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?