Saturday, October 1, 2016

An honest walk

His eyes welled with tears as he said last night, "babe, you haven't written a blog in a long time.  I think I need your words.  I think other people need your words.  Please write."


It's been almost 6 months.  I currently have 4 unpublished blogs that I've cowered to publish.


"Truth is harder than a lie
The dark seems safer than the light
And everyone has a heart that loves to hide
I'm a mess and so are you
We've built walls nobody can get through
Yeah, it may be hard, but the best thing we could ever do, ever do

Bring your brokenness, and I'll bring mine
'Cause love can heal what hurt divides
And mercy's waiting on the other side
If we're honest" - Francesca Battistelli "If we're honest"


Man, have I been good at building walls.  It's easier, it's safe, and I'm not disappointed when I guard my own heart.  Truth is harder than a lie.  And my truth......I'm scared.  But, hiding has isolated me to what I need most.  Truth.  Love.  Acceptance.  Grace.  Oh, Grace.  How I need to allow myself some Grace.  Grace to be true to myself.  Grace to love what I love.  Grace to be who I truly am.  Because who I truly am is a child of God.  A human that is flawed, and has feelings.


Time is slipping away.  There are no more smiles.  No more laughs.  We're starting to see that simply eating oatmeal is becoming to much for her to handle.  This summer, we moved her bed downstairs into the Make a Wish room that was once a safe play room for her.  There's now a walk in shower in the remodeled once half bath just down the hall from her now bed room.  All things that we knew would happen, have happened.  I'm struggling to carry her.  Jake at times, too.  Simply sitting up on her own is an indication of a good day.  Her eyes won't always track my finger.  I've uttered the word "neurological decline" more than ever in the last couple weeks.  Friends' children are dying.  My facebook is flooded with declining childen and hurting hearts of parents who have had to say good-bye to their kid(s).  It's hard not to wonder every night, as we say goodnight, if this will be the last.  Every. Single. Night.


This is hard honesty.


I'm asked a lot how things are going.  Maybe specifically about Livia, maybe more about me.  I have a stock answer of "today is a good day."  Even if it's not.  Situations may not be appropriate to pour my heart out, or maybe I can gauge how I need to answer the question by who's asking it.  But, THANK YOU, to those that continue to ask over and over.  I have a few people that really dig deep with their questions.  They ask hard things.  I've never loved that, but man do I now.  Surface conversations about the weather aren't bad, but I don't want to live on the surface any more.  Every single moment matters.  Don't put off for tomorrow what could be done today.  It's not cliche'.  It's true.


I've been thinking a lot lately about Jesus and his walk to the cross.  He was walking with a slab of wood on his back, being beaten along the way.  Crowds of people cheering, throwing stones, maybe even spitting at Him.  There were a few walking along side him; crying, praying, pleading for Him to be saved.  Some people that loved him watched at a distance.  They loved Him, but they were afraid and just kept their distance.  Can you imagine this moment?  Can you imagine enduring that torture, ridicule, and pain?  I can only imagine kicking, screaming, and pleading for my life if it were me.  Jesus, though, He walked....just walked to the cross.  He didn't throw a tantrum or scream back at those screaming at Him.  He knew what had to be done.


I want to be like Jesus in my life.  Jake, Finley, our family & friends and I are facing a hardship.  We are witnessing Livia's decline.  I literally feel my heart breaking every day.  Honestly, more often than not, when I'm asked how I'm doing, my answer should be....not good.  I'm scared, I'm sad, and I'm anxious.  There's absolutely nothing wrong with saying that I'm scared.  I want to walk through my life like Jesus walked to the cross.  I don't want to kick and scream and throw a fit.  I want to do what needs to be done.  I want to honor Livia, and not be afraid to say that I'm scared.  I don't want to hide her.  She's beautiful, strong, and it's my duty to share her with anyone that's willing to have her.  I need to place Sanfilippo Syndrome at the foot of the cross.  Not putting it there, not tearing down these walls I've built around me, they are stealing the good moments.


I know Livia may die before me.  The thought of her not in my arms is unbearable.  But, I have her.  I've always had her, and man, am I lucky to be her mom.  Her name, Livia Grace, has been so fitting for so many reasons.  I LIV with intention because she has taught me what's really really important.  I want to LIV the rest of my life to honor her's.  Grace.....what a beautiful thing Grace is if we allow ourselves to receive it.
And the God of all grace,
who called you to his eternal glory in Christ,
after you have suffered a little while,
will himself restore you and make you strong,
firm and steadfast.
1 Peter 5:10

But he said to me,
"My grace is sufficient for you, for my power is made perfect in weakness."
Therefore I will boast all the more gladly about my weaknesses,
so that Christ's power may rest on me.
2 Corinthians 12:9

Grace to......allow my weakness to show when I'm scared.

Grace to......say out loud that I need help.

Grace and keep trying.

Grace to......say I'm sorry.

Grace to......fight an addiction

Grace to......walk away from an abusive relationship.

Grace to......fight for a marriage.


Placing whatever at the foot of the cross will open the door to Grace.  It will indeed make you strong, firm, and steadfast.  I want to encourage you, that if you feel weak, beaten down by life or a circumstance, allow yourself to experience the emotions that go along with your situation.  That's grace.  However, keep in mind how Jesus walked to the cross.  Let that kind of character shine through in how you react, how you speak, and how you treat others.

Friday, April 15, 2016

What's important

I've neglected writing for a long time.  Not because I haven't wanted too, but it just hasn't felt right.  I've been taking a lot of pictures lately.  For myself, and for others.  It feels like it's mine.  I'm comfortable, I'm learning and growing, I'm sharing, and I feel inspired by the art of photography.  It's important to important.
"What's important."  I've been hearing this whisper in my mind over and over and over again this winter.  Oh, this loooong winter.  I opened my Bible today to look up the word "important."  My Bible has a dictionary in the back.  I love it, and use it all the time.  It doesn't have as many words listed as Webster, but it has significant words.  It gives a brief definition, but then lists scripture that correlates.  "Important" was not listed.  I then thought, how about the word "priority."  Nope, not there.  I then went to responsibility.  Not quite, but responsible was listed.  Close enough.  I was then lead to look up Galatians.  I flipped to the front to look up what page GAL starts on.  1980....the year I was born.  I think I'm on the right track!   GAL 6; We Harvest What We Plant.  I highly recommend reading this.

A good friend once told me that there will never be enough art in this world.  There can never be enough good books to read, good music to listen too, stories to be told, or paintings to be hung.  She was right.  Hearing a good new song can ignite a new passion.  Reading a great story can refresh your soul.  That doesn't mean that your old favorites have to go by the way side.  Art is ever changing, expanding, and we all need it.  Just like ourselves.  Growing as people requires recognizing what is most important in our own life.  But, it's also recognizing others around us.  A well balanced "taking care" of what's most important.  

In GAL 6, it talks about not comparing ourselves to others.  Also, not boasting about our good works.  I've always believed the latter.  However, the comparing ourselves to others, that's a work in progress.  Stepping out into anything can be scary, create self doubt, and it's hard not to compare to other people's success.  It's also listening to those whispers.  The callings in your life.  I know how important it is to follow your dream.  To put purpose behind a passion.  We've all thought about our "death bed" moment and how we don't want to look back and regret not doing.....I get that.  I know what my heart yearns for.  It's also a "I want it now" feeling.  However, I know what's most important in my life right now.  It's taking care of what's most important.  It's being fully invested in her life.  It's not giving up when it's hard.  Physically and emotionally hard.  Even when it's over.  It won't be over and it will be a brand new listening for, investing in, taking care of, asking for help, and recognizing what's most important.  But right now, I know that resounding "what's important" is right where I'm at.  


Saturday, January 23, 2016



Anticipation, or being enthusiastic, is an emotion involving pleasure, excitement, and sometimes anxiety in considering some expected or longed-for good event. Robin Skynner considered anticipation as one of "the mature ways of dealing with real stress... You reduce the stress of some difficult challenge by anticipating what it will be like and preparing for how you are going to deal with it".

Nothing, not anything, can prepare a human being for loss.  I'm learning that I have no idea what lies ahead.  Just when I think I have things under control, I'm knocked back into grief.  This word "grief,"  it's literally all around me.  The more I look, the more I see of other's walking through some multifaceted form of grief.  I am not exempt from this list.  Even though I try so hard to push and deny my way away from grief.  The ugly, lonely, hard to breath, debilitating kind.  The kind where only isolation makes sense to me.  It's diving into mindless smut on television because it's a distraction from the real, anticipatory thoughts that enter my brain daily.  The daily thought of death.  It never leaves.  It surrounds my sweet, innocent, brown-eyed, sunshine haired, quiet, loving gift of a girl.


This past Tuesday, Livia fell.  I placed her on a kitchen chair that sits right next to my refrigerator.  She had just gotten home from school and still had her coat, AFO's, hat, and gloves on.  I placed her there to go get Finley's piano books and my coat.  My plan was to scoop her back up and go directly to our van where we would wait for Finley to be delivered by her bus.  Off to piano lessons we'd go.  However, as soon as I turned the corner, on a mission for piano books, I heard a crash followed by a screaming cry.  Liv had fallen face first onto my kitchen floor.  Blood, swollen lip, instant bruise, and a broken heart.  It was an accident, and I get that, but it threw me into the trenches of grief.  Liv took an entire 24 hours to recover.  I knew she was sore, but she was off.  Naturally, I felt horrible, but this time it hit me physically.  A tiredness and soreness that I've never experienced before.  It was grief showing me another "face."  I turned friends down for phone calls, denied food to be delivered, ignored calls and even my door bell.  Here's the thing.  I loathe talking about this because I know I haven't even reached the end of the plank where the plunge will be the deepest, darkest, dirtiest trenches of grief that will surely consume me.  It's what my friends are experiencing because their beloved's died at tender tender ages.  However, this is all a process, and it all takes time.


Livia's accident, as I was reminded by a wise fellow Sanfilippo mom, was a very visual reminder of how fragile she is.  Life is fragile for all of us, but I'm losing little pieces of my girl everyday.  Right in front of my eyes, things are changing.  Friend's children are dying.  Funerals are being attended.  Hard conversations are happening.  Grief is being felt; mentally and physically. 

Just like in the movie "Inside out," we learn that we can't have Joy without Sorrow.  It takes time for Joy to realize how important
Sorrow is in the balance of life.  How true this is in my journey.  Specifically with grief.  Nothing, not anything was going to bring me out of the physical grip grief had on me besides time.  I had to feel it, I had to let it happen.  I had no choice.  Coming out on the other side has let me reflect on all of this.  It has made me see that there will be many times in my life that this will happen,
and only time will heal whatever multifaceted balancing act the day brings.  This reflection and experience is a sort of re-boot.  Being crippled from grief makes me appreciate my strength and the blessing in taking care.  How consuming her, being in her presence is the wisest and most important life lesson I will ever receive.

My friends, thank you to those that listen and not try to fix.  Thank you to those who don't think twice about an unanswered phone call or text.  Thank you to those that offer and offer and offer; and after all the rejections still choose to show up.  Thank you for not comparing or rushing me through.  Thank you for praying and for loving.  Thank you to those who feed us; spiritually and nutritionally.  I cherish you and see how much you love us, especially my girls.  You are key players in this balance of life.  One more big one.....thank you for holding my hand! (wink)