Thursday, September 21, 2017

Our Sunshine

It’s been since January since Liv has been showing us that things were changing with her.  It was at that point that life, and she, felt different.  I now know that we were being prepared for the time that we are walking her through at this very moment. 

We were so very fortunate that we had many years of words, songs, and mostly laughter from our yellow haired girl.  Sadly, those things were eventually lost; but her eyes always showed us that somewhere within, that smile still existed.  She taught us how to listen to her in ways unlike the norm.  Even now, she is telling us exactly what she needs, and we are listening……and listening well.

We are nearing the end of our physical time with Livia.  We are embracing the wait….the hard hard wait.  There is a lot of beauty that we are seeing and creating during this sacred time.  The love that Livia Grace has created in her 10 years of life is shining exuberantly.  My yellow haired girl has always shined like the sun. 

You are my sunshine…..

Please pray for all of us during this time.  We feel your love.  We see your texts, your messages, the photos you share.  We see you, and we love you for all the support you have always given us.  We are praying for your hearts, too.  I hope that when you feel sad or your heart beats a little faster because of what Livia is going through, that you may take that feeling, close your eyes, and think that it’s because of so much love that you are feeling that way.  It’s a gift and a fuel for all of us to love and LIV a little harder today, and the days to come. 

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.