You probably wouldn't recognize it if you saw me. The fear isn't evident like it once was. But it is still lurking and today it was uncovered on a long car ride home from the dentist alone.
Songs played wildly through the speakers and my mind raced with thoughts of, "This is really my life. This is truly happening. This can't be happening. I don't want to do this. I can't go through this. This can't be true."
And then sadness set deep into my throat and mimicked me as I drove through the beautiful, autumn stained trees. Some days everything feels tainted, even the most beautiful of things.
But then I came home.
Home to where I feel safe. Home to where the sadness feels normal. It's where friends and strangers gather in a sacred dance of atypical living and busted attempts at authenticity. I changed my clothes, grabbed my favorite quilt and my sweet girl and headed to the front yard.
It's Indian Summer.
When I sat down next to Mabel on that quilt today I felt the heat of the sun bounce off of my face and I breathed deeply. A sudden feeling swept over me, one that is hard to articulate but one that loosened that fear in me once and for all. I could tell in that moment that it was here to stay, at least until this day was over.
I took the kids to the Y tonight while I did spin class and when I came out the girls watching them told me that Mabel's tongue had turned blue for a few seconds. A couple weeks ago the veins in her arms turned from a deep blue to a strange purple color. I quickly recalled that as I looked closely at Mabel and her famous tongue to assess my own fears once again.
The quiet haunts me and sleep eludes me.
On nights like tonight I try desperately to train my mind. I want so badly for my thoughts to be calm, collected and in control; much like I want my life. But that just isn't so. They are rapid, sporadic, twisted and vigorous. I want to train them to be aware, at ease, prepared. And yet they are not and will not be. No amount of planning is going to prepare me for the moment when my child stops breathing once and for all or when 'the big seizure' steals her from me altogether.
Nothing I do can stop this disease from stealing my daughter.
It may not be now, or even in the close future but at some point, the inevitable truth is that Batten Disease will rob us of her life. And no mother should have to wrap their mind around that, even though I try so hard every day.
I don't think about Mabel's death alot. I don't even think about it every day. I want to live life with her every chance that I get and live it fully. But I do think about it often because it mocks me in moments when I can't help but be reminded.
Like today for instance, when she's so lethargic that she can't hold her head up and she's so weak that she can't even drink her own bottle. Or when her tongue trembles so much that I can see it from across the room. Or when it turns blue, maybe.
I want to be as good for Mabel every day as I am today. And not today specifically but generally. I want to be good for her in those moments when life is being swallowed up by death. I want to make good, rational choices that are going to benefit her and give her comfort. I want desperately to hold it together emotionally so that I can be for Mabel what she is for me every day: A refuge.
Today I heard a song that I have heard several times before and it just speaks to how I feel on days like today. In moments when I feel like I can't possibly go on, like I can't take another breath or another step-I have to let go and let God pour His strength over me. In and of myself, I will never make it through this. But I know the One who conquered the grave and I am humbled that He has my girl's life in His hands. I know that He knows my anguish because He is in it. I know that He knows the fear because NOTHING that I encounter in this life happens unless it goes through His hands. Not anything.
I must just keep holding on. Just a little longer and we'll have eternity.
"As for you, be strong and do not give up, for your hard work will be rewarded." -2 Chronicles 15:7
You're always in my thoughts and prayers. I think you are doing such an amazing job and you are such a strong and courageous mother, wife and advocate.
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