Let me just take a few moments and brag on my sweet Malachi.
Malachi is intelligent, opinionated, and so unique. When people take the time to get to know him they see what a normal little boy he truly is inside. He is mischievous beyond belief and has a very tender heart.
As I have told you before, watching people truly SEE him is one of the best feelings in the world. But with the addition of Levi into our chaotic world I have been guilty of not giving Malachi the opportunity to “talk” to me and give him a voice.
This week I have been trying to be a more conscientious mother and take the extra time to give Malachi more choices in his day. I always want him to know that I see him and value his opinion.
Malachi has been so excited this week at all the choices he has been getting to make. We do the typical clothing options, food options, and toy options but I want to let him make bigger decisions too. One night this week as we got ready for bed I asked Malachi if he wanted to sleep in the big bed with mom and dad like he usually does and he quickly signed NO. This caught me off guard as he has been sleeping in the bed with us since we came home from the NICU with Levi last March. We had been sharing the bed at the Ronald McDonald House together and it just became a habit. It never occurred to me to offer him another option.
So I asked him if he wanted to sleep in his own room by himself and he squealed while signing YES YES YES! Each night this week he has chosen to sleep in his own room again, and we have made sure to celebrate his big boy decisions each night.
In true Malachi fashion, his brain has been locked in on a new time to wake up each morning. This round he is stuck on 4:04 and stays up until about 6:00. His brain fascinates me so much.
Both of the boys have been amazingly flexible this week with our chaotic schedule. We had 5 soccer games in 6 days, 6 medical appointments, and lots of activities with the youth group.
Jake and I are pretty good at switching out our hats for each of the roles we play, but this week we had a lot of overlap so we had to divide and conquer. Saturday morning Jake had to get 21 soccer girls to a tournament and I had to get 16 of our youth group teens + my own kids to the local food bank to fill food bags. Yes, I could have easily found someone to go in my place and supervise the teens but we feel so strongly that the kids need to see examples of choosing to serve over the more entertaining aspects of life.
As you can also see, Malachi got a haircut this week. But back to the food bank, Levi became the self proclaimed supervisor, distracting them as much as possible haha.
Afterward we headed to the field to catch the rest of the soccer game. I took a ton of photos this week at the games and couldn’t decide which ones to post so you get to see them all! Levi manages to get filthy at each and every one- I think he just wants to guarantee that he will get to stay up later to get a bath each night…he loves his bath time.
Malachi’s wild raptor has been such a blessing this week as it gives him an easy way to get from the car to the field and also provides a comfortable place for him to sit during the game.
Side note- the group that modified Malachi’s ride created something called “The Malachi Movement” and are now adapting these for special needs children all over the United States! They are currently working on some for three local families who happen to be buddies of ours through the special needs world, and I can’t wait to see the smiles on their faces.
Levi has been so active lately, running everywhere he can. He is completely done with the whole crawling concept and never stops. As he becomes more active we are starting to hear his stridor come back, which is a reality check to me that we are still in need of a miracle. I have caught my heart mourning a few times this week as I watch him with a soccer ball and realize that sports might not ever be in his future. If his vocal cords don’t wake up, doing anything active that could restrict his breathing can be life threatening for him.
Obviously I don’t care if he plays sports, but the idea of having to have that conversation with him one day makes me really sad. Life will already be different for him as we live our beautifully unique life with Malachi- I just crave some normalcy for him.
But Levi’s talking is improving each day! Tonight I put him to bed and said “I love you Levi” and he quickly responded “I love you too bye bye” as he laid his head down. Jake was in the room and we both looked at each other completely shocked to hear such a complete and appropriate sentence. To God be the glory!
In a few weeks I will be going to a women’s conference with a group from my church that will require me to be away overnight. I have so much anxiety about those 30 hours. Jake is an excellent and capable father but there are so many things in our routine that have just always solely been on my to-do list.
In an effort to help ease some of the anxiety I have been having to put Jake through a boot camp of sorts making sure he knows where all of the medical items are what to do in case of emergency. On Saturday I had him swap out Malachi’s g-tube so he would know how to put one back in should one of theirs pop again. Malachi’s is easy to switch as he is still and calm. Levi decided to toss the challenge our way on Tuesday night and popped his out when it was unprotected during his bath time.
Getting his back in is at least a two man job but we managed to get it back in quickly. We will just pray Jake doesn’t have to deal with that emergency while I am gone!
The truth is, I am most anxious about bed time as Jake is a heavy sleeper. I am up and down with the boys several times a night, checking g-tubes, fiddling with pulse ox machines, un-kinking Levi’s tubing when the feeding pump alarms go off…on a typical night I am up 6-8 times between 11-4:04 when I wake up with Malachi for round one.
Malachi wakes up every single morning, no exceptions, with a tummy ache which quickly sparks seizures if you don’t address it. It takes at least an hour but more often two hours to get his stomach to a safe enough level for him to relax and maybe go back to sleep. That process is truly an art form haha.
I guess I just have to give those worries about the conference weekend to God and try to capitalize on the uninterrupted sleep…I am not so sure my body will recognize what to do!
This week God has showered our family with blessings. From little gestures to mind blowing generosity from strangers, we are reminded again and again that God is holding our family in the palm of His hand.
This week marks the one year anniversary of our buddy Johnny going to heaven in a motorcycle accident. As this week has approached I have found myself running a myriad of emotions. We have the privilege of being involved with his children’s lives and each time I look at them I can’t help but see Johnny.
When we first met Johnny ten years ago he was a gruff and angry man. But as the years went on we watched a beautiful transformation happen within in. His anger melted away and God replaced it with such a beautiful spirit that drew you to him.
Johnny lived a radical life for God. He was uncompromising in his faith, especially over the last few years. He craved the gospel and spent time pouring over the words of Jesus- he would come over to the house and talk for hours about verses that pricked his heart. When you talked to him about God he had a unique fire in his eyes.
But there was one verse in particular that he locked in on and couldn’t ignore. I literally cannot read this verse without hearing it pour out of the mouth of Johnny, that’s how much he recited it.
James 1:27 Religion that is pure and undefiled before God the Father is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.
This week I have been focused in on the word “unstained”. I can’t stop saying that line over and over again in my head.
Truth be told, Johnny’s life was far from unstained. Johnny had a past and he fought battles in which the world won. But we are never so stained that God turns away from us. The Holy Spirit continued to pursue Johnny’s stained heart and he allowed himself to be washed clean by the grace of God.
How often do we knowingly open our hearts to the stains of the world and welcome them to become a part of our lives? We even start to see our worldly stains as normal and acceptable, as we look around and see stained Christians all around us. We start to normalize and justify our stains instead of desiring for God to wash them away.
As children of God we are called to keep ourselves unstained. Is that even possible? Our sinful natures are continually drawing us to the things of this world, re-prioritizing God’s place in our lives. I dare say that it is impossible to remain unstained from this world.
So is this verse challenging us to something that we can never truly attain?
Regardless of our human efforts, the stains will continue to come. But the grace of God is so powerful that it can erase every stain from our lives, much like we saw in Johnny’s short life.
But here is the catch….
Do you see the stains? Do you hate the stains? Do you WANT to look different than the world?
God’s desire is that we stand out and look different than the world. His desire is that our countenance that is white as snow would be like a lighthouse for others who need to come and know Him. When we start to blend in with the world we lose that lighthouse effect.
My prayer this week is that God continues to give me the courage to pursue the unstained life. Yes, I will undoubtedly fail at remaining unstained, but the constant pursuit of that life is what pleases the Lord. I pray that God allows me to see my stains and washes me clean yet again with his unlimited grace and mercy. And I pray that God gives your heart the same desire.
Please pray with us this week for miracles. Pray for good reports for our upcoming appointments and safety as we travel back and forth to the hospital this week.