I was looking back at photos from this past year to print for the photo boards at this years race. I was struck by the growth of our girl! And not just her hair, but everything about her is bigger. She somehow stopped looking like a baby and turned into a 2 year old right before my eyes.
But she is my forever infant so I probably would have never noticed and I kinda like it that way.
I was up most of the night with her again last night. What I hate most is also what I love most. Moments alone with her that are absolutely the most terrifying are also the moments that I most cherish her sweet smell. They are the times when I painfully hold her the closest. I notice myself watching her every breath and fostering the time I have with the Lord as the rest of the house is fast asleep.
I cry out to Him quietly these days.
I would be ashamed to have to repeat most of what has been said between He and I on those dark, scary nights, but in the light of morning, mercy always shines through my window and as He breathes on me with such radiance, I feel His forgiveness.
I sense His knowing.
I am so thankful for the knowing.
From the Lord, from the people who love me and those who long to, and from the eyes of total strangers whose eyes meet mine with such delicate ease. The knowing is important, friends.
It frees me from explaining. It frees me from speaking on days when the words won't come.
Sometimes the knowing involves being less judgemental and more caring. Sometimes the knowing means living now-in the ugly while understanding the future and the much uglier.
As we spend the next two weeks preparing for our 2nd annual 5k Race/Walk for rare and undiagnosed disease, I feel the excitement of something much larger than myself. Something that, although deeply painful, I was born to do. It is the most conflicting and bittersweet experience to plan an event like this with your purpose being to raise awareness and educate others about this radically impossible life. It is bittersweet because although the purpose in our mission is wonderful and empowering, that all fades away on my lonely couch at 11:08 pm each night. It fades away into something that is very isolating and tormenting and real.
...Into the knowing that our baby is very sick and this is all because she is...
That's always a hard pill to swallow-each and every day and it is never ever going to go away.
But I realized that long ago when, instead of forbidding my friend named 'grief' to live in my spirit home, I welcomed him in. I welcomed him there and embraced the twisted comfort that he began to bring during the ins and outs of these beautifully messy days. Now grief visits every now and then; really only stopping in on occasion. Slowly, grief started to bring a tag-a-long to our late night parties and her name was 'strength.' I loved her and before I knew it she was visiting far more than grief. Strength truly opened my eyes to the wonderful ability I now had in this journey and that was -
sharing our story.
Our beautiful story that I now know to be one of great Hope, great Love, great Courage, great Long-suffering, great Determination, great Devotion, great Pain, and great Faith.
'Strength,' showed up for me and from the moment she did until this moment now, I decided that I was going to embrace her as my own and share this story for what it is. Because this story deserves to be told and our girl deserves to be known for all of her perfection and purity.
People need to know Mabel. And they need to understand Hope.
as we are all preparing for this race and this day that means so much to our family, please continue to pray for us. It is both exhilerating and overwhelming. It is difficult and amazing. Just like every other part of this journey has been, it is wound up into a million different emotions and unwound with completely the opposite. But we are going to do this well because it is our purpose.
Mabel's life has a purpose and we believe God is using that purpose to draw hundreds of people to Him.
One little girl with the most beautiful eyes is impacting our community and someday the world.
And not because of Mabel. Mabel, just like the rest of us, is weak. Not because of me or her dad or anything we could ever do.
It's Because of Him. Because He is strong and because He is God.
"My grace is all you need. My power works best in weakness...."
2 Cor. 12:9