This morning I sit at a desk and stare at this screen, wondering what to write with the millions of things going on. There is so much I feel like I need to write on here. This place is one where I reread my words over and over until it makes sense to me. Often I don’t even know what I’ve completely put down until after I hit publish and go back to sort it out.
If my blog seems like an emotional rollercoaster lately, that’s a perfect image of what our life is like right now. High highs and low lows. I have always heard about NICU parents and what they go through, but until you’re in that world you can’t fully comprehend it. I certainly never would have. It’s the oddest thing to never know if you’ll end the day wanting to crawl under the covers and sob your heart out or grab your spouses hand and shout from the rooftops about how your child went off one of their meds.
Oddly, life is still life. We eat, we sleep, we laugh, we cry, we hold it together and we let it all fall apart. I miss Bella terribly but love my time alone reconnecting with Sam too. I am excited when friends I’ve never “met” but have known for years come out to see me. I look forward to small things like the better hospital cafeteria being open or a Starbucks at the end of a long day. Normal in the midst of the abnormal.
There is this fear that when hard things happen, life seems to stop. I learned how that wasn’t true when I lost the twins, but honestly it’s very easy to forget and fear again. Many people have told us how brave we are, but really? It’s not a choice. We do this because this is our life right now and we try to handle it the very best way we know how to. We don’t have a lot of options besides what we are doing.
However. If we didn’t have the support of our family, friends, and you all – I don’t know that this would be like it is. It significantly changes our day when someone writes a supporting email/comment/tweet or I’m praying/thinking about you. I wish I could show you all what it does for us when you put that out there. Once again, you have rallied around us so tightly. Each in your own way. I don’t know how to express what it means that thousands of you have our child’s heart on your hearts. When I look at Kaden each morning, I think of the prayers surrounding him as he lays in his room and his heart tries to keep up with his body. I think of you all as we place our hands on him in the evenings to pray before we leave. It feels like a million hands are in that room with us, all reaching out to hold and comfort us.
There are moments of anger. Moments of sadness. Moments of happiness and moments of extreme joy in all of this. Each hour can bring changes so radical it will take your breath away with trying to sort it out.
But we hold onto the steadiness of your hands reaching out to us. Whatever faith or religion (or not) that you have, whatever you decide to do to lift Kaden up – it matters to us. In those big and small moments of our emotions, we know that you are rejoicing and crying with us. We can’t ever thank you enough. Ever. As we go through this again with another child, we are blown away by the people who came back and those who found us for the first time. As you read our lives during this time, know that the rollercoaster we are on is made a lot more normal because of all of you.