What's in a word?

What's in a word?  To me, it's everything.  What's in silence?  It's heartbreak.

Having a daughter with special needs puts us in the world of special needs.  Online groups, acquaintances with children of the same diagnosis, etc.  So, through these groups and friends re-posting different articles, I read a lot of them.  I thought about posting some of the articles, but chose not to.  If you Google, "what not to say to a parent of a special needs child," you will see a big selection of these articles.  A lot of these get posted, and re posted.  I even saw an article titled "What not to say to a parent that has lost a child."  I find myself reading these articles, agreeing with some of the points, but mostly reading them with a pit in my stomach.  I feel that these articles are the yellow caution tape around an already isolated situation.

I've not had a lot of experience with people saying rude things to me.  I've never had someone say something completely inappropriate that I needed to put a defense up.  I've had things said to me that in that very instant a wave of nausea comes over me and I think; "REALLY?"  However, those statements that sit a little uneasy with me, I've realized, are meant with good intentions.  It's taken me awhile to realize this, and I've had to swallow a little pride, but at least they are saying something.  These lists that I mentioned previously give the people reading them another reason to look away, or tread even more cautiously around me and my family.  I don't want that.  I don't want people to feel like talking to me or about special needs has to be so careful as to what to say.  I feel like people already don't know what to say to me, so they better say nothing.  That's even worse!

I have such a love hate relationship with Facebook.  I love how easily it is to catch up with someone.  I like that I can see pictures of my nieces and nephews that I don't see as often as I like.  I like the resource of meeting others and having the accessibility of asking another MPS parent a question.  What I hate about "the book" is how easily my feelings get hurt from the non response of people who I thought would be there for support.  It's petty and Jr. High-ish, but it's true.  When I can see what other people are posting and liking about other things, and I never get a "hey," "hi," "how is Livia?"  It hurts my feelings.  It's not just FB, it's life.  Once again, it's taken time and tears, but I've learned that putting my expectations on other's only leads to heart ache and loneliness.  What I want more than anything, is for people to know that we are approachable.  We are still the same people we were before our daughter received her diagnosis.  If anything, we are better more loving people.  You don't know what to say to me?  That's ok.  Sometimes I don't know what to say to other's going through the exact same thing we are.  But, say something.  Silence, even if not intentional, feels insensitive.  In this day of social media, texting, emailing, easiness......let someone know you care.  I'm guilty too.  But, because I've been on the receiving end of silence, and know how it feels,  I've been more intentional with others.  Even when I can't find the words, I find "xoxoxoxo."  Or, "I'm praying for you."  Or "Hi....I miss you." 

The purpose of this post is to not make anyone feel bad.  It's to let people know that you can talk to me, ask me questions, but mostly I want you in our life.  One day, Livia won't be here.  One day, memories will be all we have.  I want that time to be filled with stories and love.  I don't want it to be regret of not getting to know her, or feeling sorry for not reaching out to us.  I don't want things.  I want relationship.  More than ever, I know how important this is.  So here's a challenge.  Instead of checking your FB feed, twitter account, or take a scroll through Instagram; send someone you've been meaning to talk to or check in on a quick "xoxo" or "I miss you."  See what kind of door open's, and I pray it's a relationship bonding/mending door!    

To those of you that are constantly loving and encouraging my family.....thank you!  To the texts, cards, emails, FB chats that I get daily from the people that just check in......thank you!  We could NOT get through this journey with Livia without you.  XOXOXOXOXO  

Seven

On this day, seven years ago, I became a mother.  That snowy, beautiful day is etched into my brain.  I can remember so many details that I strive to hold on to.  It was a day that I had thought about for the majority of my then, 26 years.  Being a mom was something I knew I wanted.  Motherhood, to me, was from the pages of a storybook.  I had my ideas, I had my dreams.  I thought I knew what being a mom would be like.  Never could I have been prepared for this extraordinary, unordinary life.  No storybooks tell a story like ours.  In a way, I'm writing it for you.  To explain that although this bittersweet love story will have a sad ending, this life that has been created because of you will be unforgettable and unique.  It is more beautiful and real than I could have ever dreamed.  This, Livia Grace, is for you.

To wish you a sincere Happy Birthday, is really hard for me.  I do, though, because you deserve to be celebrated every single day of your life.  However, this one day marks another year gone.  It's a symbol of time.  When I know time is limited with you, I want to ignore it and take you back to that beautiful day in February when we first met.  The days of constant embrace, getting to know every single line of your body.  Falling in love hard and fast.  Those days were perfect.  I was captivated by your beauty that very first instant I saw you.  I had no idea at that moment how your beauty and your quiet being would shape me as a person.  How being your mom would completely re-write what I thought life should be like.  That I would find God, Grace, and strength during a time that my endurance would be tested daily.  You, my sweet girl, tell a story of most vivid and pure life.  

Your innocence and sweet demeanor are the main character. 

The exposition of your story was that first day we met.

  

The rising action was the time when you were at your best.  Your voice.....how I long to hear that sweet voice.

  

The climax is now.  It's hard to face that we are in this stage of your life.  However, the climax of a story is always the best.  It's the time in a story or movie that we never want to end.  It's the time (or point in a story) that we always think about when it's over.  Here and now, this birthday we will celebrate.

 The falling action and resolution are yet to come, and frankly I pray it never comes.  Until then, we will keep reading your story and taking close notice of the lessons learned through your most beautiful life.

Happy 7th birthday, Livi~Loo!  May you know always and forever how grateful I am to call you mine.  I'd pick YOU, every time! 

Choose joy {stop complaining.....you may miss your ride}

I heard a news report yesterday while listening to KLove radio.  The report was on a group of people who volunteered to be in a sleep study.  One group slept much better than another group.  Scientists took both groups, separately, to give them memory tests.  Before the tests were administered, the group that was "sleepy" was convinced by the scientists that they had a quality night sleep.  The sleepy group actually performed better on the tests because they were coached and convinced that they slept great.  They were in a mindset that they weren't tired.  The news report then went on to say that by simply convincing our self towards the positive of a situation can be all we really need.  Negativism, pessimism, and constant complaining can be detrimental to our lives.  These "qualities" rob us of joy. 

For some reason, this simple idea kept playing over and over in my mind.  I am an eternal optimist.  Or at least I like to think that way about myself.  I do believe that I have trained myself to be this way.  I like to see the best in everyone, avoiding conflict at all costs.  Daily, I choose to get out of bed and face the reality that my child is slowly losing her abilities.  My husband, before he goes to work every day, goes into her room to listen that she is indeed, still breathing.  Yet, Jake and I have made the choice that we are not going to let this devastatingly scary and tragic situation rob us of our joy. 

While we were in Disney, I loved people watching!  So much happiness and joy all around.  Lots of people to watch, and lots of situations going on.  I overheard a lot of conversations.  It's hard not to, especially when you are on the monorail or a bus.  One particular, not so happy situation relates a lot to this post.  We had to catch a bus to one of the parks.  The monorail was down, so this was our only option.  People were not happy about this.  The convenience of the monorail is why some people choose to stay at certain resorts.  So we were waiting for the bus, and there was another family on the bench beside us.  The husband was in such a tiffy about the monorail being down, and was reaming the Disney attendant working the stop.  She was kindly explaining to him why the monorail was down, but she assured him they had extra buses working and he would get to the park.  He continued to voice his annoyances, and kept making me feel very uncomfortable and I had nothing to do with the conversation.  His blood pressure was up, his wife was embarrassed, and the attendant was at a loss.  The constant complaining got him nowhere and made the situation worse than it needed to be.  It probably set the tone for their entire day.  We overheard that they were going to the same park we were.  We saw our bus, proceeded to board the bus, looked back and there was the man still sitting on the bench {complaining} and they missed their ride.   

Disappointment is bound to happen.  Tragedy and unwelcome circumstances are a part of life.  I'm not saying people shouldn't voice how they are feeling or give an opinion.  However, I am saying there are things we can't change that are out of our hands.  We can however, manage our feelings in a constructive manner. Do I want this life for Livia, absolutely NOT.  It hurts, everyday it hurts, but complaining about it will only set the tone for misery.  The insight to life that we've been given along with Livia's diagnosis has made this mental statement to me that I feel I need to share with you; life is short, family is everything, joy is all around us but you must choose to want that joy in your life.  When you are able to choose joy, you will be able to LIV moments more fully and with more vibrant life than you could ever imagine.  

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.” 

― Rumi   

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” 

― Thích Nhất Hạnh

Protecting my cubs

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

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

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

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

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.