Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Sunday, July 31, 2011

A New Direction

Our plans have changed. In a good way. Julia has been on "comfort care" and enrolled in hospice since birth. That decision was made based on doctors telling us that she would only live days or weeks. Julia, however, had other plans. Yesterday she turned 8 months old! She is quite the little fighter, and we want to fight harder for her. So, no more hospice. We are seeking a second opinion on her heart and will find out if anyone can and will operate. Then there's a whole list of specialists to see and therapies to schedule. The number of appointments and associated decisions is daunting, but it feels good. Why? Because we are choosing hope and choosing life. Just like Julia. We love you baby girl.



Wednesday, July 13, 2011

Summer Travels


After many months of planning, we made the trip to Alabama in early July. Julia does not like being in the car, so we flew. Two hours on a plane where I can hold her is infinitely better than 15+ hours in a car where I can't hold her. We came for many reasons. Living far away from family is difficult and having extra help with all three kids is huge. There are grandparents, cousins, aunts, uncles, and pools here. I very much wanted my grandparents to meet Julia, too, and they cannot travel long distances. I needed a change of scenery. Before Julia we traveled a lot and even while at home enjoyed touring around DC and surrounding areas. Since Julia was born we have stayed much closer to home. We have gotten a little braver with being out with Julia since summer began with a trip to NJ and now AL. It's so good to be out and about more.
Since we've been here so many friends and family members have met Julia. I took her to my mom's church, which is also the church I grew up in, and everyone wanted to see the little miracle baby they have prayed for for nearly a year now. I have been so touched by their thoughtfulness and faithfulness on our behalf. From church leaders to elementary school classes, they have all been praying for Julia. Although I struggle with how I think about prayer after this year, I tell people that she's still here for a reason and their prayers must be helping. It's good for me to feel that.
Julia has done pretty well since we've been here. She had just gotten over a 2 week cold before we came and I was fearful of her catching another on the plane. Thankfully, that did not happen. We are not sleeping well, but that is true at home, too. Car rides are still not fun, but we are dealing with it. Julia has given out a few smiles this week, even at our visit to church. As Sydney said, "they were so lucky to see that!" I have to remember to focus on the miracle that she is instead of getting lost in the day to day challenges. I know she is a tremendous gift. I'm so thankful to be able to share her with everyone here in Alabama.