The path forward

Now that we know what we know - that our little girl has Turner syndrome and isn't likely going to survive more than a month or two - what do we do now? What do the next few days or months look like? What does the immediate future look like? Of course, there are still things we don't know for sure, but we have to start to wrap our heads around what the short term will look like.

I've had over 10 times the normal number of visitors to my blog reading the story of our little girl over the last 2 days. We're humbled to say the least. And while this blog has been and will continue to be a tool used for us to communicate what's going on, fundamentally it will still remain what it's always been.

This means that among the updates on Kaylee Hope, there will be occasional stories of Carson and Keira. Tomorrow, as with every Saturday at 6:45 AM, a video will be posted here that I scheduled weeks ago. At 6:45 AM on Sunday there will be another weekly photo. Monday through Friday I'll post on anything from politics to faith to casual or humorous observations.

Of course, updates on Kaylee Hope won't go away. And for those of you who are here only for those updates and aren't interested in the other things I write about, I've assembled and will continue assembling all of my posts on Kaylee Hope in the right sidebar under the heading, "Our Journey with Kaylee Hope." Hopefully this helps those coming to this site for those updates with an easy way to read her entire story without filtering through the other content I post on here in case that doesn't interest them.

Right now, we simply need to respond to all of you. We've had an amazing outpouring of support. We have Facebook messages and posts and chats, tweets, text messages, phone calls, and emails to reread and respond to. I apologize for our delay in responding but we've really had more than we've been able to adequately address. Our hope is to spend a few hours in a coffee shop this afternoon before picking up our children to organize those responses and respond to as many of them as we can.

From there, we have a lot of decisions to make and some settling down to do. We're doing our best to live life vivaciously with our baby girl, but reality is we have to plan for the worst. What's hard is we don't want to think about these things, and yet we don't want to regret the decisions we make. You can't reverse decisions like burial vs. cremation vs. whatever other options exist. I'm having a hard time even wrapping my mind around it right now and accepting that it's a decision I need to make. I just tried entering a Google search for "options for disposing of a"... I couldn't finish the search. Go ahead, try typing it out yourself. Try to actually put those words on the screen. Then try pressing "enter," knowing that search is now saved in your Google search history, knowing that when you start typing "options" the remainder of what you searched for is going to show up. Consider that every web resource you've visited for dealing with this is now in your browsing history, showing up when you start to enter any website that starts with the same letters.

This is just a small part of what's going through our minds. I'm sorry if that depiction seems too real and too personal, but it's a small part of what this looks like.

And there are so many similar decisions. We have to figure out who our care provider will be for our weekly visits going forward. I'm trying to think of how to maintain professional and personal boundaries with my clients at work, who will need to know that I'll be out of the office unexpectedly sometime in the next few months. And of course, some of them already know that we're expecting a baby in July, so I need to figure out how to respond when they ask about her. We need to find a balance between taking people up on offers of child care and meals because we're really in need of it and setting aside family time alone together with normal everyday routine.

The road forward will simply not be the same. Jamie gives me a card every year for our anniversary with reflections on the past year. The card she gave me last night included this:

Part of me feels like this was our last "normal" year and to finish this letter is to acknowledge that moving forward we'll never be the same. I know that it could be a really good thing, but I'm not there yet. Right now I'm just really hurt.

I think more than anything we'll simply find a new normal. This experience leaves a stamp that I don't believe will ever go away. While my posts about Kaylee Hope will be fewer as time goes by, I don't imagine they'll completely go away. She'll stick around in some way, whether it's through future reflections on coping with grief and pain or celebrations of her life on her future birthdays or when we hang her ornament on the Christmas tree.

I don't know that the path forward will be dramatically different from the path we've traveled, but I'm sure there will be new scenery along the way. I was recently reflecting on how easy my life has been and how little turmoil I've really experienced. I can count the number of funerals I've been to on one hand. This is all so very, very new.

Regardless of what the path forward looks like though, it will include Kaylee Hope. She's a permanent part of our lives and I'm so thankful for her.