Light

2 weeks from today will be one year.  One year.  I can't even wrap my head around the fact that it's been one year.  

A year of....

missing

confusion

seeking

ache

pain

hurt

tears

isolation

But, also a year of....

growth

love

peace

gratitude

loss of fear

prayer

awareness

learning

patience

The days surrounding Livia's passing were extremely hot.  I can remember at one point sitting on my closet floor struggling to know what to wear.  I wanted to be comfy in leggings, a t-shirt, and a sweater.  I wanted the fall weather.  I wanted the cool, crisp September air.  Instead, it was sweltering outside.  I was uncomfortable.  The day she died, the sun was out bright as ever.  It was hot.  I remember walking her body outside.  Barefoot; stinging from the hot blacktop.  We watched the car pull out of our drive with her body, and all we had left was the sun hitting our skin.  The sun was now our comfort.  Even this summer, Jake and I would sit in the heat and both remark how we used to hate the heat, and now it feels like a familiar friend sitting with us.  The next few days after she died, we'd notice the sky.  It wasn't like we hadn't seen the vibrant, painted sky before, but now it was different.  We'd notice the sky and feel a sense of calm.  Like it was being painted just for us.  It was a comfort, and a reminder of her.  Maybe it's because of the way Livia painted our life with her own light.  We'd always sing to her:

You are my sunshine, my only sunshine
You make me happy when skies are gray
You'll never know dear, how much I love you
Please don't take my sunshine away

It's funny because when we'd sing this song to her when she was really little, she'd cry.  I think she knew there was a sadness to this song.  It wasn't a full on cry, but a quiver in her lip or short whimper.  When I looked up this song, the first verse of the song is this:

The other night dear, as I lay sleeping

I dreamed I held you in my arms

But when I awoke, dear, I was mistaken

So I bowed my head and I cried

I have not dreamt of Livia this year.  I've hardly dreamt at all.  I've always been a literal dreamer, and have remembered my dreams.  All I've wanted is to have a dream of her.  One that feels so real.  One that we have a conversation.  One that she tells me she's ok.  One that she assures me that when we see the vivid painted sky, that it is really her giving us a sign.  I know it will come.  I hope it comes.  One of my friends told me that I haven't dreamt of her yet because I spend so much of my awake time thinking of her, that it's my mind's opportunity to rest.  I liked that.  It's maybe true.

We continued to sing this song to Liv throughout the rest of her life.  She really is our sunshine.  As is Finley.  Our girls bring so much light into our lives.

The September skies have been showing up lately.  I grab my camera almost every sunrise and sunset to freeze the fleeting colors.  I especially love the quiet mornings when the colors catch me off guard.  It's like a nice surprise.  It's like a familiar friend showing up to say hi! 

On September 23rd, we will be launching lanterns into the September sky.  Our hope is that you will join us.  We'd love to look out over our community and see the sky light up as we remember our girl who lit up our lives. (here are some environmentally safe lanterns that you can write a message on. LANTERNS) 

The lists I put in the beginning; you can't have one without the other.  That pain and miss that we feel because she's no longer physically with us goes with the gratitude that we had her.  The peace of knowing her broken body is no longer holding her back is comfort, but it will never stop the hot tears from coming.  It's resting in knowing that both are ok.  Both will be forever.  It will always take work. 

Our "why"

I remember the exact moment I saw this sonogram photo.  I remember the waiting room, and the exact spot I was sitting.  It was one month before she would arrive.  I remember the excitement and anticipation of actually holding her in my arms.  Seeing what she would look like.  I was ready.  This sonogram photo took my breath away.  It was the first time I really felt like I could see her face.  It was before the time 3-D sonograms were offered regularly.  I knew in that waiting room, at that exact moment that her name would be Livia.  There was no doubt in my mind.  Little did I know at that moment how fitting her name really would be.

The reason we started the Liv Life Foundation was to do something.  We couldn't sit by and hope that a cure would be found by not trying ourselves.  Our hope was that maybe, just maybe that one dollar we raised would be the dollar to find a cure.  It was our hope.  It was fitting to name the foundation Liv Life.  We called her Liv, and our mission was to make the best of what we had and LIV life; to hopefully save her life so that she could LIV.  For those of you that know the rest of the story, you know that it just wasn't in the cards for a cure to save her.  We gave it our best effort with the foundation, but what I know for sure is that LIVing life with her was the cure for so much, and for so many.

So here we are with a foundation still in place with her name all over it.  Livia means "life."  To us, Liv Life means to enjoy, to be in community, to love other's, to inspire through generosity and kindness.  It means to honor our days and be intentional with the time we have.  Livia taught us that.  There were days that it was hard to recognize, and there were days that were harder than other's to really fulfill that intention.  Being a caregiver to another person presents challenges, both mentally and physically.  Having a child, or anyone with a terminal diagnosis is stressful.  LIVing daily with the time commitment as well as all of the "things" (equipment and supplies) you must have in order to LIV, doesn't always come easily.  Most of the equipment and supplies that it takes for a typically developing child can be found at Target or on a quick run to the store of your choice.  Many specialized pieces of equipment that it takes for growing and changing children that are ultimately declining, takes a lot of work to find and to obtain.  We were very fortunate to have great insurance that helped us have an amazing palliative and hospice team, but not everyone has this.  Not only is it access, it's rules and guidelines that many insurance companies require that takes a lot of phone calls, money, denials, referrals, appeals, etc. to even obtain a piece of equipment that a declining child needs in order to provide comfort and ease in their everyday life. 

This is now our "why."  Why we want Liv Life to continue to grow, and how we want to make a difference.  We will continue to support research in the hopes that a cure will be found.  We will not ignore that.  However, it's time to make some changes within our foundation to help give other families an opportunity to LIV their days with their children just a little less stressful.  To give them back just a little more intentional time.  Our desire is to get into the community to help families with a child with a terminal diagnosis obtain a need in order to simply LIV.  We are excited that this is already happening.  We have made a connection with a local family that has been trying to obtain a car seat for their son since December.  Liv Life Foundation has purchased their car seat and will be presenting it to them at our Winery Fundraiser on June 9th at DC Estate Winery.

Her name was put on my heart at the exact moment I saw that sonogram photo.  That name will now carry on through this foundation that will, in turn, help others to LIV.  We can be so proud of our daughter for that.

For more information on the winery event and to purchase tickets to attend, please follow this link. 

Popping a Cork for a Cure

Declutter

The end of this week will mark 6 months since I touched, held, smelled, or kissed my precious daughter.  These 6 months have gone by so fast, and yet remembering the last moment that my lips touched her skin feels like forever ago.  Her physical presence is missed more than I have words for, but I know where she is.  I feel her with me, and around me.  It brings me great peace, but can also bring me into heavy, heavy missing.  It can take me to a place that looks like avoidance, isolation, unproductive busy-ness, and mindless distractions.  All of these a push-back from what I really need to be doing in order to heal.

I attended my second 'Restoring A Mother's Heart' conference this past weekend.  It was an absolute gift to be welcomed into such a sacred space filled with transparency, vulnerability, raw emotion, and so so so much love.  Attending this second time was very different than the first.  I had a much different take away and learned more about myself, and tools that I need to implement into my life to help with the healing process.  It wasn't easy to learn some of these "ah-ha" moments, but extremely necessary to acknowledge and start implementing the work towards.

Every presenter brought such wisdom and guidance at this retreat.  Even the mom's attending were (ARE) my teachers.  Their children are teaching me!  One presenter in particular, who has also lost a daughter, has the beautiful gift of interior design.  She talked to us about decluttering our homes and spaces in order to create an environment that we feel safe and comfortable in.  Her daughter's room is still her daughter's room in the house.  She tried to turn it into a sewing room at one time, but it didn't feel right.  This session resonated with me for many reasons.  Days before the retreat, I found myself having a photo shoot with a pile of laundry.  A few year's ago we moved Livia downstairs.  We created a beautiful bedroom for her, as well as remodeled a bathroom so that all of her care would be on the first level of our home.  I still kept her upstairs room hers; including keeping her clothes in her dresser.  Her window seat/toy box was an easy place to set her piles of clean folded laundry if I didn't have time to put them away.  She had a pile on her window seat from before she died.  I couldn't put them away.  It was as if seeing those piles gave me a sense of her presence.  I wasn't ready until I was ready.  I organized the piles, and each item of clothing I touched brought me a memory, an ache, and a huge sense of her.  It hurt, but I was ready.  A few pieces of Liv's clothing were going to go into Finley's dresser.  I love seeing Finley in Livia's clothes.  The majority of the clothes went right back into Livia's dresser.  I didn't have to get rid of them, but I was done looking at them every time I passed her room.  I was ready to declutter.  Not erase, just reorganize.  The same theme of decluttering my heart rings true.  This weekend, I discovered things about myself that need reorganized in order to allow healing.  Healing, never forgetting or erasing.  To declutter means "to remove unnecessary items from."  For me, this means removing unnecessary shame and guilt that I carry with me which creates a dialogue of doubt.  I think that when you go through trauma or a situation that changes your life, there's nothing you can do to ever forget it.  There may even be shame or blame attached to the situation, but what matters is how we declutter and reorganize the emotions attached.  

Eckhart Tolle said “I am not my thoughts, emotions, sense perceptions, and experiences. I am not the content of my life. I am Life. I am the space in which all things happen. I am consciousness. I am the Now. I Am.”

My #1 strength finder is Developer.  Basically, what that means is that I recognize and relay the potential in others.  My "ah-ha" take away is that because I haven't decluttered my own heart, I couldn't even recognize my own potential.  That the dialogue I had created has been holding me back from healing, and from pursuing.  I'm tired of living my life this way.  I'm tired of keeping to myself in order to protect myself.  Livia is Jake + Kelly.  Livia is a huge part of me.  By reorganizing and believing in what I'm capable of, Livia will LIV on through what I do.  What I say.  She will LIV when I walk out of my home.  People will see her when they meet me.  I could see how much Livia had to offer.  It's time to recognize the same for myself.

Shift

I've stopped counting the days.  Counting from the moment that I watched her exhale her last breathe.  When I physically felt her heart stop under my right palm.  From the day that my existence as I'd known it for the last 10.5 years shifted.

Since that shift; confusion has set in.  Exhaustion and isolation are felt more than ever.  Grief is now a word I can use.  Some days, breathing is hard.  I find times when I whisper over and over: I love you, I love you, I love you.  As if she can hear it in my thoughts.  Or maybe, it's my internal alarm clock to remember.  To think of her.

Since that shift; I'm functioning.  Love still radiates at the center of everything.  Maybe more so than ever.  The recognition of time is at the forefront.  I seek joy.  Feeling joy in the simplicity of a deep breath.  Satisfaction in a yoga class.  Giving myself permission more than I ever have in my life.  To say yes, to say no.  Freedom.  Embracing and mending my family.  Speaking truth, and learning.  The good stuff.

Since that shift; I've wondered.  Wondered what people are thinking of me.  Wondering if they see me.  If they know.  Wondering who will talk about her next.  Loving when they do.  Wondering how other hearts around me are doing.  But, not always having the energy to ask myself.  Wondering about this ache that creeps in unexpected and unannounced.  Wondering if this mind wandering will always be a road block.

Since that shift; the miss gets stronger and stronger, but that's ok.  You see, loving her, calling her mine is something I will never ever regret.  That miss fuels me, even when it hurts like hell.  That miss is a feeling created by the shift.  The coupling of then and now.  The braid of love, grief, and LIVing.

4 months.  

Family update: Jake is pursuing his doctorate in education.  His goal is to become a Superintendent.  I'm inspired and motivated by him.  We continue to have a balance within our relationship that carries us through this shift.  New Year's was harder than Christmas for both of us.  I think it's been the first time through all of this that we were both in that low place at the same time.  

Finley is doing really really great.  For a time after Livia passed, she missed a lot of time in the classroom.  SIDE NOTE: our school distract has been an absolutely phenomenal support for Finley.  We can not thank her teachers, social workers, and friends for being such a safe and caring place for Finley.  Finley had a great Christmas break surrounded by many people who love her.  Getting back into the routine of activities has been good for all of us.  Finley is excelling and loving her dance classes.  She joined 3rd grade choir.  She brought home all A's and B's on her report card.  She is my energy.  I'm more in love with her today than I ever have been.  She is a daily gratitude of mine.  She sets a good example with her beliefs and prayers.  When she says Livia's name, even with tears, it warms me.

Everyday is different for me.  I have the most understanding and caring friends.  People who are patient with me, and don't push me.  I have friends that continue to hold my hand through this.  People who text, and ask.  One friend in particular has been writing me letters about once a month.  It was more frequent right after Liv passed, but they are still showing up.  I treasure her words, care, and love.  It's a unique gift with no expectation back from me.  MNM, if you are reading this, thank you.  I love your heart.  I'm back to teaching at the Y 3 days a week.  As I mentioned earlier, I'm taking yoga as much as I can fit it in.  There's something about the class, the instructor, and the mental clarity I receive when I'm in the class.  Paying attention to my body, and my heart has been top priority.  Meditation is the best time.  It's a time that I sense Livia around me the most.  Probably because it's forced quiet time that we all need!  I'm pursuing a business that I'm incredibly passionate about.  However, I'm my worst enemy when it comes to putting myself out there.  Remember that mental road block I mentioned.  Not only is that block present, a big ole' "caution sign" keeps flashing in front of me.  No other reason beside my own self doubt, but that's another topic for another time.

Thank you for your continued love and support of my family.  We are so blessed to be surrounded by a wonderful community of well intentioned people.  Even those that live far from here; your love is a comfort.

One more update....We are hopeful and driven by the prospects of continuing and shifting the Liv Life Foundation.  We have new ideas and hopes for the foundation.  Thank you for your continued interest and support with Liv Life.