Our family has collectively breathed a big sigh of relief…Jake is off for summer break! This sounds dramatic and odd but this is the happiest my heart has been for a long time. I needed the summer break desperately to help reset a bit.
Malachi has been Levi’s “walker” as he pushes him all over the house. Today I told Malachi that he was helping teach Levi how to walk and grinned and put his arm around him to “help” some more. And my heart melted. He loves being a big brother!
Here is a video of one of their living room field trips:
I figured we would kick off this entry with a story. We drove into town this week for an appointment and when we got there we found out it was canceled. Bummer! We had already made the 30 minute drive and planned our feedings around the block of time so I decided to capitalize on our trip by going to Target. Usually when we go it is for the essentials only but after my shopping I walked by the women’s clothing department and saw some tops that I wanted to try on.
We waited as patiently as possible for the handicap fitting room and I promised the boys mommy would be super fast! As I wheeled them into the stall Levi caught a glimpse of himself in the mirror which was reflecting another mirror. I guess seeing so many Levi’s and Malachi’s was too much for his brain to handle and he went into full fledged meltdown mode.
He has a shrill scream when he is scared and mad that sounds eerily like a chimpanzee and he went full chimp mode on me. I was holding him trying to calm him down while simultaneously trying on tops as fast as possible but there was no consoling in the stall of many mirrors. Every time he looked behind him to see if all the other Levi’s and Malachi’s had left yet he was frightened yet again- rekindling the chimp screams.
After 30 seconds of that nonsense I started wondering what in the world I was thinking! My brain was yelling RETREAT!!!! I could hear the other customers making comments about what was happening in handicap stall #1 and my face started turning red. We scrambled out of there, Levi clinging desperately to me and Malachi hysterically laughing at his brother’s ridiculousness. I awkwardly held a screaming Levi while pushing a double stroller/wheelchair and pulling a full shopping cart up to the register.
Moral of the story- I will now be avoiding all environments with more than one mirror on the wall. And shopping online for clothes.
We run pretty non-stop and fill our plate as much as possible, but each year we give ourselves a few weeks at the beginning of the summer to catch up. We have already accomplished more in the last three days than we have been able to in the last several months. Lots of house projects, cleaning, and much needed organizing.
Which means lots of toy playing to help occupy the boys. Malachi’s new favorite game is rolling cars off his tray at Levi. We have to sit him up high if we are going to leave the room, even if for a few seconds. Levi will scramble over and climb on Malachi any chance he gets. Usually this is okay but at one point this week he got a little too rough with Malachi and Malachi bit him on the chest in self-defense.
To recap a bit, Jake and I built a handicap accessible home for Malachi and moved in when I was very pregnant in October 2017. Levi came about 4 weeks later and we lived in the Ronald McDonald House for about 5 months. When we came back home in March 2018 I still had boxes that needed to be unpacked and a huge list of projects that were supposed to get done a long time ago.
I am absolutely determined to start tackling some of those projects! We have been prioritizing them and went to the hardware store this week to pick up some things. Malachi was in love with the place, listening to all of the saws and noises. Levi was terrified out of his mind (chimp screaming again) and desperately reaching out to hold Malachi’s hand.
I took a few seconds of a video for you as we were checking out:
Our week was full of lots of noteworthy things for the boys. The biggest one being Malachi’s graduation from kindergarten! I talked Malachi through the idea of graduation and as he listened to the details he got a big smile on his face. Malachi loves compliments and encouragement from others so when I got to the part about them saying his name and everyone clapping he lit up. He also got to wear a special shirt he and his inclusion classmates made, and he was very happy about that.
Jake drove over from the high school just in time to help wrangle Levi and see Malachi’s big moment.
After the ceremony his teacher gave him some awards in class, and one included a sucker. The smile we captured is one of my favorite types of Malachi smiles.
We are so grateful to live in a small community where everyone is rooting for Malachi as much as we are. And the kids are so incredibly kind to him.
Jake did his annual Redneck Regatta project with his Algebra 2 class. They have to design, scale, and build a cardboard boat that successfully floats a designated length of the river. It is always fun to watch as many of the boats usually don’t float (meaning they did the math incorrectly). The boys and I got there just in time to see Jake and another teacher racing two of the successful boats. I thought you might enjoy watching a quick clip:
We held the high school girl’s soccer tryouts this week and closed out the high school boys soccer season with their awards cookout. The boys love tagging along. Malachi even got to take his wild raptor to the cookout!
And Levi got to practice driving a real car with his buddy Tanner. Don’t worry- it was not on a real road!
Side note- look how great that eye looks! It has finally healed up from surgery! And nice and straight.
We tackled lots of appointments this week, including a big trip to the GI doctor. Both of the boys have g-tubes so nutrition has to be followed and calculated pretty closely. With Levi becoming more mobile he is burning lots of extra calories and has been losing weight so we have to adjust his caloric intake but also need to be cautious about giving him too much formula in a day.
I have been trying to transition him from continuous feeds to bolus feeds. On continuous feeds he is hooked to his feed bag 18 hours a day which is getting more and more impractical with a busy baby. So this week we are trying to feed him all night while he sleeps and then get the rest of his calories in him with 4 feeds a day that we pump in over the course of 30 minutes each. His stomach isn’t used to that much volume at one time so we are easing into that goal, but so far so good.
And now that the vocal cords are moving he is at less of a risk for aspirating if he does vomit. We are also trying to really push a sippy cup. He is scheduled to have a swallow study next week and in order for that to be successful he is going to have to be able to drink a small amount of barium tinted liquid. And be in a cooperative mood. I am going to go ahead and predict that the whole thing will be a nightmare haha.
So back to the GI doctor updates…Levi is just over 21 pounds (at 18 months old) and Malachi is at 29.5 pounds (at 6 years old). Rewind to life before Levi was born- Malachi was a whopping 40 pounds. He lost 15 pounds while we were in Cincinnati trying to manage the stress of both children (still feel so guilty about that one even though it was unavoidable). We have been trying to get Malachi back to a healthy weight.
The appointment took quite a long time and Levi’s attention span has been dwindling faster and faster. We found a winter hat in the bottom of their double stroller to keep him entertained.
Malachi and Levi’s bond continues to grow in a special way. Levi has started carrying toys up for Malachi and him to play with together. I had another heartwarming moment as I watched Levi trying to play peek-a-boo with Malachi. He knew Malachi couldn’t hold up the blanket so he did it for him…I caught a video of it to share the sweetness with you all:
I have always noticed and admired the siblings of special needs children. They don’t see the world like everyone else. They see through labels as if they don’t exist. Levi is going to grow up with such a special perspective and I can’t wait to have those unique conversations with him one day. May he always see the value in the Malachi’s of the world.
I read a quote by Charles Spurgeon, a nineteenth century British preacher, and it has been repeating in my head all week.
“I have learned to kiss the wave that throws me against the Rock of Ages.”
Sometimes I think about where my life would be right now had things gone the way I had planned. I would be giving birth to boy #4 this month. We would still be in our log cabin living a modest life that sustains itself on one income so I could be a stay at home mom. My plan was to go back to teaching when the youngest son entered school. I envisioned my days full of riverside picnics with friends, craft time, healthy home cooked meals, and lots of fun with my brood of boys. Healthy boys, free from diagnoses and pain.
But I got hit by that wave that Spurgeon talked about. That unexpected, unforeseen thing that escalated things in my life towards a world I didn’t even know existed.
I sometimes resent that wave. In fact, I get mad at that wave more frequently than I care to admit.
But more and more these days I find myself kissing the wave.
As much as I can envision my life how “it was supposed to be”, I can use that same imagination and see where my spiritual life would be right now had I not encountered that life changing wave that threw me against the Rock.
While I had experienced trials earlier in life and had a solid walk with God, this new path has taken my relationship with Him to a level that I couldn’t have imagined. I see His mysterious ways with fresh, new eyes. I watch as the scriptures come to life in our lives. I hear Him. I see His hand work to prepare our steps.
And most importantly, I have realized how much I NEED Him.
Had the wave not hit I don’t know that I would have received the blessing of experiencing a life fully dependent on God.
The waves in life are brutal, nasty things. Their purpose is to upset, uproot, and destroy. Their intent is to smash you into the rocks and leave scars on your heart and soul. They are meant to defeat you and they are not of God.
But without those waves of destruction that the devil creates, we would not learn what it feels like to land in the arms of God.
So as I sit safely in the palm of His hand, knowing that He has ordered my steps in this chaotic life, I can often turn and genuinely kiss that wave.
Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”
This life that goes against everything that I envisioned is so much richer and more beautiful than anything I could have imagined. It has redefined the word “value” and allowed us to see that God places purpose in places where our human eyes see none.
My prayer is that as the years go by, and the waves inevitably continue to come in our family that God will help my heart be able to kiss that wave more and more, recognizing that it brings me closer to a mighty God.