FAQ about Sanfilippo Syndrome, Livia, and the Hubert Family

Hello Blog Land.  I feel very out of touch with my blog, and have a HUGE desire to jump back into writing.  It's so therapeutic, and in a small way, I feel like I'm making a difference along with leaving a legacy for Livia.

I've always said that no one ever wants to be in the world of special needs.  However, being forced into an unknown community isn't always a bad thing.  Over the last few months (my absence from this blog), our world of special needs has been nothing short of wonderful.  Livia is doing great.  She's lost her first tooth, which was a HUGE surprise for me.  Champions Club at our church, Rockford First, opened.  This ministry is for special needs children.  If you have a moment, click on the link and check it out for your self.  School is going great for Liv.  Her teachers and aids are people who anyone would be blessed to know.  I love all the children in her class.  I'm excited to see their happy faces on the bus every morning.  I love how excited some of them get when my dogs sneak out of the house to walk Liv to the bus with me.  It's little moments like this that I wish everyone could experience.  Every morning, as the bus drives away, I wave good-bye, but with my hand in the "I love you" sign.  Some of the children on her bus flash it back to me now.  Bless their pea-pick'n hearts.  That's what I think to myself, usually with a big smile and maybe a few tears in my eyes. 

I've also met, via the web, another special needs family whom I think about almost daily.  I watch her pictures via Instagram, read her blog, and see her posts on Facebook.  We've never met personally, but sometimes you're just drawn to people's spirits.  We do have a connection, and it's a pretty unique story.  There is another MPS family that lives in Bloomington, Il.  Not far from me, or far from where I grew up.  Their family hosts an annual MPS family gathering at a zoo in Bloomington.  The Barnett family is a beautiful example of how I want to walk this journey with Livia.  Val and Steve have two children, Steffany and Stevie.  Sadly, Steffany passed away at the young age of 15 from Sanfilippo Syndrome.  Stevie, 14, has the same condition.  The same thing Livia has.  Val has a niece (I believe that is their relation) named, Ramee.  Her daughter, Mable, has Batten's disease.  Ramee has inspired me and has drawn me in by her spirit.  She recently posted a FAQ about Batten's disease on her blog, Raising Redheads.  Please, visit her blog and educate your self about Batten's and  their beautiful daughter, Mable.

This blog has inspired me to do the same thing about Sanfilippo Syndrome, Livia, and our family.  So, if you have any questions that you would like to ask me, ask away.  Nothing is off limits.  It's so important for me to educate others about MPS, about Liv, and about our family.  Before I was in our special needs community, I would see other people with disabilities or special needs, have questions, but never knew how to ask.  So, if you have a question you would like to ask, email me at kelfish121880@hotmaill.com, send me a message on Facebook, or leave a comment below asking your question.  Remember, nothing is off-limits.

A Broken Heart

I've often said that I would trade places with Livia if that meant I could save her life.  I wonder though, if that really is a good trade.  The one "blessing" that comes with Sanfilippo, is that there is no earthly hurt.  No broken hearts.  No worries.  Livia knows nothing but happiness and joy.  She is happy and loving.  She loves people and is happy to just be in the presence of others.  Anyone.

I experienced a broken heart tonight.  For both of my children.  My heart is very vulnerable, everyday.  As each day passes, I feel like a little piece of my heart chips away.  Time is not on our side.  So, when my heart breaks because of something else, it upsets me.  I dropped my girls off at the drop-in before I had to teach a class.  The room was not busy, maybe only 5 other children.  Both girls ran right in, happy to be there.  Livia ran over towards a couple little boys and picked up a toy.  One boy, probably Livia's age held the other boy back and said; "watch out for that girl (pointing) she's really weird."  Livia, of course, went on playing, no idea what those words meant.  As I'm hanging up their bags, I then hear another little girl, maybe 7, ask Finley; "why is your sister like that?"  I watched quietly, feeling numb and feeling the tears well in my eyes.  Finley completely ignored the girl and just started playing.  I left the room in tears.  Completely innocent, maybe a little wrong on the boys behalf, but hurtful, nonetheless.  I understand and get that Livia is different.  I want situations like this to present a learning opportunity.  I was heartbroken to hear someone ask Finley that question.  Finley knows nothing other than Livia is her sister.  I'm not ready to tell her everything.  However, after I read PINK! (a story about friendship and acceptance), I took the opportunity to ask Finley a few questions about Livia.  Just to see where she stands with understanding Livia and if she notices her differences.  She doesn't.  She only knows Livia as she is.  I then told her how every single person in the whole entire world is different.  Not one person is the same.  God made all of us in a special way and we must embrace, love, respect, and be ok with people's differences.  I kept it at a 3 year old's conversation level.

Proverbs 31:8 "Speak up for those who cannot speak for themselves"

I'm speaking up for those in need.  I'm praying and asking all of you; teach compassion to your children and friends.  Teach them to love others.  We can all learn something from each other.  Everyone on this earth has something to offer.  My daughter's have taught me so much in their short lives.  They've made me want to love more.  I feel a duty to spread this message of compassion.  We can all do a little to make a big difference.    

Summer re-cap

The 2012 school year has started, and the smell of fall is in the air.  This is a big year for school for the Hubert's.  Jake started his head principal job at North Boone, Livia is in ALL DAY kindergarten, and Miss Finley Faith is in preschool 2 days a week.  The days go by so fast.  I don't like that.....at all.  However, with the start of a new school year; means new teachers, bus drivers, aides, and new relationships formed.  That, I like.

This summer was one for the memory books.  As a family, and as a foundation.  As a family, we really didn't do anything "big."  The girls love swimming so much, so any opportunity we had to swim, we took it!  A few day trips, but mostly we stuck as a four-some.  Liv Life, however, had a really awesome summer.  First off, the 2nd annual Liv Life Golf outing.  Big thanks go out to my step-mom, Carol, and my dad, Jim for all the hard work and time you put into organizing this event.  Also, thank you to Orange and Blue golf course in Savoy Illinois for helping us host this event.  Your team goes above and beyond to accommodate our needs.  Unfortunately, no one one the car again this year.  Maybe next year someone will finally hit that hole in one!  I'm excited to plan for this event next year!  Each year gets better and better!  All you golfers out there, keep an eye open and come join us!


Next up was the 2nd annual Liv to Ride poker run hosted by the 4-Way Saloon in Sidell, Illinois.  My sister and brother-in-law, Heidi and Tim put their heart and soul into this event.  Along with the owners of the Saloon, Bob and Ruth-Ann.  This year's event brought in double the amount of riders we had last year, if not more!  The support and generosity we saw from everyone involved in this event really speaks for the people that had their hand in planning, organizing, and participating in the ride.  Thank you, from the bottom of our hearts for supporting Liv Life and loving our family!  Tim and Heidi, thank you for everything you put into this event.  We love you so much!  A side note, both of my girls got their very first motorcycle rides!  Not to worry, I rode with and it was a slow one just down the street and back!  It was fun to hear their giggles and have the wind blow through our hair!

Last but not least, we had the quilt raffle.  This idea came from a lovely group of ladies that are very close to my heart.  I grew up in the small community of Homer, Illinois.  There has been a group in this community for over 100 years called "Art Needle."  It consists of 12 ladies, by invitation, that gather together once a month for meetings, dessert, a project, and more.  There are 3 ladies in this group that are especially close to me; my mom, mother-in-law, and grandmother.  The other women in the group are ladies that I know and respect dearly.  Some I know from church, former neighbors, and some I know because of their children and I went to school together.  They are all talented Christian women, that as a group, could probably conquer the world!  Anyway, each of these women possess some type of artistic talent.  Many of them, multiple talents.  As a group, they made "Livia's Star."  I had the honor of helping pick out the fabric.  I chose purple and green because those are the colors of Liv's room, and purple represents MPS.  From a lot of hard work, love, and heart came this beautiful creation.  Raffle tickets were designed, printed, and sold.  On September 7th, at Sleepy Creek Vineyards in Fairmount, Illinois the raffle was held.  The group, along with others sold close to 4,000 tickets.  I chose the location of Sleepy Creek, because this is one of my favorite local business' to support and I wanted the drawing to be held in a public venue.  I was so excited and nervous for the drawing.  I had an opportunity to speak a little bit about Liv and MPS.  Other people were at the venue that night and bought tickets after I spoke, before the drawing.  I wanted to pull a name that I recognized or we knew as a group.  I wanted someone that was there to win this beautiful piece of art.  When I pulled the name from the large tub, I think I stuttered when I read the name, because I didn't recognize it.  But, God has a plan.  The name I drew was meant to be.  My grandmother had sold the ticket at one of our family reunion's.  It was a cousin of her's that one the quilt.  Let me just say that I have a really, no REALLY, big family on that side of the family, and don't know everyone of my cousins.  However, I hope to get to know this one.  The lady that won the quilt, her daughter, is a national correspondent for NBC.  When Georgia, the quilt winner, found out she won, she immediately called her daughter, Michelle Franzen and asked if she could possibly get a story on the quilt or Livia.  Who knows if anything will come about with that, but the possibility is there.  I really don't think we are done with the quilt.  I think we will have more news to report regarding the quilt.  We'll wait and see!  Thank you, ladies of "Art Needle."  You are forever in my hearts for the love and generosity you've shown my family.  Each and every one of you have touched my life in some way.  Thank you for taking time out of your life to make this beautiful piece of art! 

On a side note, during the golf outing I received a gift!  Jake's aunt Becky had made a miniature version of "Livia's Star."  Becky is so talented with her quilting.  She recreated this piece for me without a pattern!  I love and cherish it so much.  I've yet to hang it, but it fits perfectly on the wall upstairs that you see as you walk down the stairs.  Thank you, Becky, for thinking of me and making this for our family.  I love it so much and I love you even more!  Also, during the Art Needle meeting on Friday Sept. 7th, before the Sleepy Creek event, the girls and I went to the meeting and there, the girls received a gift!  One of the members of Art Needle, told her daughter about Livia and our family.  Her daughter, Jenniffer, also an artist, generously made my girls a postage stamp quilt.  Livia's quilt has over 2,000 pieces and Finley's has over 1,600.  They are bright in color and so fun to look at!  Each postage stamp is it's own picture!  Thank you, Jenniffer (see her Etsy shop HERE) for pouring your heart into these pieces for my girls!  We've never met, yet she took the time to bring a smile to our faces!  We love the quilts!

All the tickets

My grammy, added her own touch to one of our shirts!  My "Livia's Star" mini quilt in the background

Finley's quilt

Livia's Quilt 

Liv loved Virginia!

Picking the ticket!

The winner, Georgia!

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