Today has been rough for me.
Mabel woke up crying and has continued to cry the entire day. Her cry has a growl to it. It's loud, aggressive and there's no way to soothe her. Her cry is what I talk about most. It has always been here, as long as she has. This cry is unmistakably due to misfires in her brain and that alone is devastating.
On days like today it is hard to feel like this isn't some sort of punishment. I don't feel that way often. In fact, very seldom do I find myself thinking about the 'why' of Mabel's disease anymore. I accepted it, moved past it and most days can cope really well with it. But on days when it bangs at the door of my patience one too many times, I can't help but swing open that door and let the questions walk right on through.
We talk about grace and mercy of God and I found myself wondering tonight if I really needed such deep lessons in these areas. Is that why God allowed this for our child? So that I could learn a lesson about mercy?
It worked. I have learned all about it. I know there's more to learn and I'm willing to walk it. I just wish it didn't have to be this way. Not her. Not us. Not anyone.
I feel like I won't survive it. I feel as if I can't survive living with her cry for one more day and then I panic having those feelings knowing that I can't imagine living without it either. I won't survive losing her. I feel like I will die at the very thought. But then simultaneously there is a relief that sweeps over me as I know she will finally be able to rest. To maybe be still and have peace in her body and in her mind.
That is also confusing.
I hate that in this world she won't have those things. I can't offer them to her and she isn't going to find them. Instead she is only going to get worse and the only way in which she will find comfort is through medication. That seems so cruel. So unfair. So very wrong.
Today I saw a photo of her under anesthesia when she had her hearing tested for the final time. I broke down crying as I stared at my baby, so calm.
Her body wasn't jerking and I remember practically begging the doctor to keep her under for just a few more minutes so that I could experience her stillness and she could find relief. She woke up smiling that day but just like every other, as soon as her eyes were open, her body was twitching and the nightmare seemed to begin where it had left off before that beautiful break in time.
You can't possibly understand how awful it feels to wish for your child to feel at peace, knowing that what that means is Heaven.
I don't wish for her to die. I could vomit at the very idea. And yet I can't vomit every time I think about it because it crosses my mind many times a day. That's my reality. That's the truth that I have to try to envision, come to terms with, accept and make sense of.
No one can do that and NO ONE should have to.
I feel like I do such a good job of embracing every single minute with this girl. I drape her over my body and she has literally become part of me. I cringe at the knowing that some day that will be removed and I haven't quite figured out what I will do with myself.
On days like today I long for deep rest. Internal, physical, safe rest.
But there isn't that type of rest in our situation. Rest is still weary. Rest is still exhausted. Rest is not rest at all.
I know that I am not being punished. In fact, I know that I have been given the greatest gift that one can be given. Some days there is simply no logic in it and I don't think there is meant to be. It's something that is quite clearly Heavenly and not meant to be understood here, in our humanness.
I do know that I am tired and yet I have the exact amount of endurance I need for this life, with this sweet girl. I am embracing such an amazing love affair with her. It consumes me and I am thankful.
I had a good cry. I will pick up the pieces and do this all again tomorrow. I will pray for another day and another dance with my brown eyed, brown haired girl and I will absolutely trust in the God who created her and gifted her to me.
His ways are not my ways and I am beyond thankful. We serve a mighty, sweet, powerful God. I am enthralled with His goodness.
Please pray for the Stine family.
On Dec. 20th their sweet 2 year old boy, Liam the Brave, went to his Heavenly home with Jesus. He battled hard against cerebral atrophy (brain deterioration; a symptom that Mabel also has due to Batten Disease.) Liam's many symptoms were so similar to Mabel's that he was being tested for Batten Disease. His family raised so much awareness for their little boy and I have never been more honored than I am to know this family. They could use our love and support through the coming days and weeks.
If you'd like to know more, please visit "Prayers and love for Liam the Brave" on facebook.