Ten days. There are just ten more days until Jake goes back to school and we are back to increased caffeine intake requirements and a very tired momma. Routine changes are difficult for our family, but like we always do we will figure it out.
Malachi has been magnetized to Levi these days, rolling until he gets to him. It has been fun to watch him engage his muscles to go somewhere! I guess he just needed the right motivation.
For the last few days we have had Jake’s family in town for a visit and we packed all kinds of adventure in- playgrounds, swimming, the aquarium, soccer games, golfing.
But the best part of all was getting to spend time around my nieces and nephews. Jake and I are always completely fascinated by “typical” children. We could just sit and watch them for hours as they process the world and interact with it. And Malachi was in heaven listening to all their sweet little voices. There are now 7 cousins ages 6 and under on Jake’s side and when they are all together it is like music to his ears.
As you can see from the picture above, the aquarium was a lot for little Levi to take in.
The cousins were obsessed with Levi, and he was just as obsessed with them.
Prior to our guests coming into town we tackled 7 appointments this week. I also officially scheduled Malachi’s feet and hip surgery for the week of Thanksgiving, hoping to get it done while Jake is off work and also hoping the follow up appointment will hit over his Christmas break. If Levi’s upcoming study goes well we will won’t have to go back to Cincinnati until December so it will be nice to have one surgery done before the next kid is due for his.
Malachi had an exceptionally great week at swim therapy!
I took a video for you:
He hasn’t been doing so well on the horse, shutting down quickly and not wanting to do his therapy exercises. Just by watching him I can tell he is getting a little bored with it so tomorrow we are going to take his communication switch and see if that helps any.
Levi is continuing to work on tastes and small bites of food, and that has really motivated Malachi to eat more bites. We have been making sure to explain to him that he gets “big boy bites” and Levi gets “baby bites” and he is totally buying into that concept. He wants WHATEVER I am eating and tried so many foods this week with success. He even ate half of a popsicle which he would never attempt before.
Today at lunch I ordered him some applesauce and he continued to tell me he wanted more. After he ate half the bowl he signed to me that he was done so I offered some to baby Levi. When Malachi heard that he immediately signed NO. I asked him if he would share his bites with Levi and again he adamantly told me NO again. When I asked Malachi if he wanted more he said NO. He just genuinely did not want to share with brother!
I know this may sound odd but these little glimpses of brother jealousy make me so happy. And if you are wondering- Levi did in fact get the applesauce. While we want to encourage Malachi to communicate we also want him to understand that he has to share with his brother haha.
Even more interesting is that Malachi was so happy and excited to share his toys with his cousins all weekend! Everytime we asked him if they could play with _______ he would sign YES. I guess it is just a brother thing.
As I mentioned before we took the crew to the aquarium. In special needs parent world this is a bigger deal than just a simple outing with the kids. Before we go to a place like this I have to mentally prepare for the day, knowing that I am choosing to take them to a place where we will be gawked at. While it shouldn’t be that way, it inevitably is as many children have never seen a boy in a wheelchair.
Malachi can see much better in the low light of the aquarium. We can always tell when he sees something for the first time because it brings him so much joy!
And with each gawking child comes a parent who is scrambling, totally unsure of what to say to get their kid to stop staring. We truly want Malachi to live as normal of a life as possible, so we just acknowledge how it is going to be and prepare to be “seen”. It is always a reminder to me though about how we (speaking of you and I collectively) choose how we react to things. I can choose to be bitter, angry, or hateful to these children as they point and gawk. Or I can choose to see innocence and remember that these children live in a world untouched by disabilities…and isn’t that a good thing? I would have been exactly like these children when I was younger.
But we choose how to react to life. All facets of it…the good, the bad, the ugly. Every reactions is a choice.
This morning at church we had a bluegrass band come to play for us. Both Malachi and Levi were inspired by the music and were WILD. Malachi was dancing around in his own unique way and Levi was soaking it all in with wild and excited eyes. At the end of the service the pastor prayed and as he was praying Malachi started yelling things out. I quickly shushed him and said quietly in his ear “We are praying to Jesus” and then I immediately felt regret for shushing him.
Malachi is so aware, and has always been very intruiged by prayer. I try to narrate as much of life as I can to him so he can tell what is happening around him, and I always make sure that he knows when we pray that we are talking to God. His whole body language changes when someone prays and he sits upright, eagerly clinging to the words.
And as I heard him yell this morning during prayer I can’t help but wonder if Malachi was trying to talk to God. And how that sweet little voice must have brought so much joy to God’s ears.
Here is a video of Malachi and daddy playing on the playground this week:
I have been trying to decide on a good devotional thought for you all tonight, but the truth is I myself have been struggling this week. I can’t seem to stop thinking about how my identity has transitioned over the last few years and I am subconsciously mourning over it.
I started playing soccer in middle school and it became such a huge part of my life. I love the sport so much! When I started teaching in 2008 I began coaching and for the last 10 years it has remained a big part of my identity. This week we organized our annual “community game”- we ask several adults in the community to play on a team against our soccer girls. It is always a lot of fun to watch and it gives the girls a chance to play together before the season begins.
Last year I was pregnant and couldn’t play and I was SO looking forward to this year’s game. Game day rolled around and I geared up, ready to play the sport I love so much. But as the game went on I found that I was distracted by my children (who were being supervised and doing great with family on the sidelines). And things just felt so…different…
It really bothered me. And as I processed the “why” I realized that through the last five years so many things that I thought were my identity were disappearing.
Friend of _________. And now we haven’t talked in months. I did a lesson with the youth girls on friendship two weeks ago and as I talked to them about the topic I realized that I don’t have a whole lot of close friends. I have lots of acquaintances and I can tell you the names of the people I pass on the road in our tiny town but I don’t really have any close friendships right now…life just doesn’t allow time for those.
Avid book reader. And haven’t cracked a cover open in years. I have two books on my nightstand that I am so incredibly eager to read, but can’t justify spending the one hour of free time I might get each day throughout the summer to read a book. Most of those chunks of free time are spent napping or showering.
Special education teacher. But haven’t been in a classroom setting since the week Malachi was born.
Athlete. And haven’t worked out since pre-pregnancy with Levi. I had finally worked my schedule to allow some trips to the gym with Malachi and two weeks after I bought the gym membership I became pregnant with Levi.
Dog lover. And our sweet Boomer is still living with Jake’s parents in Ohio as we aren’t comfortable with an animal being around all of Levi’s cords. Malachi misses him as much as I do!
There are so many things that have always been my “identity”…and they are just simply gone. And for some reason this week I have been really struggling with that.
And as I always tend to do- the more I sat on the thoughts the more my rational side started to take over. I was reminded that even though my roles have been changing and my identity has morphed dramatically over the years there is peace knowing that one thing has never changed:
I am and always will be the daughter of a King.
And when I remember this and then look at these things I am mourning over they start to seem almost silly. My identity needs to be found in Christ and in Christ alone. And through that life an even more important identity will be established as I become an image bearer of Christ. And THAT should be the vein that all of the other adjectives I strive for should flow through.
When we focus on rooting our identity in Christ alone we allow ourselves to be used by God and not try to put Him in a box. God can use us to do so many great things- things we never dreamed we would find ourselves doing- if we surrender our ideals to Him. If we allow Him to guide us step by step through life then it doesn’t matter what tasks you are or aren’t doing. All that matters is that you are bringing the light of God to whatever situation He has brought you to.
John 15:16 “You did not choose me, but I chose you and appointed you that you should go and bear fruit and that your fruit should abide, so that whatever you ask the Father in my name, He may give it to you.”
So I guess the lesson for me this week is that I need to find contentment in my job role of being “Fruit Bearer”. I have been chosen and appointed by God for this life that He has given me and that should be all I need to hear!
Identity crisis over for now. So my tiny violin can go back into it’s case for a bit haha.
Please be in prayer this week for Levi’s vocal cords to wake up and for Malachi’s brain to reconnect. Pray that God chooses this week to be the one where we see miracles for both boys. I continue to speak “Ephphatha” over Levi’s airways and speak restoration and wholeness over his brain- will you join me in that prayer?
And may God speak to you this week,