Do you ever find yourself in a place where you are forced to think? Forced to accept reality, your circumstances, unable to avoid the difficult things that come to mind? Basically forced to your knees because there's really no answers and if nothing else, prayer brings you closer to peace?
I find myself there often, but it's always unexpected. My dear friend Alicia talked about being the voice for her child, because he cannot speak. I do the same thing, I speak for Marie and I share about our life, though it's not always something I would choose to do, or am completely comfortable doing. I am pushed to do this, because if God's will is that Marie's life is frighteningly brief at least there will be a record that it was, and her story might touch someone, and I'll have done what I feel God wants me to do. Share her story.
Some parts of her story have nothing to do with her. They have a lot to do with how her life has affected our family. We are touched by a humbling beauty. I cannot put into words what a blessing my daughter is, and just how amazed I am that I was trusted with her. She is a complete miracle, defying texpectations placed upon her by the medical community. She is proof that prayer works, that God IS, and all you have to do is be still and you'll see Him in the flash of a smile, a tiny giggle, and a hand that reaches out struggling to grasp and for a brief second connects.
That said, sometimes I just struggle with the reality of it all. I hold a baby that may grow wings and fly to a place I cannot go just yet. I have an older daughter and I worry all the time about how anxiety will affect her. Will she look back and see a happy childhood, or one consumed by a little sister who required more time, or just see a past filled with worry and tears. I hope she sees the happy one, Luke and I work really hard for that. The thing is, it's hard to know if you are succeeding.
Other times, I struggle with the requirements placed upon me. Marie is fragile; she is so strong, but so incredibly fragile at the same time. We have to be careful with her so that she's not exposed to sickness, especially now as we were reminded recently of how hard she must struggle when she is sick. That means that we stay home when it's cold and windy. We stay home when there are places to go that will have a lot of kids that may be sick. I have to accept help and that is not my strong point. I honestly believe that's one of the ways that God is pushing me. He is forcing me out of myself, to be humbled and to accept offers of assistance when I want to stand and shout "I can do it all by myself". The thing is, to be the caregiver I need to be I cannot do it all by myself.
I struggle with making the call to ask for someone to run Josie to gymnastics, to admit that I just can't get dinner made tonight, to look around and see so many unfinished chores and just let it all go. I am forced almost daily to admit that I am not in control. God is and He's kind about reminding me, but I struggle with that. I want to control the way things go in my own home. That's not to be.
To everyone who has helped us I'm grateful. For the meals, and those who help me keep life as normal as possible for Josie, for those friends I am so grateful. To be Marie's voice I am grateful. There are times though when it is so hard then she smiles and I forget all of that. Josie comes home from preschool and chatters about her day and I'm oblivious to all the things that upset me and I thought were such a big deal. Luke and I stop and look back at our lives and where we are now and are floored, this is not where I would have put myself, but we are grateful for how close we have become and how we have each other. For Marie I have no idea what her perception is. I know she is happy, she smiles all the time. I think she sees angels because you can watch her, watching them. I think that Josie has an understanding of this that surpasses mine. God knew she would be Marie's big sister. He knew what all of her days were, before even one of them came to be.
This may perhaps not even make sense but at least I put the pen to paper so to speak. I can't say I'm depressed, just dealing with reality. It is worth it, trust me on that. Just to have the time spent with Marie... Still, I want to watch Josie do gymnastics but I can't be in two places at once. Praying spring comes soon, that we can go out and about again. That Josie won't miss out on things and I can be part of them with her... Praying for the ability to accept how things are, and the ability to thrive despite our trials... Praying...