This seems like an odd and over-dramatic statement but stick with me…
This is the first week since Levi’s birth that I have felt like I have been able to claim a bit of my identity back. Don’t get me wrong, I love my identity as Levi and Malachi’s mother. I will gladly sacrifice all hobbies, luxuries, and moments of alone time for them and their needs. But our world requires that everything orbit around medications, appointments, surgeries…I have forgotten what the old Leah looks like.
This week I read 27 pages from a book- a non-medical, non-special needs book. I sat in the sunshine alone for 45 minutes. I ran a soccer practice while Jake stayed home with the boys. I went to work alone and cleaned out filing cabinets. I ran a few miles on the treadmill. I rode in the van with the windows down!
I took a deep, much needed breath.
The boys have several routine appointments each week but this was a vacation week for some of his therapists. We only had 4 appointments, all crammed into one day. That left us with 6 days of normal family time! What a blessing!
We spent most of those 6 days at the house, Jake and I taking turns for some “me” time. We would each take a chunk each day to do whatever we wanted- nap, read, leave the house for a bit.
The boys both really enjoyed the down time as well, Levi into everything he can get his hands on and Malachi as his ready and willing accomplice. Levi is getting good at rolling Malachi into different rooms and climbing him to reach things he knows he shouldn’t have. I was cleaning one day and heard the distinct sound of an air register being pulled up from the floor and a loud thump of something going into the duct work. The culprit was gone by the time I made it over there and I had to spend several minutes trying to figure out how to dig an unseen sippy cup from the vent. If you come by our house, ignore the new painters tape on all the vents.
I know I post a whole lot of pictures of Levi sitting on Malachi. It is because they are inseparable. It doesn’t matter what chair I put Malachi in, Levi will climb Mount Everest to get into his brother’s lap. I always ask Malachi if he is okay with Levi sitting there and he almost always signs yes. Levi brings toys up with him and shares so well.
Here is a silly video of the two playing nicely:
Malachi is able to communicate so much without saying a word. On Saturday we headed to his soccer game and his Mickey Mouse DVD accidentally got paused unbeknownst to us. By the time we got there he had the most sour look on his face. I asked him “Malachi, are you okay?” and he signed an angry NO. We didn’t know about the DVD issue so we went through all of the body parts that could possibly be hurting him…”Is it your tummy?” NO “Is it your ear?” NO. When we figured out the DVD hadn’t played we asked him “Is it because you didn’t get your cartoon?” and he signed YES and burst out crying.
I was proud of him for communicating to us, but also a little bothered that we are raising such an entitled six year old haha! We are going to have to start working through those emotions when he doesn’t get what he wants. It breaks my heart that he got so emotionally frazzled and couldn’t communicate that frustration building in him.
He stayed pretty cranky even after the game started but scored a goal within a few minutes and popped right back to his silly self.
It was his last game for the season so he got a shiny medal, something he was so proud to get.
Malachi’s number one fan! He finally caught on to the game, clapping avidly whenever someone kicked it into the net.
When you spend a week mostly at the house, there isn’t a whole lot to blog about…
We took some selfies.
Levi worked on his walking. Here is a video of him practicing with dad. Ignore the onesie wedgie:
Levi also learned how to make farty noises on the couches. This one was interesting to us as neither of us modeled the new trick:
Malachi played with all kinds of toys, using his imagination to pretend like they were alive and real. His favorite toy to play with this week was his switch adapted jack-in-the-box because it terrified baby Levi.
We watched the Lion King, Beauty and the Beast, read lots of books and made up lots of games. Jake and I trash talked our way through Jeopardy each night and sang karaoke for the boys. We just felt so….normal.
We looking in the backyard for more bears and watched the birds chase each other. We tried new foods and made a lot of old recipes.
Levi made some great progress this week with his sign language, signing “more” on his own several times when he wanted more food. He is also folding his hands when we pray, which makes my heart smile. I tried to snap a picture without him catching me during our dinner prayer tonight.
We knocked out lots of medical phone calls, fights with insurance, and appointment/trip planning for the next several weeks. We are still sorting out our Cincinnati appointments for our week long visit at the end of July.
Malachi had some temperature regulation issues this week, running a fever for two days. We think it is likely brain related because he isn’t showing any signs other than sneezing. We will continue watching him closely just in case.
Tonight Levi fell headfirst (for the second time this week) off of Malachi’s chair and hit his head on the tile floor. He was justifiably upset and hysterically crying which did cause his color to change quickly. I am sure if I had him hooked to the pulse oximeter at the moment that it would have shown a desaturation which bothered me from safe breathing standpoint. That is a big part of the discussion we need to have with his surgeons when we go to Cincy. While he is safe the majority of the time with his oxygen, what kind of damage will those brief moments have on him?
This morning Jake was given the opportunity to preach during the morning service. Every now and then when the preacher goes out of town he asks Jake to fill in for him. This used to make him extremely nervous, but this time seemed different. He seemed so confident in what God was telling him to speak about so I was really looking forward to hearing what he had to share. He spent hours preparing throughout the week.
Levi has been absolutely wild in church lately and sobs until he vomits if I attempt to leave him in the nursery. We made it through one verse of the first praise and worship song before his restlessness hit so I took both boys out into the lobby area for the rest of service. We are in a very rural part of Tennessee where technology hasn’t really taken over yet, but several weeks ago I asked them to run a speaker into the lobby for moms like me who have to sneak out with young children.
When Jake started preaching, both boys got very still and quiet. Levi crawled across the lobby and stared, mesmerized at the speaker that his daddy’s voice came out of.
Malachi sat as still as could be in his chair, clinging to every word. They love their daddy so much! And I am grateful that Jake loves the Lord and leads our boys toward God through his actions and heart.
The verse I want to share with you all this week comes from John 13. In this chapter Jesus is with his disciples for the Last Supper, the final time he will meet with all the disciples before he is arrested. Jesus got up from the table and began to do something that none of them saw coming- he began to wash their feet.
I mention this often, but I am a genuinely awkward person. I don’t really know how someone morphs into “awkward” but that transformation happened pretty early on in my life haha! And when you know you are an awkward person, it just seems to breed awkward moments.
Whenever I read about the story of Jesus washing the disciples feet I cringe, just imagining how uncomfortable that moment was for the disciples. To see the person that you respect and admire take on the task of a servant…what a profound thing to witness. And add in the beautiful and pure heart of Jesus, doing that task simply out of love. No motives, no ill-intentions, just pure love for these men.
Other than using my imagination, I find myself unable to relate with this particular scripture chunk. It isn’t common practice for us to wash anyone’s feet. Sometimes when I read scriptures like these, that are difficult to relate to, I find myself breezing through them.
But there is one verse in there that pulled at my heart this week. Jesus comes to Simon Peter to wash his feet and he says in disbelief “Lord, are you going to wash my feet?”
Jesus responds in verse 7 “You do not realize now what I am doing, but later you will understand.”
I got chills tying that statement. I have such a visual of Simon Peter looking down at the Lord next to his dirty feet. I see Simon Peter’s face turning red with shame at the filth he has on him.
But the filth doesn’t even phase the Lord. Our filth doesn’t even make him flinch. He sees those dirty parts of our lives, the parts we try to hide, and he bends down to gently wash the filth away. Only a loving God would do that.
There are so many times in my life that I have found myself in Simon Peter’s place. Again and again God has come and found me in my brokenness, my sadness, my sin, my pain and simply cleaned my tired feet and soothed my broken heart.
I can almost visualize the kind eyes of Jesus looking up at me and saying “You do not realize what I am doing, but later you will understand.”
God is all knowing, but our human hearts can’t handle the power of that trait. So as uncomfortable and awkward as it may be, sometimes we have to sit in that seat and allow Christ to remind us that later we will understand why our feet have to walk the paths that they do.
One day I will understand why God took us across the curvy, rocky, sharp paths of Malachi’s journey.
One day I will understand why God put mountains in Levi’s path but hasn’t yet given us the ability to move them, despite our desperate please and bushels of mustard seed faith.
One day I will understand. But for now I am called to sit in that seat and witness the love that Jesus has for our family, as he sees our wounds from the journey and longs to soothe them with his tender heart.
I am called to take that love that Christ has for the Carroll family and share it with others. I am called to minister to other weary, dirty-footed travelers that we meet along the way. I am called to share with them the hope we have in Christ.
I hope you let Christ wash your feet this week- even if you are awkward like me 🙂
10 thoughts on “Later You Will Understand”
Thank you for sharing your beautiful pics and videos of the boys. I love Malachi belly laugh. Cheildren with special needs can all teach us how to enjoy what we have. Your message was inspirational.
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May you have big blessings this week. Malachi and Levi are growing and changing so fast.
THANKS FOR SHARING
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Thank you for sharing, Leah! I totally understand loosing your identity after having kids and especially special needs. I found myself debating canceling a few appointments and therapies myself this week lol May Gods Grace be with you and your family.
What a beautiful post as usual…love these thoughts and God laying this n your heart and your willingness to share! Love it all…such a sweet family you have!
On not n;)
I have walked in your shoes. I have two sons, my oldest son had a very difficult time in life. He was diagnosed with cerebral palsy. His little brother was 4 years younger and they were very much like your boys,always together. Life does throw us a curve sometimes, but know that God has a purpose for you. I lived the life of a special needs mom and balanced the life with a healthy son as well. The biggest blessing of all was when a stranger told me about a school that completely changed things for my special son. It is The Institute for Advanced Human Potential, in Philadelphia. After I got help from them we were on the road to seeing my special son live a mostly normal life. Today my sons are both grown up, 30 and 26. My special needs son calls me almost every day. As for me, I’m 57 and a junior in college majoring in elementary special education. God decided that I needed the hands on training with my own child first. You will find joy and peace as long as you seek God purpose for you. Your time will come. Feel free to contact me if you have any questions or just want to chat.
God loves you dearly,
I sooo enjoyed this. Your life and family are amazing. Leah, I raised 3 children that were NOT special needs however their father was an angry abusive hateful man that finally left after years of abusing us. I prayed for him for years but God will not violate free will….so if you want to be hateful and miserable….well God will let you. You have an awesome husband….Jake is the name of my youngest son. We determine our own happiness. My husband had 3 normal children and hated God…was NEVER thankful. You, Jake and the boys will have an amazing life! So glad I found this story.