This Weight. It’s heavy. The weight of special needs was something we’ve gotten used to along the way. It was gradual, never too life threatening. But this. It’s daunting. We long to be at home, away from the hospital, but there is no doubt being home, alone, is its own kind of hard. When I was young I remember thinking how difficult it is to keep a baby alive. Oh, young, naive Stephanie. Silly girl. This actually keeping someone alive is a new level of heavy. What if I mess up the dose? What if I sleep through the alarm beep because I am so tired of being woken up four or more times night after night for months now? What if I don’t clean the tubes properly? What if I snag the tubes and pull everything out?! What if, what if, what if? The weight of loving someone with great need, loving so much my heart breaks, it’s heavy.
We learn from a young age, Christian or not, do unto others as you would have them do unto you. Love as you want to be loved. That Golden Rule thing, it’s easy to say, harder to do. (Matthew 7:12)
I learned the rule when I was a child. Share your toys, don’t hit others, these were the law-abiding highlights. The teen years came and gossip and cliques and all that teen angst (the good ole days) found its way in to my heart. Easy when we look back, right?
But now? No one told me what I was signing up for when it came to this golden rule thing. Getting up all night, cleaning nasties, sticking my child with needles over and over? Whattt? This love thing is way harder than I ever knew. But we do it, right? We do it without thinking. We would do it over and over until our heart breaks a million ways. Love.
Love means drawing close during midnight meltdowns night after night. Love means I choose to change the various painful medical devices while my child winces, even when he pushes away. Love means watching toxic, neon medicines travel through tubes into my child that are meant to cure.
It’s patient and kind. It’s not easily angered. Love hopes. Love always perseveres. (1 Corinthians 13:4-7)
After I learned how to access a port and took it on regularly a nurse friend said, “Congratulations. You can now do more than what most nurses can do.” Even nurses go home after their shift. Even after overtime, someone eventually makes them rest. At home there is no overtime. Love is tiring.
One of my go-to Bible verses is Matthew 11:28. “Come to me, all who are weary and heavy-laden, and I will give you rest.”
He could have only said, “Come to me and I will give you rest.” Or, “come who are weary and I will give you rest.” But, It’s as if Jesus knew I would not be just needing rest, not just weary and needing rest, I would be weary and heavy and laden and needing rest. All of them. So overwhelmed by this love. So weighed down by love.
This love isn’t a Pinterest kind of love. It isn’t the kind of love which gets hearts and likes on social media. But, this love runs deep. It shows up in the middle of the night. It draws close in the pain. And holds tight in the rooms filled with fear. The what ifs, the needs, the sleepless nights, they can drive us to where Jesus is waiting with open arms for rest when the weight of this love gets too heavy.
My husband and I are parents of all boys. One of whom is a young adult with both physical and intellectual disabilities. I don’t always know what I’m doing as I parent these guys. But what I do know is God is teaching me big things through our trials that I probably would have never learned without them. You can find more from me at www.mostlyeandme.com, on Facebook, and on Twitter @mostlyeandme.