Friday, October 28, 2011


Addison's birthday is 2 weeks away and Adam and I have been struggling. The elephant in the room for us is, "Will there be more birthdays to come?" and we really have avoided talking about it at all costs.  It feels like a reminder of just how far we have come - we never ever imagined things would be what they are today.

Her recent regressions have made all the toys and things we wanted to buy her no longer appropriate. Sometimes it feels like he and I are the only ones who know how sick she truly is. How much of her we have already lost. She may go on, recover one day, and live a long and full life, but she's already been robbed of so much in 11.5 months, it's impossible for us to know that or believe that is the case, until we have a diagnosis.

It was really on my heart for some reason to find her something that is just special for HER, regressions and all. She doesn't really play with toys anymore, and clothes are pretty much obsolete since she's been the same size for 7 months now. I've been looking and looking...
And finally, THIS:

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She LOVES colors and her birthday theme is (quite fittingly) The Very Hungry Caterpillar. So we plan to have it at the party for her to sit in as we open gifts and of course in her room at home after that. I know she will love the colors and I hope, like the caterpillar, one day hope will emerge from all of this mess into something beautiful for her. I'll be reminded of that everytime I see this....


  1. Hi I just found your blog. It really hit close for me because we also had a baby girl Nov 10 last year !! (her name is Allison Rylie) Our oldest daughter was born with a heart defect and we are so so thankful that Allison is healthy. Hospitals and babies are no fun. Praying for you, your family and little Addison...

  2. The caterpillar rocker is perfect! Happy birthday, beautiful Addison!!!

  3. This has me in tears. Addison is so lucky to have you, adam, and her big sisters. she is one very special little lady and we can't wait to be a part of her big one year celebration. love you.

  4. what a great present for her! nov mama here, praying every time i check in that Addison is doing well. praying you get answers soon!

  5. The perfect present! Also a November mama, praying for sweet Addison! Stay strong, my heart goes out to you all. <3

  6. have read for blog from the beginning. praying you find answers and until then stay strong for your precious girl