To be truthful, Jake and I are wiped out. School has been kicking his tail with all the additional things he is having to do for the remote learners in his classes as it is hard to teach math remotely. He is discouraged, frustrated, and continually falling behind so I am trying hard to offer loads of grace and understanding. And lots of home cooked meals!
But in reality, I am wiped out as well. I shouldn’t be…my workload is lighter than it has ever been, and our appointment calendar is thin. But the monotony of our schedule paired with being a medical mama is wearing me down. The boys aren’t sleeping well so I jump back and forth from bed to bed most of the night, trying to keep everyone quiet, calm, and safely hooked up to their machines. On a typical night (Malachi’s “nights” are 6 hours long) I am up and down at least a dozen times.
There were so many times this week that I packed up the boys and went for a drive, just hoping to keep toddler Levi strapped into a seat and still for ten minutes. I love him with all of my heart, but now officially understand the phrase “toddler tornado”!
I have been working hard to plump up Levi for his upcoming GI appointment. We are lectured continually about his weight but at the rate he moves he burns a whole lot of calories. I am finally seeing a change and he has gained two pounds in three weeks. I have been trying to run his feeds longer at night to add in some extra calories and try to keep him on his feed every 2.5 hours here at the house. He was fighting me about putting on his feeding backpack so we ordered two more and now he gets to pick which one he uses for the day. The new Toy Story one seems to be his top pick. We have a connection with a lady that modifies preschool backpacks for us so he can get some cool prints instead of medical looking ones.
Malachi is gaining weight with ease! He is up to 37 pounds and looks very healthy. He isn’t moving as much as he did pre-quarantine and I have been growing more and more concerned about his tone. I called his physical therapist and talked to her about some options for getting him seen at least a few times a month. She told me she drives out our way twice a month and would be willing to come by the house to do a session with Malachi! She came out Friday and confirmed that yes, Malachi has lost a lot of muscle tone since she saw him last.
On the flip side she was pleasantly surprised with how well Levi is doing!
I have been working this week on trying to get him another seating option that will encourage Malachi to engage his muscles and hold his head up. Seating for special needs kids runs between $3,000-$8,000 and insurance doesn’t cover comfy/non-essential seating. I have had my eye on a specific chair for him for a few years and I reached out to the company this week to see if they had any floor models in Malachi’s size that they would sell me at a discounted rate. To my surprise he wrote me back this week to let me know they had one they could ship out next week for $750 (includes shipping and taxes)! This same chair is over $3,000 new so I am thrilled.
We were approved for a local grant this year, the same grant that helped cover the pool last year. That extra allowance is helpful for purchases like these, and I will be working with them to see if they will help with the cost of the new chair.
I also spent a few hours on the phone this week filing our final appeal for Levi’s Cincinnati surgery. They have 90 days to respond, so say some prayers with us that they will reverse their decision and cover it.
This week I stretched past my comfort zone and took the boys to two soccer games. I kept them away from the stands and people, and it was the break we all needed. Malachi giggled and squealed with joy, so happy to be doing something normal. Levi cried 90% of the time yelling that he wanted to go home haha. He didn’t like the crowd and all the noise around him. Thankfully his buddy Tanner was there to act as his safety blanket.
We did a whole lot of outside playing and swimming this week. Both boys love to be outside and now that we have some great spaces to sit and enjoy shade they are always ready to go out there. I haven’t been as concerned about bears during the daytime, as the earliest we have seen them is 3:00. But yesterday at noon I pulled out of the driveway and scared one out of our yard. He crossed the street in front of the house and jumped into the treeline. I have seen dozens and dozens of bears but for some reason they still take my breath away when I see them. They are just so big! It’s like my brain can’t process how something that big and furry can move with such agility.
I have been trying to work with Levi on his colors, and he has been cracking me up. Definitely a work in progress. I took a video this week for you so you could see his silliness:
Levi has a birthday coming up in November and I found a company that writes books using your kids as the main characters. You design what each character will look like and choose the story topics. I worked to make one for the boys, as they both love hearing me make up stories about them at night. I don’t have the finished product yet but the sweet cover made me cry.
Special needs parenting is just so complex. There is so much grief, but you have to mask that even in your own home. I never want Levi to see me grieve over Malachi’s differences. I want him to see Malachi for the beautifully unique creation that he is. And I absolutely NEVER want Malachi to know that his challenges sometimes break my heart for him. I have to create a world where the challenges we face are seen as normal.
Seeing this cartoon made a lump creep up in my throat as it represented the life I imagined I would have…two healthy brothers climbing trees, scraping knees, and loving adventures together. My heart hurt for Malachi, knowing that he can’t get his body to do the things his mind wants him to do. My heart hurt for Levi, knowing the instant responsibility he has thrust on him to help his brother. I truly don’t think Levi will ever see it as a burden, but the loss of his normalcy in that hurts my mommy heart. It is an extra push for me as a mother to teach Levi about the unconditional love of Jesus, and how we show that love to others when we serve them.
Oh, the depths of special needs parenting are so thick.
But when I look at them together I see the bond of two brothers who love one another with all of their hearts. I think I am prematurely mourning over something that neither of them will ever mourn.
This book will be a special one for us all as it allows each of us to use our imaginations.
And on a totally different note, I saw a photo this week and I don’t know that I have ever related to an animal more in my life.
Take a look at these mountain goats..
When I saw these images I thought to myself, “THAT is a perfect image of special needs parenting!”
Facing mountains that look impossible to climb. But those steep, vertical walls are the ones we must scale in order to give our kids the most full, rich lives we can. Just like these silly mountain goats we search for a single ledge to put just one foot, and step by step we work our way dangerously up the mountain.
The Bible talks a lot about mountains, and the visual pictures each verse paints is powerful. When I was young in my faith I clung to the verse about faith moving mountains. What a powerful thing!
But as I walked deeper with the Lord and he revealed this different plan He had for my life, I started to understand that some mountains are not meant to be moved. They are meant to be scaled perilously, step by step…not knowing where the next foothold may be, but trusting that God will guide your foot to it.
Psalm 121:1-2 “I lift my eyes to the mountains- where does my help come from? My help comes from the Lord, the Maker of heaven and earth.”
Time and time again we will each encounter mountains. My mountain will likely look very different than your mountain but the daunting nature of those mountains will be very similar.
You may be like me, and try to “pray away the mountain”, closing your eyes hard and mustering all of your faith to command the mountain to move. But when you open your eyes the mountain still stands, sometimes growing larger each time you look at it.
Sometimes we are called to climb. Because it is in the climb that our faith gets the chance to mature and grow. Trusting God sounds simple, but when you rely on Him as you scale the mountain, you start to truly understand the importance of a God with an aerial view.
Who knew a photo of mountain goats would be such a spiritual encouragement for me this week!
Please continue to pray over the health of our family, and pray that some of the wackiness gets ironed out this week for Jake.