Thursday, September 24, 2015

Non-restless

Just before Levi was born, I had been co-leading a woman's Bible study about a Jennie Allen book called Restless. This was the first time I'd been asked to help lead anything with the exception of normal teacher-student responsibilities. While a little nervous, Jennie Allen's book increased my interest because I could relate to the content perfectly.  Prior to Levi's dramatic entrance into the world, I felt very restless. I kept trying to increase any free time I had with important obligations even though I had pretty much filled my calendar to the point where I'd even plan "down time" in order to observe it.  While I've always been someone who valued parenting, spontaneous adventures, and quiet hours, I also felt a restlessness with regard to how to fill my time. Once I felt like I figured out the "mom" thing, I was ready for the next challenge. It's beyond laughable to think that we ever have anything "figured out." In my own mind, God must have been preparing me for something bigger though. I wanted to utilize each of my moments in a way that maximized my time and my abilities. Little did I know what God had planned just around the corner, in a matter of months to be exact.

We were almost finished with the study the night my water started breaking ever so slowly. Ironically, as abruptly as my end to leading a Bible study, so was my restless emotion. Since having a new "normal," I have never before felt so steady. Instead of feeling as though I'm being prepared for something in the future, I feel as though I'm living it out day by day. I couldn't be more joy-filled with my roles and responsibilities. While I naturally have days that I'd like to end a bit quicker, I do not think there is any better use to my time than to care for all that I am caring for these days. Growing lives, learning to give care, letting go of selfish ambition, watching little ones change, making a home, seeing new waiting room faces, trusting in the unknown, all give me purpose and peace. Every day brings unexpected adventures. While some are more tiresome than others, they all provide a platform for living in the here and now. I cannot imagine living any other life, and if I'm ever weary, at least it's from being purposeful and not restless. Plus, when I look at all my little Levi is doing, I am encouraged to do more.

He's been a rock star these past few days...


We are so thankful our Gibby was here to help these past few days, and Levi loves his new "gym." Thanks Gibby!

The terminator here wanted to capture this moment for when his big bro tries to pick on him in the future.

Levi got his heart checked before surgery, and that tiny hole closed up on it's own! Yay! One less doctor to see!

Big man didn't really have to wear the hairnet, but I couldn't resist the photo op. He had his achilles heels clipped and did marvelous in surgery! Three more weeks and we get those stinky casts off!

This is what you look like when you have to arrive at a hospital by 6 am.

Big man was the smallest man waiting in line for his operating room.

You did it bubba. Mommy is so proud of you!


This one made me forget I got up at 4:30 once we made some fall pumpkin muffins!
Silas and I had so much fun with our backyard picnic on a perfect fall day!

~Steady Buster

Sunday, September 20, 2015

Tiny Miracle

I was recently sent a video that a friend knew I'd appreciate; I only wish I had every email address of every single doctor and nurse that ever really cared for Levi during the first four and a half months of his life. I hope somehow that you will see this and know how often we have and still thank God for you!

https://www.youtube.com/watch?v=3F4I5oJzBH4

It's so important to remember what we've through. Too often we forget the joy of living each day. We think too much about getting to the next vacation, better holiday, or easier phase. Each day we breathe, we are witnessing a miracle. And it's crazy how many of us have gone through similar struggles, and we don't realize it. We don't walk around publicizing our hurdles or hardships. But if we held a banner with everything that has touched us deeply, I think we'd see how very much we have in common with the each other. When you see someone's heart, they feel a little more like family you want to love.

May I never forget everyone that has helped us through these heavy and heart rejoicing times!

Thank you!

So much can change so quickly... Watching medicines, cords, and monitors lessen monthly has equated to witnessing miracle after miracle.










Since we haven't been able to go visit our church family due to Levi's doctor's orders, please know how much we miss and love you too! Your prayers are invaluable!
Here's how we are doing church on Sundays, watching live feed from our home...


And if we are fortunate, the boys will have their own entertainment so we can really focus...

We still sit in awe of the fact that we have two boys who sit and breathe on their own. What a miracle!

~Miracle Buster

Wednesday, September 16, 2015

Small strides

When Matthew and I went on our very first date, we (of course) went to the movies and saw The Notebook. Obviously he was interested in me since he was willing to see such a chic flick in a public theater. While it's not my all-time favorite movie, there's a single line in it that I love. When Noah and Allie are aging, and Noah is being warned by the doctor that his wife's dementia is irreversible, and reading her their own personal love story will not spark personal memories, Noah responds, "You know what they say doc, science only goes so far, then comes God." I think this statement helps me understand my little Levi a bit better too.

It's easy for women to look at both their vocation, spouses and their children as things we are supposed to change, fix, or grow. It's up to us to make people better and teach them how to do that. Not only is this a terrible way to approach anything, but it's absolutely backwards. I have found that the exact opposite is true. Both marriage as well as parenting humble an individual, and they actually make you a better person not the other way around.

Levi has made some small, but wonderful strides the past few days. We've seen his little personality come out and watched his muscles get just a bit stronger in every area. There aren't any major milestones to document, but hearing Levi gallop his little casts for the fun of it in the middle of the night is worth the nocturnal interruption. It also shows us his sweet personality. He's much more like his daddy in that he doesn't want a lot of fuss or focus on him. Too many people in a room all up in his personal space can overwhelm him to meltdown. However, he is like me in that he doesn't need to sleep all night. He can wake up and be bright eyed and bushy tailed just like his big brother and his mommy.

I hate to admit that the cliche "angel and devil" still coexist in my life though. I hear God whispering, See, science and medicine can only tell you so much. Leave room for me to grow your children. I could listen to the devil telling me that Levi is behind, and that I'm not doing enough on my own accord to strengthen him. There is so much more "homework" I could be doing with Levi with regard to his therapy. Yet, there are only so many hours in the day, and many other things that seek my attention. That's when I sit quietly before God and remember how very small I am. When I put God first, everything else seems to fall into place on it's own. It is not my job to fix anything. I merely get a front row seat in what God is doing in our family. Levi has come so far in such a short time, and I rest easy knowing that the angel has the right angle.  Prayer request for a little man below...


This picture just exemplifies the difference already evident in my boy's personalities.

Silas loves park dates, especially when he can compete and lap his date.


We somehow have a lot of "girlfriends" around here. So thankful for all our sweet friends making life fun!


We've been mixing it up with the beautiful fall weather and having our yogurt outside after dinner.

I now have another reason to love fall- Levi can stand it longer outdoors! This picture melts my heart by the way!

This past weekend temps got down to the 50s and that is cause for celebration in our home. Silas busted out his new snow boots, stomped on the few leaves that had fallen, and then we all consumed every pumpkin treat we could find. It was glorious!

This is a staple expression for Levi. I think he's a pondering fellow with an air of curious concern. :)

- Please pray for Levi's upcoming surgery next Wednesday on his feet. It's a relatively standard procedure with a corresponding timeline. Levi will get his heel muscles clipped followed by new casts that will stay on three weeks. Then if all is well, he'll have some fun shoes for three months. Then it's just the "retainer" period as I call it. He'll only have to wear the shoes at night until he's maybe three or four. Excited that we are almost done with casts!

- Levi went to see the ENT yesterday, and we are so thankful there were no red flags. He said his vocal cords do move a bit slower (which we already knew) and that his high palette in his mouth can cause his secretions to just pool there, but since he's learned to compensate, the doc really thinks it will just be time and therapy before Levi learns to eat by mouth. Could be a year or two or more. Just a waiting game, but I'm thankful for the good news, and I think he's getting better at feeding therapy!

- Please pray for Levi's cardiologist appointment next week too. They are just checking to see the the small PDA in his heart is continuing to close on its own. I'm really not worried about it, but it's always good to triple check everything.

- We have an appointment with a hand specialist on October 9. Levi's OT said she's seeing such an improvement in his wrist already, so that's also great news!

-Finally, please pray for the new therapist we are trying to get to come to our home over the next several months to help work on feeding from our house. Pray we get just the right person for our little man.

We are so thankful for you!

~ Striding Buster

Saturday, September 12, 2015

6 months


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

Tuesday, September 8, 2015

High and Mighty

We all think a bit too highly of ourselves in my opinion. I'm realizing more and more that pride and unmet expectations create the most unrest in our lives. Without recognizing their presence, however, they continue to destroy days, months, seasons, and even relationships. Kyra and I had some similarities in our parenting styles and our non-mainstream ideals. With her passing, I wonder and watch how her girls are coping with the small changes and with the grand ones. I find myself clenching at the idea that my own children could be raised without me. But they NEED me! Don't they?

No.... not really.

This doesn't mean that I should keep on the bathrobe, throw some goldfish on the floor and watch movies all day. Of course God has granted me the honor of helping guide and foster my children, but in reality, it's a gift and a privilege to help grow them into adults if I'm given such a grandeur of time. When others come to love, care, and teach my children, I don't need to stress and worry about the temporal changes to their environment. When hardships hit them, I don't need to wrap them in sheep's wool. While it's important to monitor the influences that engage my boy's lives, God does not need me to bring them to Heaven. He can just as easily mold them into Godly men without my help at all. Again, that does not mean I don't seek Biblical and teachable moments or neglect my maternal responsibility, but it does mean that I have to stop thinking so highly and mightily of my motherly instincts. No matter how well or how poorly I live in this world, God can still use everything for His ultimate purpose and glory. That kind of power and love only fuels me to live closer to Him. I'm in awe of how well God loves me despite my own pride. We must remember that no matter how life changing an event may seem, it does not compare to the moment that a person softens to the whispering of God's voice. Once we respond to it, nothing in our past, present, or future matters. It's is finished and decided, and that will change everything.

As we live this quiet season at home, I am choosing to look for the good in every moment I'm given. Who knows how many more I'll get....

The bean counter... An amazing rainy day activity. He could pour them all day long.

He keeps asking when we can do "shaving cream activity" again.

I remember doing this in elementary school on the last day, and it was by far the best day of the year!

While I was focused on Levi's physical therapy last week, Silas called everyone's attention to what he did.... that's my organized child for sure!


This is Levi's staple sleep position. Tummy time with strong arm down, and weak arm up.

I heard some giggles after I came back from putting Levi down to nap. Then saw this little man pretending to be his brother. Who could resist that face? Good thing I told him babies can't have cookies or else he'd never want to grow up.

~Mighty Buster

Tuesday, September 1, 2015

Grow, grow, grow


There are days that I miss her something fierce, but then again there were days like that when she was here on Earth because she was usually a continent away. Yet, the idea that a Facetime or phone call was always an option put my heart at ease. Yet, I continue to thank God for the lessons Kyra taught me that resound in my current memory.
When she heard the term "clean diet" this summer, she asked me to explain the fad to her. After a brief blundering definition, she said, "Katie, that's just how everyone eats in Italy." She loved her Italian home because God gave her a heart for it, but also because it was easy to live simply and purely. While she commented on the filth of the Roman city quite often, she also loved walking everywhere and learned to love the long-established rituals of olden days, including hanging her linens to dry, kneading dough, and buying fresh ingredients for each day's consumption.  I remember her telling me that having three girls had taught her the importance of how we portray ourselves to our children. Kyra told me that besides an additional walk for health purposes, "exercise" typically stemmed from our own vanity. Wow.... that had me pondering a bit.

I'm continuing to see my own sin in preoccupation for the temporal. Why is it that we feel the need to control every aspect of our lives? Why do we wait for a shin splint or sprained ankle to get out of our exercise routine? Why do we wait for a stomach bug to change our eating habits or fast? Why do we wait for New Years to make resolutions? Why do we wait for a tragedy to reach out to people we love? Why do we eat whenever we are hungry and diet whenever we feel overweight? Why do we wait for children to rob us of sleep instead of waking up early just to spend time with God or staying up really late just to eat french toast with our spouse? Why do we continually wait for our external circumstances to change our routines?

I am not saying that routine is wrong. In fact, God is a God of order; He designed the earth to have days and nights, and simple structure brings simple peace. Yet, I think it's wrong to move about our lives never questioning why we do what we do. I think it's wrong to wait for life to force change on us, instead of looking to change a few things ourselves. When we look to change and grow on a continual basis, we begin to lose our lives, and "whoever loses his life for me, finds it." There's so much freedom in seeking to be continually "Spirit-led." In other words, when we let God's Spirit direct and drive every aspect of our lives, we look a whole lot more like Christ.

In honor of my sweet, simple friend, I attempted some homemade bread, which was delicious (and so much fun for Silas to punch!)

I am continually grateful that Levi has changed our lives in so many good ways. He continues to give us all a better perspective on life, and we love watching him grow in his own unique ways.

Some of our "homework" for feeding therapy includes tiny drops of milk or water in his mouth. He can swallow them, but it's an enormous amount of work. It exhausts him just to take down a few drops! Imagine letting your saliva build up just so you don't have to swallow it all the time because it's so hard!

The "suck, swallow, breathe" lesson is a bit more challenging.

It is great to see Levi lifting his weak arm, but time will tell whether we need a full surgery on his hand. Honestly, from all I've taken in these past 6 months, it's not the end of the world if he has a weak hand and a g-tube, but we continue with our "homework" for therapy on his hand too!

As Silas got his first seasonal cold this weekend, (and we hope Levi doesn't) I found a great pinterest idea for cleaning his toys! And he actually loved taking them all out and putting them away! 
Let the cleaning lessons continue!
Someone got a little too comfy during hide and seek.


As you can see, Levi doesn't love going to see the orthopaedic doctor. He now HATES when someone tries to hold his legs down, but you can also see that his left leg has been corrected simply by three sets of casts, the right leg (which is the weak side of his whole body) continues to stay turned in. We will most likely be looking at the standard heel clip surgery and braces on his legs in the coming months. All seems to be quite normal for clubbed feet, and hopefully it will continue to make our little Levi grow stronger!

Growing Smiths,

~Growing Buster