The fight continues

Last night I found myself overwhelmed with emotion. I started looking back at all of the pictures we have taken since our very first day here at St. Jude's. Although I can remember those first days very clearly, in a way they seem so distant....almost like they happened years ago. I can remember feeling like we would never reach the end of our treatments here in Tennessee, the days sometimes felt endless and yet now that we are just around the corner from finally coming home for good, I feel somewhat sad. Leaving here will be hard and I never thought I would feel that way. Everyone knows my little McKaylee and they all wave to her and make over her as she toddles down the hallways of the hospital. She enjoys the constant attention and is sure to greet every friend and stranger on her path. I'll miss the tight-knit family feeling that exists in this place, I'll miss how much we fit in here. For back at home, my daughter is different...she's sick...she's well-known because she is the little girl that's fighting cancer. And not that people aren't warm and welcoming back at home, they are. But sometimes it's just hard to be so different. All the children are sick here at St. Jude's and you can pass their parents in the hallways and see that same look of desperation on their faces that you feel in your heart. Yet I come home and feel overwhelmed by the pity I see on people's faces when they look at my little girl, the shock I see in their eyes, the whispers I hear behind my back. Don't get me wrong, I'm not saying that I don't understand it because I know that people are curious and that's fine, but that doesn't take away the hurt. And I guess it's a hurt that I haven't had to experience here because my little girl just looks like all the other kids. I think I look to this place like a haven, a community of hope, and my attachment to St. Jude's runs deep within my soul. I think I'm also scared that I'll forget.....forget to relish the simple joys of life, forget to cherish every moment of every day, forget to appreciate my children for the wonderful people they truly are. I'm scared I'll get caught up in the ho-hum of "normal" everyday life and I'll forget all the lessons that I've learned here....and I don't want to forget. So as we start packing up our things to make the journey back home, I suddenly feel so lost. I wish I could say that I know where God is leading us and what He has in store for us, but I don't. Will the tumor stay stable forever? Will she just go back to being a bouncy and energetic toddler? Will life just suddenly go back to the way it used to be? What if her tumor suddenly starts growing again....will they be able to control it again the second time around? What happens next....I guess that's my biggest anxiety. As much as I know I need to let God take the reigns, it's still hard for me to give up control of my little girl's future. He's gotten us this far and she's still alive and happy and doing better than ever so you would think I could rest in the mercy of the Savior who brought us where we are today. Instead, I find myself scared to move forward. I wish I could live in this realm of hope, vulnerability and ever-growing joy but I can't. So I'll do the only thing I can do, take one step forward. Knowing somewhere in my heart that God IS still leading us...down the path that He has chosen, to a future that only He knows. And I'll continue to learn the lessons necessary to make it to our final destination and only then will I understand all that it took to get to the final page of this book. The fight doesn't end fact I somehow feel like it's only just beginning.


Hope said…
I completely understand what you're trying to say. The stares, questioning eyes, whispers........You don't get that in the hospital. You're not alone in feeling that way because all the other moms' at the hosp feel the same way.

You both are in my prayers and that won't change. I know you're scared of what you're facing, all the unknown. At St Judes you knew what would happen day to day, so I'm sorry you're nervous. I love hearing she's doing well and I hope so very much she'll beat this. She's already a miracle!
Jaci Spain said…
Praying for you Jessica. I know it'll be yet another adjustment settling back into every day life at home.

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