As we inch closer to Christmas both boys are growing more and more excited. Malachi is very aware that there is a big present for him in the basement that we have been keeping from him for 2 months. And little Levi doesn’t fully know what is going on but he feeds off of big brothers excitement.
This week we met with some folks that are possibly going to help get an accessible area ready for the boys playset. Each time we arrive home Levi races over to the big crate with all the pieces and tells me that there are two slides and three swings. He is very excited!
Aside from a horse therapy session, the boys spent this week in the house. Boredom has definitely kicked in and with the colder weather we are running out of ways to keep them entertained. We watch a lot of movies, read a lot of books, and tackle a lot of projects. Levi’s mischief has kicked into high gear and keeping hands on Malachi and eyes on Levi is proving to be quite the challenge.
Since we aren’t around people much these days, when they do get to see someone outside of the four of us they are wild with excitement. Some of the highlights of their weeks is driving around and just being in the car for a bit.
On a total random side note, I have been worried about Levi’s eyes lately. When COVID hit, his eye doctor canceled our appointment indefinitely and I haven’t pursued reaching back out to them. But as I look at photos like the ones above I am starting to see a bit more wandering going on. At our last appointment he said it looked as though the brain damage Levi has also affected his optic nerve and that he would likely go blind in his left eye. I guess part of me doesn’t want to follow up and hear potential bad news. But then the mom in me wants to make sure I am doing the right thing and monitoring him closely.
One afternoon this week I heard Levi clanging dishes in the kitchen and went to investigate. I watched in fascination as he successfully unloaded and “put away” over half of the dishwasher. He didn’t know I was watching, and I definitely didn’t ask him to do that chore so it was extra sweet to watch him trying to help out. Oddly enough he put most things in the right place or near where they went if he couldn’t reach.
Here is a sneaky video I took:
Jake and I took advantage of his bonus week off from school and tackled some projects that we have had to put off. My van had been leaking a small amount of fluid. I didn’t feel comfortable taking the boys to a repair place for an undefined amount of time, and with Jake working my hands were tied. It ended up taking 2 repair shops and 3 days to get the repair sorted out but it feels so good to have that worry marked off the list.
I saw a meme this week that made me laugh, as it is so incredibly relatable to my life.
In my world I do a lot of pretending to help keep me sane. I pretend that our life looks a lot like everyone else’s. I pretend that other moms go through similar yet different struggles. I pretend like everyone has hidden and unspoken challenges tucked into their day.
And I do believe that to be true.
But when I really reflect on my motherhood journey with unclouded vision I see that I am simply not like other moms. And I am learning to be okay with that.
The cycles of grief that I have to deal with on a daily basis can be overwhelming. The holidays attach themselves to memories like a mark on a calendar of our lives and bring them to life again in my heart.
This was the week we were supposed to announce the gender of a child we miscarried in 2015.
This is the week we sold our dream home…well let me rephrase… this is the week our “dream home” changed from a log cabin to one with full accessibility for our child with high needs. We are so blessed to have built a home for our Malachi, but it also meant putting to death certain dreams as we took a realistic look at the future.
This is the week Levi made that lifechanging trip on an air ambulance to Cincinnati! But it was also the week that he coded in the NICU after arrival and I had to watch helplessly as they manually breathed for him until they could get him on a ventilator.
This was the week Levi had a massive surgery that ended up failing. Leading to another and another and another. He spent that first Christmas sedated and on high flow oxygen through a ventilator, unable to be held. I will never forget the helpless look in his big eyes that Christmas, and the gripping feelings of knowing I couldn’t do anything to help him.
This was the week we spent Christmas in a hotel room in another state eating granola bars and praying over our child in the unit and trying to care for our other high needs child with very limited resources. That year our Christmas miracle was getting into a Ronald McDonald house.
Our lives have been full of such beautiful moments. But it has also been jam packed with really hard ones. The mood I am in determines the lens I choose to look at each day. Most days I choose wisely, picking the lens that will give me a positive disposition. Other days I start with the right lens, but something throughout the day makes me feel justified in a quick lens switch.
This week I have to be honest with you…I have been struggling with focusing on the future. There is no happy ending when you are raising a severely handicapped child. Malachi is doing so well right now, but I am fully aware that as the years go by the medical issues will worsen. Physically caring for him will get harder. More surgeries are inevitable. And at some point he is going to be called heavenward for a complete healing.
I can’t describe how excited I am for Malachi to be spending life whole and healed in heaven. But my mommy heart aches for the struggles that still await him here on earth. And I struggle with mentally prepping for the emptiness life without Malachi will bring.
Oh, what a difficult balance this journey can be. These aren’t things I feel comfortable talking about with other moms. When I do I am met with looks of pity and silence, which definitely don’t bring me out of the hole I dig myself into mentally. Even speaking these to other special needs moms feels inappropriate as I fear I am planting these dark seeds in their hearts by speaking them.
Special needs moms can relate on SO MANY levels, but each journey is completely different. And has to move at it’s own pace. Warning moms of things that are yet to come dashes hopes, so instead we wait for those moments to come and offer open arms to the grieving mom.
So why the special needs mom rant? Why type that all out and share it with you all? I am confident that none of you are tingling with the warm fuzzies after reading all of that.
While your journey may look nothing like mine, there is a good chance that many of you are dealing with unique roads. You may be dealing with things that are overwhelming and like me, you don’t have anyone in your circles to pour your heart out to. And while sometimes I grieve that solitude I have come to see it as a hidden blessing.
The Bible talks so much about how we need to turn to God in these dark moments. For some that may be hard to do. But for some of us, God is literally the ONLY person that I can pour my heart out to. He never looks at me with eyes of pity. He never thinks of ways to change the subject to a more socially appropriate one. Instead he listens intently and restores my soul.
We have the blessing of a life fully and totally reliant on the promises of God.
Matthew 11:28-30 “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”
I have to admit, when I read this verse I have to work hard to process it. The first sentence is so beautifully refreshing. But then verse 29 hits and I realize that there is some work required from us. We have to be willing to make a trade…to lay down the heavy burdens we carry around needlessly on our shoulders and exchange them for the yoke of Christ.
The yoke concept seems restricting and arduous. But yokes were actually designed to relieve the pain, pressure, and discomfort plowing caused for cattle.
The decision to put on the yoke of Christ means that you are acknowledging that the load you are carrying is too much weight for you to bear. Taking on the yoke of Christ can actually bring us REST because it allows God to direct your steps as you live a life fully dependent on Him.
We aren’t promised a life free from burdens. Actually we are told to expect them. The decision is ours on how we carry them. We can continue to expend energy and effort to drag them from day to day. Or we can take them to Christ in an act of true humility and make a trade.
Personally speaking, I am overdue for a trade. The weight of my load is starting to take a toll on my heart and the weariness is overwhelming. I am sure some of you can relate with that feeling as well. So let’s do something about it this week! Join me in prayer that our hearts can recognize our areas of weakness and desire to hand them over to God. Let’s find some rest for our souls this week!