Connection

There's a lot swirling around in my head these days, and making lists does not seem to be enough. I need to write these thoughts down, share them with others. Raising a River can be so isolating, or it can be connecting.  I need it to be connecting. I need to be surrounded by my village. I can't live this life without all of you beside me in some form or another. This week it means posting some of my darkest thoughts on facebook, and knowing that you are accepting them, and loving me regardless.  It is asking for help, and having others show up when I most need it.  

This week, has been so much harder than I thought it would be. Truthfully, I didn't really spend much time thinking about what it would be like. Just like when you have a new baby, you can only do so much to prepare. This was it. Except it was also attached to grief. Almost 10 years of grief that I've been carrying around with me. The grief of giving birth to my first son, a child I dreamt about for most of my life, with a brain malformation. The dream that I had, would not be. In fact, it often felt like a nightmare. 

We spent so much time in survival mode, just trying to bring River comfort. To understand why he was screaming at 4am and why was a bath the only thing that wold calm him? Why wouldn't he take a bottle without me bouncing him and running the vacuum cleaner nearby? Even then we had to feed him every hour for him to (barely) gain weight. Failure To Thrive. Microcephaly. Intractable seizures. Don't google any of those, especially when you're alone, holding your baby boy, wondering what the future holds. 

This is where I have been this week. The grief and desperation and broken dreams. 

This week I've also been on the phone with insurance, nurses, school, pharmacies, lawyers, social workers, case managers and physical therapists while trying to work full-time, re-learn all of River's medical needs, train new care providers, attend to our 7 year old (whose world has also been turned upside down) and our relationship. It's just not possible.  I was pretty sure we were going to fail.

And then there was an offer of a meal, and a playdate... a glimmer of light. A dear friend encouraged me to consider starting a meal train (an organized way for people to provide meals or financial support) to help us get on our feet. It's hard to ask for help, especially when I don't feel like I've been able to help others when they asked. But it's working... not only did I get a tremendous amount of emotional support on facebook, but people are actually signing up to bring meals for the next couple weeks. We feel loved, we feel nurtured. I'm still exhausted, but a little less overwhelmed. Suddenly, it feels like this might be possible. We'll find our routine, our care providers will become independent, little brother will adjust and we'll (eventually) find time for a date. 

Signing off for now,

River's Mummy