I was a little over six months pregnant when Levi joined our lives, and now my little Levi is "technically" (as opposed to correctionally) six months old. I remember having a friend come over to take a six month photo shoot of Silas two years ago, which makes me feel a bit guilty. Then I remember that we are the ones who place "norms" on timelines. Every doctor, nurse, and therapist echo a few things about Levi in unison: he's gaining weight beautifully, he makes exceptional eye contact and social interest, and he is the one who gets to set his own pace with regard to milestones, not a timeline. If only we'd all stop putting pressure on ourselves to follow a "standard" timeline for every aspect of our lives. If only we'd all give ourselves a break to walk at our own pace.
Our days pace naturally to an ebb and flow of highs and lows, but then, we are given an abrupt awakening, literally, that keeps us on our knees. Two nights ago I woke to find Levi's G-Tube button sitting next to him, not covering the hole in his stomach, but next to it in his crib. Matthew almost showed me what was in his stomach as I performed a minor surgery to re-open the already closing wound. I'll save you the pretty details, and just say that I would never have told you six months ago that I'd be okay piercing my son's stomach with a gauge. Thankfully after an exhausting day at the doctor's office and two extremely exhausted children, all seems to be ebbing back in order.
I have had so much immense joy in the midst of so much immense hardship lately that at times my soul feels baffled. How do we reconcile such conflicting emotions? Without the True North of God, I'd be lost. I think everyone experiences deep pain at some point in life, and for this reason there are so many who are still lost in the world. They don't know north from south. They confuse day and night or fun with fear. The life of Jesus and His poetic purpose make all of the crazy conflicting courses make a little more sense.
The last year has afforded me a dramatic landscape of changes, but I'm currently seeking to reconcile how to savor a moment without trying to save it. If I don't want to hold tightly to anything, because I know I could lose it at any moment, how do I fully enjoy anything? I think the answer lies in looking at Jesus' life. He didn't hold back his enjoyment, love, or fulfillment for the people or seasons he was given even though he knew He'd live a short life. He also wasn't surprised at the brevity of seasons whether blessed or burdened. So as we approach another new season, which happens to be my absolute favorite one, I will embrace it as best I know how regardless of the changes. I will let the season last as long or short as it must, knowing that my season doesn't have to follow a weekly, monthly, or seasonal calendar. We can all benefit from erasing the diagnostic standards and live at our own pace.
Levi is doing just that... Currently-
- He continues to make snail progress with swallowing. We are going to get another Ear Nose Throat eval to see if they find anything irregular since he left the hospital (he's been home about two months!). Other than that, it could just be a road that takes us through a g-tube season for a while if he just needs to learn to strengthen those muscles.
- His feet are progressing slowly too. We'll know more about his heel clip surgery in a couple weeks, but it seems to be a nice "typical" club foot process and pace. The casts are just another thing that have become our "norm".
- He will see a hand specialist in October, but he's exploring his weak hand and showing good signs of progress with splints and therapy.
- He got his first cold, and we didn't end up in the ER (yet). Yay! So it was beautiful timing that we just qualified unexpectedly and surprisingly (after we got rid of monitors and oxygen) for an in-home nurse once a week for a few months. Perfect timing for the cold and flu season. Now we can take a little time to get Silas out of the house without worrying desperately about what we are exposing Levi to.
I am ever humbled at God's perfect timing in all things. God bless you, and get yourself ready for the most beautiful season ever!
~Pacing Buster
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