Friday, November 7, 2014

#tbt #fbf

#tbt Throw back Thursday

#fbf Flash back Friday

I don't know about you, but I love looking at "old" pictures.  I have a great stash of photo's that came from my grandma and grandpa Fish's house.  When my grandma passed away, and her house was being cleaned out, I grabbed as many as I was allowed.
Gma Fish, baby Kelly, Dad, Great Gma


Baby Audra, Kelly, Gpa Fish
The pictures are mostly of my dad.  Ranging from new born pics all the way through to when I was born.  There are a few of some other family members, and of course, my grandma and grandpa.


My grandma Freeman (my mom's mom) is an uninhibited picture taker.  Her home is full of pictures displayed as well as albums filled.  One of my favorite things to do when I'm at her house is to look through those albums.  Wherever she is, her camera is with her.  I think I get my impulsive urge to photo take from her.
Baby Kelly, Papa & Gma Freeman


George, Jake, Tim, Heidi, Patrick, Cindy
Pictures mean a lot to me.  I take numerous pictures every day.  Whether on my phone or on my rebel t2i.  I've become pretty obsessed with photography and am currently researching new lenses.  I'm no professional, but I love it.  I'm desperate to capture everything and to learn how to take the best pictures.

When it comes to #tbt and #fbf, I want to hide.  If you're not familiar with this social media trend, it's pretty easy to figure out.  People post a picture from the past and tag it #tbt or #fbf, depending on the day.  Now, I like to look at other people's posts, but to participate myself is extremely hard.

There is something about looking at pictures of loved ones that have passed.  For me, a sense of warmth mixed with longing mixed with man do I love these people comes over me.  I also start "wishing."  Wishing I would have said this or that.  Wishing I would have asked certain questions.  Longing for just one more moment with that person.
Gpa Hubert and Jake
 Happiness for the memories created and the life that once was.  Reminiscing is what these pictures present and what #tbt and #fbf represent.  However, for me, with Liv, the act of looking backwards is just a firm reminder of what has been lost, the changes that have occurred within her, and what her future holds.  It's so bittersweet to look back.  I avoid it at all costs, however, it's all around me.  And ultimately, it's ok.


My Fridge
    
Great Great Grandma and baby Kelly












 I find myself searching for her smile.  Her laugh.  They seem to be few and far between these days.  You know that book "Let me hold you longer" by Karen Kingsbury?  I love it so much, but "will I recognize your lasts?"  is a quote from that book that rings in my mind on a daily basis.  Will this day be the last smile or laugh?  Frankly, it's horrible.  But on the flip side, getting a smile or a laugh is like opening a Christmas present because I am so in tune to holding on to her before the cloud of MPS gets too dark.

So, I take a million and one pics, but rarely do I look back.  Video's, heck no.  Just today I had my camera out and have this 15 second video that I have locked on my memory card.  It's of Finley when she was 2 years old.  She's dressed in a pirate's costume and I have her say "Scurvy buccaneer" and "Shiver me timbers."  I showed it to her.  We sat and watched that video together for 5 minutes.  Playing it over and over again.  We laughed so hard and she asked me so many questions about it.  It was such a great 5 minutes.  I remember, as a kid, loving to watch home videos (on BETA, yes BETA video).  We have video of Liv before diagnosis, and I've never watched them.  But, I'm glad we have them.  Just like the million and one pictures I've taken and will take.  They are a security blanket for me.  Because one day, it's all I'll have of her.  These pictures will help me remember every.  single.  thing.

A #fbf of my baby girls






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    Tuesday, October 7, 2014

    Pay it Forward

    "Pay it forward."  This is a term that I'm sure we are all familiar with.  It originated with Lily Hardy Hammond in her 1916 book In the Garden of Delight.  She described this "deed" as "alternative giving,"  I love this because alternative means different, and giving means generosity.  I always thought of "pay it forward" as an on going movement.  Something we can all do because we've been motivated or inspired by someone else's generosity or kind act.  To pay it forward, in a sense, is to continue the act of showing love because of love.

    No matter what situation or circumstance we are facing, we've all been equipped with the "tools" we need in order to survive.  Some days it may feel like the tool we need is buried deep within our junk drawers, but we know it's there.  Some days it feels like; if I have to pick up that tool one more time to fix ......, I'm going to flip my flip'n lid!  Some days it may feel like, THANK GOD I have this tool.  I'd be completely lost in this life without it.  Some days it may feel like; I'm standing in this tool aisle without one clue of which to choose.  Within each of us, our tool box exists.  For me; the way my day goes, my job performance, how I react to Jake or the girls, the way I treat my family and friends, my outlook, depends on my attitude towards my "tools." 

     I hear more often than not "I have no clue how you do what you do."  I hear it about the way I work out, the marathons I run, dealing with the situation with Livia, the foundation stuff, etc. etc.  But the same thing comes to mind every time I hear this.  I do it because I love it.  I could write an entire separate blog about why I run and workout, but I'll just keep it simple here.  It's therapy, and I like being healthy.  If exercise or endorphin's could be put in a pill, Walgreens wouldn't be able to keep it on the shelf.  It's not always easy, and some days my body is tired, but my "tool" with exercise is survival.  Exercise #1 makes me feel better.  Exercise helps me keep ahead of the physical demands I need with Liv.  Exercise also has created many many awesome relationships that I'm so thankful for.  I'd say everything else on my list, I equip myself with love.  I used to be hesitant about writing about love, or saying how getting through this journey is easier because of love.  But ya know what, it is.  These circumstances or situations we are facing are all lessons.  Having Liv and this journey we are facing with her has flipped this switch inside of me.  I reflect, a lot.  I think about growing up, family situations, personal decisions, wrong doings, great doings, and how I've been shaped through all of it.  The attitude we give towards whatever we are facing is going to determine the character, the strength, and the success in life.  In no way do I think I have everything figured out.  But what I do know is that I'm able to do what I do, and function, because of love.

    This past Sunday, my family of 4 was out at breakfast after church.  Our server was very attentive to our needs and frequented our table.  Especially at the end of our meal.  Even after I sent the girls milk back for tasting "off," she presented at our table with a huge smile.  The last visit to our table she said "is there anything else I can get for you?"  Jake responded with "no thank you, just our check."  The waitress smiled even bigger and said "NO, your bill has been taken care of."  Jake and I both looked at each other, jaws on table, asking why.  She explained that she and another one of the servers had paid for our bill.  She looked at me and asked if she could hug me.  She told me that she recognized us and had seen our story on facebook.  She explained that she wanted to "pay if forward" to us for "doing such a good job and being an inspiration."  In that moment, if my heart could have exploded, it would have.  Jake and I sobbed.  I was so humbled and touched that this 20 something server was showing us this love and generosity.  This situation, this lesson, taught me how I want to be.  Generosity is a HUGE value that, personally, I've had to evolve with.  (another blog topic)  In a way I feel undeserving because I'm doing what I know how to do.  Loving my family, taking care of my children's needs, it's all easy.  I would take care of my girls for the rest of my life if I had to.  I appreciate the server's generosity so much.  I wish I would have asked her name.  I wish I would have found a manager and asked him/her to give their amazing servers a raise.  I told Jake that someday, when we are old, and it's our time to "pay it forward," I want to do things like this.  If we come across a special needs family, I want to buy them a pack of diapers, because we know how it feels to be recipients of love.

    The #1 lesson I've learned having Liv is because of her perfect innocence.  Even though Livia can not speak, her actions speak volumes.  Livia thrives on being around others.  She loves to hold anyone's hand.  She stares into people's faces.  She especially stares at people who have a visible, loving, tender soul.  She knows.  Liv has taught me something that I know, without her, I would have never recognized.  We were created to love one another.  All she knows, all she wants, is to be near people.  If we all were that way, if we all just loved, wouldn't this world be a more pleasant place?





    Colossians 3 

    Living as Those Made Alive in Christ

    Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your[a] life, appears, then you also will appear with him in glory.
    Put to death, therefore, whatever belongs to your earthly nature: sexual immorality,impurity, lust, evil desires and greed, which is idolatry. Because of these, the wrath of God is coming.[b] You used to walk in these ways, in the life you once lived. But now you must also rid yourselves of all such things as these: anger, rage, malice, slander, and filthy language from your lips. Do not lie to each other, since you have taken off your old self with its practices 10 and have put on the new self, which is being renewed in knowledge in the image of its Creator. 11 Here there is no Gentile or Jew, circumcised or uncircumcised, barbarian, Scythian, slave or free, but Christ is all, and is in all.
    12 Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. 13 Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. 14 And over all these virtues put on love, which binds them all together in perfect unity.
    15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. 16 Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. 17 And whatever you do,whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

    Wednesday, August 20, 2014

    A trend that's actually making a huge impact, and you're annoyed.

    The ice bucket challenge.  How many of us are so aware of this?  I'm sure somewhere in your conversation today, you will speak or hear about a bucket o ice!  Have you been challenged?  Taken the challenge?  Have no idea what I'm talking about?  Ask any random person to show your their Facebook, IG, Twitter, or even Google Nightly News, ice bucket challenge.  You will see video after video after video of people pouring ice water on their heads.

    Jake, Finley, and I have even done it!

    I will admit, I'm a regular on social media.  I have a love hate relationship with it, but none the less, I'm more addicted than I'd like to admit.  We all see things posted, tweeted, or pictures that we don't agree with.  We have that right to disagree or not "like" something.  We are all entitled to our opinions.  I'm not one to usually speak up about something I disagree with, unless it really hits me hard.  I don't like to stir the pot, per say, and avoid confrontation at all costs.  I like to keep the peace.

    Last night was a different story.  I was scrolling through my Facebook news feed and saw a post from a so called "friend."  I can't give you every word they said because today this person's Facebook has been deleted OR I've been blocked.  So, the post went something like this.  I'm so tired of seeing all these ice bucket challenges.  I think it's just so stupid that people are doing this.  I'm so ready for this to be over so that my news feed isn't clogged with all these stupid videos.  Maybe I'm just a jerk, or maybe I'm just done with Facebook.

    Along with all the videos circulating out there are articles people have written for and against the ice bucket challenge.  I've read both sides.  I've learned a lot about ALS and also learned that this challenge has raised millions for this devastating disease.  As far as the articles written against this challenge, the only thing that I can find in these articles that I agree with is that if you are dumping ice on your head on not making some sort of donation, your kind of missing the point.

    So, my response to this person's post was this.  "I happen to think the ice bucket challenge is a great thing.  It's bringing awareness and funds to this life changing, terminal, no cure, devastating disorder.  But, hey, maybe I'm partial because my daughter has a terminal, no cure disorder and this ice bucket challenge has brought awareness and funds to our foundation that supports medical research.  I wish more people would stand up for these horrible disorders."  Or something along those lines.

    Annoyed with your facebook feed being clogged with these videos?  I'm not sorry for it.  These rare diseases need a voice, and admit it, these videos of people dumping water on their heads made you smile or laugh.  It's trending now, so don't worry, a few weeks from now you'll probably see only a few videos a day. 
     My typical facebook feed reads a little like this:
    • Please pray for my daughter, she had a horrible seizure last night and we had to rush her to the ER.
    • My son actually smiled today.  I haven't seen that beautiful smile in months.
    • What medication are you using for your child's movement disorder?
    • I fear my son is losing the ability to walk.  What brand of wheel chair are you using?
    • Today my worst nightmare is happening.  We have to say good bye to our 12 year old daughter.

    So, you'll have to forgive me for being a little sarcastic and opinionated in this blog.  However, I will never apologize for being a voice for my daughter, her friends with MPS, or any other rare disease that needs to be heard about, funded, and for people to just gain compassion.

    Not sure about ALS or what it's about?  I found this article to being extremely good.  http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/

    And just as a side note, I'd dump whatever it took over my head to cure my daughter!


    Saturday, August 9, 2014

    Change

    Embracing change creates somewhat of a freedom.  It does not, however, make the inevitable tolerable or less sad.  It does not make the gut wrenching idea of losing my daughter any easier, but, it does help in transitions and decisions.

    Change is freeing if you are open and willing.

    Change can bring about situations that are better than you could have imagined.

    Change is a big part of my life.

    Change is scary.

    Change is inevitable in anyone's life.

    Do you remember that feeling you got as a child, waking up Christmas morning when the house is so quiet you think you may still hear Rudolph?  The idea of what could be waiting for you under the Christmas tree.  Part of my excitement was waking my sister and parents up to share in that first glimpse of "the goods."  I can still feel that anticipation and excitement.  Unfortunately, I don't  have this anticipation feeling anymore.  I don't let myself get anxious or excited about much.  I do look forward to things, and appreciate vacations, parties, gifts, etc.  It's just I don't let myself get worked up in anticipation.  It may be a defense mechanism that unbeknownst to me, happened after Livia was diagnosed.  I mean, it makes sense.  Haven't we experienced the ultimate let down?

    This thought is sad.  You may be thinking, I feel bad for her, not to get excited about things.  Please don't.  It's been freeing.  In the past I would dwell over things like preparing for a dinner party.  I'd let myself think about everything that needed to be done to make the event absolutely perfect.  It would take days of thought even if it were just a few people coming over.  It consumed me.  I don't have that anymore.  If I know something is coming up, like a trip, or an event, I prepare accordingly and do what needs to be done, but it doesn't consume me like it once did in the past.  I don't anticipate "this or that" happening, because if plans get changed or something comes up, what good does it do for me to fret about the "what if's."  This is freeing.

    The ultimate change occurred on 7/8/09, when we got the horrendous news about Livia.  Think about that Christmas morning feeling, waking to no presents under the tree, and then multiplying it by infinity.  Then having that sick feeling creep up inside of you at least once a day, being reminded that tomorrow could bring a huge change that will change her life forever.  Will she even be here tomorrow?  Thankfully, I don't even anticipate tomorrow, anymore.  This is freeing.

    Livia recently got a gtube.  It was a decision that Jake and I had to make due to the recommendation from  Livia's doctor, whom we trust very much.  This was a big change about to happen.  Were we making the right decision for her?  How could it possibly be time for her to need this?  Selfishly, I didn't want a tube hanging out of her belly because I loved her perfect tummy.  We decided to move forward with the procedure to proactively place the tube for her benefit.  She also had an umbilical hernia repaired.

    I'm happy to report that this change has been great.  Livia has recovered beautifully, and you wouldn't even know she had the tube placed.  I believe that her hernia may have been causing her some pain because after we got home from the hospital, she's been so happy and engaged.  Her mood has validated that we made the right decision, and this change, has become part of our "normal."

    Change will continue to be a part of all our lives.  It will impact us when we least expect it or even want it.  However, even when change seems impossible or scary, the ability to embrace it, work with it, be open to it may really surprise you.  Never, in a million years, would I think my life would be what it is today.  It's taken awhile to adjust to diminished dreams, but the new dreams and opportunities that we have been given have enriched our lives more than I think those original dreams would have provided.

    Change can be freeing.



    Monday, June 23, 2014

    Lint Trap

    I'm always touched when people talk and interact with Livia.  Just today my breath was taken away when I stood back and watched a little boy sitting with Livia on the floor at the drop in.  She was in her own little world and he was handing her toy after toy when she would drop one after the other.  I could see by the way he was looking at her that he knew something was different about her, but he just wanted to help.  I could have watched that forever.
    Knowing and rattling the facts about Sanfilippo Syndrome has become second nature.  The words roll out of my mouth with such ease that at times, I don't even have to think about what I'm saying.  However, stating these facts, and seeing Livia in the same breath can be confusing.  For the longest time, Livia seemed very typical with the exception of her "voice."  She's now showing more physical changes, but still for the most part looks like a kid!  Understanding this syndrome when you aren't "living" it, is hard.  So, here's my attempt to help you understand a little better.

    I want you to picture your clothes dryer.  It's a machine that most of us use everyday.  Now imagine this dryer as your body.  All dryers have lint trap vents or doors.  This "lint trap" is what we have in our bodies called heparan sulfate (an enzyme).  Kids with Sanfilippo Syndrome do not have this lint trap (or the missing enzyme heparan sulfate.)  In our bodies that have that functioning "lint trap," we can safely remove that lint trap, pull it out and dispose of the lint like we are suppose to (or in real anatomy, we pee it out).  That lint that I'm referring too, in our bodies, is called glycosaminoglycans or GAGS.  Like in Livia's body, if a dryer is missing that lint trap, the lint (or GAGS) has no where to go but in places that we don't want it to be.  Can you imagine running your dryer over and over again and all that lint going into the exhaust pipe, or the motor, or other critical parts of your dryer that makes it run?  Eventually, your dryer isn't going to work properly due to all of that lint build up.  Unfortunately, this is exactly what is happening to children that are diagnosed with Sanfilippo Syndrome.  Those GAG's (or lint) are building within their systems in all the places that we don't want that build up.  Just because one little part is missing, but, it's a critical part.  These GAG's are building in their organs, tissues, joints, but mostly brain and central nervous system.  This build up is what has caused her to stop talking, feeding herself, motor issues, seizures, swallowing difficulties, and eventually death.

    The goal of all the fundraising you see online or on TV, basically, is to be able to install a lint trap door or vent in a newer dryer that may only have a small amount of that build up.  A way to save a child in time, before too much damage occurs.  You see, all of us, even children born with Sanfilippo Syndrome are born with a clean slate.  It takes a lot of uses (or a lot of years) to really see that damage take affect.  It's why it's so important to get this trial funded so that no more families have to watch their children slowly slip away.  We have an opportunity to make a difference for our future.  It doesn't matter if it's $5 or $50,000, this trial can happen with all of our help.

    Ways to help:


    Donate HERE or HERE or HERE or HERE or HERE

    Thank you for your consideration, and just listening.  More than anything, I want people to understand what is going on with Livia and other's like her.  Liv Life Foundation wants to help impact the future for other's.  We've only been given this one life, so let's LIV it for good, with one another, and with intention.




        

    Thursday, June 12, 2014

    Perfect Timing

    God really does have it all under control, doesn't He?!?  At least when something wonderful happens and you can feel Him wrapped up in the situation, it sure feels that way!

    This blog has become an outlet for me.  A way for me to get out what otherwise would end up as "verbal diarrhea!"  It's a therapy tool that let's me express what I'm feeling, what I believe in, and to tell our story.  It's reached people that I probably don't even know!  It's been passed around and shared, which completely blows my mind.  I'm humbled when people say that my words have touched or inspired them.  I'm no literature major, and I'm certain my grammar could use some correction.

    My blog reached someone that God knew we needed in our lives.  I'm constantly writing about Livia and how her life impacts ours.  The situations we encounter when it comes to her.  The worries I have about her health, her issues, etc. etc.  But that's not my only worry or the only part of our story.  My sweet Finley Faith weighss heavy on my heart, A LOT!  I worry how this life will impact her in the future.  She doesn't really know the extent of Livia's issues.  Being the "little sister," this is all she knows.  She knows Livia as her sister, and that's it.  She does know that Liv is different and takes extra care and patience.  But Finley has always just gone with the flow.  She's helpful, but doesn't interact or play with Livia because Livia has never done that with her.  Finley thinks Livia will grow up.  Just the other day she said, "mom, when Livia grows up I really hope she will learn to talk to me and go pee pee on the potty like me!"  I fought back the tears, swallowed the lump in my throat and totally avoided the statement by offering Finley a Popsicle.  There will never be a right time to tell Finley about Livia, but that day was not it.  I find myself praying daily that I'm doing enough for Finley.  That she is having a good childhood.  It saddens me that she does not have a relationship with Livia like I have with my sister.  How will she be when Livia gets worse?  These thoughts burden me.

    A couple weeks ago I received an email from a lady named Gayle.  She introduced herself to me and explained that she received an email from a lady at the Rockford Parent Magazine in regards to the June parent of the month, which just so happens to be my hubby, Jake.  The email referenced our story, Sanfilippo Syndrome, and my blog.  Gayle then went on to tell me that she read my blog and gained a wonderful perspective 30 some years after she lost her brother to Sanfilippo Syndrome.  Whoa!  At the end of her message she expressed that she would really like to speak with me and I quote " If you have any interest at all in connecting, I would love to speak w/you in attempt to offer any support that I can.  Even if its from the perspective of being a sibling of someone w/Sanfillipo syndrome."  


    I immediately emailed her back.  I was not going to let this opportunity pass me by.  Texts were exchanged and just this morning, Livia and I had the extreme pleasure of meeting Gayle in person.  I knew this was going to be an emotional meeting for both of us.  Hugs and tears were exchanged.  God calmed my burdened thoughts through this beautiful new friendship that is only hours old.  Our conversation was easy and familiar.  Sanfilippo Syndrome verbiage is pretty much the same from decades ago.  I'm pretty sure Gayle experienced nostalgia being in Livia's presence.  Gayle's words and encouragement, not to mention all the little similarities we found getting to know each other, were extremely comforting to me.  God was completely wrapped up in this.  Gayle and her family were placed in our life to offer something.  Support for Jake and I, yes.  To love Livia, absolutely yes!  To love Finley but to also offer a sibling perspective, oh my yes!!!!!  If you are open to praying, listening, and obeying, God will show up in His perfect timing...every.  single.  time.




    Wednesday, April 16, 2014

    Taking a breath

    "I think it's time to consider a feeding tube."

    "We need to set up another neurology consultation because what you're describing to us indicates seizure activity and a possible movement disorder."

    "It must be so hard for you, as a family, to know that there is a treatment on the horizon, but it won't be here in time to help Livia.  I'm so sorry."

    Sanfilippo Syndrome has been a cement block wrapped around my ankle, dragging me deeper.  Since we heard those words, just 2 months ago, I feel like I've been drowning.  It's a tough pill to swallow knowing that A- this disorder is progressing quicker than we want.  B- we have to make decisions for our child that are painfully hard.  C- when reality is spoken aloud, there's no denying.  Livia is falling deeper into this scary world.  A shortened life of very unfair circumstances that children are not suppose to go through.  Parents and siblings and families, either, for that matter.  So our job, as her parents, are to provide the best care and opportunities to give her safety and love.  Love.....that's the easy part.  Our hearts bleed love for her.

    I attended a women's conference this past weekend.  One of the speaker's, Helen Burns , was one that I could have listened to for hours and hours.  She spoke with so much love for God and her family.  She's someone I aspire to be like.  She said something (many things), but one thing in particular that hit so hard I haven't been able to stop thinking about it.  She said "As you are raising your children, you are raising your grandchildren."  HELLO.......so true.  I, of course, thought immediately about Finley.  To be honest, she was on the forefront of my mind the entire conference.  Thoughts of attending this conference with her one day, experiencing missions with her, her future family, etc.  However, this idea of raising our grandchildren while we are raising our children made me think of Livia, as well.  Jake and I are at peace about Livia's future.  I can say that now because she's here today.  But, the idea of her cure, her freedom from Sanfilippo Syndrome will come in Heaven.  Her salvation is secured, and we can rejoice in that.  However, hearing those words 2 months ago extinguished that fire inside me to fight.  The fight we formed when Liv Life was created.  Jake and I wanted to do something when it came to MPS.  We wanted to make a difference in someway when there was nothing we could do for Livia.  We established our 501 c3 status, have a BOD, have meetings, sell tshirts, and have events.  We've been able to write checks to Nationwide Children's Hospital, Lurie Children's Hospital, all for medical research.  But for me, selfishly, I wanted to stop.  Selfishly, I thought, well, I guess we lost our fight....what's left.  Then it hit me.  Once again, alone in my van, I heard God's voice.  He said, "What if I decide I want you and Jake to have another child, What if this happens to Finley, What if a baby is born today that has Sanfilippo?"  I can not just focus on my child, but I know that as a child of God myself, I have a duty for all His children to do what I can.

    There's a little girl named Eliza.  A beautiful girl with a beautiful family that is fighting with every inch of their being to save their daughter, as well as future generations.  Eliza has Sanfilippo Syndrome, and this treatment that is so very very close may be in time to save her life.  I want to apologize to the O'Neill family for my selfishness.  I've watched on facebook their daily, persistent, cause worthy work they are doing for our children.  I've avoided watching their viral video because I was tired and sad for Livia.  I watched it just this morning after my van moment, after praying.  I was just about to turn my van off and my most favorite, go to song that I think is the best song out there "Ocean's" by Hillsong came on.  I've listened to this song over and over again.  I worship like I've never worshiped before when I hear this song.  Today, I saw myself in this song.  I saw myself drowning, with that cement block bound to my ankle.  I then saw it break off and my head coming out of the water, taking a deep breath.  I heard God tell me that I'm in his embrace and that He will not fail me.  He loves me, He loves Livia.  So today, I knew that my fire was back.  I get to do life with my beautiful family, I pray, for many days ahead.  But, I will fight along side the O'Neill's and many other children out there because if this is God's will, then I'm called to help.  I'm asking all of you, please, take a moment to watch this beautiful family.  Not only will you see Eliza, but you'll also see the gorgeous Izzy Jurado.  These two girls together show exactly how devastating Sanfilippo Syndrome really is.  Click here to watch their story, their fight, and maybe you will be called to help.  Also, please share my blog, their video, all of it, because the more people we reach, the more opportunity we are giving our children (Galatians 3:26 "So in Christ Jesus you are all children of God through faith").










       

    Wednesday, March 5, 2014

    What's in a word?

    What's in a word?  To me, it's everything.  What's in silence?  It's heartbreak.

    Having a daughter with special needs puts us in the world of special needs.  Online groups, acquaintances with children of the same diagnosis, etc.  So, through these groups and friends re-posting different articles, I read a lot of them.  I thought about posting some of the articles, but chose not to.  If you Google, "what not to say to a parent of a special needs child," you will see a big selection of these articles.  A lot of these get posted, and re posted.  I even saw an article titled "What not to say to a parent that has lost a child."  I find myself reading these articles, agreeing with some of the points, but mostly reading them with a pit in my stomach.  I feel that these articles are the yellow caution tape around an already isolated situation.

    I've not had a lot of experience with people saying rude things to me.  I've never had someone say something completely inappropriate that I needed to put a defense up.  I've had things said to me that in that very instant a wave of nausea comes over me and I think; "REALLY?"  However, those statements that sit a little uneasy with me, I've realized, are meant with good intentions.  It's taken me awhile to realize this, and I've had to swallow a little pride, but at least they are saying something.  These lists that I mentioned previously give the people reading them another reason to look away, or tread even more cautiously around me and my family.  I don't want that.  I don't want people to feel like talking to me or about special needs has to be so careful as to what to say.  I feel like people already don't know what to say to me, so they better say nothing.  That's even worse!

    I have such a love hate relationship with Facebook.  I love how easily it is to catch up with someone.  I like that I can see pictures of my nieces and nephews that I don't see as often as I like.  I like the resource of meeting others and having the accessibility of asking another MPS parent a question.  What I hate about "the book" is how easily my feelings get hurt from the non response of people who I thought would be there for support.  It's petty and Jr. High-ish, but it's true.  When I can see what other people are posting and liking about other things, and I never get a "hey," "hi," "how is Livia?"  It hurts my feelings.  It's not just FB, it's life.  Once again, it's taken time and tears, but I've learned that putting my expectations on other's only leads to heart ache and loneliness.  What I want more than anything, is for people to know that we are approachable.  We are still the same people we were before our daughter received her diagnosis.  If anything, we are better more loving people.  You don't know what to say to me?  That's ok.  Sometimes I don't know what to say to other's going through the exact same thing we are.  But, say something.  Silence, even if not intentional, feels insensitive.  In this day of social media, texting, emailing, easiness......let someone know you care.  I'm guilty too.  But, because I've been on the receiving end of silence, and know how it feels,  I've been more intentional with others.  Even when I can't find the words, I find "xoxoxoxo."  Or, "I'm praying for you."  Or "Hi....I miss you." 

    The purpose of this post is to not make anyone feel bad.  It's to let people know that you can talk to me, ask me questions, but mostly I want you in our life.  One day, Livia won't be here.  One day, memories will be all we have.  I want that time to be filled with stories and love.  I don't want it to be regret of not getting to know her, or feeling sorry for not reaching out to us.  I don't want things.  I want relationship.  More than ever, I know how important this is.  So here's a challenge.  Instead of checking your FB feed, twitter account, or take a scroll through Instagram; send someone you've been meaning to talk to or check in on a quick "xoxo" or "I miss you."  See what kind of door open's, and I pray it's a relationship bonding/mending door!    

    To those of you that are constantly loving and encouraging my family.....thank you!  To the texts, cards, emails, FB chats that I get daily from the people that just check in......thank you!  We could NOT get through this journey with Livia without you.  XOXOXOXOXO  

    Thursday, February 6, 2014

    Seven

    On this day, seven years ago, I became a mother.  That snowy, beautiful day is etched into my brain.  I can remember so many details that I strive to hold on to.  It was a day that I had thought about for the majority of my then, 26 years.  Being a mom was something I knew I wanted.  Motherhood, to me, was from the pages of a storybook.  I had my ideas, I had my dreams.  I thought I knew what being a mom would be like.  Never could I have been prepared for this extraordinary, unordinary life.  No storybooks tell a story like ours.  In a way, I'm writing it for you.  To explain that although this bittersweet love story will have a sad ending, this life that has been created because of you will be unforgettable and unique.  It is more beautiful and real than I could have ever dreamed.  This, Livia Grace, is for you.

    To wish you a sincere Happy Birthday, is really hard for me.  I do, though, because you deserve to be celebrated every single day of your life.  However, this one day marks another year gone.  It's a symbol of time.  When I know time is limited with you, I want to ignore it and take you back to that beautiful day in February when we first met.  The days of constant embrace, getting to know every single line of your body.  Falling in love hard and fast.  Those days were perfect.  I was captivated by your beauty that very first instant I saw you.  I had no idea at that moment how your beauty and your quiet being would shape me as a person.  How being your mom would completely re-write what I thought life should be like.  That I would find God, Grace, and strength during a time that my endurance would be tested daily.  You, my sweet girl, tell a story of most vivid and pure life.  

    Your innocence and sweet demeanor are the main character. 


    The exposition of your story was that first day we met.
      

    The rising action was the time when you were at your best.  Your voice.....how I long to hear that sweet voice.
      

    The climax is now.  It's hard to face that we are in this stage of your life.  However, the climax of a story is always the best.  It's the time in a story or movie that we never want to end.  It's the time (or point in a story) that we always think about when it's over.  Here and now, this birthday we will celebrate.


     The falling action and resolution are yet to come, and frankly I pray it never comes.  Until then, we will keep reading your story and taking close notice of the lessons learned through your most beautiful life.

    Happy 7th birthday, Livi~Loo!  May you know always and forever how grateful I am to call you mine.  I'd pick YOU, every time! 







    Wednesday, January 29, 2014

    Choose joy {stop complaining.....you may miss your ride}

    I heard a news report yesterday while listening to KLove radio.  The report was on a group of people who volunteered to be in a sleep study.  One group slept much better than another group.  Scientists took both groups, separately, to give them memory tests.  Before the tests were administered, the group that was "sleepy" was convinced by the scientists that they had a quality night sleep.  The sleepy group actually performed better on the tests because they were coached and convinced that they slept great.  They were in a mindset that they weren't tired.  The news report then went on to say that by simply convincing our self towards the positive of a situation can be all we really need.  Negativism, pessimism, and constant complaining can be detrimental to our lives.  These "qualities" rob us of joy. 
    For some reason, this simple idea kept playing over and over in my mind.  I am an eternal optimist.  Or at least I like to think that way about myself.  I do believe that I have trained myself to be this way.  I like to see the best in everyone, avoiding conflict at all costs.  Daily, I choose to get out of bed and face the reality that my child is slowly losing her abilities.  My husband, before he goes to work every day, goes into her room to listen that she is indeed, still breathing.  Yet, Jake and I have made the choice that we are not going to let this devastatingly scary and tragic situation rob us of our joy. 
    While we were in Disney, I loved people watching!  So much happiness and joy all around.  Lots of people to watch, and lots of situations going on.  I overheard a lot of conversations.  It's hard not to, especially when you are on the monorail or a bus.  One particular, not so happy situation relates a lot to this post.  We had to catch a bus to one of the parks.  The monorail was down, so this was our only option.  People were not happy about this.  The convenience of the monorail is why some people choose to stay at certain resorts.  So we were waiting for the bus, and there was another family on the bench beside us.  The husband was in such a tiffy about the monorail being down, and was reaming the Disney attendant working the stop.  She was kindly explaining to him why the monorail was down, but she assured him they had extra buses working and he would get to the park.  He continued to voice his annoyances, and kept making me feel very uncomfortable and I had nothing to do with the conversation.  His blood pressure was up, his wife was embarrassed, and the attendant was at a loss.  The constant complaining got him nowhere and made the situation worse than it needed to be.  It probably set the tone for their entire day.  We overheard that they were going to the same park we were.  We saw our bus, proceeded to board the bus, looked back and there was the man still sitting on the bench {complaining} and they missed their ride.   
    Disappointment is bound to happen.  Tragedy and unwelcome circumstances are a part of life.  I'm not saying people shouldn't voice how they are feeling or give an opinion.  However, I am saying there are things we can't change that are out of our hands.  We can however, manage our feelings in a constructive manner. Do I want this life for Livia, absolutely NOT.  It hurts, everyday it hurts, but complaining about it will only set the tone for misery.  The insight to life that we've been given along with Livia's diagnosis has made this mental statement to me that I feel I need to share with you; life is short, family is everything, joy is all around us but you must choose to want that joy in your life.  When you are able to choose joy, you will be able to LIV moments more fully and with more vibrant life than you could ever imagine.  

    “Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.” 
    ― Rumi   



    “Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” 

    Friday, January 10, 2014

    Protecting my cubs

    As a parent, we have a primal instinct to protect.  The second our child is born, our role is to frankly, keep them alive.  Our babies depend on us, 100%, for at least the first several years of their lives.  In the jungle, a lioness will go to any length to protect her cubs.  She even hides her cubs for the first 2 months of their lives.  Often times the lioness will be killed during a pride takeover protecting her cub from attacking males.  I believe, as a parent, we are wired to always protect and worry about our kids, no matter what age they are.  Typically, we raise our children and they become more independent.  We are to instill good values, manners, sense of humor, et cetera.  They, in a sense, are to one day leave our pride and the circle of life continues.

    With Livia, and any child with Sanfilippo or other rare and devastating genetic conditions; our role as parents for their entire lives is that of protection and well being.  Livia is completely non verbal.  She still has cues that Jake and I can pick up on, but no words.  We have been extremely fortunate in our situation.  I have the blessing of being a stay at home mom.  Jake is a completely involved and hands on father.  We have grandparents and aunts and uncles and friends and other family members that would go to any length to help us out.  People who would drop anything to be here in a time of need.  This is a HUGE sense of peace for us to know how loved we are.  Especially Liv.  If you are on social media, or watch the news, you may have recently seen this clip about a young boy with sever autism who was being abused by a therapist and the abuse was caught on a nanny-cam.  The article and news clip can be viewed HERE, if you have any interest in viewing this atrocity.  A situation like this is any parents worst nightmare.  I can not even imagine what his parents must have thought or felt.  It makes me nauseous and sad to even think about it.  We have been very lucky in that Livia's care has never been compromised.  Until recently.  I will not go into a lot of details, and by no means did anything like this video happen to her.  I don't feel the need to tell the entire world exactly what happened because we are moving on and the situation is being dealt with.  My point of this post is to shed a little light on how sever Livia's needs are and how it feels when trust is compromised.  It's also about forgiveness and moving forward.  I'll admit, forgiveness and moving forward isn't an easy thing to do when the inner lioness wants to come out and as Katy Perry would say "ROAR, ROAR, ROAAAAARRRRRR!" (If you don't know or understand that reference, click on her name!)  Moving on, when the situation occurred with Livia, it was one of those moments that I wanted to turn really ugly, chew someone up, and spit them out.  Imagine your whole body catching on fire, you're sure everyone can see your heart beating through your shirt, hands are shaking kind of madness.  That is what I experienced.  Her safety and well being was put in jeopardy.  It was a first, and hopefully a last.  Those feelings of madness I experienced was really hard for me.  I am a non confrontational person.  I avoid conflict and disagreement at all costs.  It makes me very uncomfortable and at times, I don't even know how to react.  In this case, though, I was forced to speak up for my child who can't speak for her self.  Luckily, it's being dealt with and I, as her mother, will not put her back in that place.  I'm saddened because due to this situation we are going to have to make a change in our routine.  A comfort and an activity, an outlet, that once was so routine will be no more.  But you know what, it's going to be ok and we are going to move forward and adjust.  It's our only option.  To dwell and continue to feel maddened by something is a waste of time.  I'm not saying that it should be ignored and swept under the rug, because we would NEVER let that happen.  But because it happened, it was dealt with, we move on.

    As of lately, I'm recognizing and realizing how confusing Sanfilippo Syndrome is to the outside world.  It's our life and our everyday, so I think I just automatically assume that people would get it.  I believe it's especially hard to understand because Livia's appearance isn't that different from a typical kid.  Because she looks "normal" people expect that she can do what kids her age can do.  When we meet someone out in public and they acknowledge her and talk to her and I explain that she can't talk, it's confusing.  Why can't she talk?  Well, how much time do you have?   Just yesterday, I had Livia out in her wheelchair and we saw someone that has never seen her in her wheelchair.  This person asked me "why is she in that?"  Can't she walk?  I explained that Livia can walk, and we like to keep her walking, but there are some situations that she needs to be in this chair when her mobility is compromised or that the situation requires her to be more safe in the wheeelchair. "HUH"..... was their response.  I really don't mind when people ask me questions.  I'd much rather talk about Livia than not.  I want everyone to understand my sweet girl.  Livia takes a lot of "hands on."  She needs a lot of guidance.  Can you imagine walking up to a child and placing your hands on their shoulders or taking their hand and forcing them to walk somewhere?  No, you wouldn't do that.  However, Livia requires that.  If you just let her go, she'd run.  She would not know where she's going, which direction to turn.  She depends 100% on others for everything.  That's Sanfilippo in a nut shell.

    I would not trade my Livia or Finley for anything.  I would spend the rest of my life caring for them if I could.  Somedays I'm tired, my body aches from carrying Liv, but I'm so happy they are mine.  I'd pick them every time, if given the choice.  Everyday I discover something new about my girls, life, and myself.  This gift, these realizations, have helped me in the process of forgiveness and moving forward.  Because really, it all boils down to plain and simple happiness and love.  If I wasted my time and energy at being mad and plotting defeat against something or someone else that may have wronged us, I'd miss out on discovering how precious and fragile moments with my family really are.  A thousand years wouldn't be long enough to be their mom, so you better bet that every second I get with them are going to be rich.  I don't have time for anything less.