Peas, chickens, and syncopal episodes

Do you know what a syncopal episode is? I never did. But Lila had one yesterday morning. She was up and about at the charming hour of 5:30am because she couldn't breathe and needed a breathing treatment. Then she evidently decided that since it was just barely light, there was no reason to go back to sleep. So as she was playing she suddenly said she felt bad. And then she crumpled and fell. She was out cold. This having-a-sick-child thing isn't for sissies. Actually probably having a child at all isn't for sissies. Anyway, I think my heart skipped several normal beats. When I got to her though, she was breathing fast but ok. She was out for probably two or three minutes. Waking up finally, she was very groggy for a couple of hours. She's done this before. She had a run of ten or so of these back in November and December and none since. The doctors are stumped. I took her to the ER, of course. Where they checked her heart, her blood sugar, did a chest xray, did a strep test, and generally scratched their heads over her. The doctors there are really wonderful and they have been saying lately that they are probably more frustrated than I am that we can't find what's going on with her. I appreciate the sentiment, even though I am sure it's not true. I am so frustrated that we don't know, that we can't help her, that her lungs sound bad. At least she's stable, at least we're home - oh, good attitudes are so hard to reach for when your child is suffering - at least for me they are. She is doing a little better during the day, not needing treatments so often, but resting a lot. Nighttime is still rough. I'm trying to focus on gratitude and grace - especially during those moments when I want to look up to heaven and scream, "WHAT IS WRONG WITH MY CHILD?!?"

I found a little bit of gratitude and grace yesterday. Lila was so worn out that she again fell asleep early - around 4pm. She slept til about 8pm and then popped up and said, "it's morning time!" I didn't want her to wake up Samantha and figured she'd go back to sleep easier after an hour or two up. So we went outside. We went and sat, in the dusky light, by the fenced in chicken run and watched the big chickens all go in to get ready to roost. The little chicks were out for the first time and we watched them. They were running all around everywhere and would get scared easily by, say, a tall stem of grass, or a gentle breeze, or a cricket. Lila was giggling at their craziness. While we watched, Lila got up and walked to the garden and came back with a huge skirt full of peas. She methodically podded one, ate the peas, gave the rest of the pile to me to hold, got up and gave the shelled pod to the chickens, sat down and took her pile back. We must have repeated this thirty times. Sitting in the twilight with her, while she ate peas and laughed at chicks, I felt a deep thankfulness for moments like these. Moments where she isn't a sick kid, moments where she is just a kid, doing kid things. I am lucky and I know it, when I slow down enough to let God remind me.

In the last couple of days we have heard from friends and loved ones and I have felt positively lifted up by their thoughts and prayers. One woman, who is dear to us, and from whom Lila gets her middle name, said, "Your family is strong and your community is wide and we will get through this together." It was exactly the right thing to say, and it's true. I was touched by her words, and illuminated by the truth of them. I'm not sure I knew how wide our community was, but I'm learning, and how can I help but feel grateful?

As I was putting the girls to bed the other night, I said to them, "Do you know how many people love you both?" They didn't, and were frankly unimpressed with the question. But as they fell asleep I thought about that and began to get a good hold on that gratitude and grace I'm seeking. For now.

Needing help is a hard place to be...

But here we are. We need help from anyone and everyone. We are trying to raise money to get Lila to Denver to see the specialists there. Here is the plan:
First - We have to raise $6,000 so that she can be assigned a date. If we can do that quickly then she will go the first or second week of July. We are trying to raise that money as quickly as we can.
Second - Once she has a date, the doctors will all consult and come up with an itinerary for her, including doctor time everyday and all the tests they want to run as well as meetings with specialists.
Third - Once they have that, they will know how much total it will cost. Then they will decide how much scholarship to give us, how much we can make payments on, and how much we will have to bring with us. We will post that and try to raise the rest.

This is so hard. We are telling all the people that we love that there is a need. And really there are two needs. One is money to get Lila the care she needs. And the second is support. We are so scared and so tired and we would love to read your comments and know that you are thinking of us. Samantha is struggling with all this attention on Lila. Lila, when I brushed her hair this morning lost two more big handfuls of her beautiful, curly hair because of the steroids. This has all been so hard on her. So we ask for your comments here, your prayers, and any other support you can give.

If you want to donate, here's how to do it. You can mail checks made out to Lilac Secaur to this address :
United Citizens Bank
PO Box 322
Port Royal, KY 40058

OR

You can call (502) 947-5143 and ask about a direct transfer into her account.

OR

You can mail it to our address which I will be glad to provide.


All money donated will be used to get Lila to Denver by paying the hospital. We will update weekly how this is going and we will continue to update how Lila is doing and if we get to go, we will update from Denver. For now, we ask for your prayers and love as we go through this tough time.

The beginning. Again.

I was reading the blog of another mother with a sick child and feeling incredibly fortunate. I'm glad to be feeling that way because that feeling comes so seldom. Most of the time I feel cranky and helpless and pitiful. And then I read about a child much sicker than mine, and marvel at the grace the mother exhibits. Gratitude is something that I am trying much harder to hold on to.
Lila is asleep for the night. Poor, tired baby fell asleep sitting up at 5:00. She is so exhausted. Fighting to breathe is hard work. She has been up for hours every night coughing, fighting to breathe, and getting breathing treatments. Her little body is just worn out.
It hurts me to see it. I hurt for her and the ways that she is sick and suffering. I hurt for Samantha and the ways that she feels like she is not as important as Lila. It just hurts. I am praying so hard that the doctors are right and Denver will give us answers. And I am praying so hard that we will be able to get there.
I keep thinking about hope. In some ways, I think, despair and acceptance hurt less. A doctor told me, not three weeks ago, that this would just be life for Lila. It was horrible to hear but I felt like I could manage the news. What choice did I have? Now she's worse - and they say if we can get her to the specialists in Denver we might leave this all behind and help her to heal. I am overjoyed and yet I feel like I am walking on the edge of a knife. This hope is so sharp, I'm afraid it will slip and leave me bleeding.
But for now, she is sleeping, and her breathing is labored. Even in her sleep, breathing is work. Rest well, little one.