This week Jake headed north to spend some quality time with family before he returns to work tomorrow. We had discussed us all making the trip, but the idea of traveling with the boys while trying to keep them germ free seemed like a stretch. And the daily routines are getting more complicated to achieve anywhere else but here at home base.
Single momma mode can get interesting but overall the week went really well. The role of caregiver is mentally, physically, and emotionally challenging- even with Jake home to give me breaks here and there. We are still very much living in a survival mode mentality, allowing the boys and their needs to dictate our days and schedules. We have routines that can’t be flexible, like medications and feeding schedules, and there is something medical required for one or both of the boys every 2.5 hours during the daytime hours. There isn’t an opportunity to mentally zone out.
Nighttime is still an olympic event, dashing from one boy to the other at least 6 times a night for beeping machines, seizures, and vomiting.
For example, last night Malachi had 6 big seizures and projectile vomited all over the bed and carpet. He stayed up until a little before 4am, crying and screaming with discomfort. I suspect his incoming teeth have something to do with this. These types of unpredictable nights happen often, and the boys seem to have a unqiue way of alternating who is going to be a wild man each night. I guess I am thankful for that…if both of them have a bad night at the same time we are in for doozy!
I tried to wear the boys out this week with lots of trips in the car and spending some time with local family. We even made a trip down to Atlanta to visit with my brother and his family. Just as a precaution, I went and had a rapid covid test done to make sure we weren’t somehow carrying something to them.
Jake and I are both “dog people”. We have always loved having big dogs, but with the chaos of each of the boy’s births we had to prioritize kids over animals and rely on family members to help with the dogs during our hospital stays. Our sweet Gunner had a heart attack when Malachi was 3 years old, and our old boy Boomer had a heart attack just a few weeks after we returned home from the hospital with Levi in 2018.
Malachi loved Boomer and Gunner so much, and we have always talked about getting another dog. But then reality sets in and with the unpredictability that our life brings, we find ourselves questioning if it is responsible to bring a dog into the mix. We still don’t have a grasp on taking care of our children’s needs, let alone adding the needs of a four legged friend.
But then there is sweet Malachi, clearly a dog loving boy, who makes us rethink it all. Anytime a dog comes near, Malachi lights up with such joy. We sneak the neighbor dogs in every now and then when they come into our yard just to see him giggle. My brother has a big dog and watching Malachi play with him made my heart so happy.
I am still not convinced that right now is the best time to add in the chaos, but maybe one day in the future we can explore the idea again.
We also spent the week working on potty training, which means I spent the week mopping the floors with sanitizing solution!
Let me take just a quick second to blow your minds with how much Levi looks like Jake. So wild!
Jake came home late Friday and brought a few presents for the boys from our family up north. Both of the boys were thrilled to have their dad home and having him bring special surprises made it that much more special.
Malachi got two new switch adapted toys and he is super excited about both of them. Finding toys for Malachi is quite the challenge, but these he can control with his green switch. The tube one has a racecar inside, and when Malachi presses his green switch the car races until he lets go. He has played with this one for hours already!
He also got this switch adapted squirt gun that shoots water every time Malachi hits his green switch!
And little Levi got a really cool toy I wanted to share with you all! The newest Paw Patrol character is in a wheelchair and Levi got his own handicap accessible truck to play with. So sweet.
Malachi got a fun new game called “Rattlesnake Jake” that we have been saving for when Jake returned from his trip. We got to play a few rounds this afternoon and I can tell you this one is a winner. You have to sneak your hand in and grab a gold nugget and each time you do the rattlesnake shakes its tail. You take turns doing this until the snake lunges at someone and they are the loser of the game. The anticipation sets Malachi into giggles, and playing it has been so good from an occupational therapy mindset because he has to open his hands to grab a piece of gold (with help of course). We played at least 12 round and he was still signing for more.
Last week I was struggling with the unknowns of our life. And this week I am struggling with the knowns. Isn’t it wild how quickly the devil can redirect his attacks on our hearts?
The unknowns of life with two medically complex kids keep my imagination running with what ifs. I start to mentally prepare for scenarios that may never happen in an effort to prepare my heart for what may be on the horizon. It isn’t a healthy habit, something I am very aware of.
But this week I got stuck on the knowns. Yes, there are so many levels of unpredictability. But there are also so so so many levels of predictable things in our life that almost feel like a heavy blanket we will always need to carry with us. These are the things that are necessary for our kids to survive, and things we can never ignore. There will always be medication, surgeries, appointments, therapies, sleeping difficulties, seizures, diaper changes…this will always be a complicated life.
Often parents can get through the chaos of the early years and life mellows out a bit. As children change and grow older they develop independence and don’t require their parents as much for menial tasks. But that reprieve will never come for us. There will never be a time when traveling with the boys is “easier” or less complicated. In fact, we are finding it to be quite the opposite as Malachi grows, as most places aren’t equipped for us to comfortably care for his needs.
I get sad when I dwell in the knowns. It is an odd sadness, because I am extremely grateful to be trusted by God for the role He has put me in. But there is a level of mourning as I put to death many dreams, hobbies, and expectations. These are things I have always clung do with a “maybe one day” tacked in the front. But I am realizing that clinging to those unrealistic expectations is doing me more damage than good and has potential to plant seeds of bitterness in my heart.
I am working this week to embrace the calling God has put on my life. There are so many rich blessings within it that I can often overlook when I am not in the mood to find them.
This calling doesn’t even remotely resemble the one I had envisioned I would have, so I feel like embracing it is a way to honor God and affirm his role of lordship in my life.
Hebrews 12:1-3 “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.”
I feel like I am at a point in the race when I look around and start to wonder how in the world I got here. I have forgotten the work God did early on before the race to prepare me for it, and I have forgotten the zeal that I had when that starting pistol fired into the air the night Malachi was born.
When I started running I didn’t give a thought to the finish line, or lack of one. And now that we are several miles in I find that I am not conditioned for this type of task, and that I am don’t always enjoy the hard work the running takes. I keep looking around for a place to step to the side and rest, but this race doesn’t work like that…others lives depend on my ability to keep running.
And truthfully the idea of a finish line, or a break in this hard life will likely be surrounded by imaginable grief in the loss of my child. I dread the finish line.
What started as an adventure now feels like a chore. Is there something in your life that you can relate that to?
But this verse gives us a tip that can help with our weariness. Instead of looking for the finish line, fix your eyes on Christ. Instead of looking for side paths and shortcuts, focus your eyes on Him and recognize that each step you are taking is one that He ordained and designed specifically for you.
When we focus our eyes on Christ we can do anything He calls us to do. Peter even walked on water when Jesus called him to. It was when he started to look around that fear creeped in and challenged his faith.
Admittedly I have been looking at the wind this week instead of God.
But a new week is here, and another opportunity to keep my eyes on Him!