October 30, 2011

Day 19

Day 19

Still waiting...

Samuel has had a pretty good day. The change in his formula and turning his temporary pacemaker back on has really seemed to make a difference in his temperamant. He's back to being our smiley baby again. He has wrapped quite a few nurses around his little fingers and he's got quite the set up now. They brought in a mobile to hang over his bed and he is in love. He'll get so engrossed in it that his pacifier will just drop right out of his mouth and he'll keep his mouth open like it's still in there. (I already found a replacement on Amazon so that he won't miss the hospital one. Whatever it takes, man. This baby cannot be spoiled enough at this point.)

We are heading back into the OR at 6 tomorrow morning. If all goes according to plan, this surgery should be over before most of you have been properly caffeinated, so I won't be posting hourly updates. I'll make sure to hit the highlights though. We'll be getting a crash course in pacemakers tomorrow from the representative after the surgery, so we'll learn all about our little Energizer bunny baby. I'm curious as to how they pace him long term and what the settings will be like.

Don't you feel like we have enough on our plate to research and become mini-experts on? I sure do. I am beginning to think I need to start delegating areas to different people. I'm not sure any one brain can take on all the different facets of pediatric cardiology, plus keep up to date with the Down Syndrome research world. Any volunteers to become the pacemaker specialist in our lives? We'll get you a pager and an official name badge.

This afternoon, while Samuel took a nap, I escaped from the hospital a few hours earlier than normal so that I could attend part of the Oktoberfest at our church. They turned our annual event into a fundraiser for Samuel. It was overwhelming to see our church family love us in such a tangible way. Beyond the Sunday we baptized Samuel, I have been out of church since the week he was born. I have missed being in that place and being with those people. It is just another thing I am looking forward to doing when our life calms back down. (Although, I know from my friends who are also pastor's wives, that it will be many years before sitting in church with my boys will be an enjoyable, worshipful experience!)

So many people today, and in the comments and emails I have received these past weeks, have commented on how well we are handling this. They keep saying how they have no idea how they could do what we are doing...that they wouldn't be able to handle it. That we are inspiring.

But you know what? If it were your kid laying in that sad little hospital crib instead of mine, I would be wondering the same thing. I didn't know it was possible to go through something like this and be able to keep going day after day. I didn't know it was possible to spend 8 hours at your son's bedside, changing diapers and avoiding wires and staring at monitors...and then drive home to play with your toddler and help fill up his little love tank. Add to the mix only seeing your spouse as you tag in and out of the hospital, and it seems impossible that we are going on Day 20 and we are still standing.

But we are. We are standing. And we are getting things done. We are remembering to eat and shower and take the trash cans out on Tuesdays.

But it has nothing to do with us being special. Or strong. Or brave.

We've had amazing support from both our mothers, who have done all the heavy lifting of keeping our household up and running these past 3 weeks. We've had countless people surrounding us in prayer, day and night, all over this country and the world. We've had a church family that has fed us and sustained us, that has understood Travis' need to be away, and that has raised money to help cover the unexpected financial burden we were facing.

And, most importantly, we have a God who loves us. A God who is holding us up when it just doesn't seem possible to keep this schedule anymore. A God who watches over our baby, and the myriad of people who have been charged with his care these past weeks. A God who has been holding our hands in that hospital room every time the monitor has done something scary. A God whose heart I imagine hurts just as much, if not more than my own, at seeing his little child go through so much. A God who knows what each day will hold for us, and a God who continues to be faithful, even when we are not.

That is how we are surviving. It has nothing to do with us at all.

1 comment:

  1. To my dear sweet children of God, I find it very inspiring how you give God all the Glory, while I do not deny He is the one holding you up. I marvel at the incredible grace in which you receive what others have to give you. You are indeed inspiring when in the midst of pain you don't turn and run away, you continue to turn to our loving God. You are faithful followers of Jesus Christ! I have watched you both come home from the hospital dead tired and yet still continue to give away what you have left to Luke and eachother. On that note I think I just lost my grandmother of the year award. Luke is pretty mad at me right now, I took away the kit kat he wanted for breakfast. He now has his potty chair scooted in front of the closet trying to pick the lock. smart kid! Love you!