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.