Painting a New World

The girls and I have a set time every Tuesday and Thursday afternoon to do something creative together. It's been good for all of us, especially with me starting to work. Last week we did body painting. It was so fun and if I could I would put all the pictures up because they are really, really cute. But I am probably the only person who wants to look at 70 some pictures of my girls.

There is a sense in me that we have been trying to re-form our life lately, paint what it will be from this point forward. Lila is still doing well. She has had a dip, where she isn't breathing as well. She has been more tired, and has been getting breathing treatments 2 or 3 times a day. But that is nothing compared to what it used to be. And I can't emphasize this enough, this is the beauty of what we got in Denver. She is not healed; her lungs are still weak, but we are managing her care. She is having a bad lung time and is still, with lots of rest, going to preschool with Samantha, taking swimming lessons, playing outside, and not in the hospital.

I have been a strange mix of sad and so happy lately. I think I thought, "oh, Lila is doing better. The last year and a half are over and we can just move on." But the reality is more like, "Lila is better. I don't have to fear for her every second and so now I am free to feel that sadness and fear more fully." So I've been emotional. It doesn't help (or maybe it does) that I am on call often at the hospital that Lila was treated. I spent time with a doctor in the PICU who was working so competently and gently with a family, and couldn't help but remember when she held my hand and looked into my eyes and promised that she wasn't going to let Lila die. Another of my colleagues was working with a family and the transport guy was with them helping. As he told this story, I got emotional because I remember all the times the transporter would appear with his red transport wagon to get Lila for an xray or CT scan and say, "Lilac! Come ride in my cadillac!" and she would always laugh.

I was on a call Sunday and a nurse grabbed me to ask about Lila and said he would always remember this story about her. Lila is terrified of IV's. She had one and it was time for it to come out and she was terrified of that too. In a 3 year old world, if it was bad to get it, it must be hard to get out. We reassured her, but she could not be comforted. Finally this nurse, Kevin, just took her arm and did it. It was over quickly and we told her it was done, the IV was gone. She stopped crying. She looked up at him, her whole face lighting up, leaned toward him, put both her hands on him and said, "I think I love you." It was a sweet moment. These memories keep flooding me now that I can cry over what she has had to go through. But at the same time I am constantly full of gratitude that we are past that. I love watching her run and laugh and have fewer and fewer nightmares about hospitals and needles.

On the same day this week, we got the final bill from the hospital. The final bill was $22,051 and worth every penny. We have raised a little over $14,000. No. We have been given and blessed through the amazing generosity of others with $14,000. With the blessing of the givers we spent about $3000 on the trip and another $2000 on the floor - tearing up the carpet the doctor said was so important for Lila's lungs. We did the work ourselves. The rest went to the hospital. We still owe $13,000. There is one other place through our denomination that might be able to help us and we will somehow manage what is left. The stress of how we will do that is small compared with the miracle I feel like we have received. My baby is better. I can do anything. Thank you all for that gift.

One more thing is on my mind. Health care reform has been much in the news. I am not (here at least!) going to wade into the politics of that. But it's hard for me to listen to the arguing and fighting about it when our family has been so damaged by the system. Because Lila got caught in a no-man's-land of pre-existing conditions and serious illness, we owe tens of thousands of dollars not even counting our trip to Denver. It is scary and overwhelming and we did everything right as far as health care. And! The treatment that finally helped her, that has kept her out of the hospital for the longest stretch in nearly two years is covered by no one. We are the lucky ones. We have support and have been given the gift of being able to get our daughter treated and we will make it through the rest somehow. And at this point, I don't care how it happens or what the plan is, but no parent should have to fear for the life of her child and wonder how she will pay for care, or choose between medicine to keep their child out of the hospital and food, or fight with insurance agents over and over when you are so exhausted from hospital stays and fear you can't function. I have been in all those places and I am one of the fortunate ones. I just want to yell out into the midst of this debate, "I DON'T CARE WHAT YOU DO!!! PEOPLE ARE SUFFERING. FIX IT!" I hope, whatever your politics, whatever plan you support, your voice will be added to the demand that something be done.

I continue to feel grateful for every single day. Thank you all for your prayers and love. Peace be yours.