This is one of those weeks where I stare at the screen, not quite sure where to start. Sometimes I have to re-focus myself on the purpose of the blog. I have always wanted it to be a glimpse into the lives of a medically complex family so when we have ”normal” weeks I find myself scratching my head on what to share with you.
I could share with you our normal moments like soccer practices, play dates with friends, family game nights. We have had a full and busy week with lots of laughter.
But when I allow my mind to search for all the medical moments, we certainly had several this week.
Malachi’s oxygen levels have been up and down as he is dealing with a little extra drainage. He can go from an oxygen saturation of 96 (with 100 being perfect) down to 85 due to some junk in his throat. We are using the cough assist machine frequently on him and while it does help tremendously he still hates it with a passion. And I don’t blame him one bit. It is an extremely invasive machine.
We added a piece of furniture to the house last week and it has made life a little bit easier. I am still working on finding good equipment storage options for the top tray. We secured a 10 foot power strip on the cart so all of the machines are plugged in and we can wheel it anywhere in the living room. It has been such a blessing already. Several of his other machines don’t fit on the cart but these are the most frequently used ones right now.
One of the things you may not know about medically complex families is the insane amounts of medical supplies we stock each month. We have several cabinets that are each designated for different items and our medicine cabinet looks like a pharmacy. Right now we are using over a hundred syringes a week between the two boys.
This week Levi and I were talking about our upcoming trip to Ohio and all of the fun things we were going to get to do. We try to mask our medical trips each year with focusing on the fun. I don’t mention surgery or the many doctor appointments until the day of each so he won’t have the opportunity to dwell on them and develop anticipatory fear.
As I was watching him I watched his little face change and he said ”I don’t want to go to Ohio. I don’t want to see great grandma. I don’t want to stay at grandpa’s house.” I asked him why he didn’t want to go and he burst into tears. Through his sobbing he said ”Me don’t want to have surgery” over and over again.
For years we have been able to delay his awareness for surgery, but this year he pieced it together all by himself. He sobbed and cried, which increased his effort with breathing and caused him to vomit. As much as I tried to calm him down he just couldn’t calm down.
This is always a difficult dilemma for me. I never want to lie to Levi, especially about hard things in life. So we embraced the hard together and talked about why we have to do hard things. He cried himself to sleep and my mommy heart was so broken for him.
It continues to be a topic every single day, almost as if he thinks he can negotiate his way out of surgery. But the truth is, I am dreading it as well. This is the year that they will formally determine if Levi’s vocal cords are permanently paralyzed. I know from clinical signs that they aren’t moving, but having medical professionals confirm this still carried a level of sadness.
Jake and I took our youth group on a hike up the side of a mountain down the road from us for a time of Bible study and worship. He and I used to do this hike often in college and it was one of our favorite places to go, so hiking back up there with the teens was such a special gift. In fact, the last time we made that hike together I was pregnant with Malachi!
When I think back to those early carefree days with Jake they feel like a lifetime ago. A decade ago we were hiking through Montana and exploring national parks. Our faces (and bellies haha) were thinner and our eyes were brighter but the depth of our faith has changed monumentally.
Sometimes I look at photos like these and find it hard to believe we once lived a life that was THAT carefree. But those years were such a gift from God in our relationship. I have to often fight the temptation to play the comparison game with our former selves as it has the ability to breed discontentment.
I think anyone reading our blog would easily decipher that we are very much pro-life, believing that God is the author of all life. Malachi’s life verse before we ever knew of the complications that were to come was Jeremiah 1:5 ”Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”
When we are in our hometown Malachi is loved, accepted, and valued by so many. I am aware that not everyone shares those same emotions towards children with special needs, but every now and then I forget. This was one of those weeks that I was reminded of the harshness that still exists towards children like mine.
I read a post from a NICU nurse on Facebook and immediately after I read it I wanted to vomit. The sadness that welled up inside my heart was overwhelming as it reminded me that my definition of worth is so very different than the worlds.
The post included a few phrases that I would like to share with you:
”if you ask anyone who works with critically ill infants or children, you’ll learn that some lives are simply not worth living…I’m talking about kids who will never walk or talk or play or smile or feed themselves or breathe on their own.”
”The ones that will endure painful procedures and infections their entire lives with no hope for recovery. There are legitimate reasons to end a pregnancy and spare a child from a lifetime of pain and suffering. Ironically, it can sometimes be the most loving and humane choice for someone.”
I have seen very traumatic situations in our hopsital stays with the boys. I know that suffering exists. And if my very limited view of these situations represents even a fraction of what healthcare professionals see then I can only imagine the heartache they often experience.
But we have to be very careful as a society to not categorize quality of life. In the last week I have very quickly watched Americans use children like my Malachi to rationalize ending a life. And as a mom of a very unique, very smart, very amazing child with complexities I ask that you don’t use my child’s condition or life as evidence for a mercy killing.
Malachi has changed me profoundly, and in turn changed the world I interact with. His life has so much value and so much worth. The fact that I even feel in my heart a compulsion to type that sentence is a tragedy.
I can provide an argument for the value in Malachi’s life. I can provide detail after detail as I try to convince you that there is so much world-changing that happens even within suffering. But the truth of the matter is that I can never convince someone to fall in love with God. To be so would be a manufactured faith that wouldn’t take root.
Only God can change hearts and transform minds.
That sentence bears repeating again. Only God can change hearts and transform minds.
The Bible tells us in 2 Corinthians 5:20-21 ”Therefore, we are ambassadors for Christ, as though God were making an appeal through us; we beg you on behalf of Christ, be reconciled to God. He made Him who knew no sin to be sin on our behalf, so that we might become the righteousness of God in Him.
We are ambassadors, representatives of Him on this earth. Too often we spend our efforts trying to change hearts instead of introducing others to the One who can change their hearts.
So my prayer this week is that God continues to use Malachi as His ambassador, using his suffering and his joy to draw others into a faith walk of their own. And my prayer is that God gives us the words, the posture, and the heart to be representatives of Him on this earth.
Please be in prayer this week for our upcoming youth camp! We have over 50 going this year, and the (wonderful) spiritual weight that Jake and I carry for each of them is one of the most rewarding yoke’s we have the opportunity to carry.