Wednesday, April 5, 2017

Waiting my turn

It's hard to wait.  We live in a society where most anything can happen instantly.  Information is at our fingertips.  Packages can be ordered and delivered in the same day.  When we want something, and have to wait, it may cause frustration or impatience.

I feel like I'm living in a season of "waiting."  

My "wait" feels closer than it ever has.  My "wait" is scary and heavy.  It's hard to "wait," but I'm not frustrated or impatient.  I'd like to "wait" for as long as God allows, and even then, it won't be enough.  When my "wait" is over, my arms will be empty.  

I love what my friend said about 2 girls passing away from Sanfilippo Syndrome yesterday.  She said "Two beautiful souls left this earth yesterday, and heaven sure got two shades brighter, but here? It got dark. And when it gets dark, we must search for the light."  (She blogs too.  You can read her beautiful words here.)

The darkness that is my life is surrounded by so much light because of our children.  The darkness that makes my heart feel the ache and burn is soothed by the salve of love that has been brought to life because of their precious and fragile lives.  The wait, the worry, the after; it will be dark.  However, the life left to liv will be worth it, because she will be the light in my heart.  It's the only way.  

I will be content in the "wait."  It will be cherished and honored; daily.

4 children lost their lives yesterday as a result of Sanfilippo Syndrome.  Our community has been hit hard and many hearts have been affected.  Please keep our friends in your thoughts and prayers.  

Wednesday, January 18, 2017

Not Cute

"Our lives begin to end the day we become silent about things that matter."

"The time is always right to do what is right."

-Martin Luther King Jr

When I was pregnant with Livia, a dear dear friend of mine was 2 months ahead of me in her pregnancy.  I loved that I had a close friend that was just a couple steps ahead of me in pregnancy.  I also loved that when our kids were little, we could share tips, time, and life together with new babies.  My friend had a son, Luke, the December before Livia was born.  We lived just towns away from one another.  It was common for us to get together, have dinner, etc.  One particular night, I had gone over to their house before Jake.  He met me there later in the evening.  When he arrived, my friend Jen and I had Luke and Livia in the bath tub together.  They were big enough to sit on their own, laugh, and interact.  Jen and I were ohhing and awing at how cute it was that they were in the bath together.  I'm sure we even snapped a couple pictures.  We joked that we were going to "arrange" their marriage and how we couldn't wait to tease them that they took bathes together.  Jake did not find it funny.  He made the comment to me that "when will it not be cute anymore?"  I couldn't believe he couldn't see how cute and innocent it was that our kids were in the bath together.  I thought "what a scrooge!"  I wasn't about to listen to his reasoning at the time.  He was ruining my moment.  I brushed him off and we finished the bath.

We have another friend that has kids around Finley's age.  Finley is right in between their daughter and son's age.  Finley spends a lot of time with their daughter.  During their time together, their son likes to interrupt the girls playing together.  Just being a boy, and a brother at that.  During a playdate, Finley and the boy kiss!  I'm not exactly sure why it happened, but part of me thought.....awe, how innocent and cute.  Jake's comment "when will it not be cute anymore?"

Jake is a principal at a local high school.  He cares very much for all of his kids and their families.  The students are good kids, but in the past he has had to deal with issues like kids stealing, fighting, drugs, dress code, sex, etc.  You name it, he's probably dealt with it.  It's very unfortunate to hear a lot of stories that he has to tell.  So many of the issues he tells me about reflects back on to home life.  Not always, but the majority do.  Kids learn and live what they know.  Bullies are bullied at home.  Thieving happens in times of desperation.  Kids can be used as decoys when parents need to steal to survive.  Teens will cling on to relationships, many physical, when they don't get the attention they so crave from the people that should care the most.

"When will it not be cute anymore?"

This morning, I opened up Facebook to see two people post this newspaper article. 

I can picture this child's parents thinking "how cute and innocent!"  I can hear them out in their yard with their neighbors saying "hey little Johnny, come here and tell Mr. Rodgers what you just said about Grandma and Grandpa."  Or maybe in the grocery store when the parents run into their BFF's, the story is told again from the child's innocent mouth.  Each time the laughs get louder and louder, and the child loves the attention he is getting from the story he is telling.  I get it.  I totally get it.

My sweet friend replied to this post of the"retired" grandparents that this may be offensive to some people (she was totally talking about me!)  Comments followed like "sooooo cute," "best jokes are those that are most shocking," "sounds like my grandchild," and my favorite "totally innocent, came from a child's perspective and is innocent.  Keep things in perspective."  Well, here's some perspective for you.  I'm facing my daughter's impending death, every single day.  She has a mental retardation, and I don't find anything about this funny.  Maybe I've lost some of my sense of humor, but I'm losing my daughter with each passing second.  My heart hurts, and to see something like this made light a publication, is not humorous to me.

I will not apologize for what I believe in, and I will continue to defend my daughter and those who are affected by a disability. I am her voice, and I will stand up for what is right because of her, and for her.  My husband was right when he brought to my attention "when will it not be cute anymore?"  Leading by example to the generations behind us (and sometimes ahead of us), is everyone's responsibility.  Standing up for what is right is the solution to so much of what is NOT cute in this world.  

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) 

Wednesday, November 18, 2015

The art of life

To go with the flow means to survive, at times, in our world.  Coping with change has become as unnoticed as your child growing by inches.  It happens right before your eyes.  It takes putting them in last years pants, or measuring them against the wall, or a long distance friend coming around and bringing that change to your attention.

It's no secret that change happens all around each and every one of us.  Sometimes, change is welcome.  A new home, new shoes, a new baby.  Sometimes, change is just the opposite.  It can bring sadness, worry, confusion, or even chaos.  Change can even bring heartache.  A best friend moving away, a diagnosis, a relationship shift. 

I let Livia taste the lasagna I prepared last night.  Jake had "fed" her via her g tube.  Most nights she will sit with us at the table while we eat dinner.  Before she had her tube placed, I thought that it would be cruel to eat in front of her.  We have found that it really doesn't matter that we are eating in front of her.  She would rather be near us, able to hold our hands if she wants.  That is how we eat most nights; one hand holding a fork, the other holding her.  Last night, I felt like she was reaching for my plate.  Her eyes seemed to tell me that she just wanted a taste.  So, I let her taste.  She willingly opened her mouth as the fork approached.  Her lips don't surround the utensil like it used to, but she tasted, and my heart felt.  I couldn't help but be saddened by the fact that she doesn't get to eat like she used to.  On the flip, I couldn't help but feel overjoyed and nurturing that I was fulfilling a "want" of hers.  I gave her several little tastes, all the while feeling extreme gratitude over the plate of food in front of me, the family sitting around me, and the awareness of how change is growing me.

When Livia was diagnosed with Sanfilippo Syndrome, we received the side effect.  That side effect came in the form of grief.  It's apparently always been around.  Early on, I didn't know it's name.  I didn't understand it or acknowledge it.  Today, that grief, it hangs out with me daily.  On the worst days, it feels as if I'm sleepwalking through the day.  No concept of time, actually living out my worst nightmare.  This sleepwalking feeling, it's like grief has surrounded me like a weighted, tightly stitched quilt from which I can't come out from under.  It's a horrible, sinking feeling that I don't wish upon anyone.

 Glennon Doyle Melton had the most perfect post on her Instagram a few weeks back.  I haven't be able to stop thinking about it because it's so true.

It is my experience that with extreme grief and change, comes extreme joy and happiness through all of these life experiences.  It makes you and me human.  Greif has challenged me to rise above, love deeper, engage more often, adventure daringly, and to take care of the most precious.  Grief has exposed my vulnerabilities, but brought those who can meet me right in the midst of it without comparing or fixing; but with loving, praying, and listening.  That is a great great gift. 

From the deepest hurt of grief, to the most perfect love, and everything in between; pay attention.  For me, letting it all happen and LIVing through it makes the art of life and the promise of heaven beautiful and real.    

Thursday, October 22, 2015

Seasons of change

There is so much beauty in the changing of the seasons.  This season is undoubtedly popular.  There is such beauty in walking on crunchy leaves; all while witnessing Mother Nature's rapture through color.  On a sunny fall day, the breeze is majestic.  To feel the warmth of the sun, yet fill your lungs with crisp air; is energizing.  This season is comforting to me.  Like being home.  It's when I feel like settling in.  It's when I feel like slowing down to watch, to experience, smell, taste, and love.  It's when I find myself seeking joy; seeking with intention.  I savor this season. The brevity of it is like a "to be continued."  It's so disappointing, yet you can't help but be so excited because you know what's to come.

Autumn is defined as "a time of full maturity, especially the late stages of full maturity or,sometimes, the early stages of decline"

Livia is my Autumn child.

For a lot of us, being parents we don't always see the changes in our growing and maturing children.  It's common to hear something like, "Wow, Riayn, she sure has gotten taller." or "Matthew, his voice sounds different than the last time I saw him." or "Silas, he doesn't look like a little kid anymore."  It's because we are with our kids everyday and those changes literally happen right before our eyes.  It's hearing it from someone else that we are then able to recognize that yes, they are changing.

It's the same with Liv, but it's heartbreaking.  We hear "Liv looks so sad." or "It looks like Livia is having a really hard time walking." or "Liv seems very distant."

We've been in a season of change with her; and it's been the hardest one yet.  This season of change started with her silent aspiration of most everything and has overtaken her smiles, her laugh, her mobility, and other neurologic issues that we see on the horizon. 

We've gone from a once verbal, running, and playing child to one that is just going through the motions of survival.

I can't help but compare her life to Autumn.  Just like Mother Nature's rapture in color; is her existence.  The beauty that has come from this child is indescribable unless you slow down to experience it.  Unless you open your eyes, intentionally seek joy, and breath in what energizes you; the brevity of life will get the best of you.  The sadness that accompanies these changes is present daily.  I must choose to bridge the gap between grief and joy.  It's when I close my eyes and I remember her voice, I remember the way she loved to eat pizza and ask for more, the memory of her running, playing, hugging, and being a kid; that's the crisp cool breeze that fills my lungs.  It's what energizes me and conditions my heart.  It's knowing that there is a "to be continued."