Meet the McNeil Family

Meet the McNeil Family

Tuesday, January 29, 2013

Freedom

My lovely little girl is having a lot of difficulty walking once again. Ever since our vacation, her ability to stand on her own has deteriorated rapidly. As with so many things because of Sanfilippo, we are never sure if this is our new normal or if she will once again bounce back. She can no longer stand on her own - she will almost immediately try to sit, with no ability to see if there is actually a chair to land on. Her left leg is worse off - lots of toe walking and her knee is constantly bent. It looks incredibly painful.
Last week I actually leg go of her hand for a second and she took a step. I was an arm length away from her and she walked towards me. I was able to snap a quick pic. I love this picture. It shows such freedom. A friend recently said to me that watching our children lose the ability to walk is watching them lose their sense of freedom. That spoke volumes to me. So true.

I hope that I will be able to take more photos of Waverly taking a few independent steps. I hope this isn't the last time. At least I captured it. Her smile. The tilt of her head in delight as she moves towards me. Beauty. My beauty.

2 comments:

Kathryn said...

I'm sorry about the walking situation. :`(

Jody F said...

I met a little boy in a wheelchair at my parents' church over Christmas Break. He struggled clearly with his speech and mobility. In spite of his challenges, he was a plucky, affectionate little boy. I met his eyes once, and he instantly reached to hold my hand, asked my middle name, told me his name, and requested I sit by him (never once letting go of my hand).

Later, I learned that his grandparents are raising him and all of his siblings... It was so sad to me that his parents could not love him because he was clearly so full of love. So often I am touched by your deep love for your children simply as they are. This is a gift you give them, and letting others see and hear about it here is your gift to the world.

I can't even begin to imagine the isolation you must feel walking this path. I pray often for you and Matt, sometimes without words when I don't know what to pray, sometimes for peace, patience, perseverance, and sometimes that a deep strength will grow from these days of such intense vulnerability.

She is a beauty - Waverly - in a way few of us rarely get to see up close. (Perhaps that's why sometimes we don't know how to respond or what to say.) I suspect that both her own life and your fierce love for her will long linger in the many hearts who know your family. While I often wish your story were different, I was reminded that Sunday how inspiring it is to watch you walk through it faithfully alongside your children instead of walking away from them.