My words tonight are not eloquent, they are just honest

Wednesday we went to Disney. We escaped quickly from routine, and had some kind people “turn up the magic” for us. And by “turn up the magic”, I mean, we felt like we were the only people in a crowded park! It was such a beautiful day that we have declared November 7th an official Downing holiday: Disney Day. Jeff and I don’t celebrate or get caught up in the anniversary of sad days. In our hearts, we feel this isn’t the way to remember a person, or a time. So instead, we have chosen November 7th as a official day to celebrate our family, our love for our family, and ‘magic’ and memories of our children.

It is now, that I am learning the difficult game of balance. This isn’t just any balance though, this is balance in extreme ways.

Balance that includes telling an 8 and 9 year old their sister is going to heaven, and watching them crumble at moments because of the magnitude of this information and then rejoicing for silly jokes, a friend who wraps his arm around his buddy as he cries during a 3rd grade school musical because the hippos can’t crash the dance, a stuffed rose left anonymously on a grieving girl’s desk…..

Balance that includes making a phone call to hospice, inviting them into your home and signing a DNR on your 5 year old daughter. There is no greater pain up until now. And 20 minutes after hospice walks out your front door, and that same 5 year old tells you for the first time in more than a year that she is “really really mad at you!” and that’s when the doorbell rings and a friend shows up with a Christmas wreath in hand. It’s beautiful.

Then she proceeds to explain that the community Home Depot has donated an incredible amount of Christmas decorations for our yard….(I think you can now see my house from space.) and neighbors that come out of their homes to help set it all up, put it together and stake it down.

And a neighborhood that starts a movement to bring Christmas early…to put up all their lights and decorations, to make little Caitlin Downing enjoy her last few days with a smile, when they are difficult to come by lately.

Every time I fall to my knees in anguish, with an unbelievable ache in my heart, and I silently say, “how will I survive this pain?” I hear the thud from behind me, and feel the ground shake, as a community, both physical and virtual fall to their knees as well. And my gratitude for that support and love will never be expressed fully, because there simply aren’t any big enough words or actions to convey it. But it is the answer to my question…and to part of my prayers…

I will survive because of your tremendous, selfless and giving hearts.
I will survive because of your incredible and unconditional friendships.
I will survive, because you will make sure I’ve got my shoes on :)
(For those of you who have been reading for a while, you should know I came close to wearing them to bed with my pajamas tonight!)
But I didn’t….

With love and gratitude for all the unspeakable ways you are showing your support and love for my family, and my sweet Caitlin, d

I know you all want to know how she is doing. It is difficult to write, because I know the hurt you will each feel when I share this information. So if you would prefer not to know details, please stop reading now. Caitlin continues to deteriorate. Her speech is understandable only by a few people. She speaks quietly and with slurred words. She cannot walk more than a few steps, and usually needs to be carried. We have relocated a futon downstairs because stairs are impossible to manage, and she is terrified to venture to the upper level of the house. Her pain and discomfort continues to increase and so does her morphine dose. She insists on having me by her side at all times, even when she rests (because she doesn’t sleep well). This care, time and attention from me that she now requires has found me walking away from my phone and iPad for several hours at a time. I rarely see the computer anymore. And for this reason, I have gone hours without checking texts, and several days without seeing emails and Facebook. So please forgive me if I lack response to your incredible, thoughtful kind words and posts. When I do get to see them, I cry as I feel each embrace you share. They mean the world to me. But if I tell Caitlin,”just a second while I return this email” then I lose that many minutes with her. And I can’t lose any minutes with her right now, because in a few weeks, I will lose them all, forever. I know you understand, but I had to apologize anyway, and thank you again.

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