It doesn't end

    It's been **FIVE** years since I posted in this space. That sassy, spirited girl has grown into a creative, intelligent whirlwind of a young lady who is brave and stubborn. We are in Ohio now, off the farm and we have a diagnosis: specific immunogammaglobulin deficiency with no resistance to bacteria with polysaccharide coating which all boils down to she can't fight off germs that go for her lungs and sinuses.

     So now she receives IgG that has been taken from donated blood and concentrated to boost her immune system. Every week she gets two needles taped into her belly and the IgG infuses for 2 hours. She gets tired and achy and nauseous but it is so much better.

     Now we are focussed on healing and on dealing with the secondary issues. The heavy steroid use has left its mark on Lila and so now we focus on healthy behaviors and lifestyle as well as smaller issues that were overlooked before because her breathing was so fragile.

      I look at everything we went through and I don't know how we made it. I question my decisions. I look back and wonder if I did the best I could. I don't know. I worry about what all these experiences will do to her as an adult. And then I feel guilty for wondering because I met so many kids who aren't going to get to be adults on this journey.

      My heart aches when I think of all the ways I messed up as a friend, as a mother, and as the mother of a child with all these issues.

     But I'm going to keep writing. The request was made from some folks who know us and I think it's good for me. So keep me company here from time to time, ok?

Was that a different girl?

We are approaching one year since we took our trip to Denver. It has been eight months since Lila has been admitted to the hospital. In that time she has had one ER visit and a handful of doctors visits. She has had some rough nights and plenty of breathing treatments. But each month, each week, each day takes us further and further from the child who fought to breathe, woke screaming with nightmares and the mother who was so afraid, so helpless, so exhausted. It feels like a different life, like a nightmare I once had from which I have now awakened. Maybe I hug her a bit tighter some days, maybe I watch her run and swim, marveling at how far she has come, but mostly, honestly I don't think of it.

Lila is a normal kid. She is so rascally. Just last week I came home to find that she had cracked two dozen eggs, half the contents of my spice drawer, and all our looseleaf tea. She says she was cooking. She doesn't really remember much about hospitals and I am thankful that she doesn't have to be reminded.

Denver changed our life. It was everything we hoped. You all need to know that. Aside from the mountain of medical bills, it all seems like another family. Yet I hope that I have brought with me a sense of gratitude that will stay with me always for the community that surrounded us and for the healthy children I have. We were lucky. We were given the means to change our path, to heal our child. She still has asthma but it is so much better. It's like a different disease than what she struggled with before. My heart aches when I think of who we were last year. Thank you for supporting us. Blessings to all of you.

Checking In

I have no idea if anyone still checks in here, and why would you when I haven't posted in four months? But if anyone is, I wanted to update and continue my gratitude. Part of why I have not posted was I was waiting for the chance to be able to explain fully the really difficult thing that our family has been dealing with that I alluded to in my last post. But we are still in the midst of it, still shaken and struggling, although hopefully over the hump - and I will explain when it is over. Meanwhile, we continue to value your prayers for comfort, peace, and truth.

As for Lila:

She's doing great. We have had some dips in her asthma over the last months but NO visits to the hospital, and only a few to the doctor. It feels like our own little miracle. And we are learning better all the time how to care for her asthma and reflux so that it is much less difficult for all of us. Springtime was a rough time for her last year and we are seeing it this year as well. This year though, rough means one night of coughing and five breathing treatments; last year it meant passing out and hospital visits. It doesn't feel effortless to us and we continue to worry. But so far we are managing the her health in ways that we were not able to last year. We really credit Denver for that. They cared for her and educated us in ways that doctors and hospitals here did not or could not.

She runs. She plays. She laughs. She is the picture of happiness and health. She no longer has nightmares. It gives me such hope and peace to feel like this piece of our life, where breathing is a struggle and worry is our constant companion, is behind us.

We are grateful for all of you and your prayers. Leave a note if you can when you read this so that we know if folks would appreciate more updates. Peace and joy to you all.

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..."