Protecting my cubs

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

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

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

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

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.