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.