This week we have been fighting some pretty big seizures with Malachi. Any form of discomfort brings on the seizures, and we are still leaning towards them being related to his incoming teeth and the increased secretions that process brings. We have had some pretty wonky nights this week staying up until 4am battling the seizure beast.
On one of his more difficult nights I noticed a bit of discoloration on his upper lip so I grabbed the pulse oximeter to check his oxygen levels. He was dropped down to 91, which is lower than his normal. When we hit 88 we typically take him on in to the hospital. Within the hour we were able to get him back up to 94 with positioning and secretion management, and his color went back to normal. We are keeping a close eye on him and checking him often, but he has been back to baseline this weekend.
And little Levi of course wanted me to check his oxygen levels as well and he was at 98! This is so good for him and means his airway is still nice and wide.
But overall the boys are still very healthy and happy. Before I joined the medical mama club I never fully understood the hidden tasks of that life. Each month we receive shipments of medical supplies…boxes and boxes of necessary things to get them through each month…formulas, feed bags, pule oximeter sensors, medications, adult diapers, syringes…
Organizing them when they arrive is quite the task and some months I am overwhelmed by it. But I am also thankful for it as I recognize it allows children like mine to live happy, healthy lives outside of the hospital setting.
We tackled another g-tube change this week, something that I utterly hate doing as it means I have to inflict a bit of discomfort on my children. Malachi handles it like a champ, and I can swap his out in under 30 seconds. But poor Levi starts crying the minute a new tube box comes out of the drawer. When he contracts his ab muscles while crying it makes it more difficult to get the old tube out and the new one in. Despite the tears, this was the best changeout we have ever had for him!
Malachi’s new switch adapted dice roller got some action this week! We played Candy Land, Trouble, and lots of Rattlesnake Jake. Seeing Malachi come alive with these games is so much fun to watch. He is so engaged and competitive!
Malachi has been struggling a bit lately with feeling included, something we are typically very conscientious about but clearly still don’t have mastered. Little things this week sparked crocodile tears, like me running to the basement to throw in a load of laundry. I always tell him where I am going and what I am doing, but Levi often follows me making Malachi think we are doing something fun without him.
I think it is safe to say that my heart breaks a bit for Malachi each and every day. Inside of that body is a seven year old boy who is mentally so typical. He understands everything around him, including emotional tension and unspoken things. He truly is an amazing kid, something I tell him every night before we go to bed. My heart hurts that he can’t do the things he truly wants to do.
Including him is always a top priority for us, but the larger he gets the harder that is to do. Piggy back rides, dancing in the living room, trips down to the basement to play….all of those things are already getting more difficult for me. I am trying really hard to stay in the present, but my mind keeps drifting towards the future disappointments Malachi will encounter that I can’t prevent.
This week a friend turned 40 so we rented out a local workshop that helps you create your own custom signs. Everyone was able to stay masked and six feet apart making it a great option for a memory. As I looked through the projects to choose from on their website I wanted to stick with the scripture theme we have in our home.
When I saw this one I knew it was the one for me!
1 Corinthians 13 has been a favorite scripture of mind since college days. When Jake and I were married in 2008 our bridesmaids recited the chapter in our wedding ceremony. I have this chapter memorized and recite pieces of it often, but sometimes seeing the words of God can spark something new in your heart. I substitute my name in for the word “love” when I really need to re-focus.
In these workshops, you complete your work of art in about 3 hours and take it home with you. As soon as I carried it in I Jake gladly hung it in it’s chosen spot above the pantry. Ignore the wild three year old on the counter.
I don’t know about you, but when I add something new to the house my eyes are drawn to it often as it is something I am not used to seeing. This sign has been no exception, and each time I glance up at it my eyes are drawn to a different word.
The more I have read that sign, the more I have recognized that my love for others is still a far cry from the love of Christ. There are things on the list that I have mastered, but many others I still have to work on.
As I self reflected on that list I kept eyeing that last string of words: “It (love) always protect, always trusts, always hopes, always perseveres.” The words seemed so familiar to my heart, but I couldn’t quite pinpoint why.
After a few days I finally spotted it. It was the love that immediately developed in my heart for Malachi the night he was born. It wasn’t a love I had to work at, it was a natural love. It was a fierce love for a tiny 1 pound 12 ounce boy I had just met.
As I thought about those early, hard days with Malachi I see how this special love from God fueled that journey. I watched that love burst into action again the night Levi was born. And each year when I think that love can’t grow any bigger I watch in amazement as it strengthens and grows.
I often get genuinely well meaning comments from people saying “I don’t know how you do it”, and the truth is that when God gifted these boys to me, He gifted me with an extraordinary, supernatural love for them that would fight to protect, hope, and persevere alongside of them in each of their unique journeys.
Love is a gift from God.
The love that 1 Corinthians 13 describes is utterly impossible to develop without the presence of Christ in your life. When we talk about Christians being different than the world, this type of unique and unwarranted love for others is what we should all be praying desperately to develop.
It is the love that Christ displayed as He walked this earth, healing the broken and loving those deemed unlovable. It is a love that often goes against human nature. But if we claim to be followers of Christ, shouldn’t we be eager and willing to love others as He does?
My prayer is that one day that the same natural love in my heart that I have for my own children will grow into love for others. That I will start being able to see others the way that God sees them and the adjectives in 1 Corinthians 13 become a natural instinct in my life.
When we choose to look different than the world, we have to find ways to live differently than the world. Love seems like a great place to start.
I apologize in advance for any choppiness in my writings tonight. It is 1:30am and Malachi and Levi are still wild and active. Trying to hold my train of thought is not working so well. I am off to wrangle these kids!