When I look at Livia, it's like looking through a pair of binoculars needing to be focused. Like an opportunity to look at something so spectacular and beautiful, but the lenses just need to be focused.
That moment of clear, crisp vision. The focus.
Looking through my binoculars lately, it's been hard to focus. The cloud of MPS is heavy in our community. Friends with declining health, tough decisions having to be made, kids struggling just to breath, early death, sadness, reality. Our reality. You see, I get to see Livia with that clear, crisp vision. I look at her and feel so extremely blessed. She is so good; like extra, all the time, good. So when I have this gem of a kid that has taught me life, but in the back of my mind, looming and brewing, I know how hard it's going to get. How will we do this? How in the world will I watch her go away? I hate this, and I hate writing this. Today, I want to throw my binoculars and watch them shatter. It's not fair that so many people around me are hurting. It's not fair that when I look at my beautiful, smiling girl, I have to think that one day, she will be struggling to breath, and all I'll be able to do is hold her hand through it. I can't do anything to help her. But you better believe that I will love her through it all. God gave me a caregivers soul, and for that, I am thankful.
If you are a praying person, please pray for our friends. Kids living with MPS and their families. Even those families that have lost a child.
I need some prayers, too. Today is a hard day and I just want to get past this and cherish what I have right now.