Seven days. And I'm feeling spent. Discouraged. Exhausted. Frustrated. Trying to be trusting and hopeful. Trying to be positive. Trying to take it a day at a time. But it's difficult. Really really difficult. The pendulum swings to such extremes, it seems. She's up, walking, talking, being silly and feisty. Then she's crying, scared, wanting to go home, lungs and diaphragm in need of healing, heart in need of a good rhythm, pacemaker-free. I'd like to say my heart is full of faith and trust, but I'm not perfect. I still have moments of doubt (plenty). And there's been a lot of those today. Lord, forgive my doubt. I don't want to have to come to a place where I need to tell my baby girl that she needs another surgery to make her "remote control" permanent. Please, pray against it fervently.
I've been encouraged by others many times today, including my leader of a husband. Notes, cards, messages, voicemails, scriptures, even videos...all sent my way (or for Camdyn). So for tonight, I dwell on the beginning of Psalm 143:
Hear my prayer, O Lord;
give ear to my pleas for mercy!
In your faithfulness answer me, in your righteousness!
Enter not into judgment with your servant,
for no one living is righteous before you.
For the enemy has pursued my soul,
he has crushed my life to the ground;
he has made me sit in darkness like those long dead.
Therefore my spirit faints within me;
my heart within me is appalled.
I remember the days of old;
I meditate on all that you have done;
I ponder the work of your hands.
I stretch out my hands to you;
my soul thirsts for you like a parched land. Selah
Answer me quickly, O Lord!
My spirit fails!
Hide not your face from me,
lest I be like those who go down to the pit.
Let me hear in the morning of your steadfast love,
for in you I trust.
Make me know the way I should go,
for to you I lift up my soul.
Today was a really good day for extra encouragement. Thank you, friends.
We don't at all hate being here. It's a really positive atmosphere, thanks to the staff. They don't only allow her to squirt staff members with a 60 ml syringe full of water, they encourage it (and then refill it). If it gets her excited for a walk around the floor, they're happy, too. Let's just say that since yesterday, all the PICU gentlemen have been really great sports when she makes them look like they didn't make it to the bathroom on time. Then they stand there for more. And it brings out this girl's real smile...nose crinkle, eye twinkle, and all.
Today, we had to move rooms, as they were expecting two more babes from the OR after heart surgery. We have a tiny, sweet roommate. Camdyn's been calling her "her butterfly." My girl is so tender...and persevering. She sleeps soundly with rarely an alarm going off tonight. She's so tired from such hard work today. And as much as I wish that this burden didn't belong to her, I am reminded that we aren't the ones who wrote the story (thanks to a daily dose of Oswald). Our circumstances are what they are. We don't know why. But they shouldn't be our focus. "If you are truly recognizing your Lord, you have no business being concerned about how and where He engineers your circumstances. The things surrounding you are real, but when you look at them you are immediately overwhelmed, and even unable to recognize Jesus." I spent too much time today focused on the circumstances. The wind has been boisterous today, and the waves have been high, but I didn't recognize that my Lord is in control of it all. I didn't surrender it to Him. No wonder I've felt overwhelmed today. <Sigh>. I'll try again tomorrow.
Please continue lifting Camdyn up in prayer...that her own heart rate regulates itself, pacemaker-free before the end of the week, that her lungs and diaphragm heal, and that her spirits be lifted. We all desperately want to return our family unit home and be together. No alarms. No interruptions. No monitors to watch or IV's to flush. No missing our little boy because we've barely seen him. As much as we consider ourselves fairly strict parents...we decided its a pretty good summer to spoil them (a little). And we're SO READY TO DO THAT.
We cannot even begin to imagine your pain and your suffering. But we are praying that God will intervene, will heal your child, and make your life sweet together in Him.
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