Graduation

Look at my sweet sleepin boy. He is up to a perfect 6 lbs. Yesterday, after a VERY trying day, he still took 6 cc's from the bottle. It doesn't help that the special formula he has to be on tastes terrible. Keep praying for his eating. At this point his stomach isn't tolerating any more than 15cc's per hour, continuous feeds. They want him to get up to having 58cc's at once, then waiting three hours- comparable to a more "normal" eating schedule. He is still getting his feeds through his NG tube. There is the possibility of him going home with the NG tube to sleep with at night, but then use a bottle throughout the day. The other option would be to do well enough to just use a bottle. The last option is to surgically have a Gtube put in.

I keep telling the doctors that no matter how frustrating this stage, or any other is, I refuse to be disappointed....

I. am. holding. my. son.

I pray that I can keep this grateful attitude in the future when the fact may be easier to take for granted.
I was reminded of this fact this morning. One of the cardiac surgeons was joking with me and reminded me of our first conversation months ago. It was the day before Shep's first surgery and he was informing me of the reasons he and his partner loved doing this particular surgery. "There is rarely serious complications and never a fatality," he said. I remembered feeling so at ease at this hopeful statistic.

This morning he told me that it wasn't soon after that was kicking himself for that statement. There was a time when he greatly feared that Shepherd would change that statistic.

Hearing this was a sober reminder of all that God has perfectly accomplished in Shepherd's life. Yes. I said perfect.

Many may question the use of that word in the midst of so many complications.

But I believe that Shepherd's life in the past, present, and future will be and has been perfectly what God intended. And I know that many beautiful things have and will come out of his life. Somehow beautiful things come out of ugliness.

No, not somehow. I know exactly how.

Because my Redeemer lives. And that is what Jesus is all about. Redeeming. Making ugly beautiful. And I don't just mean making everything ok.

I mean making Himself known. Because He is what beauty really is. To know Jesus is like the accumulation of everything beautiful you have ever seen, known, imagined, thought of, and dared to hope for.

I hope that's what He show's with Shepherd's life, with our lives, with every Christian's life.

Because that is real.
So speaking of real & beautiful moments- here's one. This is one very proud big brother. he is such a mommy. It's so sweet. He's gonna hate that line in 20 years.

It' s just your so nurturing and tender, my strong boy. Your softness is your great strength. Don't ever forget that.
He LOVES his face mask. He's not even sick, but he pretends he's a doctor.
Your hands will be that big one day, Shep. Give it time.
Other than feeding, they are mostly trying to tweak Shep's med's so that he can prepare for home. But I'm not getting any time frame. That's still unknown. For now, we'll handle one graduation at a time.

I will say 2 graduations in one week is one big heap of blessing. 2 of my favorite boys movin up. Shep to the CICC and Noah from school.

Did I just type that? I've hardly had time to soak it in. My courageous husband is graduating tomorrow. The only thing Noah or I have ever graduated from is Kindergarten, so this is very exciting. If I do something totally inappropriate at the graduation, it's not my fault. I've never done this before.

I only wish that our whole family could be there to cheer him on. But somehow this is part of the beauty, remember? Sick child in the hospital, incomplete family at graduation= ugly. God's plan for tomorrow=redeemed. I don't know what it will look like, but it will somehow show the beauty of God.

Thank You, Jesus.

Thank you for keeping our family through these many, hard years of diligence on everyones part. Thank You for getting us to this day. You are so kind and good.

We may not all be together tomorrow, but here's our first family pic. Someone shoulda told me to shower that morning. Oh, well. This is life, right? Ugly made B..e..a..u..t..i.f..u..l. remember?

Thank you for praying and joining us on this journey. Pray for preserverance on all our parts. There are so many things to be grateful for and so much beauty to be seen in this journey. May the weariness not cloud our vision.