Links

I've been thinking about links lately as the journey to Denver becomes a reality. It has gone from seeming like a total impossibility, to an unlikelihood that we have to try for, to a "could this really maybe happen?", to a I can't believe this is happening, to an "okay, we're going - it's obvious this is going to work." And it has gone from the first to the last because the links we have formed and our families have formed. From people who graduated with my parents, the church that Ben grew up in, the middle school that Ben's mom teaches at, Ben's first church where the girls were both born, my sister's husband's mother's medical practice (did you follow that?), the woman who helped me with the girls' births, seminary classmates, friends from high school church camp, church members from our current church, honorary and actual cousins not heard from otherwise in years, an amazing dear, courageous, and generous grandfather that I have not seen for a long time, women that I met online, farm friends from our last home, and that's not even mentioning friends and family that we see all the time and talk to often. I can see the links that are holding us up and keeping us from falling. We are literally floating to Denver on a sea of love and care that I would have never believed existed. I am cynical about human nature.

We are not where we need to be financially to get there yet, but I believe that we will be and so I have started preparing. I need to figure out a way to take those links with us. Ben and I will be alone in Denver for the most part going through tough stuff. We found out that Ben will be staying the whole time (thank you, church) because what Lila is going through will be hard. I hope that I can remember to feel lifted up even in the midst of the difficulty of the search for answers to Lila's lungs.

Speaking of links, how wonderful is that picture? The link between Samantha and Lila is so beautiful and strong. They really are terrific sisters at this age. They play and watch out for each other. It's so hard on Samantha when Lila isn't doing well. She has been relieved the last week or so to watch her improve. And she is improved. She has plateaued at this spot of better, but still not well. She tires easily, but can be outside. She is sleeping better, but still not all night. She complains that her chest and throat hurt, but she needs fewer breathing treatments. She hasn't lost any more hair, but her bones still hurt. I am taking what we can get.

And one more link...some of you have asked and wondered about this program where we are sending her. Check out this: Pediatric Pulmonary Diagnostic Center and this: Pediatric Intensive Day Program. These are the programs she will be participating in. There may be more overnight stays with sleep studies and a possible surgical biopsy, but mostly we will be at the hospital from 7:30am until 5pm every day seeing doctors and doing testing.

Links are helpful and informative, and right now the human variety are keeping me going and keeping me strong. Thanks all.