Undented Joy

Now has been even longer since I last wrote. I am going to try to write every two weeks or so for the next six months so that all the wonderful folks who have prayed and given us help can see the after time.

Lila is still doing very well. Her treatment is working. She is still running. She is still more tired than most kids her age. But they said up to six months for her to really recover. The head media guy at National Jewish Hospital in Denver sent this picture to me yesterday. They have a few pictures and they talked with us for a while because they want to use Lila's story as part of a promotional thing. We are only too happy to let them do that. This place changed our lives and took care of our baby. I would give them almost anything they wanted.

I have started my chaplain residency and the last two weeks have been very busy and intense. It has been a transition for us all to have me working so much. They will be better after this week, but orientation is a lot of stuff. I was thinking of writing because two days ago, I came out of the YMCA, where I go at 5:45am, and had a flat tire. It was not a great morning for it because I was leading devotions for the chaplains at the hospital. Luckily my sister was there and took me to work. Yesterday was a not great day either. Ben called me at work first to tell me that Lila had gotten into the medicine and taken a bunch and he was calling poison control (she's fine) and then called me to tell me Samantha was throwing up. To top it off, I had a confrontation with a grieving person at the hospital which ended in her assaulting me. Not good times. But you know what? Someone said to me, "doesn't it feel good to have normal stuff going wrong for a change?" And it does. Something has shifted in me. I don't know if it will stay or not, but all these things seem pretty minor. I have this joy in me that cannot be dimmed or dented by the things I used to get so worked up about.

My daughter is well. She is playing and jumping and laughing. I've not heard her cough in a month. I have not been a patient with her in 6 weeks or heard her cry while going through tough procedures. I have not felt helpless. I have not cuddled her while she worked to breathe wondering if she was going to die. ER, Pediatric ICU, 5th floor, are slowly becoming places I work, not places that I feared my child's life, not places where I sat disconnected, lonely, miserable. How can anything dent my joy? I still feel like singing and shouting. My vision has sharpened to see what's really important. Now I know. Blessings to you all.

Normal Life

It's been a while since I have updated. Some of that has been because we are really busy - Ben has been doing a lot at church; Ben and Michael, my brother-in-law, replaced our last two rooms that were carpeted with laminate flooring which was one of the things the doctors felt was really important; I've been getting ready to start working as a chaplain resident next week. Some of it has been because I don't know what to say.

Lila is still doing well. It's going to take time for all of us to recover - Lila especially. She still rests more frequently than I think a 3 year old should, but the docs say that's normal. And she really is doing so much better. So much. She can still run around. She and I have been fighting with a cold for the last week, but she's really holding her own. It gives me such joy and that joy has not dimmed one bit, in fact the opposite, as we are home longer, I am feeling more and more joy. I am still watching Lila closely, I still get up sometimes at night and watch her breathe, the hospital where she stayed and where I will be working some has some bad memories that come back, but really, we are doing so well. Lila has even grown almost two inches in the last month now that she has been off of oral steroids for her longest stretch in almost two years.

When I say that I don't know what to say, it's because I have such gratitude in me toward everyone who is reading this. I don't know how to express that. I keep trying and will keep trying. We continue to receive money from churches in Ohio mostly, where Ben is from, who have heard about us and are supporting us. Every other day it seems, money goes into Lila's account at the bank - from $2 to $1000 and we are grateful for all of it. I hope that if you are reading this and you are the pastor of a church, or a member of a church that has sent money or prayers that you will hear this loud and clear and tell your churches - Thank you. You have made a huge difference in our lives and the life of a very sick little girl. Without your prayers and your support we literally could not have gotten through this. Now that we are on the other side, I can see that so clearly. There are not words enough to tell you how grateful we are.

Looking back, I really cannot see how we made it. Everything was so weighed down by fear and the constant worry of Lila's illness. We were walking through a haze and I only know that because it is starting to lift. There are so many things and discussions and plans that were put off because of all the uncertainty and now normalcy is taking some getting used to. I literally feel lighter. How do I thank a hundred people and several dozen churches for that? How do I thank the doctors and nurses and therapists that finally put the puzzle of Lila's lungs together so we could treat it? I am overflowing with thankfulness and feel like I know what grace is now, more than ever, and I don't know what to do with it. I don't know how many times I can write this before those of you reading say, "Oh there goes Kristin again going on and on about how thankful she is. We get it already!" But I think I want to keep saying it for a while yet.

There is a story about Lila's last day at the hospital in Denver that I haven't shared yet and my dad, who was with us, thinks I should. And since I always listen to my dad...Lila was getting one last check over the Saturday that we were hoping to leave. As the doctor finished listening to her and going over her last breathing test results with me, she suddenly threw herself into his arms - this dignified, though still friendly doctor - and said, "Thank you for making my asthma all better!" (In her little voice it was so cute.) So this terrific doctor hugged her back tight and said, "Oh, Lila, what are we going to do without you here?" And she pulled away, looked him in the eyes, and said to him very solemnly, "You're going to make other kids better just like you did me." That was it - we all got teary - me, doctor, nurse. Lila is grateful too.

The Last Piece of the Puzzle

We got a call on Friday night from one of the doctors in Denver. We weren't here and she left us a message asking us to call her back about some lab work that had just come back from Lila's lung biopsy. I was concerned, figuring the doctor would not be calling us if everything was great. I managed to get ahold of one of the doctors yesterday.

Lila has a colonization of a bacteria called mycoplasma in her lungs. That's the bacteria that causes walking pneumonia. She probably doesn't have that illness at this time (although we think Samantha does!) but has those bacteria living in her lungs. It likely becomes active whenever she gets sick which is part of why she has such a hard time. Also just having it in there makes her asthma medicine less effective and her lungs more "twitchy" as the docs in Denver like to say. Usually the treatment is 3-6 months on an antibiotic that she is allergic to. So they are consulting with the pulmonologist and will let us know tomorrow how they are wanting to proceed. Meanwhile, Lila's not supposed to be around people. I guess this is a contagious bacteria.

So this seems to be the missing piece of the puzzle. We knew she had severe asthma, irritated airways from the mold, moderate allergies, horrid reflux - but it still didn't seem quite enough to have her be as sick as she was. The docs said that maybe it was - but here is what we were missing. Every time her lungs would get inflamed this bacteria would jump right in and make it worse.

We have learned so much. There is still a ways to go in healing. We are all recovering - it's been a tough year and a half. We have work to do on the house to get it to where the doctors want it for Lila. We have to fight with Medicaid. I start working in two weeks. There are many house organizing and cleaning projects that just got put on hold. But I see the end. I believe it exists and it's there and we will reach it. Lila is still doing so well. I feel like I've been given a miracle.