Thursday, April 26, 2012

Frame of mind

The Illinois Marathon is less than 48 hrs away.  This year, Liv Life has done a fund raiser getting runners to send out letters trying to help raise funds for our cause.  I have to say, it's been a success with the few runners we have participating. 

Preparing for a marathon is not only a physical game, but a mental one as well.  This week is termed "taper" week.  It's been a week of rest, fueling up (that means carb loading), hydrating, and mentally preparing.  I feel like being a runner takes a lot of discipline, dedication and determination.  The 3 D's!  I know I'm physically prepared and I know by Saturday morning, I'll be mentally prepared as well.  I'm putting myself in an "I CAN" frame of mind.  It's the outlook and attitude of knowing that I'm going to make that first step, and no matter what my time is, I'm going to cross that finish line.  Yes, I have a goal, but I have to focus on moment to moment and why I'm out there in the first place.  In the beginning, running was my therapy.  It still is, but it's become so much more than that.  I'm out there representing something so important to me and I'm also proving that with the right frame of mind, anything is possible.

The right frame of mind applies to just about everything in life.  Jobs, kids, relationships, school.....anything.  Having a child with a terminal disorder really takes a certain frame of mind.  With the small changes that are happening with Livia, facebook, other blogs of SS parents, I'm constantly reminded of how unfair Sanfilippo Syndrome really is.  It's a heartbreaking disorder.  Worry, sadness, anger and maybe disappointment are all feelings any person, not matter the frame of mind, are going to experience.  But do you let it dictate and control your every day?  The year after diagnosis was such a whirlwind, and I really can't remember a lot from that year.  I know for sure, I couldn't have fathomed writing about this topic.  I was in a much different frame of mind.  Today, however, I know that Jake and I have decided to take the frame of mind that encompasses fun, love, happiness, kindness and the 3D's!  My prayer today is especially geared towards my fellow SS families, but really everyone.....because who doesn't have something going on in their life.  I pray that you choose to have a good attitude and outlook for your day and for your life.  I pray that the right frame of mind is within your reach and that you can recognize your potential.  Love your children, friends and family just a little more today.

Good luck to all the Illinois Marathon participants.  Especially to those who are trying to make a qualifying time!  May your fame of mind be "I CAN!" 

You have to learn how to think right before you can live right. We become what we think. (Proverbs 23:7) #joycemeyerministries

Thursday, April 5, 2012

Those sweet words

This is a blog that I've been avoiding for long enough, it's time to face the music......or lack there of. It saddens me to tell you that Livia's speech is pretty much gone. She has lost so many sweet words that I long so badly to hear. Occasionally, she will mutter a random word. I desperately try to pull words out. Sometimes I'm successful, most of the time I'm not. It hurts my heart so very much that she is struggling to communicate. I can still see that she processes what I'm saying and can still do most of what I ask. It's a hard reality to face that MPS is in my child and starting to take over. I want to stop this for her. The changes that occur with MPS children are gradual, so when things start to change we can adjust and modify life as needed. I guess this is a blessing. We are also seeing changes in her mobility. Her walking and running are a bit labored. Her limbs are "free spirits" and seem to have a mind of their own at times. She does a lot of toe walking, turning in her feet, walking on the sides of her feet, keeps her knees locked (not bending) when she's fatigued, hesitant with stairs, tires quickly. However, it's not stopping her. She still moves, plays and enjoys running. At our last geneticist appointment I expressed my concerns with her mobility. They suggested that she receive more PT than what she is getting at school. I took her this past Monday to a business here in Roscoe for a PT evaluation. The therapist was extremely patient, thorough and willing to work with Liv. This of course was a HUGE blessing and an ease to my mind. I never know how people are going to react to Livia. I think her loving and easy going self helps a lot. And she's really cute! :) Anyway, the therapist was very honest and told me that she had never dealt with Sanfilippo Syndrome. Not a big surprise. She complemented me on how educated I was about Livia and said that it would help her along the way. She was a little "baffled" with a few things with Livia. Her feet in particular. She recommends a qua therapy for her which makes me extremely happy. One of Livia's most favorite things to do in the world is to be in the water. This type of therapy is also "containing" which is very beneficial. So, we are sort of on a new path of maintenance with Livia. Her mobility is extremely important to me and I want to keep her comfortable. Which brings me to my next topic. Since she has been fatiguing quickly when we are out and about....which we are a lot, I've been toying with the idea of getting her a new stroller since Christmas. I started researching this, and it was pretty hard for me. You see, at this point, they are no longer called strollers....they are wheelchair's. Or, if they call them stroller's, they always include the word wheelchair along with it. Livia, in no means needs a wheelchair. Wheelchair's are for people who can't walk at all. Or at least that's how I use to think. During my research, I quickly discovered how pricey these new chairs run. WOW! I'm use to umbrella strollers that are under $30.00. I was now facing $1000's of dollars. It was very disheartening. I tried the insurance route, which I knew in the back of my mind was going to be exhausting. I've never had luck when I've tried that route. My next idea, let's see if there is a grant out there that I can apply for to help with the purchase of the stroller. I starting looking the third week in February. I came across Helping from Heaven . This foundation is located in Vernon Hills, Il......not far from us at all. Please take a moment to read about this amazing family, and Lexi......who is helping from heaven! Grants were due by March 1st, this was only days away. I decided to go for it. A couple weeks ago I got a lovely phone call from Kristy Kazian, Lexi's mother. She was so kind and wanted to inform me that our grant was chosen for the stroller. WOW! I can't even express what a relief and blessing this was to us. Keeping Livia comfortable and safe is so important to me. Now going out in public, staying active and involved is going to be a little easier with this new piece of equipment. We should get the stroller next week.

I tried to add this song to my blog, but it wasn't available. Please take a moment to listen to the words and cherish those sweet words that you are able to hear everyday from your kids, spouses, friends and family. Appreciate your abilities and try to focus on the blessings that occur every single day. Love and hugs~ Kelly