Alone Together

It's been one of those weekends. Lots of questions and no answers. Lots of pain and no relief. I haven't slept much because Jax has too much anxiety to sleep well. And when Jax is sleeping, I have too much anxiety about him to sleep.

When we moved here we felt so sure that this where we were supposed to be. We had prayed about it and it felt so right. And then we got here and ever since I have been doubting that decision. I keep wondering why God would lead us (me) to this place and then just abandon me. He dropped me here and a few months later took away my baby. And I felt so alone. And now Jax is having all these issues and I feel so alone again. I have no friends and no family to lean on for support. I feel trapped in my little house all the time with a sick baby and no one to talk to. I see everyone who had babies around the same time as me posting videos and pictures of their little one's first steps, and I wonder every day if I will ever even see Jax take first steps.

During our recent meeting with an early intervention specialist she asked me if I felt like Jax's disabilities were preventing me from doing things that I might want to be doing or getting involved in areas that I might want to be involved in. I had never thought about it, but in that moment I realized it absolutely did. The few people we have met here generally exclude us from activities they are doing because we don't have a child that can participate in them. Then when other things come up that are just for adults, we are left out of those too just because we haven't been at the all other events so we are forgotten. From the very beginning here we have been isolated in our pain. Friends we had, we lost, because they didn't know how to deal with our grief. People we were just starting to get to know pulled away because they didn't know what to say. In no way does this make me angry at my children, I love them so much, I am just frustrated at our situation. Why wouldn't God tell us to stay near family? Why wouldn't He tell us to stay near people that love us and can support us? Or why wouldn't He have just made being here a less devastating and lonely experience?

I feel like living here has been exhausting. I feel beat down every single day and have very few moments of relief. The second it seems things are starting to go well, something else horrible comes up. I just keep bracing myself for what is going to happen next- presumably what problem I will be told my daughter has. It breaks my heart so much that so many of my trials are coming through my children. I feel like it is unfair that they are my refiners fire. I often get caught in this dark hole where it is hard to see the world as anything more than a place of pain and hardships. And then Jax smiles at me, and the world doesn't seem quite so harsh again. Its amazing the power that little smile has, and it reminds me over and over that I would do anything for him, no matter how difficult. At least he is here with us, because we know all too well that things could be very different.

For now we are holding on. Holding on to the small moments of peace. Holding on to the little smiles and laughs. Holding onto each other. Holding on to a future time when we can leave this place and some of it's hardships behind us. And mostly holding onto our Faith.