrified and angry- which pretty much overshadowed many of the positive things we felt. Everyone around us was worried about us and about our future- but no one could do anything to change what was happening (for the most part). We had such an outpouring of support from so many friends and family over those first few months; it was quite overwhelming.

Kai in the NICU at UCSF

As we started on our path of caring for Kai, we knew very little about raising a child, let alone one that came with seizures, medications and attachments (g-tube). Our plans for everything changed right then. I tried to make things as normal as possible, by taking him places and being hopeful about what might be possible for him- but inside I was hurting. As an infant, Kai looked like a typical child- sure, he cried a lot, slept HORRIBLY, ate through a tube surgically placed into his stomach, and had close to 100 seizures a day- but he was so beautiful!

As he grew it became more apparent that he was delayed, and now here we are today: Kai is in a wheelchair, he does not walk or talk, he wears diapers and he drools. I'm not gonna lie, on paper he looks pretty grim. But then there's that infectious SMILE!

So now, when I am with Kai out in the community we are met with a variety of responses. There are people who make great eye contact and smile, and may even say hello or engage us in conversation. There are people who act like they are not looking, keep their heads straight forward and try to sneak a peek as we walk past. There are others who blatantly stare- with looks of concern, fear, sadness, pity, disgust. It's these last people that really get me. Sometimes I want to scream at them, but of course I never do- they obviously don't understand the joy that is Kai- so I just keep smiling and walking. In one instance, I was walking through Target with Kai and a woman walking by said to her friend, "Oh, that's so sad."

What? He's not sad, look at him! (was what I was thinking). And it that moment I realized that I did not want people to look at Kai and think SAD.

The people who actually engage me in conversation, do so out of concern, curiosity and sympathy- which I do appreciate, and understand (I do the same with others who seem to be in tough situations). But what I tell them, and what I want everyone to know is:

WE ARE OK! 

Happy. Fine. Thriving!

Kai the Snake Eater!

Life with Kai is what it is. Sure, there are days when I feel hopeless, or sorry for myself, or cry or want to pull my hair out, or feel like I need a secretary to keep up with everything- but mostly I am so lucky to have Kai. He has taught me life's most valuable lessons and everyone who takes a moment to know him realizes that what's grim on paper can be truly inspiring in life. If I could take one ounce of his spirit, persistence and happiness- I would be a much better person. It took me a few years to get to get here emotionally, but we got over "sad" a long time ago.

So, don't worry about us, ok?

Be happy with us!

My Favorite Therapy

My old PT and Me at school

People who have CP usually have to do some type of therapy, some do A LOT and others not as much. I am one of those A LOT people. I do traditional therapies at school like physical therapy (PT), occupational therapy (OT), speech therapy, and vision therapy. Outside of school I get to do some other treatments/therapies as well, some people call them "alternative" because they are not "mainstream".

My Marcy!

One method that I have been doing since I was only 9 months old is the Anat Baniel Method. My mom is actually a trained practitioner- but she only works on me. I love my ABM practitioners and miss my Marcy- but will see her next weekend in NYC! We found a new practitioner close to Boston, so sometimes we go up there to work with Matty.






 Another method I do is the Masgutova Method. I have gone to two, 9 day camps that consisted of 5 hours of treatment each day. It was intense. At the camps, the practitioners taught my parents how to do the exercises to integrate my reflexes and my mom does them in the morning before school (on most days). Mom says we might go to another 4 day camp in Orlando, FL in January. 

Art Therapy at camp

Last treatment of the day at camp

I also go to the chiropractor every week and have even done acupuncture and acupressure!

BUT my most FAVORITE therapy of all, is therapeutic horseback riding. When I lived in California I rode a horse named Cinnamon- she was a nice, slow horse. Now I ride at the Cranberry Sunset Farm in Marstons Mills and my horse's name is Capricious. I love this farm because we get to ride on the trails and there are all sorts of games and sounds. On Windchime Way I get to ride under the chimes and they make noise as we hit them, then there is a path that has noddles (like the ones for pools) hanging across the path and we ride through them. There are also pipes that we roll balls through. My brother and sister like to come to the farm too. When I am riding they usually collect eggs from the chickens, or pet the cows Rosebud and Daisy, or walk tot he obstacle course in the woods. One of the best parts of riding here is that I get to sit with someone on the horse. Sometimes my mom rides with me, or Leslie my teacher, or Allison a volunteer. Peter and Bernardo also help make sure the horse knows what to do.

During this riding I am working on having better trunk control and being able to hold myself up. I also have a chance to have my legs spread wide apart (which is really good for my hips which need some work), and Capricious is a big horse!