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.
My dear Kelly - There is something so profound about not knowing what it is like until you have walked in someone's shoes or seen life through another's eyes. We may never know but you can be sure that anyone that knows you is praying that peace will surround you always. There are days when it is okay to 'think we can' peak into the future, however, because we cannot see it or know it, we come back to today knowing that this is all we have and with each blessing comes gratitude and thankfulness. Livia is here for a reason. She has taught all of us so much. She is here with purpose; without even knowing it she has completely taken my husband and warmed his heart. If Livia could talk, I would tell her thank you ~ and very politely she would say 'you're welcome.' I love you, your family and this perfect opportunity to tell you so. Take care and God bless you today and always. Love, Mrs. West
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