Two years ago today our local paper published this story about our family - Turning Hardship Into Hope - about how we choose to share Jack's story through blogging. The message we wanted to send was that the internet often gets a bad rap, but for those of us with medically fragile kids, it can be a life line.
I still believe that.
And this month marks seven years that I have been writing here. I started writing when I was pregnant with Jack. I was thinking this morning about how much the act of writing has been instrumental in my healing after his birth and in helping me find my way in this world I knew nothing about. I am not a writer. Most of my scholarly writing is pretty technical, so this "personal" take is often out of my comfort zone. And being vulnerable to an audience of friends and strangers is its own unique thing. You open yourself up to opinions and scrutiny, but largely, you open yourself up to a whole lot of love.
I know times have changed and blogging has changed with it, but I still can't bring myself to shut the doors on this little space.
This past month has been overwhelming. It was just one thing after another dealing with Jack and his needs. Nothing big, no surgeries, no crisis, but the daily grind of therapists and specialists and rehabilitation has left me feeling like we can never do enough for this kid. We have a running, never ending to-do list with him and not enough hours or energy left in any day to do it. The thing about having a kid like Jack is there is ALWAYS something you should be doing. So you always kinda feel guilty if you're relaxing at all, because relaxing means you're not working, and not working means Jack may not have as good of a shot at, well, life. And so we constantly weigh letting everyone rest and live a "normal" life, or we decide to work on x, y, and z.
I've come to understand that unless you have a child like this, you probably won't understand the weight of it all. And that's OK. It often takes too much energy to even try and explain it, so most of the time, us parents of medically fragile kids just keep treading. Just keep trying and moving and working on the list.
I was feeling like no one could possibly understand this grind, but then I remembered you guys. The people who read here and who have kids like Jack. When it comes down to it, I think my writing here is just so I can get an occasional "amen!" and then feel better about it all. The encouragement and the acknowledgement that others are going through the same thing right now, that there is nothing new under the sun, is what I can't let go of.
So seven years blogging and I still need ya. I still think this place is my life line. As others move away from words, I will still write here and use this place to let you know how Jack is doing, how I'm doing, and really, just hoping that "amen!" comes in loud and clear.