The things they don't teach you in school

I've been battling frustration lately, which makes me FRUSTRATED!

 This emotion really is an evil. 

I pondered over writing this blog, but then it just frustrated me constantly thinking about it so I decided to just let my fingers be the outlet.

I don't like to complain, I don't really even like to vent about being frustrated, but I'm only being real.  So hear goes, you've been warned.

Looking back on my formidable years, I'm quit disappointed that I wasn't more prepared for life.  I mean REAL LIFE.  School, as well as parents (sorry mom and dad if this comes across wrong I LOVE YOU!) are the root of who you become as an adult.  So often you hear people talk about rotten kids and how bad their parents must be.  I don't believe this is 100% true, but maybe 80%.  School and parents are a big part of our development.  DUH!  So I'm frustrated as to why I wasn't more prepared for this huge curve ball called Sanfilippo.  When I was picking my class schedule in HS, there wasn't an option for School of Hard Knocks 101 or Insurance appeals 200.  No one is taught how to deal with terminal illness' of their children or what to do when you need a sleep safe bed or where to buy bigger diapers or getting a safe room put in their homes because your child's safety is ALWAYS a worry.  (sorry Mrs. Rosen for the terrible run-on sentence!)  No one teaches you how to manage all these frustrations without feeling frustrated.

So it's left up to you......to me.....to figure it out and make the most of it.

My biggest heart ache right now is feeling like Livia is slipping away from me.  She's still so happy and well-behaved, but little things are starting to show.  She's wandering more, climbing more, she's chewing different, she seems to get over stimulated more often, she can't process this stimulation and is getting agitated.  I know my frustration is not coming from the busyness, it's coming from the fact that MPS is changing my little girl and I'm scared.  I feel like I do a really good job at hiding my heart ache.  I hide the fact that I'm scared and worried almost daily.  Even though those emotions exist, I have to hide them in order to function.  I'm not going to complain and look like I can't or don't want to handle this.  I wouldn't trade Livia for anything.  I'd trade the MPS, but unfortunately, this comes with Liv. 

If I can't get an easy button, can I at least rent one for a day?

It's been a hard 6 months for us.  A lot of change with Livia, financial worry and other family medical "stuff."  I keep telling myself, "this is just a season, it will get better."  I pray about it ALL THE TIME.  I've had frustrations with God, which FRUSTRATES me.  But I know He wants to hear it all.  Good and bad.

Finley is in such an awesome stage of her life.  She really is a great kid.  She's smart, funny and has a great imagination.  I wish I could bottle her up where she is right now and keep her there.  I mean, she loves me and thinks I'm the greatest.  It's been on my mind a lot that Finley is going to face a lot of heart ache in her young life.  I do believe that having a special needs sister is going to give her strength and compassion.  She's also going to have to grow up faster than most of her peers.  This does make me sad and nervous for her future.  Yeah, I know, you can't control your kids future....I KNOW.  But when you have my situation, you can't help but think about these things.  Sometimes I have the visual that my arms are ropes, Liv has one side and Finley has the other.  The side Livia has, often wins.  She takes constant care.  It's frustrating because I do feel like I'm missing out with Finley at times.  However, I have her.  I'm so thankful that I get to experience Finley and raise her as my child.

“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.”
― T.F. Hodge

My desired outcome; Heaven.  Enough said.
  

 

The minutes matter

The week of May 21st was a turning point week for me.  Yes, it's July 4th and I'm blogging about May.  This blog has been on my mind since that week, but I haven't been able to shape it until now.  That week was a turning point in my life with Livia.  I'm curious how many turning points one can have in a life time.  I'm thinking I will have many.  Anyway, this week was our third visit to the University of Mn for the Natural History Study.  I prepared for this trip like the two before.  Itinerary's prepared, luggage packed, a little fun planned and my mom in tow this time.  The only difference this time were some questions that I knew I needed to ask, but had been avoiding during the past visits.  This time I had to buck up and face the music.  I didn't know if I'd have another chance.  I mentally had to prepare myself because in my heart I knew what I was going to hear, and it was going to be hard to hear it out loud.  Getting to MN, we spent the first day at the Mall of America.  Once again, Livia LOVED the rides.  I wish I could bottle up her excitement and giggles and share it with everyone I come into contact with.  Pure joy!  The next day, Tuesday, was the meeting with Dr. Whitley that I had been preparing for.  I would love to go into complete detail about this meeting, but I think I would lose most of you reading this, and I really don't want to do that.  So, in short, I asked the difficult questions and indeed received the difficult answers.  I had prepared myself, but the tears ran anyway.  This turning point of days changed my outlook once again with Livia, a cure, and what really matters.  Before I go on, I want to express that in no way has my hope for my child decreased, it's only changed a bit.  I've learned a new way of LIVing, once again.  The anniversary of Livia's diagnosis is two days away.  I look back on these three years and I can't believe how much I've learned about myself, my kids and my family.  And now, with ONE more turning point day, another change has occurred.  It's now that the minutes matter.  This may seem obscure, but not to me.  Every single moment is an opportunity for a memory, a quiet hug, to hear a laugh or a word, to see her running and playing.  I'm not going to let any of these pass me by.  I'm in a new state of awareness, 24/7 and I'm not going to miss a thing.  I'm sharing this with you because it's really a great state to be in.  Having this frame of mind means; less stress, more fun and creating quality moments that really really matter.  The chaos of our life, to me, is perfect.  

As I sit in this quiet cabin on 2400 E, the familiar 4th of July visit is upon us.  This visit always sparks emotions in me both pleasant and not.  It's become an annual tradition that Jake and I pack up the girls and dogs and come "home."  This time of year is so much fun with all the events going on, but it stirs up the time that the pit in my stomach took up permanent residence.  Being around family and friends with our girls is so important to us.  We want our family to have the opportunity to create memories and have that quality time.  We need to do life together.  We also need to put the little stresses aside so that those moments don't pass us by.  Enjoy the minutes and fill your days with love and fun.  Happy 4th of July and may you be blessed and be able to recognize your blessings!

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."