Special needs, illness, I don’t completely know why God allows them. He wouldn’t be much of a God if I knew all of his ways, would he? (Isaiah 55:8 For my ways are not your ways.) But what I do know is he is using this time for good. And I’m learning to be okay with this.
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? This weight of love, 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 wearyandheavy and ladenandneeding 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.
Letting it Go. It’s a bit of a theme song in our house. We sing that Frozen song for ev-er-y-thing. I am super great about telling everyone in my house when they need to ‘let it go.’ (Noticing only the faults of others; it’s an unfortunate skill I have.) But, me? Well, I don’t have anything to let go of, right?
I follow one of those special needs parent pages on Facebook. It’s a little different from my own; more clinically based. I like it for the medical viewpoint. But, I forget sometimes people see the world from a different view than my own; one without Jesus. This particular post allowed parents to vent on their worst special needs moment, that thing that had been said to them that hurt the most. Let ’em have it! I can admit my fingers were primed and ready to begin typing. Like most of us, I have a moment that I just can’t quite ‘let it go.’
I tell myself it’s gone. Then I hear about a person, a meeting, a situation, similar to the one when this dreaded offense happened. Or … a Facebook post pops up giving me the chance to ‘vent’ and tell others of my most horrid moment.
If I’m honest, my ‘let it go’ moment wasn’t all I make it out to be in my head. (I think I’ve been clear before on the extreme imagination/exaggeration that can go on in my head.) Years later (Seriously, it was eons ago.), I can see I may have been a bit emotional about the moment and truly do need to ‘let it goooooo.’
What are you hanging on to at the beginning of this new year? Is there something you could really, I mean really, give to God this time around and let him have all of it?
Venting. I’ve done it. My sister, husband, other special needs moms; they’ve all been on the receiving end of my venting a time or two or twelve. But, I’m not sure it got me much of anywhere but on the road to more bitterness and hate.
Giving up the ghost of this not-so-horrific offense has led me to see God working in this situation. I get to see the work being done to help us and others. I can quickly imagine how my hateful words of public venting could have altered the future.
“Again, my loved ones, do not seek revenge; instead, allow God’s wrath to make sure justice is served. Turn it over to him. For the scriptures say, ‘Revenge is Mine. I will settle all scores.'” Romans 12:19
Venting. Here’s your chance. I don’t want to know about the actual offense. Here’s what I want to hear about: vent away on a general situation, habit, memory, whatever that thing is you want to start … Letting it Go!!!
The best of 2017. Sounds weird when it was a year most would consider not the best. But, borne out of this year was good books I may never have read without the tough days, more lipstick than a girl could ever need because I tend to shop my feelings, and still a joy that has come from these hard days.
I’ve read some of my favorite books this past year. No, I have not been more impressionable in my emotional state. They were darn good books. Right now I’m reading Struck by Russ Ramsey. So good. His own medical trial is different from ours, but yet, it’s the same. Michele Cushatt is one of my favorite writers. I’ve read two of her books this year and loved them both, I Am and Undone. I Am was an easy to read daily bible study. Perfect for my life filled with “Mom, Mom, Mom, Mom” and the constant interruptions of hospital life. Undone has a medical theme; living an unexpected life. (I’m sensing a theme in my book choices.) Ann Voskamp wrote the bestseller, The Broken Way, and I really enjoyed its easier reading. It was a little less poetic than some of her others and more real life. I like real life. And finally, Matthew West took some of his songs and put them to book in Hello My Name Is. Or maybe it’s the other way around? Either way, he is funny and I loved hearing some of the background to a few of his most popular songs. And he always points me back to Christ in book or in song. What were your favorite books of 2017?
Lipsticks! So many to choose from. I wrote about my favorites this year that came from a weak moment shopping spree. But truth be told, my favorite lipstick of the year is from Stila. I love it in Brûlée. Get it online or at my go-to retail therapy location, Ulta.
The favorite blog posts of 2017 might not make any happiest moments of the year lists. But what I’ve found is joy isn’t always found in just happy times. Just because we are faced with trials doesn’t mean this equates to only misery. Joy comes from something, somewhere, someONE, other than a circumstance. I have learned to trust Jesus more this year than ever before. Because of this, 2017 has been a good year.
It hurts a little, maybe more than a little, when I see new parents saddened by the news their new bundle of joy has a disability. When new parents find this news before their baby is born and they send out the ‘bad news’ — it breaks me a little. Maybe I would have done the same had I known of our journey before our guy was born. The wisdom from time and experience in our special needs driven life has given that 20/20 hindsight. This Christmas, I’m seeing more clearly now my gifts from disability.
Man, do I remember walking out of the hospital after delivering my guy … without him. Walking out of the NICU and leaving him behind can feel like yesterday; it’s a pain I never expected. The last thing I was thinking about was the gifts to come. I relied on my own strength, or what little was left in me, and I wish someone had told me this:
“When troubles seem near, God is nearer, and He’s ready to help. So why run and hide? No fear, no pacing, no biting fingernails. When the earth spins out of control, we are sure and fearless.” (Psalm 46:1-2)
Years later, I wish I could write one of those letters to my younger self. If not to myself, to those new parents just now experiencing that new diagnosis of special needs. Yeah, your own dreams just got rearranged. But, God dreams so much bigger. Right now I’m listening to that very man/boy play with his brother in a way that back then I would have never dreamed possible. The gift of laughter is in our house. Thegift of joy is here after a season of hard days. These little giggles are more than a mom could ask for right now.
“But let all who take refuge in you rejoice; let them shout for joy forever. May you shelter them, and may those who love your name boast about you. For you, Lord, bless the righteous one; you surround him with favor like a shield.” ( Psalms 5:11-12)
I’ve been told I’m a bit of a worrier. Relax? I’m sorry, I don’t understand? Sure, I can give it to God … and then take it back again. What about you, new parents, are you worrying right now? For years (and years) one of the things I worried about was where my boy would live when he reached the age when he would need to move from our home. I researched and visited and laid awake at night stewing over the options. One day, it suddenly seemed he was already home, right where he needed to be. Now, I can’t imagine him living anywhere but here. Why did I waste so much of my days, so many nights, worrying about a plan he had all along? I finally have the gift of peace knowing God has a plan for us. All I have to do is rest in it. (Remind me I wrote this when I start worrying about something, deal?)
“… even at night when my thoughts trouble me. I always let the Lord guide me. Because he is at my right hand, I will not be shaken … in your presence in abundant joy; at your right hand are eternal pleasures” (Psalms 16:7-8;11)
Evan loves prizes for any and all of his achievements. We may have created a monster. Like eating a cookie. Since being sick this past year he doesn’t eat much at all. Eating a cookie is a huge achievement. I, on the other hand, do not need much convincing to eat cookies. But Evan, he gets gifts. And just for eating that cookie he wanted a prize. Evan is excited for the smallest of gifts. Just a small token of his achievement is all he wanted. Evan has the gift of contentment. We are blessed with his happiness in the little things.
“Those who walk in the fields to sow, casting their seeds in tears, will one day tread those same long rows, amazed by what’s appeared. Those who weep as they walk and plant with sighs will return singing with joy, when they bring home the harvest.” (Psalms 126)
Evan loves all things Christmas; the music, the decorations, the lights, and duh, the gifts! He brings an extra excitement to the holiday and reminds us that Christmas brings us a hope, a joy. His contagious joy is a gift. Christ’s presence is new again at Christmas. It’s tangible. Evan reminds us (all day) of the gift of Jesus. This Christmas I am re-remembering: “For behold, I bring you good news of great JOY which shall be to all people!”
I’m not gonna tell you there won’t be hard days within disability. But, what the younger me didn’t know was there would be so many gifts hidden among those days. The difficult days would bring a gift of drawing me closer to God, and this simple life would be so much sweeter than anything I could have dreamed. So, new parents, send out those announcements of joy, not disappointment and fear. You just received a gift.