Part One

Now we are in a season that feels a bit like the aftermath of the storms, kind of like: “wait, what just happened?” Like we are learning and re-learning River’s diagnoses or lack thereof, sometimes it feels like for the first time. The doctors have been telling us all along that we won’t know the full scope of how his list of things that put him at risk cognitively will turn out to impact him at any certain point, but rather, “we just have to be keeping an eye on his milestones.” Okay, well he was behind on crawling, walking, and now talking….but then again, he did have three brain surgeries in one year, one of which he was actually required to hold off on all activity working towards hitting milestones.

So it started feeling blurry, trying to decipher what is leading to what, what is a result of what, where we should expect him to be (and where we shouldn’t!), etc. The pressure I was starting to feel trying to decipher all of this myself……I began recognizing I was not equipped to. There is the kind of stress that urges just the go-to mantras or perspective refreshers or attitude adjustments or practices–the things you lean on in order to just keep trekking on. Then there is the kind of stress that you gotta pay attention to–the kind of stress that signifies that moves need to be made. I realized I needed more eyes on him, more people checking in on him, more support! I needed to know we are doing all we can to support him. So I made the necessary calls and appointments and then breathed a sigh of relief. It’s all about doing all we can do and leaving the rest to God!

I consider most of my posts about River to be stories. Testimonies. Since the moment we found out what we were up against at our anatomy scan ultrasound on March 13th, 2020, our life significantly changed, and there was a prolonged period of just such high intensity battle after battle, repeatedly trying to make sense of what was happening and what the Lord’s plan is for us, how we are to navigate these incredibly tumultuous waters.

I’m not going to get into all the details because we are in a different season now and I am not recounting dramatic stories of being in and out of the hospital…..we are looking at our son and discovering who he is turning out to be in all ways. We are learning River, loving River, completely in awe of River. And that will be a lifelong process, just like it is with any of our children. Time will tell what will or will not be affected by the long medical history section we will be filling out in all future forms. And no matter what that ends up looking like, we are here for it, River.

Part Two

I’m still astounded, daily, at where we are when we think of 2021 having three brain surgeries and new diagnoses and big fears both immediate and future. Aren’t you?? You’d think I’d have a smile plastered on my face every minute of the day. But that’s not how life works, right? Aren’t we all guilty of just moving onto the next worry when one is resolved? Feeling burdened by our long list of items good and bad that need our attention and care. BURDENED BY BOTH THE GOOD AND THE BAD I said! We have a way of making even the good things bad when it becomes added to a list of responsibilities. That list of responsibilities is what takes us out of the present, out of a spirit of gratitude. We have a way of sucking life out of life. We need to be jolted back down to the ground to smell the flowers before us sometimes yo! Find it! Find who and what brings you back down to the flowers! To those joyful steps River takes, each and every one of them!

If you can’t NOT be a list person, write it down on your list: “take time and energy to smell the flowers”!!!

Recently my good friend who spent night in the ER with her child wrote to me, essentially seeing the encouragement and compliments and support she continually gives me in a new light. She got four hours of sleep and then went to work, commenting that “the lack of sleep actually helps her care less–it’s a positive numbing effect–the silver lining.” I related so hard to this! I replied:

“My mom and sis laugh that the day following a night in the hospital is when I say yes to all life-giving, joy-producing aspects of life! The morning following the last time I was in the ER overnight, I took my sister’s kids for the day in addition to my own and we played, hiked, explored, enjoyed the sunshine. Got my favorite pic of them to date…total album cover moment.”

There is such a freedom that comes along with an event or mind-shifting experience that convinces you to say no to all mundane tasks of life and even the structure of TIME. When your head and energy is shifted from the clouds back down to the flowers at your feet, when you’re dialed in to the people and experiences around you. The photo I took of the Pittsburgh cousin squad represents a time that I had no idea what time it was and did not care. That is a GIFT. If there isn’t an event that brings this along, maybe we can all do a better job at bringing it along ourselves….find it! Seek it! Seek and ye shall find!

I recently looked back to the story of Mary and Martha, Luke 10: 38-42. Hooooowee, I have thoughts on that one, maybe I’ll write a post about it!

Until then……THANK YOU FOR FOLLOWING ALONG. THANK YOU FOR CARING. THANK YOU FOR ASKING. THANK YOU FOR ENCOURAGING AND SUPPORTING AND PRAYING. THANK YOU FOR YOUR HEART FOR RIVER AND OUR FAMILY.

Part Three

I started thinking about River, and how he has no words still at over 2 years old, and yet he has this joy that no one and nothing can touch. His cognitive ability FAR outweighs what he is able to communicate and there are no doubt moments where he looks at me in exasperation, wanting so badly to be heard and understood. And I have fortunately really been growing in my ability to still pinpoint what he wants, but I don’t get it right 100% of the time. But again, NOTHING steals his joy. Sometimes I will guess what he wants and he laughs–sometimes his laugh is a laugh that means “yes” and other times his laugh means “not even close, Mom”–yet he’s LAUGHING either way! 

Just made me think of how I am choosing to use MY words that I am privileged to have, which are fruits of my thoughts/mindset/perspective.

I was reminded of the song by Maverick City called “Breathe” and the “it” below refers to our breath:

“I won’t use it to whine all day

I won’t use it to hate

I have a better purpose for my breath

I’m breathing to worship

I’m breathing to believe

I’m breathing to tell my testimony

That’s why I have breath

To praise the Lord

Any other use of it is beneath it

So praise the Lord

Some of the ways that I’ve used it

I realize they aren’t worth it

The reason I’m here today

Is to praise the Lord”