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.”
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”
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.