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:

Join a team at https://www.crowdrise.com/event/join/PurpleLemonadeStand

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.

    

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.

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").

   

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  

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! 

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.” 

― Thích Nhất Hạnh

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.