We are continuing to prep our lives for Jake returning back to work. We have rearranged one of the spare bedrooms for Malachi, Levi, and I to sleep in which will give Jake full access to the master bathroom and closet in the mornings to get ready for work. He has just two weeks left of summer!
We set up a new big boy bed for Levi with the hopes that we can successfully carry him over to it each evening. Bedtime is a little wonky for our family, which is okay with two parents helping but very difficult for just one of us to accomplish.
Levi falls asleep around 11 each night and by 11:30 we hook him up to his nighttime g-tube feeds. The pump runs from 11:30p-7a but the biggest issue is that he moves SO MUCH while he sleeps. You have to constantly wake up and check the tubing, making sure it hasn’t accidentally gotten tangled on blankets. The crib was working well but now transferring him in and out of it has become too much of a challenge. The other big issue is that he regularly rolls or sleepwalks off the bed at night, and the pump bag stays on the bed, leaving very little tube length before ripping his g-tube out of his tummy. You have to have eyes and hands near him the entire time he is asleep.
But our sweet Malachi doesn’t go to bed until around 1am. And getting him to bed is a challenge, as that is one of the most seizure friendly times of day for him. So Levi will be unsupervised for a bit after he is hooked up and I am still in the living room getting Malachi calm enough to sleep. We were able to get a bed for him that has very high sides, which we are hoping will prevent him from rolling out and dislodging the tube. I also have a baby monitor we will keep on him at all times.
Right now both of the boys sleep in separate rooms, each with an adult. At one point several years ago Malachi was sleeping in his own bedroom, but with his positional struggles and nighttime seizures I just feel more comfortable having him close to me. I am constantly waking up and moving his position to make him more comfortable when he starts to stir. I think about being stuck in the same position all night and how uncomfortable that must be for him, and I do my best to switch him up as much as possible.
My fear in putting them in the same room is that one will keep/wake the other up and my very limited sleep will become even more limited. But I am sure we can figure out something that will eventually work. Hopefully haha.
We are trying hard to not think about the potential germs Jake will be bringing in each day and are continuing to focus on faith over fear. Without Jake teaching we wouldn’t have the insurance that the boys both rely on. And obviously the loss of income isn’t manageable for our family, so we just have to continue praying and believing that God will protect our family.
Malachi is losing all of his baby looks at turning into a big seven year old! He is cutting some big molars and we suspect his front teeth will be coming in soon. He only has one real baby tooth, the rest are all capped, so getting new teeth is a pretty big deal. His seizures have amped up a bit, and we are assuming pain from the new teeth has something to do with it.
We had some wonderful friends from church offer to sit with the boys this week, and Jake and I got the chance to go out on a date! Aside from last week’s outing, we haven’t been in a real restaurant since March and we still don’t feel comfortable being inside public places right now. We found a restaurant with a large patio area and snagged a table in the corner away from everyone else. The waitress stayed masked and we felt safe with the setup.
Whenever we get to leave the house without the boys it just feels so unnatural. Even the movement of getting out of the car and walking directly into a place without a 5 minute unloading process is a real treat. And eating a meal without toddler demands and seizures is refreshing.
After dinner we drove over to our alma mater and walked around the campus. We reminisced as we passed each of the buildings, remembering friends, professors, and silly stories. Jake and I both worked on campus during our four years there and know the place inside and out! I was responsible for paying for my years at school and consistently worked 40 hours each week in several different roles…the computer department, campus safety dispatch, a special needs program at a local church. Between Jake and I we have enough stories to last a lifetime at that place! Here is a photo from the college days.
We went into the gym to check out the famous broken bat from when Jake and his fraternity broke a world record, playing 101 straight hours of softball. If you ever want to hear some hilarious stories from those four days just ask. Jake ended up in the hospital at one point and had temporary amnesia around day 3 from sleep deprivation. He didn’t even remember how to swing a baseball bat even though he had already been playing for three whole days!
But one of my favorite memories was from a random park bench in the middle of campus. During our freshman year we both stayed on campus and picked that specific park bench to meet in the evenings to do a Bible study together.
We took a few minutes to sit at the bench this past Friday night and it flooded back the memories. The bench was much more worn than it used to be, weak and flexing under the pressure of the many years it has been in the elements. But it was bolted to the same concrete square that was there many years ago…the same strong foundation.
I couldn’t help but smile thinking back to that young, careless couple that used to sit on that bench all those years ago. And just like the bench, the elements have changed us. This challenging life has made us almost unrecognizable, yet we still remain firmly secured to that same foundation that God placed under our feet all those years ago.
Our marriage has been through storms that few others have to experience. But God has so graciously carried us through each one, allowing our relationship to remain firmly connected and rooted in Him. I think about the months and months we have had to be apart due to one child being in the hospital. I think about the hidden challenges that come with raising a special needs child- the jealousy of a “normal” life that Jake gets to escape to each day when he is working. Or the resentment that breeds when one parent gets more sleep than the other.
Even now, having to make long term plans to sleep in separate rooms to protect the health of the boys. Our marriage tends to fall secondary to our responsibilities as caregivers, not parents. Our primary goal is simply to keep these boys healthy and alive. But right now that is the calling God has placed on both of us, and we choose to focus on contentment in this unique calling instead of focusing on the things we are missing out on.
I have been personally struggling this week with a few big emotions. These past few months have been wonderful for our family. We haven’t had a medical emergency since January, thus breaking all previous records. As I drive around this beautiful town God has placed us in, and as I look out the back deck of my comfortable home at the vast mountain my mind keeps reminding me that our tragedies aren’t over. At some point these mountains and sunsets will again be replaced with hospital walls and windows that don’t open.
I am struggling between soaking in the calm moments, but also sensing that I still have yet to experience the “worst day of my life” and that it could come at any moment. We have experienced so much pain and tragedy, yet I realize that we haven’t been through the biggest storm yet…the loss of a child.
When you are raising a medically fragile child you can never fully relax. The harsh reality is that we attempt to live a normal looking life in between medical emergencies, knowing that one of those very emergencies will eventually take his life. It will make you crazy if you dwell on it too much. I guess this week I can’t seem to shake that dark cloud.
It is in weeks like this one that I have to turn to God’s word and seek His peace.
Philippians 4:6-8 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things.”
This week I am praying that God continues to cover me with His peace and guard my heart and my mind when my earthly emotions trump my faith in His plan.