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

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
http://www.youtube.com/watch?v=UvoXWdVXtjc

I can't deny........

That I'm:
sad.
worried.
frustrated.
overwhelmed.
confused.
scared.
mad.

I'm only human, right? I need to admit something. I try really hard to have an exterior that exudes strength and happiness. It's not always a true front! There are days that I have this candy coated shell, while inside I'm screaming and think this pit in my throat is going to constrict my ability to breath. I'd like to blame my ongoing mood on the lack of sunshine, but that's not true. I think I'm just sad. I feel alone and I'm tired of worrying.

Did anyone notice the above list is shaped like a diamond? Totally unintentional on my part, but maybe it was meant to be.

After I typed the first paragraph I literally wanted to stop and slap myself across the face. I HATE blogging like this. Yes, it's honest and real, but I don't like to complain. I thought about erasing and starting over because who doesn't have SOMETHING and who wants to read my sob story? But I didn't. I kept reading that list over and over again and then noticed that it looked like a diamond. So, I decided to google "diamond" and after reading what Wikipedia defined diamond as, my blog now had form. Literally. So, here goes.............(read HERE, just the first two paragraph's if you want to know where I'm coming from, or just read on!)

A diamond, something that is unbreakable. Obviously that does not define me. However, the unbreakable bond that I have with Liv is something pretty spectacular. We have something different between the two of us that is hard to explain. I understand her and know what she wants. This bond and mutual understanding is something that I don't think everyone gets to experience. I have a bond with Finley, a great one, but it's very different than Liv's. Diamond's are remarkably beautiful and have a luster that make them treasured by everyone. Have you ever heard anyone say "yuck, I never want a shiny diamond!" Probably not. There aren't many diamonds out there that are perfect. Some have small flaws. I would never describe my kids as "flawed." But we all are in some way. When you start dating someone, you notice their "flaws" that annoy you or maybe attract you. Livia has a pretty major flaw, a genetic deformity, to be exact. But so do I, Jake does, and so does Finley. You know what? There is a large percentage of people out there who have some sort of genetic mutation and don't even know it. But does that mean you aren't beautiful and unique? So often I find myself really upset when I see Livia around "typical" kids her own age. Kids and adults notice that there is something different about her. I put my defense up and am ready to pounce and defend her if needed. I think I need to change my attitude. I have a chance to teach kids and adults compassion to others. It's hard though, because you don't want to dive into details of why Livia won't talk back to you or why she likes to chew the arms off her Barbie. I need to just compassionately tell people that Livia is like a diamond......she's beautiful, unique, and different. Ok, so I probably wouldn't ever tell someone that my child is like a diamond, but you get my point!

Also can't deny:

That I'm:
ok.
lucky.
blessed.
encouraged.
faithful.
strong.
me.

This diamond was formed on purpose! My candy coated shell didn't just form overnight, and isn't always just a front. I'm allowed a few tears here and there and I think this post helped put perspective back in it's place.

Christmas Cookies and The Wiggles

My neighbor, Katie, asked if she could come over to bake cookies with the girls and I. Sounded like fun, and it's never bad to have an extra set of hands when a mess is about to be made. Finley was so excited and kept asking to start. Katie got a little hung up with something she had to do for her job, and was going to be late getting to our house. I decided to start the process to keep Finley happy! I thought she would really enjoy making the peanut butter cookies with the kiss in the middle. This would involve rolling the dough balls in sugar, counting out kisses to match the number of cookies, and putting a kiss in the center of a circle. All things that Finley know and understand how to do. This was the first year that I've been able to experience something like this with my child. The year that I was pregnant with Finley, Jake, Liv and I made sugar cookies. Livia was never really interested and didn't help out long. We always try to engage Livia in all the activities we do, but she usually has her own agenda. I couldn't help but get a little sad that Livia wasn't in the kitchen with Finley and I counting out kisses, laughing, and talking about Christmas "stuff." Liv would run in the kitchen and take me by the hand and show me what Wiggles video was playing on You Tube. You see, this is what makes Liv happy. She LOVES LOVES LOVES music, The Wiggles, and Elmo's world on You Tube. She laughs, dances, and sometimes sings a few words. Finley was having such a good time in the kitchen with me. We were enjoying what we were doing. As much as I wanted Liv to be in there with us, I stepped back and realized that I was bummed because of what I wanted. Livia was perfectly content and happy. There is a book that I have called "A different dream for my child." It's a great book, but just the title came to my mind. I can't bring myself down with MY wants with Livia. She is probably the happiest kid I know, and that should be enough! There are going to be moments like baking Christmas cookies with Finley, that make me wish Liv was typical. However, knowing that she is just as content watching the Wiggles and wanting to share that excitement with me makes me happy. I'm counting my blessings today for being able to experience two different worlds with my children. Livia; pure happiness, innocence, and love. Finley; normalcy, words, independence, and a vision for what's most important.

Above and Beyond

Occasionally, I find myself sending out mass emails to family and friends asking for some sort of "viral" help. Many of you have been involved in online voting to win funds for some sort of Sanfilippo research. I usually initiate this voting with mass emails encouraging friends and family to go online and vote. With all your help, we've won a majority of these contests. Thank you! I also send mass emails to a select few family and friends asking for another kind of help. At times, I'll get emails that offer free diaper samples or a chance to win a sleep safe bed. Basically, special needs give a ways that could come in very handy. Recently, I sent a mass email to that select few asking them to get free diaper samples for us. I then had some of those recipients send them out to people they knew that would be happy to help. A week or so ago I got an entire pack of diapers in the mail. I thought it was our free sample. I put it aside thinking we're going to be set with diapers for awhile. The other day, my mom asked me if I got a pack of diapers in the mail. I said yes, and shared in my joy of getting an entire pack for free (when initially I thought we may only get one or two....hence the help hoping to maybe get an entire pack with all the email participants.) She then informed me that my great aunt's friend wanted to do more than just a free sample and ordered us a pack. I'm so thankful for this gesture. I had no intentions of people ordering us diapers, or looking for a hand out. Just a free sample that may add up to a pack. When people go above and beyond, it humbles me and makes me want to pay it forward. We've seen a lot of generosity, and that going above and beyond since Livia's diagnosis. I'm learning that people want to do something or want to help. And if it's buying us a pack of diapers, which does help, then I feel like they are easing the pain of a terminal situation. What I mean by this is that people who want to be involved in our family, and know the details of Livia's diagnosis, know that right now there is nothing out there to help her. Our responsibility as her parents, is to give her the best life possible, right now. That means, keeping her healthy and keeping up with her appointments, providing her safety with more than you can imagine, keeping her happy, and loving her unconditionally. People want to help with this, and we can't do it on our own. It takes a community to raise a child (this is an entire new blog with that past statement!) Anyway, I'm so appreciative of the people that want to help our family and the foundation. Thank you for the diapers, the cards, the emails, the money, the words of encouragement, the prayers, and everything in between that I'm leaving out. Every single "above and beyond" touches my heart and helps my child! This is such a good example of what we want Liv Life to look like. I know this is my way of paying it forward.

Proverbs 11 24:25
One gives freely, yet grows all the richer; another withholds what he should give, and only suffers want. Whoever brings blessing will be enriched, and one who waters will himself be watered.

Luke 6:38 Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you."

Minnesota and a Roller-Coaster

The last week of October was spent at the University of Minnesota for the Natural History Study. My dad went with us, which was great. I enjoyed his company AND help, tremendously. Even though it was only our second time there, I felt like an expert at the routine of the trip. Getting to the airport, getting through security, what I needed for Liv, flying, getting our rental car, getting to the hotel, GPS, etc.etc.etc. I know all of this seems routine, but the first time we went, it was nerve-wracking. Anyway, it was a smoother process this time. We flew in on a Monday, and got there at a decent time. Enough time to venture out and have a little fun. I decided that we should go to the Mall of America. I'd never been before, so I thought what a perfect time to go. We arrived at the mall around lunch time, and all that morning Liv had been telling me "play." This meant that she was done sitting and wanted to get up and play! I was, too! So, we grabbed some lunch and sat around the edge of the food court and watched the roller-coaster's, rides, and fun going on around us. Livia was so excited, and secretly I was too! I did think that the amusement park would have been bigger, but it really is a nice size for little kids. Not too overwhelming. So we ate and then went for some fun. When we got our ride tokens, Liv bolted to the Merry-Go-Round. This has always been her favorite. I love how vocal and giggly she gets when she's enjoying herself. It really is the best sound! My dad watched us go from ride to ride. Since Livia has special needs, I got a special pass that allowed me to ride with her AND it didn't count against her tokens. Pretty nice. She was having so much fun that I decided we should step it up a notch and try a "real" ride. There was one coaster that didn't have flips and looked pretty safe. She JUST made the height requirement and I was secretly jumping up and down inside myself. We jumped in together and off it went. There was that typical incline before the ride really took off. I did have a temporary moment of "oh no, what did I get her into. How is she going to react to this?" It started going faster than I expected. After that first turn, I heard it.....squeals of laughter and enjoyment. We could see my dad standing below and I told Livia to look at Papa and wave, she said "PAAAPAA." It was perfect! We went on the ride twice.

The rest of the MN trip went pretty much just like the last one. We even stayed in the exact room as last time. We had great accommodations and were treated well. Dr. Whitley took a lot of time talking to us about potential therapies, time lines, and procedures. Developmental testing is the tiring day. At least Livia gets to play during this day. Lots of forms to fill out. YUCK! Some of the questions they ask are frustrating, but necessary. Then it's the day in the OR. Livia did a lot better this time because she didn't have to have her tonsils or adenoids messed with. She is such a trooper. Good traveler, and brave patient. During the wait while Livia is in the OR is when Dr. Shapiro comes in to talk to us about Liv's developmental testing and the forms I filled out. This is really the worst part. They tell us where she is functioning compared to her age. We know that she has digressed some, but to hear the things out loud that the Dr. has to say is always hard. It's moment's like this that I have to remind myself why we are here. So, to end this post, I'll share the pic of Liv and I on the roller-coaster.

Unexcused absence

I have neglected my blog, for really no reason. Life has been busy, but who's isn't? I've felt like I haven't balanced my "jobs" very well lately. I've also been very consumed with some situations that have occurred in my life. Without going into detail, some things have happened that have made me very sad, angry, and confused. When things happen with people you are closest to, it can be hard to separate and ignore that this is their life, their decisions, their consequences. Because, when you love and care about people that are making choices that you don't agree with....it's hard. Last night at life group, we watched a video from Jimmy Evan's marriage series "Marriage on The Rock." It was such a powerful message and made me think of so many aspects of my life, not just marriage. I walked away from last night with the situations that occurred recently weighing heavy on my mind. I took away from this video something so simple, but so powerful. Our mouths are God's mouths. The words that come from our lips are nuclear. Words have the power to encourage, but they also have the power to destroy. We should use our words as if they are coming straight from the Almighty. Proverbs 18:20–21 — “From the fruit of his mouth a man’s stomach is filled; with the harvest from his lips he is satisfied. The tongue has the power of life and death, and those who love it will eat its fruit.” (NIV)

From the time we are born, and when we are little children, the words we hear from our parents, family, and loved one's are words that we always believe to be true. Last night the analogy was used comparing words to seeds. If our words are like seeds, and we continually walk around planting seeds of negativity, then we will bear bad fruit. If we plant seeds of positivity, we bear good fruit. This analogy, again, is simple, but can be true in so many aspects of life. Raising our kids, our marital relationships, friendships, employees/co-workers, everything! Words can wage war, or they can bring peace. Also, once words are spoken, you can't take them back. Hopefully, if you're spitting bad seeds everywhere, you can recognize it and change. But only you can bring about this change. Negativity, untruths, bitterness, and anger are all very ugly and can affect everything in your life.

This blog was started because of Livia's diagnosis. Where we are today, in life, is really quite amazing to me. My kids, my spouse, family, friends, strangers (some of who are now friends), my church, and everything in between are all amazing blessings. I feel extremely encouraged to be able to say that I am a happy, healthy, lady walking around with a heavy heart. I can't ignore the sadness that comes along with Sanfilippo Syndrome, but it doesn't cause me to be bitter or plant those negative seeds. I've quickly learned that life is way too short not to be happy and make the most of every single day and every single relationship that is put before me. Our pastor said this, that will always be in my heart. In the end, when we go to heaven, what is the only thing that we can take with us? It's not our things, our stuff, our prize possessions, it's only our relationships that will be in heaven with us. Today, be an encourager and find what makes you happy. It will make everything else in your life shine.