Shaken and Steadied

It’s been a little while since I’ve written, as I’m sure some of you noticed. I haven’t been sure what to write. In the midst of Lila still being sick we had something really, really difficult happen to our whole family. I can't talk about it more right now, although I hope to soon. But it was one of the hardest things I've ever gone through and has rocked our world. I didn't know how to post without posting about that event since it has been so foundation shaking for us. But I need to post. So many people have prayed and helped and journeyed with us, that you need to know how we are. So all I am going to say about this particular struggle is that we will be okay. Things feel good with our church (better now than in a while), Ben and I are holding strong together, and the girls are doing well. But we could use some extra prayers if you have any to spare.

Now to Lila. The reason why most of you are reading. Lila, after I wrote last, bounced back into the hospital one more time. She didn't really need to be in but she had a lips-turning-blue event. Her oxygen stats were okay afterward, but the doctor felt like she needed to be watched. So they watched. But she, I think, was at the tail end of this five week long spiral that was started with H1N1. So since then, which was ten days ago, we have watched her steadily improve. She's been playing outside again frequently; her peak flow numbers are much better (including a new high for her! yay for lung function!). The only sign that she has been sick is that she is still a little tired. She'll stop what she's doing every few hours and get her comfort things and find a place to cuddle down for ten or fifteen minutes. Then she's back at it. I feel more hope, more certainty really, watching her bounce back from this, that this was just a blip. That National Jewish really did make a huge difference and that we are back into normal life and routine. It feels good to have that feeling.

We are all healing as a family. We have drawn in together after this last bout and all our struggles. The holidays help that as well. I love this time of year. And I feel God's love, and our family's strength carrying us all through this and past this. Advent is a time for hope and expectation. I have both. In the darkness of the world, there is light. As the world rests and prepares for a new growing season, so do I. Really all I want for Christmas this year is having both my girls and the best husband I can imagine home with me and healthy. We have received so many gifts this year and I am celebrating them. We are blessed with a close community and a community so wide that we don't even know the extent of it, lifting us up. Thanks be to God. May your Advent be blessed.

"Child Be Still..."

Life has finally slowed down just a bit. My head, my worries, my fears, my stress has not slowed down at all. Yesterday was our first day home without doctors or hospitals, but it was crazy. We had a scaled down birthday party for Samantha who will be six on Tuesday. Our friends David, Arwen, and Phoebe came. They were fresh air after a stagnant month. They brought love, a reminder of what's important, advice and hope for the future, and real care. Good friends are a gift and we are lucky that they are in our life. I was so tired, I'm not even sure what all we talked about but their presence was a balm on what has been a painful, isolated life lately.

So Lila has been back and forth and up and down. She came home on Wednesday, but was not doing very well. There was much consultation between us and the Denver doctors and our doctor. The Denver docs suggested several things since she was getting worse again. Thursday morning we spent the morning at our doctor who confirmed she was getting worse again. She sent us to the hospital for a sinus CT and chest xray. On the way home from that, Lila passed out. So back to the ER. While we were there, they were able to get the results of her earlier tests. She definitely had bad sinuses which were another explanation, another piece of the puzzle for why she is struggling to breathe. We got to go home but spent most of Friday at the doctor being evaluated to make sure we could stay home. I feel like she is a little better yesterday and today. Hopefully the trend continues.

It's so rough on us all. It's been a month yesterday since Lila got the flu and everything just crashed. Should it be this hard? Are we doing this wrong or poorly? I don't know.

This visit, Lila really struggled. She was yelling at doctors and nurses and resisting her breathing treatments. I felt pressure to keep her calm, but I certainly didn't blame her. How does a three year old process this all? Samantha has been so on edge since we've been home. Crying and emotional over everything. I can't really blame her. How does a six year old process all of this? And I am so tired. More tired than I feel like I should be. We're home and I've had three nights of mostly decent sleep. I've had good meals. So why am I still exhausted? Why does my stomach still feel like it's in knots?

I am so ready for routine and so scared to hope for it. How does one live life with these unknowns? I can't settle into routine until we recover and until I start to believe that this time is over.

I'm spinning. I'm listening for that still, small voice to come to me saying, "child, be still." If I could settle long enough, maybe I would hear it.

Wordless

"I Need Peace of Mind.."

"I need peace of mind and a hopeful heart

to lose this rage and move out of the dark

I ain't looking for rainbows or shooting stars

Just some peace of mind and a hopeful heart..."

That's a song by Mindy Smith that I've been listening to through this long night. Yesterday was the day that Lila went back in. And she went back in with a bang. She was maybe in worse shape than I've ever seen her. They did two hour long breathing treatments and then put her on a continuous breathing treatment for five hours after that. She got oxygen. She was on a magnesium drip through her IV. She was pretty bad. It was scary and overwhelming.

I'm reading those words and they somehow don't do the experience justice, but I have no others.

The good news is that with all of those heavy duty things they were throwing at her lungs, she seemed to improve very quickly. Now the question is how long to keep her in the hospital. I hate it here. I want to feel grateful that I have this great place to bring my child for help, but I'm just so tired of it.

We have now been living in hospital, sick child world for three weeks today. We have had some days out of the hospital but they've been full of oxygen monitoring, breathing treatments, peak flows, and doctor appointments. I feel like normal life has once again been tsunami-ed away by lung problems. I've had to quit my job and my life feels like it's a mess again. And I can't fix it when Lila's health has to be the focus.

I sound whiny even to myself. We have been given so much. We have had a reprieve from all this. We have been given better tools to help Lila. There is so much to be grateful for and I know it and I almost always feel it.

But...sometimes I am unspeakably lonely. Walking this journey is a solitary thing. Sitting here all night watching her breathe, watching the monitors. Trying to work with the doctors, keeping Lila calm and getting her to cooperate.

I am sad and tired. I seem to always be when we are here. I will wait for another day. Wait for Lila to get better. Wait to feel not so alone. Wait to feel gratitude wash over me like rain, cleaning away all the fear, anger, frustration, grief, and loneliness. It will. I'll just wait for it.

"I need peace of mind..."

The Waiting Is the Hardest Part...

Hospital at Home

I'm puzzled. For two days, Lila has slowly been getting worse. Her numbers are slowly going down. I could probably take her to the hospital now. She doesn't really need it yet but having seen this show before, I would put money down that we will go back in the next day or two.

What I don't understand is why this makes me so crazy. I feel like all I am doing is sitting around waiting for Lila to get sick enough to go in. Oh, I'm still doing dishes and playing with Sam and taking care of odds and ends but there's this cloud over me. It's like I can't start anything; I feel unfocused. And the most confusing thing is I am almost...eager to go. Like if we have to do it, let's just get it done and over instead of this interminable waiting. What I want is her to be healthy but if she's not going to be then let's get it done.

I have a farm to run and a 6th birthday party to plan and a house to get in order and a job to look for - and it feels like I can't really sink my teeth into any of that while I am waiting and checking and watching.

It sounds whiny and pessimistic, doesn't it? Maybe things will turn around and we will avoid the dreaded hospital. And we aren't there now, so why not embrace being at home even if it might end soon? I just feel in between, neither fully here nor there.

But. We will continue to muddle through and do the best we can. We continue to covet and be grateful for all your prayers.

I Love National Jewish Hospital

We've been home from the hospital for about a week. During that time, Lila was getting better and better until Tuesday. On Tuesday she started trending downhill with her peak flow numbers, her energy level, and her oxygen levels. I think that she has gotten another virus on top of flu recovery. Right now we are having hospital at home. Minimal activity, every three hour treatments round the clock, and every two hour or so oxygen monitoring. She also had a chest xray yesterday and daily doctor visits.

One of the most challenging things from the beginning with Lila and still now is that there is such a lack of consistency with doctors and their opinions. We have our wonderful and trusted primary care doctor but she is only in the office three days a week and Lila needs to be seen more than that sometimes (like right now!). The other doctors in the office are not as familiar with her situation. I've been told by a doctor there that he "didn't believe in peak flow meters." Another doctor there claimed right up front to feel out of his league with Lila and all her issues. (Which I totally understand!!) Another doctor in the practice claimed to think that Lila just needs to be on oral steroids all the time. All these opinions are confusing and sometimes conflicting.

At the hospital we always have different doctors. Different takes, different thoughts.

So this week I have talked to the nurses and doctors at National Jewish Hospital in Denver three times. I talked to them twice while Lila was in the hospital as well. I can't tell you how helpful it is to hear opinions from people whom I trust, who have helped Lila so much already. They cut through all the different opinions and help me know what I need to advocate for. "No, Lila does not need to be on oral steroids again yet." "Yes, peak flows are really helpful for us in knowing how she's doing." "Yes, we can try hospital at home for a day or two to see if she bounces back." It's just a great resource with tremendous expertise and they know her and they know us. One more reason that I am glad that we went. It has made dealing with her conditions so much better.

I told a friend the other day that I have such sadness that so much has been taken away from us with Lila's sicknesses, but I feel like we have been given so much too because of it. "Which is it?" I asked this good and wise friend. She said, "well, it's both of course." And she said that and it hit me like I couldn't believe I hadn't thought of that. They are both true and so sometimes I grieve for what we have lost and are losing and sometimes I am full of gratitude for what we have received. They are both authentic and valid places to be. That's a nice thing to realize.

Coping

Day 4 of this stay, day 8 out of the last 10. I'm missing my life and my family. It's a real struggle right now and I really wouldn't be making it if it weren't for the things on the list below.

People keep asking me, thought, "Are you taking care of yourself?" How e

xactly does one do that in the hospital when one can't leave? Thanks to the love and care of friends and colleagues, I am being fed which is a blessing and one of the hardest things about being here. But how else? I'm trying. I really am. Guidance is welcomed.

Lila is definitely improving; it's just slow going. The Denver

docs were consulted yesterday and they were immensely reassuring. They feel like everything Lila is going through sounds really normal for her lungs. It just helped me to talk to them.

But it is still wearying. And the implications for what the future might hold feel pretty huge right now. And I really really want to be home. But we are making it. Day by day. Moment by moment.

Here's what this morning has held so far.

"Oh. What's for breakfast?"

"Yum!"

"More yum!"

A lot of this.

A lot of this too.

And, the tv, our constant hospital companion.

Some Things That Are Helping

1. My supervisor, Whit, here at the hospital. She has been a shoulder to cry on, company when I've been lonely, good food for me to keep me going.

2. Another chaplain, Amy, who had exactly the right words to say this morning.

3. Our good friends, the Stierles, who arrived last night with songs and provisions.

4. My husband, who I don't feel quite so separated from.

5. The doctor. Who is smart, caring, well able to communicate, and shares our frustration.

6. Chai tea and french onion soup.

7. This poem by someone who inspires me - along with the knowledge that we are in their prayers too:

when despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
and I feel above me the day-blind stars
waiting with their light. for a time
I rest in the grace of the world, and am free.

wendell berry

Two Things That Hurt My Heart

It isn't really like me to post two posts in a row that can't seem to find the positive. But that's where I am right now.

Samantha is the first thing. In the midst of the hospital and caring for Lila and being home and sick, she lost a tooth. It was her fifth. And you know what? We did nothing with it. We have a special tooth fairy pillow. We didn't find it, we didn't put it in there, and the tooth fairy did not come. She hasn't mentioned it, but I think it likely that she has not forgotten. I feel like I am not being the mom I want to be to Samantha when Lila is sick like this.

And Lila. She said this morning, "when I'm in the hospital I feel like I can never laugh again." I'm sure she does. Her nightmares have gotten far worse, scary bad in the last 10 days or so. They're talking about calling in a psych consult to help her deal with her trauma over being in the hospital.

I so want a simple, playful, happy childhood for my girls. A childhood that feels secure and carefree and I feel like I am failing. After Denver, I was starting to get there after the last two years, but now? I don't know. I am so discouraged. I keep talking the talk to myself - this isn't the start of being in the hospital all the time - it isn't. But it feels like it. Maybe I shouldn't write and post when I feel like this but in so many ways, I'm not sure what else to do.

So thanks for reading. And thanks for praying until I can find my sense of gratitude and thanksgiving again.

Fighting Despair

We went home from the hospital Friday. It's Sunday night and I am sitting back in the ER. Lila is being admitted again. I had a fever all day yesterday and I feel exhausted. My muscles are shaky, my stomach is churning, and I want to bury my head in the sand and let someone else take care of life for a while.

But. I'm the mom. So I'm talking to doctors, nurses, RT's, patient care coordinators and trying to speak clearly and concisely and with respect for their knowledge. I am talking to my chaplain colleagues and supervisors and explaining what is happening and stately quite calmly that yes I am struggling. I am reassuring Lila when she is scared about breathing and being in the hospital. I am talking to Samantha who is feeling so insecure as this world that had gotten steady again is now fragmented. I am trying to work out logistics with Ben about who goes where when. I am trying to stay healthy. I am holding Lila and being strong as they talk about IV's and I see the fear in her eyes. I am polite to the woman from housekeeping who just came in to clean the room, thanking her for her work. I am doing all this and no one sees, no can tell that right now, alone, tears are running down my face and I feel like have no one to lean on. No one who can help with all of this. I am lonely in my struggles. I am fearful and grieving.

Because it is so hard to have a child who is so often sick. A child who needs this type of care. Denver helped tremendously, amazingly. For one thing, we have better tools to diagnose her with and they help the docs here care for her. But what if life is always going to be a struggle to manage Lila's health needs and family life? How do people do this? Really.

I try really hard to see the positive but right now I just can't. I am weary. God, I am weary. I am afraid right now that I won't ever get my energy or my motivation or my life back to where it was a week ago. I feel shattered and hopeless and like I am slowly being drawn back into a small space where the choices are few, the air is stale, and the fear is saturating.

Lila is a trooper. So is Samantha. Their mommy is trying to be.

Back In

Lila was admitted to the hospital again Tuesday morning. This is Thursday and we haven't seen the doctors yet today and so there is a chance we might go home today. Tomorrow is more likely. The doctors think that Lila has H1N1, although at this point they seem to think knowing that for sure is not that important. Whatever she has, it has really triggered her asthma. And it happened fast. Monday night she went to bed after a fairly normal day, Monday night she spiked a temp and started a nasty, deep cough. When she got up Tuesday morning her peak flow numbers were at 30% of her normal lung capacity. So, pediatrician, Denver doc consultation, ER, admit. And here we are.

I was really afraid that I was going to be dismissed because of how unusual it is for a 3 year old to use a peak flow meter. But none of the doctors did. They were all terrific and we got all my favorites (well, except for the med school intern in the ER but he's young and was just disbelieving, not rude).

They have her on breathing treatments every three hours around the clock. Her numbers are slowly coming up. Last night they were good enough for discharge. This morning they are not. So I don't know what they'll do.

In one way this is really horrible. I haven't slept for three nights. I had forgotten how hard it is to sit here and watch Lila struggle. I had forgotten how sore my body gets from sitting in weird positions and tensing my muscles all the time. I had forgotten how awful it feels to just check out of my life without warning for days at a time. No work, no plans with friends, everything upside down, almost no time with Samantha and the guilt of that, missing Ben, not cooking, not cleaning. It is so hard. It is so terribly exhausting.

But here's the blessing in it. I had a chance to forget. We knew that we weren't coming home from Denver with a healed girl. We were coming home with a better plan to take care of our girl with chronic lung problems. It has still taken an immense amount of management. But it has been four months since her last admission to this hospital. Enough time for me to forget some of it. That's a blessing.

The doctors here say that she is bouncing back much faster than previous times because her lung problems are under so much better control. They say if she does indeed have H1N1 with her lung problems that's a pretty good reason to be admitted - not a failing in our care of her. These are good news. And although I would not like it, I can handle an admission once every four months if that's what we have to do. It is so much better than the once every 4-6 weeks. Again - thank you, Denver, thank you, those who prayed and gave money.

Lila has been such a trooper. These four months have made a difference in her maturity and she is explaining to the doctors what they need to do to take care of her. "I do not need an IV but you need to give me breathing treatments even at night. Wake up to do that, ok? Also I only like my blood pressure taken on this arm. Also my temperature goes in my armpit, not my bottom. Also when that machine dings it means my breathing is bad and you need to put the thing in my nose to help me breathe better. Did you got that?" She is a character.

Samantha has been bothered by all this. I think she thought we were done with it. She is such an orderly, scheduled girl that my heart aches that we are just gone...again and once more her life is irregular. It makes her feel insecure about everything, I think. On the other hand, she seems to be enjoying some one on one time with Ben. She was getting so much of that before when Lila was in the hospital and lately hasn't been. It's made us aware that we need to give that some attention when life is normal again.

And this time I have faith that it will be normal again. Sure there is fear that this is the beginning, that it's starting all over. But really I think this is just a dip that we were told would come. And we just have to ride through it. I'll have to take care of my family, allow enough time for us all to recover when we do get home, and thank the Lord that Lila will get better and that this has become the exception to our life rather than the norm.

If anyone out there is still reading, I'm grateful for your interest and care. Let me know you're reading if you can, it would help. Thanks all for all you've done.

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.

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.

Bad news but who cares?

Okay maybe I care a little but just a little. Many of you know that Lila's primary insurance through the wonder of our unethical, incompetent health care system does not pay for any of her lung or breathing issues. She is covered by SSI disability which gives her KY medicaid. We were hopeful, after speaking with our case manager, indeed we were banking on medicaid paying between 15% - 30% of the costs of this trip. We found out today that the claim was denied. We can appeal and we will. And I think we have a pretty good chance. The doctor who looked at it said that he felt much of what they did could have been done here. Perhaps that's true. But it wasn't. We've struggled with this for nearly two years and no doctor was able to help the way they did. Ben and I said the same to each other that our only negative feeling amidst all the positive of this experience was that it seemed like some doctor here should have been able to do some of what they did. And in the end medicaid is going to save on hospital bills from this program. But that's logic and logic doesn't always seem to enter into the decisions of government agencies.

But I feel okay. We'll appeal. And really it doesn't change how I feel. I said it in the last post - I would have done anything to get her to where she is right now. Whether we get the help we were hoping for from medicaid makes no difference in my joy at how well she is doing.

All right. So back to some other things that we learned in Denver. We learned that her reflux is a very big problem in her asthma. She was on medicine for her reflux when they did the test to see how her reflux was and it was still really bad. Reflux makes asthma worse in two ways. One way is that as the reflux comes up, it irritates the nerves in the esophagus and the nerves in the lungs and trachea become irritated as well in a sympathetic response. The other way is that when reflux is bad enough which hers is, it can come up far enough to be aspirated into the lungs which also causes trouble. So they doubled her reflux medicine and surgery might be necessary in the future.

Also, a bigger deal to me, is that they figured out why she was passing out. It was connected to the reflux making her breathing bad. Evidently when your reflux is as bad as Lila's is, it can come up and actually make your trachea spasm, cutting off your air supply and making you pass out. I won't bore you with all the ways the symptoms match and how they figured it out exactly, but it fits precisely what was happening with Lila. It is so good to know and understand why that part of it was happening.

We have some tools besides the medicine for helping with her reflux. We will also be followed by a GI doctor who will help us keep it under control.

That's more of what we took away. I'll finish the wrap up in a day or two. I wish that I could find a way to post Lila's happiness at being able to enjoy being outside on the internet so you all could share in it and feel good about it. I hope that you will a little bit anyway. May peace be with you all.

Keeping Up

We got home Sunday night which was wonderful. We are exhausted and worn out and exhilerated and blessed. Lila is doing terrificly well. She is running around and breathing well. She got a cold and we managed it. I am not exaggerating when I say that this trip changed her life. When we left she could not run around without huffing and puffing and stopping. She is running and playing and her lungs are not slowing her down a bit. We got home and Samantha said, "Let's go pick tomatoes and let's run!" Lila said, "Wait! I can't run...oh, I forgot, yes I can!!!" And they took off. We've been watching her closely but she is doing so so well.

I am probably too tired to write down all of the things we took away from the hospital but I am going to start at least.

The biggest thing was a new medicine. This is a combination inhaled steroid and long acting bronchodialator. They don't usually give this to kids younger than five, but the concerns over that were far fewer than the concerns of her constantly being on oral steroids. This medicine is working wonders. The inhaled steroid is better tailored to her type of asthma and she is getting stronger everyday.

We learned another important thing about how we give her her medicine. It's logical but no doctor ever talked to us about it and we just never thought of it. When she is sick and her airways are inflamed is when she needs the inhaled steroids the most to calm the inflammation and make her able to breathe again. It is also, however, when she is least able to get the medicine where it needs to go. Her lungs and airways are already tight so she can't get as much in, so the inflammation gets worse, which means she gets even less in and on and on til she can't breathe. They have taught us to take her peak flow (to see how her breathing is) and if it's low, she gets a breathing treatment to open her up so that the medicine can get in and do it's job. It's simple but makes a great deal of sense. When she was at her most sick and needing the medicine the most, she was getting almost none. This really helped with this last cold she had that she fought off - the first one in 18 months that didn't send her to the hospital. Amazing.

That's maybe a third of the main things we took away. I'll write more tomorrow or the next day. We are so grateful to be home and so grateful for all the prayers that carried us to Denver and back. Words can't express. I have a feeling in me, too deep for mere gratitude, for all of you who made it possible for us to go, who prayed, who called, who wrote. We don't yet know the final bill and if we will have enough to pay it, but it was worth it. Watching my little girl run around, seeing her joy in being outside, her wonder at being able to do it, I would pay anything, do anything. Thank you all so incredibly much. God has touched our lives through all of you.

I will share more soon. Blessings and peace to you all.

Sorry it's been so long since my last update. I've been having technology issues. We did get to leave Denver Saturday morning after going to the hospital for a last check. We have been so fortunate and blessed. I will write when we get home tomorrow.

Homestretch

Yesterday was more recovering. We got some results back. The cell balance between eosinophils and nutraphils (yeah, look how smart we are now) in her lungs which control different types of asthma, looked good. The docs say that's the new medicine she's on and that that's what they hoped to find. The other important test about whether there are lipid laden macrophages (see? we're learning big words) will be a couple of days. That will tell us to what extent she has been aspirating food and stomach contents. Also we are waiting to see if anything grows in the cultures from the tissues they took.

Yesterday she did some more breathing tests and a bit of running around. She really is doing remarkably better. She is starting to get a little cold and the doctors say that will be the test. She hasn't had a cold in 18 months that hasn't sent her to the hospital. But she is SO much better. And we have so much better tools to tell when she is beginning to go down hill. This has been life changing for us.

Today we do a swallow study. We know severe reflux is perhaps the biggest puzzle piece to her asthma but there is concern that she is aspirating from the top end too and that her swallow coordination is poor. This will tell us that and if that is the case there are things we can do.

And.....the docs say tomorrow can be Lila's last day!!!!! That means, if all goes well, we will be home SUNDAY!!! We are so ready. This has blessed us in so many ways but we all want home. I told Lila and Samantha today that we would be home Sunday and what the first things they would do would be. Here are there answers in the order they were received. Lila: "I'm going to get out of the car and run all around like crazy because I can now!" Samantha: "I am going to run around and hug our chickens and let our dogs be crazy with me." Lila: "I'm going to go in and kiss all my toys!" We are all ready.

Speaking of toys...yesterday a woman who we didn't know somehow tracked us down through the newspaper article that Lila was in and brought two bags full of toys for the girls. The kindness of stangers amazes me. And speaking of strangers, we miss our friends. I talked to several of our friends in the last few days, and got a wonderful email from another friend and I miss them. I am feeling really fortunate right now. Our life is going to be changed and our friends have stuck with us on this whole horrible journey. Thank you. And thank you to those who have never met us but who are sending prayers our way.

I will post what we find out today and then soon a whole kind of wrap up of all that we have found out. Thanks all.

This will be brief because it's late. Most of what we will learn from this procedure will be from the biopsy. Some we'll know tomorrow and some later. Structurally her lungs look good although her airways are inflamed which makes sense for who she is and what she's been through. She's still dizzy and sleepy and will take a few days to recover.

She's out now. She's still asleep but came through all right. More later.

be still my soul...

Today was a slower day and we got to leave the hospital around 3:00 which was nice. Lila did some breathing tests today. They gave us another piece of the puzzle, part of the pattern. We learned that right now, fairly healthy, she has a 25% reduction in lung capacity without her bronchodialator medicines. That is significant but pretty much what we would expect. It points us on a path though, and that is helpful.

Tomorrow is surgical procedure day. We have to be at the hospital at 6AM. They'll put in the IV, and sedate her. Once she is out, they'll take her and put a tube with a camera up her nose, down her throat, and into her lungs. They'll take a biopsy while they are there. It should take about an hour. It's pretty low risk and will tell us a lot. But, oh, it scares me. It twists my stomach in knots and the tears seem really close to the surface today. It's silly really. They do these often here but this is MY baby. It's a hard lesson to know that I can't protect her from everything. All parents have to learn that but somehow it never sunk into me. Maybe it still hasn't.

I'll send a quick update via phone in the morning when she is out of surgery and then write more later to say how it went. Please pray for her. And for the doctor to be careful and gentle. And for the answers this will give us. "Be still my soul, the Lord is on your side. Bear patiently the cross of grief or pain. Leave to thy God to order and provide; in every change He faithful will remain. "
I'm listening to this hymn a lot tonight.

One more thing...

We went to the farmer's market Saturday and at the cupcake stand there was a woman who really wanted to take the girls picture. She posted it here: http://sugar-bakeshop.blogspot.com/ It sure doesn't look like they're having a rough week, does it? This picture lifts my spirits. As long as there are cherries and farmers markets, they can get through the blood draws and IV's, the missing home and feeling left out.

Tired, so tired...

I do feel absolutely exhausted. Ben is putting the girls down and all I want to do is go to sleep with them, but I haven't updated. So many of you have told me that you check often and all of you are who made being here possible that I want you to know what is going on, but I am tired. Like I said, it is a different tired - I don't feel beaten down; I feel hopeful.

Well. Friday we did Lila's last round of allergy testing, met with the nutritionist, and had our end of the week meeting with the doctors and social worker. We also go the results of her ph probe. Even on medicine she is still refluxing acid pretty significantly and refluxing non-acid stuff often. They said 39 times in 24 hours! The non-acid reflux doesn't bother the digestive system but it does effect the lungs and seems to be a major part of this puzzle. Another doctor is going to look at the results on Monday and we'll know more about what they are going to do then. At first, it sounded like surgery was likely - to tighten the area between her esopgogus and stomach so that she can't reflux as easily. I don't think that has been ruled out but it looks less likely. We'll know more about this piece of the puzzle tomorrow.

She also had her allergy testing done and the results were crazy. They say (and these are the leading allergy people in the country) that she is NOT allergic to mold or cats or dust mites or almost anything. She was allergic to two trees - box elder and hackberry (both of which are everywhere around in KY) and could explain why she had a rough spring. They say that she will likely get more allergic, but that's it for now. But even that, they said, could be enough to have made for a bad spring for her.

They also clarified the role of the mold exposure that she had in the parsonage that we lived in. It doesn't make a huge difference but it was helpful for us. They think that Lila likely had asthma anyway that would have shown itself. Even though she's not allergic to mold, they think that living in a house with concentrations like that was an irritant. She would not test allergic to cigarette smoke either, but living in it would really bother her asthma. That was their comparison. It's nice to have an expalnation finally for what set off this chain reaction and that that exposure was only exacerbating something that was already there.

Plans for this week are for minor surgery (but it feels major to me!) to do a bronchoscopy, a swallow study, another exercise test, and a series of breathing tests. Tomorrow we actually had nothing on the schedule at the hospital. We are supposed to go in around 9:30 and it is almost certain that they will have things for Lila to do. It's been such a crazy weekend though that I would love it if they would let us come back to the RMH after that.

Lila is also really tired. She and Sam both are showing signs of the stress. It's so hard on them. Today we took them to the Disney store. They were each given (by several people) a little bit of money to spend while we were here and that's where they wanted to go. While we were there several people recognized Lila from the paper and the news which was wild. I was also getting a couple of things. Someone before we left gave us a Disney store gift certificate and I used it to buy toys to give to Lila after a tough procedure - blood draws or IV's or the ph probe. And then we'd give Sam one then as well. It seems to make it more bearable for Lila. Well, someone stole our stash of toys out of our car, which upset me so much. So I was picking up a couple of things so I would have something if they needed to stick Lila tomorrow. When the Disney store manager heard who Lila was and what had happened she gave each girl a fairy doll for free. This whole experience has shown me that I am too cynical about human nature. We have been helped so much by total strangers, and by those whom we know that it might be hard to be cynical again.

The hospital people have been really terrific. They take good care of Lila. Before there is a procedure someone comes in and talks to Lila about what's going to happen to her. And if it is a painful thing, they provide distractions (bubbles and viewmasters seem to work well for her) and those things really help. Lila has started having regular nightmares about being hurt in those ways and I hate it. The social worker says that she is showing signs of trauma but that she is dealing with it well. I hope so. I hate this for her and so want to put this behind us for good.

Hope and fear really do march side by side along in me. I keep praying but lately my prayers are just, "God,..." and then silence. I think God can see my heart and knows the rest. Thanks to all who are lifting us up in prayer - the emails and letters have made a tremendous difference for us. We miss you all. We miss home. We miss church. We miss our friends. We knew this wouldn't be fun and it isn't, but the care we are receiving here is better than even the best I had ever imagined. Take care all and know we love you.

Quick update to say that I'll write more later. We are glad that it's the weekend and we have a short break from the hospital. We are all exhausted. We found out a lot yesterday. I'm going to get to a computer and write later today.

I didn't post last night and I'm sorry. I was REALLY exhausted and the girls were needing a lot of attention. Yesterday was a strange day but first things first.

We continue to learn more and to be amazed. My dad gets here Saturday with his laptop and when I can type I will post a long post with lots of stories about how wonderful they have been with Lila.

Yesterday we had blood work, first round of allergy testing, kid exercise test, meetings with docs, parents group. Her first allergy testing was unremarkable. They did foods mostly which we have never had trouble with and goat and chickens (do they have dander?) and we were happy to find she is not allergic to farm animals. The exercise test showed the ways that her asthma does flare up which gave us another piece of the puzzle, as the doctors have been saying. Lila was a champ. She got her ph probe out at 5:00 and we got to come back to RMH. She was so happy. She was running around yelling, "I'm free! I'm free!" We will find out the results of that today.

Samantha is mostly doing really well. She is starting to wear out a bit. We are all looking forward to the weekend. She met with the child behavioral social worker at the hospital yesterday who was so good with her. Not many worries with Samantha evidently. The social worker, Jennifer, said that Sam did mention that she used to feel sad because mommy always left and went to the hospital with Lila, but now sometimes daddy goes and mommy stays with her. I'm glad we've made that change. She also told Jennifer, after being asked to help clean up her toys they had been playing with that she "wasn't really a clean up kind of girl." Evidently Jennifer then asked her who did the cleaning up at home and Sam's answer was ,"no one." Oh well. One more thing to work on when Lila's better.

Now for the strange. The hospital we are at, National Jewish received a gift of 10 million dollars yesterday for pediatric asthma work. So there were reporters, photographers, and even a camera guy. They somehow decided ( I don't know how) that Lila would get pictures and we'd get interviewed. So between tests and caring for her we (mostly Ben) were talking to two different reporters. It was mostly cool, although the cameraman was a little annoying and didn't seem real aware and respectful of the fact that we were running a test on her while he was filming. But the other two were great as well as the hospital PR guys who were around. So check out denverpost.com. I haven't been out to see the actual paper (just the website) but I think our girl made front page! Isn't that crazy? Only Lila.

I continue to be grateful for the letters, emails, phone calls, comments here and the prayers. It seems so odd to have real, solid hope again, but I do. I am exhausted like I get when we come home from days in the hospital. But it's different too - like a postive tired. I am starting to really believe that our life is going to change. Thanks all.

We've learned so much today. We've learned more about Lila's lungs and allergies in two days here than in two years before. We have great docs in KY - it's just that these people are THE experts. We have numerous ideas and paths to investigate. Today we met with the pulmonologist and Lila had her ph probe. That was awful. Tears were shed by us both. But we got through. She's in the hospital again tonight but Ben is going to stay with her. Tomorrow - blood work, allergy testing, kiddie exercise stress test, more doctors, breathing work - plus classes for me and Ben and art therapy for Lila.

I continue to be amazed at the people working here. They are not only so knowledgeable but so good and attentive to Lila. It is incredible. We also start another new medicine tonight. After hearing the doctors talk, I have very high hopes. I'll let you know how tomorrow goes!

Today she had CT of her sinuses, a CT of her lungs, a test for nitrous oxide in her lungs, she learned how to use a peak flow meter, met with a child behavior expert, was examined by two doctors. We broke free for dinner with Sam and now we are at the hospital all night for observation. Tomorrow we see the pulmonary doc and she gets a ph probe. That's rough on her.

I will update then. One thing I have to tell is that out hospital room has these giant windows looking out on greenspace and the Colorado sky. Tonight as I was thinking of the day the nurse said, "look!". And outside were two rainbows arching across the sky. Maybe it's prooftexting or sentimentalizing, but it felt like a promise from God.

We continue to be so grateful for the emails and phone calls. Hope is palpable in our family tonight.

We have also learned new things. New ideas about her lungs, new tests, new information about old tests. Communication is so far great.

I'm wishing for a computer. It's hard to say all I want to say texting from my phone. Please excuse typos and brevity.

First, I am SO proud of my girls. Lila was really a trooper today. I wish everyone could have seen her, determinedly focusing on her breathing - in, out, hold - just the way the docs said. Amazing.

This place is great. I cannot tell you(especially from my phone) all the things they have done to make Lila comfortable and prepare her for the difficult things. I have wonderful stories.

I already take it back. More details later.

We have been at the hospital for 20 minutes and so far I'm not impressed, partly because I am so nervous. We've not actually seen any medical personnel. And there's lots of time to change my mind. Hopefully I'll write later and say, "I was so wrong! They are amazing!" Here's hoping.

Countdown!! Things are rolling along here. We worshiped yesterday at South Broadway Christian Church (DOC) and that was pleasant. There were several people there who were really friendly and understanding. The whole church looked like a castle which Samantha loved. Lila told Mark, the pastor, that his church was a castle and he was the king. He liked that. Samantha loved Sunday School and we look forward to returning next week.

After church we ate at the best Asian restaurant I have ever been in. And it was cheap! We came back to the house and got the girls to nap, hoping to get them on a better schedule.

Last night we picked up Ben's stepmother, Linda, from the airport. The girls love her and she will be another pair of hands to help us this week.

And tommorrow is the day. The last two days of settling in have been downright pleasant. But I am not looking forward to tomorrow. Lila is not either. And I really don't want to be away from Samantha so much who is feeling extra sensitive and needy right now. It's just hard. I am scared too about what if we somehow don't get answers. I'm just a jumble of worries about it all. But I continue to be grateful that we have made it this far and I am trying to let hope be strong. Thank you all for your emails and messages. Even if I haven't gotten back to you individually yet know that it's appreciated and that it really keeps me going. Blessings on you all. I'll let you know how tomorrow goes.

The GOOD, The BAD, and The UGLY

The GOOD: The Ronald McDonald House is amazing. It is beautiful and fancy and welcoming. Our room is great. There are giant playrooms all over. There's even one connecting to the kitchen so the kids can stay occupied while grownups cook - blessings on whomever was wise enough to plan that. There is a giant big wheel and tricycle track inside since so many kiddos can't be outside. And the people! The volunteers here are great. And we arrived just before a group brought in a giant rib dinner for the families here. The other parents, though, are so far the most wonderful part for me. Ben of course has talked to them all by now, but even I have made a few connections. Because you don't have to explain about how tired or worn down or worried or stressed about being away from home you are. They just know. And that knowledge is a balm.

The BAD: It is 5:30am and the girls are awake. I have no confidence that they are going to adjust to this time change thing. We are all a little discombobulated by it. Who knew that two hours would be so hard for the girls to adjust to?

The UGLY: Last night when we were in line for the aforementioned dinner, I met a woman from Texas who had been here about a week. We chatted a bit as we got our food. I was far from my best. Tired after ten hours of driving, bleary, shaky, rumpled and not fit for making new friends. But I did my best. I got food for Lila and me, and made it to the table where I promptly turned my very full plate upside down on the table when I dropped it. I stood there and stared at it for a minute, my tired brain not quite grasping what had happened. I sighed and felt like crying. Before I could process what to do next, my new friend from Texas and two other moms had rushed over and were cleaning it up and pushing a new plate into my hands and practically shoving me toward the food. Then a few tears did escape. I tried to put enough words together to thank them. The Texas mom said, "Oh honey we've all been there, the only way we get through is helping each other. I know exhaustion when I see it. You eat, take a shower, and get some sleep. You'll feel better tomorrow." And I do. Largely because of that kindness and undestanding. Which circles right back around to the good which is where I am right now.

We are at a hotel in Topeka, Kansas tonight. It's 7:30 local time and Lila, who is not on local time, is already asleep. Ben is trying to get Samantha to sleep. She is exhausted but really out of sorts.

They have both done pretty well so far. Lila's breathing seems to be getting worse to me and I am glad that we will be in Denver tomorrow night.

Tomorrow is our long drive and I am blessing the mystery giver who gave us the travel DVD player. We will arrive late and then go yo church Sunday and hope to get settled into the RMH then as well. Our first hospital day is Tuesday so stay tuned. Thanks for all the prayers

Farm Girls

Okay. I am posting one more time before we leave. Lila had a pretty good day and got to be outside for about an hour this morning and a bit this evening. Here are my farm girls. I love this place. It was a good way to say goodbye for now to our home.

Longing

In the almost two years we have lived in this place, I have become unbelievably attached. Attached to the church, attached to the community, those things for sure. We have been supported over and over again by a church that was expecting to get a team of two ministers not a family with a sick child that needed to be taken care of. We are trying to restore the balance and they are hanging in there with us, mostly gracefully, faithfully, and prayerfully. There have been bumps and there will be more before its done, but we are trying to stay on the right road.

So it's true, I am attached to the church and community. But even more is the community of people we have stumbled into. Farmers and firefighter, teacher and carpenter, artist and doctors. Women and men who are seeking to live intentional, sustainable lives. Women and men who have become family, who love us, who inspire me, who floor me with their gifts and talents and thoughtfulness. And the realization that they want my family in their lives just seems like a dream. Getting ready to leave and saying goodbye to them has been hard. At the bank today getting the money out for our trip, I said to Sarah, the drive through teller and the Baptist minister's wife, "This will be the last time I see you so take care." She laughed at me a little, and said, "You're not leaving forever, right? It's just three weeks." And she's right; I have been saying good bye like I'm leaving forever. I think because in terms of emotional time, it will feel like so much longer. Every time my child is hurt, even in the quest to heal her, it feels like it takes days and days in soul time to recover. There will be a lot of that. When I come back, I will have gone through one of the most challenging times of my life and I will have gone through it without this net of people that I have come to rely on. One of them, a woman whom I love and admire, a doctor and thinker, older and much wiser than I, said to me that the net of people will still be with me every step of the way. And yet as I get ready to leave it feels like a series of hard goodbyes. How did I get so integrated in this place?

The other attachment is to the land. We have lived on this little plot of land, our five acres for just over a year now. And yet my roots are deep. I love the giant sycamore tree in the front where my girls play. I love the field out front that Ben has let go for the birds - and the swallows, bluebirds, buntings, finches, and killdeers that make their home there. I love the butterfly weed we found hiding in the back hay field. I love the hazy, summery way that the sun going down looks from our back porch. I love the smell of the air and the breeze on my skin. I love the taste of the first yellow raspberry from the bushes we planted last fall, a promise for seasons to come. I love the taste of the first tomatoes, White Currant and Sun Gold that we had today - they taste like summer. I love our first corn on the cob that we had last night from our land - an entire meal from here, our chicken, our potatoes, our carrots, our zucchini, ours, ours, ours. It made me feel even more rooted. I am literally nourished, body, mind, and soul from this place. Being away will be hard. When we return we will have missed a lot of harvesting. We won't recognize our chickens, and we may even miss the first egg they lay. I will miss the giggles and the laughter from my girls as they discover new things, taste the first fruits, and wonder at chicken antics. I can't help but feel sad at being away during this time of life and flourishing.

But it's worth it. If we get even one more piece of the puzzle of Lila's health, then it's worth it. Worth the goodbyes, worth the missed vegetables, worth the hassle, even worth the needle sticks, IV's, and the surgeries I'm praying she won't have to have. Because the thing is, I am so tired of hospitals. I am so tired of saying to Lila, "don't run around, come inside into the air conditioning, how is your breathing, why don't you rest." My dearest wish is that we will come back with enough answers so that Lila can run all around, run and run, and enjoy these long summer days that are the right of childhood. That she might not have to endure more hospital visits, more fear because she can't breathe, more exhaustion. Our life here is a miracle, our friends, our church, the giving that we have received, all miracles to me. And still I ask this. I know that so many are praying for her. Pray that she can learn what normal is. Pray that this time in Denver is not too rough on her. Pray for smart doctors and gentle nurses. And please, pray that her mommy is up for the challenge of keeping it all together.

This will be my last long, rambling post before we leave. I have no idea what the computer situation will be at the hospital or the Ronald McDonald House, but I will post daily from my phone once we get there on Sunday. One day, two nights left. Ready, set,...

Updates: Lila, Giving & Receiving, Denver, Me

We are home from the hospital. The attending doctor basically wants us to keep Lila in a bubble until we go to Denver. I'm not sure she was quite ready to let us go home. Lila has definitely started heading back downhill. She is resting more frequently, in between bouts of energy and cuteness. If you catch her at one of those moments, you would never even know she was sick. It's hard for her not to be able to keep up with Samantha. But. She is home. She is holding her own. And I feel sincere gratefulness for that.

The gifts have continued to come in. Since I last updated about this we have received $6100. We have received from friends near and far, the largest gift coming from friends who are a constant inspiration to us and reminder of God's presence in our lives and our own call to live out our faith. We were truly humbled and bowled over, and we hope to share more with them for years to come. The other large gift came from the community and church of North Middletown where Ben served for four years and where both girls were born. They still claim us and love us and words cannot express how it feels to know that a whole town is praying and journeying with us. I am running out of ways to say thank you. But I will keep trying. That puts us at around $16000. Around $4000 of that has been given explicitly to help with trip expenses, and the cost of being gone for almost the entire month. The good news is that we have $12000 to put toward costs from the hospital. That is enough that we feel safe going. The total still looks to be around $20000-$25000. If we can get to $15000 we can finance the rest. It looks like we will. When we first heard about this and realized that the only way to get Lila this help was to spread the word and ask for any help anyone wanted to give, it seemed completely impractical that it could happen. I am in shock. I know of nothing else to do but to surrender to this wave of gratitude. This is a miracle to us. We have the temerity to ask God for another miracle, to give us answers to heal our girl so that she can run and play and stay out of the hospital.

We leave for Denver a week from today. This time next week, we will be in St. Louis, our first night on the road. The preparations are huge. I am more and more nervous about this trip, about what we will put Lila through and what we will find out. I will update frequently while we are out there. Her first day at the hospital is July 14. We found a Disciples church to attend while we are out there and spoke with the minister. It always fun to see what a small denomination we have - we knew several people in common. It will be nice to have a place to worship; I need that time and space right now and will as we go through this. We also found out more about the Ronald McDonald House that we will be staying in. They provide a real ministry to families, and I hope we will be able to serve also when we return.

I am overwhelmed. I am tired. I can't imagine normal. I am dreading putting Lila through even more. But there in the midst of all of this, like a candle light glowing through a thick fog, there is hope shining. The love and kindness we are experiencing are keeping it burning, and I pray that God will continue to help me fan the flame. Thank you all for your care.

Back in the Hospital

It's 2:15am and we are at the hospital. After sleeping most of this afternoon, Lila woke up really struggling. We did the whole protocol - breathing treatments, call the pediatrician, come to the ER, see doctors and nurses and respiratory therapists, get admitted and transported up to the good old 5th floor (our second home), talk to the nurse, talk to two doctors up here until finally in the wee hours, I can maybe get some rest. So I'm going to try to until they come back in for vital signs and breathing treatments.

My head hurts. My stomach really hurts. But Lila's finally asleep. Her oxygen is at 96, which I will take. But I am so tired right now that it's hard to imagine that I will ever feel well rested again. Samantha cried tonight when I told her I was taking Lila in. Poor Ben has a lot to manage tomorrow.

Right now I want all my family to be safe and healthy and I want to sleep for a few days. This was supposed to be our first night at Chautauqua had we gone. Tomorrow morning, there in the outdoor amphitheater, voices will be raised, accompanied by a giant organ, to, "Holy, Holy, Holy." I will miss it. Instead I am sharing a hospital bed with my daughter trying to hold on to hope, find the positive, and not cry too much about all the things it feels like I am losing in the midst of this time.

...and we go back down...

Lila is sleeping right now. She fell asleep at about 4:00PM after a tough day for her. We were outside a lot today and it was very hot. She didn't do too much active but just breathing in that heat is work for her. Her breathing is labored like I haven't seen in a couple of weeks. I hope we aren't going into a downturn. I really don't want to go to the hospital. That's always there in the back of my mind when she gets this way. I am so tired of the constant watching, fear, and worry but in some ways I have forgotten how to live any other way. I hope constantly it seems, that Denver will give us answers and our family can relearn what normalcy looks like.

Testing, testing

I sent this from my phone to see if I could send in quick updates while we are in Denver. It worked! I will be able to keep everyone better informed!

Preparations

Lila is still on the up side of things, although I think she is getting slightly worse again. She is still waking up most every night saying she can't breathe, which is so hard on us both. She still rests frequently. She is beginning to have some trouble outside again. Still, I am grateful that she is where she is and not worse.

It is hard, though, when we are at this stage, knowing that she always gets bad again. It's hard to keep from feeling like we are living under a cloud and never knowing when a really wicked storm is going to come down around us. I'm trying to focus on the positive, but it's difficult when the worry is always present.

We are preparing for Denver. We are not going to New York like we had planned. Since the church has agreed to let Ben be gone with us the whole three weeks (two plus weeks of treatment and several days of travel time), we all decided that having him gone for the week before was too much. He needs to be here serving the church before this long time away. Chautauqua in New York is my favorite place in the world and a time of rejuvenation that we look forward to every year, and this year, was a way to make some money for Lila teaching classes. Despite all of those things, I am feeling a little relieved. It seemed like too much to be gone there and then come home and leave again.

So I am preparing. We leave two weeks from tomorrow. The girls are preparing too in their own way. We have been trying to make sure that Lila knows that they will be trying to help her there, but that it will be tough on her. She says that she can manage getting IV's, blood draws, and pinches (her word for shots) but that she can't be brave about it. I think she doesn't like the word "brave" because we mostly use it when something is going to hurt her. She is brave. She just doesn't like the word so we don't use it and we tell her that it's okay not to be brave. Samantha is realizing that this is going to be a strange trip but is thinking of things we can do to make it easier on Lila. She really is a compassionate, amazing kid. And I am trying to think of all the logistics that need to be dealt with here and taken care of so that we can function for three weeks 1150 miles away from home. And trying not to worry about money. So strange to make plans for a trip when the money still isn't there. We have received around $500 since my last update. We continue to be grateful, humbled, and just a little scared. Two weeks and we still don't have enough to go. Talk about faith. Or stupidity. Sometimes I'm not sure which.

No, I know it's faith. I know that it is faith that is getting us through, faith that is keeping us going, faith that led us to this place where my daughter has the best chance of healing, and I see God's hands in the hands that are lifting us up in prayer and helping us make our way. So we will try to keep the faith and we hope that you will too.

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.