Simple smiles

Simplicity.  This word has been a resounding theme for me.  The simple, everyday moments are what help me survive.  I've decided that stress and anxiety have no place in my world.  It helps nothing.  Now please, don't get me wrong.  I'm only human and sometimes these emotions find there way in.  To be really honest, stress I've experienced in the past mixed with the reality and everyday balance of Livia's diagnosis has showed me where my priorities should be.  Choosing simplicity has balanced my perspective.

Livia's health has been pretty stable.  She's quiet these days.  She really likes to relax and observe her surroundings.  She doesn't really even vocalize too much anymore.  I measure good days in the width of her smiles.  I can tell when she isn't herself when she remains somber and sleepy.  Her giggle is still and will always remain my medicine.  The simplicity of a smile, of a laugh, it's what we look for and expect from her.  That's it.  When I sit with her and she stares into my eyes, and then she smiles, I know she's there.  I get this sense of deep peace when this happens.

I love this time of year.  I love Christmas decorations, music, gifts, baking, all of it.  My birthday is on the 18th, so that's another reason I get excited for the season.  I love that Finley is at the age where she can retain songs.  She heard "Angels we have heard on high" for the first time the other day.  It was in a children's movie where they over exaggerated the "Glor oh oh oh oh ria" part.  She loved it so much and just laughed and laughed about it.  She sang it over and over again.  This simple moment made me cry happy tears.  One, she can sing.  Two, she has a sense of humor.  Three, we communicated back and forth about it which lead into the real reason for the season talk.  She was so excited about "baby" Jesus.  For those of you who don't know Finley personally, I'm here to tell you that she is a little Evangelist.  That's an entire blog itself, so I'll just keep going!  I also love the family gatherings.  When I was a kid, I looked so forward to going to different houses to celebrate.  Probably because it meant getting more presents, but to me now, the excitement comes from seeing people I may only get to see once a year.  When we first got Livia's diagnosis, and she got a little older and more active, I was very nervous and to be quite frank, stressed, about what it was going to be like at other people's homes.  I felt like I was going to have to follow her everywhere she went so she wouldn't knock something over and break it.  We still do that, but Jake and I tag team so it's not so bad.  We both have the mindset, and I think compete a little over who gets to "follow her around."  We both just want those moments with her.  I used to get upset when we went places and I was constantly following Liv around and no one would step in to give me a break.  It was very selfish of me, and I never just asked.  I thought to myself, why doesn't anyone see what we are going through?  Now, all I want is for my family to just get moments with her.  To share in the simplicity of just knowing her.  Knowing us.  Honestly, I could care less about a present.  I could care less about how well a house is decorated.  My cares and desires for this holiday season, and for every season, is the simplicity of family.  My heart bleeds for those that I love.  My prayers lately have revolved around family.  To keep the threads tightly knitted with whom I love.  We all know how short and precious life is.  One of my past blogs was about the perspective of ourselves on our death beds, looking back on our lives.  What will we say to ourselves in that moment?  Will we be at peace with the choices we made throughout our lifetime?  I pray we all find the simplicity and true meaning of everyday.  God created us for relationships.  I want mine to be fully alive and simply measured like the width of a smile.   

Permission to be

For Jake

Yesterday was a very emotional day for me.  It comes out of nowhere, at times.  Sometimes there are triggers, and I can pin point one.  An MPS mother posted about a dream she had about her newly passed son.  I got that this dream brought her comfort as well as extreme sadness and ache from the loss of her son. 

She misses her son.

It hit me...there will be a day that all I have of Livia are memories and pictures.  There will be a day that she will not physically be with us.  That's when the elephant took residence upon my chest, AND.... would.  not.  get up.  All day long, all I could think about was Liv not being here.  I wanted to run to her school, pick her up, and hold her under a quilt the rest of the day.  I cried at everything.  Another friend posted a video about a sunset boat cruise and the video showed dolphins jumping in and out of the water.  It was a happy video, but I sobbed like a newborn.  I kept it all to myself.  I thought several times that I should call someone.  I always think about calling Jake, but he's so busy at school and I don't want to bring him down.  I don't want to bring anyone down.  

Wednesday evenings I teach body pump.  I didn't want to teach, but I knew a good sweat would make me feel better.  I walked into the Y feeling so tired, so weighed down.  I put a smile on my face and welcomed my class.  No one knew that I spent the majority of my day crying.  I want to have normal conversations and I don't want people to feel sorry for me.  I don't want those of you reading this to think that I have a facade externally that I wear day to day.  That is beyond false.  97% of my days are spent in peace.  THANK GOODNESS!  So, when I get home, I'm greeted by a cheery toothless Finley grin.  Like she's not seen me in days.  It was refreshing and genuine.  Jake is on the floor with both girls getting ready to play a game with Finley.  I love love love this about my husband.  He is hands on, involved, loving, honest, and strong.  {I love his muscles!}  I was a little late getting home, but that's not a big deal.  I was ready to put the girls to bed, ready to eat, and ready to curl up under my quilt and veg.  Finley and Jake just started their game, and I wasn't about to tell them "no."  Bed time eventually came, and our routine ensued.  Of course, Finley picked one of my least favorite books to read, but I read it.  Girls were tucked in, now I can just be.  I went to the kitchen, made my food, plopped on the couch.  Jake was on the other couch, ipad in hand, getting ready to start one of our shows.  We didn't talk, not really.  Show was on, he was playing a game and watching.  I was starting to get mad, but talking myself out of it.  Shouldn't he have just known that I had a horrible day?  I was mad, at nothing.  Show is over, I have attitude, and off to bed we go.  Jake totally picks up on my mood, and try's to talk to me.  I think I just needed to feel angry.  Isn't this a normal "step" in experiencing grief?  I completely took it out on him, all the while hearing myself spit anger and realizing WHOA WHOA WHOA, what are you doing?  I could hear how ridiculous I was being, and told Jake that it wasn't him that I was angry at, I just felt angry.  I was sad all day long, and no one knew.  My fault.  I was putting up a barrier with someone that I cherish and need.  Jake tells it how it is, but allows me to be me.  I needed to just be angry, and even though anger does cause a barrier, he let me be.

I'm so thankful that I got a new day, today.  I usually dream, every night.  I didn't dream last night, and I slept soundly.  I woke up thinking about last night and yesterday.  Before I got out of bed, I prayed that God would give me the strength and peace that I would need for the day.  I thanked Him for my family, especially Jake.  Our relationship has been through a few trials during our {almost} 9 years of marriage.  This past year has presented with a big trial for us, but has proven to only strengthen our relationship.  I am a true believer that God works through us and our situations if we are open to it.  It could be very easy to throw up your hands and walk away.  It could be easy to let anger fuel your thoughts, decisions, and relationships.  We are proof that with God, love, patience, and honesty, life can flourish and be absolutely beautiful.

Life is fleeting.  For everyone.  Awareness of this came in the form of a beautiful, blonde headed, brown eyed, life filled, joyful, always smiling, little gift, that Jake and I get the honor of calling our daughter.  We are more in love with her with each new day.  The reality of her short life is what causes this ache and pain that on days like yesterday, are hard to shake and hard to ignore.  As we pray for a miracle....daily, the sadness comes because if Sanfilippo runs it's course with Liv, there will be a long time (God willing that we live out a long life) that Livia will not be a part of.  She is part of our family and has taught us what love and life should look like.  God gave us a gift, and He will call her home.  I'm on a mission of forgiveness, so that one day we will all be together in eternity.  Livia will be there, guaranteed.  Now to get the rest of us there.

Jake, I love you and thank you for being my partner in life.  You have helped me grow in my faith, encouraged me in my crazy endeavors, and loved me through my emotions.  I know we were created for this, and together, we will make it through.   

The focus

When I look at Livia, it's like looking through a pair of binoculars needing to be focused.  Like an opportunity to look at something so spectacular and beautiful, but the lenses just need to be focused.

That moment of clear, crisp vision.  The focus.

Looking through my binoculars lately, it's been hard to focus.  The cloud of MPS is heavy in our community.  Friends with declining health, tough decisions having to be made, kids struggling just to breath, early death, sadness, reality.  Our reality.  You see, I get to see Livia with that clear, crisp vision.  I look at her and feel so extremely blessed.  She is so good; like extra, all the time, good.  So when I have this gem of a kid that has taught me life, but in the back of my mind, looming and brewing, I know how hard it's going to get.  How will we do this?  How in the world will I watch her go away?  I hate this, and I hate writing this.  Today, I want to throw my binoculars and watch them shatter.  It's not fair that so many people around me are hurting.  It's not fair that when I look at my beautiful, smiling girl, I have to think that one day, she will be struggling to breath, and all I'll be able to do is hold her hand through it.  I can't do anything to help her.  But you better believe that I will love her through it all.  God gave me a caregivers soul, and for that, I am thankful.

If you are a praying person, please pray for our friends.  Kids living with MPS and their families.  Even those families that have lost a child.

I need some prayers, too.  Today is a hard day and I just want to get past this and cherish what I have right now.    

Think about it.

IF I were a betting person, I'd gamble that 99% of the people reading this has said or thought; "If I'd only known then what I know now......"  It's perspective on our past that has influenced the present in some way.  We all look back on our past and maybe wish we would have done better in school, kept that friend, finished a degree, worked harder on something, or maybe even wish we would have stuck with a sport.  Something in all of our pasts has made us think "If only I'd...."

 I'm asked, or often told, "I don't know how you do this."  It's a fact that having a special needs child with a diagnosis like Livia's, as parents, we think about death.  Or for me lately, I've thought more about the time that most likely I'll spend here on earth with out her.  This thought paralyzes me with uncertainty.  It also makes me think about LIVing.  The one and only life we've all been given.  How should we spend our days?  What should (or shouldn't) we be fighting or arguing over.  Or for me, my mission, to love fiercely.

I started a summer book club and was only able to attend one gathering.  The book was very good and one part in particular really hit home.  It made me think about that "If I'd only known then what I know now."  Most likely those past choices are things we can't change.  We are reminiscing on past decisions that are done.

The man was a corporate big shot.

Actually, he was bigger than a big shot.  He was president and CEO of a worldwide conglomerate, and all the big shots worked for him.  Year after year he led his business with a focused and determination to succeed at every level and expected that same focus from him employees.  And they did succeed.  High expectations coupled with a driving spirit produced big results.  Financial gain, expansion, innovation.  He spent a lifetime striving for the victory he enjoyed.  Some would have called him a genius.

This very successful man spent the last two weeks of his life in a hospital outside of New York City.  And for those two weeks, the only person who came to see him was his wife, who kept a loving vigil day and night beside his bed.  No cards or flowers came.  No one else called.  No priest or pastor.  Nothing.

In his final days, he said to a nurse, "I spent my life building one of the largest businesses in the world with over 25,000 employees.  But at the end, the only one who is faithful is the woman I ignored for 50 years."

Oh, the ache of such a misspent life.  

"Do you know who I am?"

Angela Thomas

This passage sent an AHA moment straight to my core.  What if we all gained the perspective of our own death bed?  We know that moment will come.  I'm not saying we will all be aware of the exact moment of "our time."  But we know our life will expire.  I certainly do not want to be in that moment, look back, panic, or think "why didn't I."  Or feel "Oh, the ache of such a misspent life." 

I caught myself saying to Finley "don't put off for tomorrow, what can be done today."  I then shook my head and turned back into myself, but really, it's true.  I'm bound and determined to LIV every 24 hours I'm given with purpose.  I'm going to love fiercely, even when I'm tired.  I'm going to do what needs to be done, but sprinkle a few games of hide and seek in between tasks.  I will continue to kiss my girls as often as possible.  I will teach them what they need, and take moments for myself.  I will continue to grow the bond Jake and I have, but remember to take time to laugh together.  I will add meaning to meaningful relationships and strive to be a better friend.  My family will know they are priority.  All of them.

I will never give up hope that Livia will get to LIV a long life.  I pray for that daily.  However long or short we have with her, it is my mission to one day, be able to look back and smile.  To know that we LIVed a life with no regrets. Life that was filled with moments that really mattered.  Our life here on earth is short, for all of us.  I pray that you find your happiness and fill your days with joy.  Most importantly, love fiercely!

I don't believe in coincidence, I believe in God {part 1}

Being educated about Livia's syndrome is something I am confident to say, we are educated.  We have prepared ourselves in knowing what to expect.  Or, what the books say will happen to her.  This knowledge is stored away, and not focused upon.  One of the things that gave me some peace when we received her diagnosis was, we were told that when "changes" occur with Liv, or life altering situations arise, they won't just all of a sudden happen and we will have to make big adjustments.  They will be gradual, and we will be able to be prepared.  I thought I was prepared.  I mean, I knew and had mentally gave myself pep talk after pep talk that we can do this, and we will do what it takes to give her the best care and keep her comfortable and safe.

I must have needed one more pep talk.

Two weeks ago I received a phone call from Livia's school.  I missed the call but heard the voice mail.  I needed to call the school as soon as possible, and that Livia was ok, they just needed to talk.  I called back right away and got her teacher.  She explained to me, calmly, that she was pretty sure she had just witnessed Livia having 2 seizures back to back.  She described them like a "pee shiver" all over her body with about 15 seconds of unresponsiveness afterwards.  Twice.  No pep talk could prepare me to actually hear those words.  The rug was pulled out from under me and my mind started to race.  What is she feeling, how long have these really been going on, is she in pain, is it really true, is this causing faster digression, I need to get to her, I don't know anything about seizures, call the Dr., and pray.  I felt completely out of control and nervous.  The teacher, Thank GOD, was so calm and knew what she was dealing with.  She is educated in special needs and has dealt with seizures.  I trust her 100%.  The school nurse was involved at this time, and she was a previous ER nurse.  I still needed to get my girl.  After our phone call ended I immediately called Livia's geneticist.  I explained what was going on.  I had to wait for a phone call back from them as to what we needed to do.  In the mean time I called Jake and told him what was going on.  He left his school and went and picked Liv up and brought her home.  We just needed to be together.  Calls to family were made.  Liv was fine that afternoon, and thank goodness for a random trip to the grocery store and running into amazing friends that told us to just come over.  The kids played, we were distracted, and they fed us.  It was just what we needed.  To be taken care of.

The next day, Jake and I decided to send Livia to school.  We both felt like she was in better hands with her teacher and school nurse.  They knew seizures better than we did, and knew what to do.  I needed to keep our schedule as routine as possible.  That morning, I heard back from the geneticist that Livia needed to be seen by a neurologist, but can't be seen until 6/17.  Not cool.  That afternoon I got another call from Livia's teacher that she saw 2 more seizures.  This was Thursday, Monday was a holiday.  I knew nothing more was going to get done in regards to getting her seen in Chicago right away.  I had to have faith and just be calm.  Livia's nurse practitioner, here, had given me her personal cell phone.  She told me awhile ago to just call her if I needed anything, or just to talk.  I decided to call her on Friday to tell her what was going on.  She agreed that waiting until 6/17 was uncalled for and she would be making phone calls first thing Tuesday morning.  Sure enough, I heard back from Liv's NP late Tuesday morning and she got an EEG scheduled for Liv on Thursday.  If the EEG showed something, the thought was, her appointment would be moved up.  However, the neurologist in Chicago heard what was going on and called me on Wednesday that he wanted to see Livia after her EEG and he would squeeze us in.  THANK YOU!!!!!!!  We had to keep Livia up until midnight on Wed. evening, and wake her at 4am.  They wanted her sleep deprived for the EEG.  Ideally, they want a child to fall asleep, but Liv did not.  Really not a big deal, she was relaxed and calm during the test.

Sure enough........

The EEG did not show a seizure while we were there, but it did show something called "slowing."  This is what occurs after you have a seizure.  So, with Livia's teacher's description of what she had seen 2 days in a row, and with the "slowing."  The conclusion is that Livia is having seizures.  The neurologist gave me 3 different options for medication.  I was so nervous about this.  2 of the medications cause irritability.  This immediately sent me into a tail spin of emotions, and the tears flowed.  I expressed to him how I didn't want a medication to change who Livia is.  I explained to him that children with MPS are typically not happy kids.  Behavior is usually an issue.  I then, through my tears, told him that Livia does not have this typical MPS behavior.  I told him that Liv is so loving, laid back, and social.  I didn't want that to change.  Then something amazing happened.  He shared a personal story with me that I will forever remember and find so much comfort in.

He started to tear up.

He said "I can see that Livia is a very pleasant child.  I can see your concern about these medications and agree that, by your reaction, these medications are not the right choice.  Let's try this other very safe, low side effect med.  I want to share something with you about a former colleague.  This women was a neurologist that contracted something that changed her cognitive function in a severe way.  She lost the ability to pretty much do anything.  She could not practice medicine anymore and depended heavily on others for care.  She was in attendance at a review of her peers.  She was asked to draw a simple picture of a bicycle.  She could not perform the task.  Here, a women with her Ph.D in physics, could simply not do it.  However, she was still pleasant to be around.  Her soul remained, who she was did not change.  Livia's soul will never change."

Amazing.

I wanted to jump out of my chair and hug him right then and there, but I didn't seeing as this was only our first time meeting.  I did thank him for sharing that story with me.  Learning that your child is having seizures is scary, but receiving an assurance that who she is will always remain, that is peace.

Don't forget to read part 2~           

I don't believe in coincidence, I believe in God {part 2}

My very good friend Ed asked me yesterday if I'd ever heard the saying "coincidence is an insult to God."?  I hadn't, but it makes perfect sense. 

“Coincidence is God's way of remaining anonymous.”
― Albert Einstein

This post is for you, Ed.  God knew exactly what He was doing when He put you in my life.  Thank you for all you do, the guidance you provide, the miles, and the friendship you show me!

God keeps showing up.  He's showing up in friendships, finances, marriage, my kids, and situations.  I'm at a point where I know I have responsibility, but I also believe so much in God' will.  Things happen for a reason.  Here's a great example of God showing up.

We've known for about a year and a half that Livia needs hearing aids.  Every natural history visit we made to the University of Minnesota, they did a test called an ABR (automated brainstem response).  This is the most accurate way of testing hearing, because it's done under anesthesia and they test her brainstem which is where the nerves are that react to sound.  Each visit, the test's results got a little worse.  Hearing aids will help keep her brain stimulated which will improve her quality of life.  I inquired a long time ago with our local audiologist about hearing aids and the cost.  I knew it was going to cost thousands of dollars and I was overwhelmed about this.  After the last visit to MN, I called the audiology dept again to try to get more info (maybe the cost had gone down).  I had to leave a message, and it turned into a phone tag type situation.  To be completely honest, it was me not being diligent returning the calls due to my hesitation about the cost.  Pretty selfish on my part.  The Friday after Livia's neurologist apt in Chicago, I decided to keep her home from school.  It was her last day, anyway, and she needed to catch up on sleep.  She did sleep in, and she ate a late breakfast.  During her breakfast, we were sitting at the table and the house was quiet.  She was so happy and so engaged with me.  We were talking, singing, and just being in the moment together.  All of a sudden, something came over me that I needed to just do everything I could to give her the best life possible.  I truly believe this was God telling me to just go with it, and He will provide.  Right then and there, I picked up the phone and called the audiology dept.  I got right through to the audiology office coordinator and explained who I was and that my daughter is Livia Hubert.  She said "oh yeah, I know you."  Really!  She explained that she was the one I was playing phone tag with, and that I had sent her an email with previous ABR results of Liv's.  In my signature of my emails I include our website and blog.  She had gone to the website and read up on my blog.  She knew about Livia's situation and enjoyed reading this blog.  I thanked her for taking the time to read.  I explained that I really needed to get the process started for hearing aids, and what do I need to do.

God showed up.

She said, "Well, you really couldn't have called at a better time.  One of the Dr.'s in our office is in the process of changing hear aid companies and she has one spot left in a trial, and the children that participate in this trial get FREE hearing aids."   NO WAY........I think my heart stopped for a moment and of course my jaw dropped.  I couldn't believe it.  I had hesitated so much in making that phone call.  Jake would gently remind me that I really needed to call.  He would ask me randomly if I'd ever made that connection with audiology.  I always came up with an excuse.

Proverbs 3:5-6
Trust in the Lord with all your heart
    and lean not on your own understanding; 
 in all your ways submit to him,
    and he will make your paths straight.

God is showing up and I'm gaining so much peace and strength from that.  I don't understand why Livia has such a terrible disorder, but God is showing up in her.  Having Livia has saved my life.  I pray for her healing all the time.  I want so bad to have a conversation with her.  I never ever want her to hurt.  This journey is going to be hard and sad, but because of her, I'm the one getting healed.  I'm LIVing life because of her, and it really is good.

Dig in.

My house is calm and quiet this afternoon.  Finley is asleep on the couch, which rarely happens.  It's been a fun and busy week of birthday celebrations, special days at school, field trips, and warm days to play outside.  Today, we went on a field trip with Livia's class to a zoo in Madison, WI.

Returning home, I carefully placed sleeping Finley on the couch.  My 4 year old curly-girly, quiet and still.  I watched her sleep for a moment.  I immediately thanked Him for this child.  She is everything.  She is my heart.

Livia and I went upstairs, and she pranced into Finley's room.  I had a few things to do, but then joined her on Finley's bed.  This is her favorite place to just be.  I laid down next to her, seeing that she was growing tired.  The angles of our bodies fit perfectly together.  I was starring into her eyes, quietly singing and talking to her.  She says nothing, but stares into my eyes and smiles.  Her eye lids grow heavy and she falls asleep.  I hold my breath as to not move, and quietly take in this moment.  My heart grows heavy, and a lump raises in the back of my throat.  I desperately try to hold the tears back, but they start falling in a steady stream.  I sniffle, and she wakes.  We were in that spot for maybe 10 minutes, but each second felt like a gift.

There is a peace in our home.  "Stress" is not a word I find myself using a lot.  Livia's care has increased, and there are times I feel overwhelmed, but it does not last.  Jake and I have found a balance and are able to support each other in most every situation.  We have both grown, a lot!  This growth and peace is such a comfort.  I'm content, and this feels so good.  I'm not trying to make light of our situation with Livia, I guess what I'm trying to confess is that although I'm still (scared, sad, worried, heart-broken) you insert the adjective, I've come to a place in this journey where I'm comfortable and confident.  More on a personal level. I'm confident in the quality of life I'm giving my family along with the knowledge of what time, sacrifice, love, truth, WILL, hope, and grace really REALLY look like.  A part of me mourn's every day.  I'm sure for the rest of my life, something inside of me will be reminded of this season.  I'm ok with that.  I don't ever want to lose this insight of what really matters.  Being ok with; who I am, what we own, what we don't own, who our (beautiful and wonderful) friends are, feeling proud of my children, family, and being ok with those who have chosen not to be there.  I'll take it.

I'm anchored in; awake and aware that what Livia is teaching me.....all of us......really is simple.  It's to be happy, love each other, and dig in for what we've been given the grace to handle.  I don't have it all figured out, and I pray that the day's I have here on earth are filled with intention and purpose.  I'm in love with these moments.  All of them.  Even the hard one's are filled with promise and knowledge.

Dig in, it's worth it!

My core. My actions.

Love.

"Love is, without a doubt, the basis of everything.  Not some abstract, hard-to-fathom kind of love but the day-to-day kind 

that everyone knows-the kind of love we feel when we look at our spouse and children,

or even our animals.  In its purest and most powerful form,

this love is not jealous or selfish, but unconditional.  This is the reality of realities, the incomprehensibly glorious truth of truths that lives and breathes at the core of everything that exists or that will ever exist,

and no remotely accurate understanding of who and what we are can

be achieved by anyone who does not know it,

and embody it in all of their actions."

"Proof of Heaven"

Eben Alexander, M.D. 

I have a reason to smile, everyday.

I gave myself permission, the other night, to hold a pity party for one.  I was going through a pile of paperwork; sorting junk, mail, file, and other.  I came across a piece of paper that came from our last Minnesota visit.  Jake and I took Livia the first week in April for her last Natural History Study at the University of Minnesota.  This piece of paper came from the developmental portion of the study.  It charted each visit giving Livia "an age of function" in each column.  Gross motor skills, fine motor skills, language, etc. etc.  Each column, each visit, the numbers have declined. These numbers are not what caught my attention.  The piece of paper included her diagnosis age, in months.  Diagnosis: 29 months of age.  This sent me into a downward spiral of sadness mixed with and ounce of anger.  I felt sorry for myself that I only got 29 months of a "typical" family.  29 months before my worst nightmare became forever etched in my soul.  I was angry that Livia's diagnosis included "terminal."  Angry that unbeknownst and unexpectedly, at any moment, looking at my blonde haired beauty, the thought of her funeral flashes through my mind.  It makes me physically nauseated and emotionally beaten.

The news we received in Minnesota was very unwelcome.  We have educated ourselves about MPS and what Liv may face.  Because of this, we are not naive to what we are facing, it's just hearing it out loud.  Knowing that these facts are really true to our child's life.  Hearing that Livia is digressing faster than what we expected, it's horrifying.  

45 months, that's how long we've known these "facts."  Just shy of 4 years.  We've settled into our "typical."  Our life.  In the beginning months, I mourned what I wasn't going to have with Livia.  I dreamed of softball, girl scouts, music lessons, graduation, her wedding, her children.  The majority of these will never happen, and I've excepted that.  Knowing what I'm not going to get to experience with her makes me cherish what I do get to experience with her, and Finley, even more.  With a nightmare of a diagnosis, I've made the decision to grasp a hold of every single moment, every single accomplishment, and every single experience that we get to have together.  Knowing that someday, I will only have days filled with memories, I want to make those memories for the future a comfort.  A reassurance that no matter how many "months" we get with Livia, we smiled through them and we made them incredible.  

Breathe your loves ones in and find a reason to smile today.

Moments that make me smile, that I want to share with you.  xoxoxoxoxo

I see you!

Liv lost her second tooth!  I pulled it, and it made me cry.

What kid doesn't like to jump on a bed?

Ring around the Rosy with Knuffle Bunny

I have some competition!

Instagram Love

   

R-Word, or worse................

I'm sure the majority of people that are reading this know me personally, or know someone in my family, or know a friend of a friend that maybe told you a little something about Liv Life or the Hubert family.  Hopefully you know why I'm writing this blog.  If not, let me give you a very brief explanation and introduce you to Livia.  On 7/8/09, then a mere 2 year old sprite, Livia was diagnosed with a terminal, genetic disorder called Sanfilippo Syndrome.  Most children do not live past their second decade.  She's missing one tiny little enzyme that will result in loss of speech, loss of mobility, seizures, feeding tubes, and one day, take her life. 

The syndrome causes significant neurological symptoms, including severe intellectual disability.  The medical term for that; Mental retardation.

This is Livia

Livia has a unique way of getting people's attention and holding on.  She looks into your soul with happy eyes knowing nothing but joy.  She loves contact.  Holding Livia was what I was created for and long to do everyday.  Livia is a human being full of life.

Early in her diagnosis, my defenses were way up.  When we were out in public, and people would stare at her not quite knowing if something was different with her, I would stare back at them.  No one ever noticed me staring at them, staring at Liv, but I always hoped they would catch my glare that would then confirm their sneaking suspicion  that yes, there is something different about her and OH YEAH, I shouldn't be staring!  I still catch myself doing that at times.  Watching people stare at Livia.  I'm a mama Lion protecting her young, but now I don't have anger behind that stare.  It's more of, come, let me talk to you about special needs and I would love for you to meet Liv.  I guess you could say that I'm comfortable, content, and proud of my girl.

I do and will continue to feel some pain when it comes to Livia and people's response or reaction to her.  It's a natural response to feel some heart ache or disappointment when people's intentions aren't always fueled with love and understanding.  However, I've chosen to let that pain fuel me.  A full tank of determination to change someone's mind about the reality of my life, my love, my Livia.  And really, not just Livia.  Any child or person with a difference, a disability, a story.  We are all here for a reason and everyone matters.

I was on Facebook today and saw something that appalled and disappointed me.  A disclaimer: I, Kelly Hubert, fully admit to having a potty mouth at times and am not naive or prude to today's slang.  One thing remains; that dagger in my heart, searing pain I feel when I see the word "retard" or worse yet, "fucktard" used to describe a person or situation in a derogatory way.  Yes, "fucktard," or fucking retard.  As if "retarded" wasn't enough.  Mental retardation is a medical diagnosis used to describe, at times, a cause of another diagnosis.  Like in our case with Livia's.  Sanfilippo Syndrome is slowly causing more and more of an intellectual disability.  Does this mean she's stupid, worthless, or dumb?  When someone refers to a situation or person as retarded, that is the implication.....the stereotype.

It hurt me, like a dagger to the heart, but I wasn't angry.  I was sad and disappointed.  This person is placing a stereotype on another due to their own misunderstanding and pain.  But in turn, it implies that my daughter's disability makes her less worthy, not of value.  When really, she is everything and more.  I get to experience something magical and unique.  A beautiful life that is so full and rich.  A child that has taught so many how to LIV and make moments matter.  Making every minute worthwhile.

There is a website called "R-word | Spread the word to end the word."  There is a pledge that you can take to help eliminate the derogatory use of the R-word.  It's a resource to help educate others and keep yourself, and your voice, accountable.  Please feel free to share my blog, and the R-word website to educate your friends and family if moved to do so.

"The Heart Of Life"

I hate to see you cry
Lying there in that position
There's things you need to hear
So turn off your tears
And listen

Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But I know the heart of life is good

You know, it's nothing new
Bad news never had good timing
Then, circle of your friends
Will defend the silver lining

Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
                                                                                But I know the heart of life is good

                                                                             Pain throws your heart to the ground
                                                                               Love turns the whole thing around
                                                                               Fear is a friend who's misunderstood
                                                                               But I know the heart of life is good
                                                                            I know it's good 

                                                                            ~John Mayer

Digression Progression

This isn't going to get any easier.......

Never in a million years did I think I would be a Marathon runner.  A multiple 26.2er, at that.  This past weekend, I was privileged to be in Arizona to run my third marathon.  The IMS marathon, to be exact.  My running partner is a snow-bird, so I pretty much invited myself to stay with he and his wife.  I have a secret desire to run a marathon in all 50 states.  It was a beautiful experience that I am so grateful for.  The marathon before this one, I started to cramp really bad around mile 23.  It was so bad that I had no control over my foot.  I worked it out, but it was slow to the end.  This past race, I started to play mind games with myself, expecting the cramp to happen again.  Many times I had to adjust my stride because I could feel the beginning of the cramp, or so I thought.  I relaxed my body and made it through, cramp free.  I felt great all day.  That was an accomplishment.  Training this time of year is a challenge.  To finish this race feeling so good is a confidence booster.  I'm ready for the next one.

Tuesday was a Genetics trip to Lurie's Children Hospital in Chicago.  It was my first visit to the new facility.  Jake took Livia to her last appointment, so she had been there already.  The place is great.  It's new, clean, kid-friendly.  However, it's a genetics appointment.  We see the genetic counselor (Katherine) first.  She asks general questions seeking information on how Livia is doing.  Do we notice changes?  What has changed?  How does she communicate?  I answered the questions with ease.  Keeping it light-hearted.  Katherine even asked about Finley.  I was able to share how proud I was of Finley developing into a special needs advocate.  Katherine left the room and I opened a snack for Livia, instantly remembering one of the biggest changes, but forgot to mention.  When Katherine returned, I explained that we are now having to feed Livia everything.  She hasn't been able to use a utensil for a long time, but finger foods were ok.  She could feed herself.  Since Thanksgiving, Livia has been manipulating the food with her fingers so much that she will drop it before she gets it to her mouth.  When she does get the food to her mouth, she doesn't push it in, again dropping the food.  My dogs were happy getting all the food, but this mommy was not.  Katherine left again, but shortly returning with Dr. Burton.  It's always so nice to see her.  She's professional, yet personal.  She always comments on how pretty Livia is and how great her hair is.  Makes me happy.  Dr. Burton went over a few things, noting the feeding changes.  It was a short list to go over, and a short meeting.  She ended with; "I'm so sorry, but Livia is definitely progressing in the disorder."  It hit me like a ton of bricks.  I'm not in denial about things, but I do think I live most days in a form of denial for survival.  As soon as she said this, I started to cry.  It was uncontrollable,  the kind where you wish you were alone so that you could just get it out.  The lump in my throat was extra big.  Katherine pushed over a box of Kleenex.  I could feel the mood change, and compassion was setting in.  My response was like this, "It's so hard because she is so easy to love.  She's a great kid, and I want to take care of her everyday of my life."

Never in a million years did I think I would have a child with special needs, and a terminal disorder on top of that.  You can never train for something like this.  Unlike running, endurance is not always there.  Endurance (also called Sufferance, Stamina, Resilience) is the ability of an organism to exert itself and remain active for a long period of time, as well as its ability to resist, withstand, recover from, and have immunity to trauma, wounds, or fatigue.  The ability to resist, withstand, recover from, and have immunity to trauma, wounds, or fatigue.  Will I ever be able to recover or resist from this traumatic wound of heart ache?  This fatigue of worry?  An immunity from the inevitable?

I'm thankful for my everyday endurance of a love so strong that helps to swallow this ever increasing bitch of a pill.  I'm thankful to be at a certain peace with, to not feel like I'm grabbing at a dangling rope in front of my face, for a cure.  My hope is there, but it's different.  I'm more concerned with salvation and a complete healing for Livia in heaven.  I'm concerned and focused on getting myself and my family there, too. (Forgive me for saying bitch!)  My running is my therapy.  When my mind starts playing tricks on me around mile 23, I find a focus point, usually thinking about Livia, Finley, Jayden, Brooklyn, and all our other MPS kids, and I go.  Just like after hearing Dr. Burton's words.  My mind goes places that no parent's mind should go.  I regain my focus, and I go.  I focus on today and breath her in just a little more.

She's Golden!

The memory of that very first moment I laid eyes on my Livia Grace is still so vivid.  I can close my eyes and be back in that OR, anxiously awaiting that first cry.  The moment is still slow motion in my mind.  Jake is by my side, nervously wanting to just jump over that curtain to watch her arrival.  Right before I saw her, I got extremely nauseous.  My very good friend, Greg, was the CRNA for her delivery.  I hand picked him, of course.  A perk of being a surgical tech.  He took away my nausea with an alcohol wipe.  I'll never forget taking a deep breath of that and instantly feeling better.  He whispered to me that it would only be a few more minutes.  Thank you Greg, for being in these memories!  They announced that she was here.  No cry.  Then, in a beautiful moment, they lifted her over that blue sheet and there she was.  Feet crossed, hands under her chin, red full lips, and a head full of dark dark hair.  She was perfect.  It wasn't until she was placed in the warmer that I heard her cry.  I love this memory.  I pray that it will remain this vivid until my last day.

Today is Livia's Golden birthday.  6 years old on the 6th of February.  I CAN NOT believe she is 6.  Time really does fly by when you're having fun.  Liv's birthday is always bittersweet.  It's a day to celebrate her life.  She's ours, she's here.  However, it's also a reminder that one more year has passed, and when she's only got so few here on earth, well, it's a hard piece of birthday cake to swallow.  Jake stayed home this morning to get Livia out of bed and spend some time with her.  Before she was out of bed, we had some time together.  I had a hard day yesterday.  Reflecting on that reality of one more year passed.  Jake is having a hard day today.  He said, we are robbed of the birthday celebration for Livia.  Of course it's a day to celebrate, but it's a time we don't ever want to come around.  365 days goes by way too fast.  I love how Jake and I can balance each other out.  He lifts me up, and in turn I try to lift him up when he is down.  We've become really really good at just looking at this day.  Living in the present is our day to day motto.  If we don't, it gets ugly.  Tomorrow is never promised, so today we will celebrate that we get to celebrate another year with Liv.  

 My Goldie Locks, Ray of Sunshine girl.  Happy Golden birthday to you.  Your beauty and love is the greatest gift I've ever been given.  To know that God trusted me enough to take care of you is something I don't take lightly.  Every day that we get to keep you in our presence is a day to celebrate.  Your life is a celebration.  This year has been a great year.  Thank you for being so loving and sweet.  Thank you for making me a better person.  May year 6 be peaceful and every single 365th day be a celebration of you and our family.

First tooth lost!

You are a warm summer day!

braids, pj's, and smiles.  So you!

Sister dress-up

Make~A~Wish

Snuggles w mommy!

2/6/13 proud papa and bday girl!

You make winter look good, sweet girl!

Proud Mommy

Wednesday evenings I teach Body Pump.  Some evenings Jake is home in time to take the girls so that I don't have to take them with me.  My class is from 5:30pm-6:30pm, so I have to take the girls dinner if they go with me.  Last night, I took them with me.  Pretty usual. 

Livia is always excited to go anywhere.  I firmly believe she knows what we are doing.  She gets so happy when we pull up to church, the Y, school, any place that is fun to her.  Last night was no exception.  She bolted right into the drop-in (or now called stay-n-play).  Finley took her coat off and hung it up and went to playing.  I was signing the girls in when time just stood still as I heard "SHE's STUPID."  I just knew, that someone called Livia stupid.  Before I could say anything or really find out what happened, Finley stood up with tears in her eyes and said "My sister IS NOT STUPID, and you don't call anyone stupid."  She then pointed at this girl and ratted her out like I didn't hear what had been said.  I looked at this girl(who looked to be 7) and said "Calling someone stupid is completely disrespectful and you don't call anyone that."  My heart rate had spiked, my blood was boiling, and I wanted to cry.  I had to just walk out.  The drop in staff was placing the girl in time-out and told me they would take care of the situation.  Liv was laughing and Finley had moved on. 

My mind was racing and I was really upset.  I kept telling myself, she's a kid, she's a kid, she's a kid, she doesn't know any better.  But that's not acceptable to me.  I was able to teach my class, with a few mistakes in the warm-up.  It ended up being a pretty intense class because I was worked up from the start.  When I picked the girls up, the staff had explained to me that this little girl said she saw Livia climb on a table and she said she(Liv) was stupid for that.  The staff didn't think this girl knew of Livia's difference.  Back to calming myself down.  She's just a kid is no excuse.  My 3 year old knew better, which by the way, I am so PROUD of Finley Faith.  So, this girl didn't know Liv had special needs.  Then is it bullying?  Why would she say "she's stupid?"  I then just felt bad for this girl because she probably has been told she's stupid for doing something harmless, like climbing on a table.  Stupid?  It may be dangerous, or something you shouldn't do, but she's stupid?  That's not how I'd describe someone climbing on a table.  My point is that I feel like tolerance and acceptance are so important.  Teaching our youth that everyone is different, and everyone deserves to be respected and loved.  Not everyone has to be your BFF.  I'm not saying you even have to like everyone, but it's not ok to belittle, degrade, or make fun of anyone.  If you don't have something nice to say, don't say anything. 

I'm proud that my lil 3 year old will stand up for her sister that can't stand up for herself.  After talking with the drop in staff a little further, I explained to them that I have never seen Finely react in this way.  I didn't even think she knew what "stupid" was.  They then told me that Finley has stood up for Livia many times.  Proud momma moment, indeed.  I believe that even if Liv was a typical child, Jake and I would have instilled the value of loving everyone and accepting differences.  Finley has been forced to learn this value even more so.  We push the fact that because Livia is different, and needs more time and patience, we still love her and take care of her.  We include Finley in some of Livia's care-taking, when Finley wants to be involved.  Finley has very much embraced her sister and even though this is all Finley has known, she knows more than what Jake and I realize.  I dread the day when I'm going to have to tell Finley more, but I'm so thankful for the young, strong lady Finley is developing into.  She will be an advocate. 

Livia is teaching all of us to love more.  I'm so thankful for that.  I'm so proud of my girls and what they are teaching all of us. 

Today I pray that our youth will be more tolerant and educated about how different we all are.  It's so simple and something I'm sure we know, but how do we really put it into practice?