Yesterday was a hard day with my two littlest loves. I woke up irritable with the sound of Braden's voice. Not just his voice, but the repetition and aggression by which he lives. But that's normal and besides the point.
Normal is comforting to me right now so although I have hard days with him, at least I expect that and know how to deal with that.
...Because it seems like with Mabel the hardest things are that which I don't expect. I have said from the beginning that the thing that is hardest about what we are going through is the not knowing. Not knowing what to expect. Not knowing how things might change. Not knowing what's going on inside of her. Not knowing what any of this could mean...
I realized yesterday that the 'not knowing what to expect' might be the most challenging. It's all unfamiliar and although I am adjusting to her care, I'm afraid of how quickly things can change.
Yesterday she woke up having a seizure. Another followed. And then sporadically through the entire day we noticed her having small tremor-like movements of her arms and legs. All of this came after days of not charting any visible seizure activity. Yesterday I was very internal anyway. I felt inside of myself and I stayed there because some days it's all too much to try to talk about, especially when I'm not even familiar with the emotions I'm experiencing. I felt exhausted--like so physically exhausted that I could hardly function. And I felt disconnected and frustrated with everyone most of the day. I suppose that is 'normal' but it's also unfamiliar to me.
By bedtime last night, we had one more small seizure and then some vomiting. It's hard to tell whether or not it was normal baby puke or if it was something related to the day we had. I slept with my hand on her the entire night. I feel like I'm in sleep bondage these days-lacking a vital part of my energy because who could sleep when there's so much to worry about. That is the "not knowing what to expect" part. Because we don't know what is going on with Mabel, we don't know much at all. Lately she's been holding her breath while she sleeps. A few nights ago Daniel and I woke her up abruptly. It's been better since, but it's so frightening.
How do you not live in fear when there are so many things that are so uncertain?
Uncertainty is scary and all can do is pray for peace. There are days when she seems so good that I find myself thinking, "she's fine. she's going to come out of this and be normal and things are going to be ok..."
And then there are days like yesterday when the reality strikes once again and I am at a place where accepting it all is necessary in order to move forward in finding answers.
Because I know there are answers to be found.
So many people are conflicted by how 'great,' and 'beautiful' and 'normal' she looks. I have had a number of people tell me that if they didn't know something was going on, they would never suspect. And it's true. And that's what is so hard most of the time.
She looks great and beautiful and yet something isn't quite right.
...However, she is getting stronger all the time and she is absolutely the most brilliant splash of beauty I have ever laid eyes on. I am desperately DESPERATELY trying to focus on these things every day. She is making progress; slow as it may seem. And we are all ok. It is hard, but we are all ok.
There is nothing hidden from my God. There is nothing more sacred than His love for us. He will see us through. He has never left me. He will never. Even when do not have the strength, I will praise Him. And He will come through. He will deliver.
In the unfamiliar, He is there. He is always there.