As we transition into a summer schedule Jake and I go back to the drawing board each year and re-assign tasks and caregiver roles. We are slowly finding the summer groove. Jake goes to bed early and then takes whichever kid wakes up first. I stay up until everyone is asleep but get to hand off the kids when they wake in the morning so I can grab a few extra hours of sleep.
Malachi’s brain has locked into a new bedtime of 3:45-4:00am. I know this is hard to understand, but as hard as I try I cannot change what his brain locks in. I can take him back to the bed at 9pm but he will still continue to stay awake until he hits his established time. We have tried changing routines, changing feeding schedules, and all the tricks but he still cycles through these timelines every few weeks. So we simply enter his world and try to adjust accordingly.
In the same way he locks into specific times, he also locks into specific routines. Right now he is having a big seizure every night 15-20 minutes after I lay him down. So I lay him down then wait impatiently for it to hit so I can intervene. This nighttime seizure is an aggressive one and he contorts his face directly into his pillow, cutting off his air supply completely. This bedtime seizure is lasting about 45 seconds then he is settled for the night.
Overall, we have actually been able to get decent control over Malachi’s seizures with him having 3-4 a day. And he has had a better week with oxygen levels and comfort. He has been swimming like a fish with friends and he has taught himself all kinds of new tricks, which he is extremely proud of. I was able to grab a video to share some of them with you!
Malachi is such a cool kid. His personality and sense of humor is incredible. I didn’t take many pictures this week but I thought it would be fun to throw a few flashback photos of Malachi on here from his “newborn” photo shoot after graduating from our 112 day stay in the NICU. He was just over 6 pounds, had a broken femur, and was about to start a casting process to fix his little legs and feet. But I remember taking these photos and feeling overwhelmed by the emotion of feeling like a real mom doing real mom things.
Levi is changing every day, growing from a toddler to a long legged little boy. I took a quick video of him sharing his Bible verse from vacation Bible school.
This photo from a few years ago popped up and it made me smile, seeing that sass in those eyebrows even as a baby!
With Jake home I am able to tackle tasks that I typically have to put off, like insurance paperwork and phone calls. Not to mention the formula shortage issue which prevented our shipment from arriving. Thankfully I have some extra cans to get us by but the anxiety this issue continues to create is palpable.
I spent hours on the phone this week coordinating appointments and ironing out all of our medical travel. July is going to rock our world a bit with a week at youth camp, a Vanderbilt trip with Malachi the week after, and a Cincinnati surgery week with Levi the week after that. We will have just a week to breathe after all of our medical trips until Jake returns back to school.
Needless to say we are treasuring our June and trying to squeeze every last ounce of relaxation out of each day.
Jake and I celebrated our 14th wedding anniversary this week. We laughed about how life before kids feels like a movie we watched once that we can vaguely remember. We didn’t really get a chance to celebrate due to Jake having a cold but we will likely go out this week to do something fun as a family.
I always aim for transparency on here, so today will be no exception. I don’t want to ever mislead you or present a picture of our lives that is an inaccurate one…the devil loves to use the comparison game to plants seeds in our hearts and minds. I never want the snapshots of our life we provide to you on the blog to season the way in which you view your life, especially if you are another caregiver parent.
Marriage is work. It is hard work for every couple, and has added challenges for families with disabilities. I have seen so many pyramid charts of “how we are to prioritize the Christian household”. Many of them start with God at the top, move down to spouse, then to children, occupation, and ministry. In our longing for checklists and flow charts Christian couples cling to these visual aids. But we have to remember that God will plant us in seasons of life that don’t follow charts. It is in these seasons that we have to lean heavily on His guidance, His Word, and walk in faith.
The Bible talks often and in detail about marriage (Ephesians 5, 1 Peter 3, and many more). It is clearly an important enough topic that it is extensively covered in God’s Word and I want to encourage you to read through these scriptures and allow God to speak to you through them.
But how do to maintain a marriage when it is not always feasible to prioritize one another? The life or death needs of our children tend to rule our home. Jake and I haven’t been able to sleep in the same bed for at least 3 years. Malachi’s nighttime seizures require intervention and if I can’t get my hands on him quickly he will absolutely suffocate. Levi’s feeding pump also runs continuously at night and with his constant movement while he sleeps I am often untangling and adjusting his machine and tubes throughout the night.
If I had to pick one word for how we are making our marriage work right now it would have to be ”intentional”. Just like a relationship with God, I have to be intentional in my relationship with Jake.
I will admit that there this has been a hard reality to navigate. But over the years as we watched the complexities win out in our home we have had to spend time talking to God about His expectations of us as a married couple. Jake and I are like minded in feeling like we are being called by God to raise these boys. God has given us a very specific task to do, and He is equipping us to continue to do that with a heart of contentment.
And in this role we are given the opportunity to serve and honor God side by side by caring for “the least of these” (Matthew 25:40). Watching the faithfulness of God in this life has been such a gift in our relationship.
But in the last few years I have really been able to settle on a clear and concise plan as I navigate marriage and parenting and I would love to share that with you as I truly believe it can transform any marriage. Matthew 22:34-40 says:
Hearing that Jesus had silenced the Sadducees, the Pharisees got together. One of them, an expert in the law, tested him with this question: “Teacher, which is the greatest commandment in the Law?”
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself.’
All the Law and the Prophets hang on these two commandments.”
We can organize the pyramids. We can read the books. We can go to the workshops. But in the end, the Bible is so incredibly clear what our priorities should be. Loving God with every ounce of your being. And then loving your neighbor as yourself.
I believe that if we are intentional in keeping our eyes focused on these two things then so many relationships, roles, parenting, and circumstances in our lives have the opportunity to be transformed in Christ.
I have found that the driest seasons in our marriage have been when one of us has drifted a few steps away from the Vine.
Please continue to pray over our marriage and the things we have yet to face as parents. Please pray against the specific ways the devil gets his foot in between us….bitterness, finances, times of uneven sacrifice, future opportunities for blame.
I am reminded of the verse 1 Peter 5:8-9 ”Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.”
And thank you for continuing to listen to me ramble each week. It is good for my soul.