People…not diagnoses and labels. Children, precious gifts…not diagnoses and labels. Husbands, wives…not diagnoses and labels.
I am beginning a series that has been floating around in my head for the last several weeks. So many of our family and friends are going through such heavy things right now, including my own. This concept of fighting for joy, choosing joy, keeps coming up in conversations, and in my mind, over and over again. What does choosing joy look like?
Today is Halloween. It is not the biggest of holidays. There are others–Christmas, New Years, Thanksgiving–that are often filled with gatherings and traditions we look forward to and seem to plan for weeks or months ahead of time. If we have children or family members with special needs, or who may have a tendency to get overwhelmed easily, we try to prepare them for these events. We tell them the stories and help them picture in their minds where we went the year before, who was there, the games we played, the decorations we brought out. We try to keep our expectations realistic, and may even pre-plan exit strategies for when things just get to be too much.
But Halloween…somehow is another one of those things that just sneaks up on us!
I think the Lord gives families with special needs (I hate that phrase, by the way, but I have yet to come up with a better one…) a special kind of amnesia. Maybe it is a bit like the amnesia moms have for how much pain and discomfort there was with pregnancy and delivery. Somehow that tends to fade away and all of a sudden we decide we would love to have another baby!
Special needs families have the same sort of amnesia when we think about common events or dinners or outings or holidays that other people just take for granted. We somehow forget that things may turn out disastrously, or that they actually did turn out disastrously the last time we tried to go out to dinner at a restaurant for a fun, spontaneous, celebratory meal, and as soon as we got there we remembered…that there were tons of distractions on the wall, some of them unique and fun, some of them too overwhelming or scary. Then, when the delicious food arrived (that I didn’t have to make, plan, or prepare), and we were about to dig in and enjoy it, our precious littles took a few bites, and then the first one declared loudly that his bowels were speaking and he needed to go NOW! Ok, Daddy will take you. Phew, disaster averted. Back to enjoying that food…until little #2 suddenly declared, “I think I’m going to barf!” Ok, my turn–quickly off to the bathroom, grabbing little #1’s toy bucket just in case. Phew…disaster averted again, only a potty call, not an illness. Back to the table. Maybe the food was at least still warm…until favorite song came on and little #1 could not resist standing up and moving his body around, dancing without fear or shame. Thankfully others nearby were engrossed in their conversations and the music was loud enough they didn’t seem too bothered. At least the boys hadn’t started hitting each other, or wrestling in the booth. Oh wait, spoke too soon…time to go.
This is the amnesia I’m speaking of! God’s gift to those of us with special families. Somehow we forget enough about these events that we keep trying! We keep hoping and attempting to have “normal” family moments, traditions, memories.
Halloween is full of that kind of amnesia.
It always seem exciting for the boys to pick out their costumes and try them on weeks in advance of the actual day. Then there is always the parade in our home of costumes of Halloween’s past. And you never know when a fully masked spiderman may show up randomly for breakfast one day!!
As soon as the calendar says October, we hunt for the black and orange box of decorations in the garage, and the boys eagerly open it and start pulling and tossing things out of it, “Remember this?” “Remember this?” Excited about their findings…and then in a flash, on to the next thing that captures their attention…and then sometime later, mommy will actually hang up the decorations.
We always look forward to going to the pumpkin patch…or more often than not, the grocery store parking lot “pumpkin patch”! Even in the parking lot patch, we try to capture the moment, excitedly hunting around for those perfect pumpkins to carve…until the boys forget to be careful, and knock over a display, or crash the cart into an unsuspecting shopper, or it starts to rain and blow freezing rain and we are rushing to make our choices, pay, and get back into the warmth of the car…Hopefully we captured a moment on film of those rosy cheeks and mischievous smiles sweetly sitting on the harvest display backdrop the owners have prepared for taking family pictures.
And then comes the carving… We’ve chosen the night. We’ve gathered our tools. We’ve covered the table with newspaper and grabbed some buckets to catch the mess. We eagerly help our littles choose the patterns or faces they would like for their pumpkins, and can’t wait to capture those smiles as they pull off those tops and reach into that funny, squishy goo. Except we have amnesia. We have forgotten that one of our littles doesn’t understand what this is all about. There is too much sensory input for him to take in. He doesn’t want to try to feel all of that, or join in on this “fun”. This doesn’t look like fun, this looks crazy. He would rather play by himself in his car world where he knows he is safe. So, we step back. We try to enjoy with our others who are doing what “everyone else” does this time of year. And they get it…easily and effortlessly. And we dig deep. Is this a moment that we try to force a little bit past the comfort zone and “make him” try it, “make him” feel it just a little bit? It’s so heart wrenching even in those little moments when your mind is swirling with grief over the realization that it will never be “easy”, that everything will probably have to be “taught” to him, even when others somehow just know how things are supposed to go. Do you “force” him to do something you know is hard for him, or will be really uncomfortable for him? Who knows what the right choice is? Thankfully, in these moments, the same moments I think the Lord has given us amnesia for, He also gives us a still small voice, in which He leads us and says, “Yes”, “just for a few moments draw him in, bring him in with the family, have him try it, have him feel. Give him an end point, allowing him to feel safe and sure, ‘just try two scoops with your hand, and then you can go play again.'” And maybe you are able to capture a few moments. Maybe there aren’t smiles yet, maybe there are even tears. But maybe the next year, there is a half-smile. And the year after that there is a full smile. And the year after that, there may be full giggles!…as he remembers what this funny holiday tradition is all about.
During many of those years, there may be frustration, and arguing, and fears that sometimes overwhelm…which leads us to…
Trick or treating. Amnesia. What a fun event! Dressing up in costumes, seeing the neighbors, getting free treasures and treats, and then bringing them all home to sort and count and enjoy! Amnesia. What a confusing and overwhelming event! One of our first years back in Minnesota, we brought our family out for this night of fun and excitement, trick or treating, in my parents’ neighborhood where I had grown up. Our kids were ~7, 3 and two. When we came back my parents asked me how it went. Thankfully my family was not in the room, as I sadly replied, “We were trick or treating with Anxiety, ADHD, and Autism…” My 7 year old (ADHD) kept wanting to run up ahead to the next house before we could get the littles back onto the road. My 3 yr old (Autism), did not at all understand what in the world we were doing. He loved getting candy after we went to the doors and said this funny thing, “Trick or treat!”, but then he immediately cried wanting to be able to go home to eat his candy. What else would you do with it? And why would you wait? And why would we have to do this over and over again? My husband (Anxiety–I share this with his permission), was scared to death of all of the unknowns–in this neighborhood he did not know, in the dark of the night, when his three precious gifts were scattering about, where other people and cars might possibly come into their way. He was paralyzed by these fears as his own heart was breaking realizing our middle was struggling so much in this seemingly easy thing, and our oldest had no qualms about running ahead without us, without looking sometimes, seeming to not even have awareness of the rest of his family.
Amnesia…because we tried it again the next year…and the next year, and the year after that. And each time it got better. And each time they, and we, remembered more. And each time there were longer moments of true smiles and true understanding and true joy!
Two nights ago when we carved our pumpkins, yes, there were still moments of frustration and arguing and battling wills. But there were longer moments of true laughter and great memories and true joy!
And tonight we will go trick or treating, and our “big” will go off with his friends, safely, enjoying this tradition. And our littles will be with us…and we will see how it goes! But we will keep trying and keep gently pushing… Not to conform to traditional memories just because everyone else does, but to see how far their minds and their bodies can go as they explore this world through these feelings emotions and special lenses the Lord has given to them, and to us.
I choose JOY!
I choose the people, not the diagnoses.
I choose the faces and laughter, not the frustration or tears.
I choose the joy and the freedom, not the heaviness or despair.
I choose the happy moments (no matter how brief), not the endless hours and days.
This is a battle. The Bible says, “The thief comes only to steal and kill and destroy. I (Jesus) came that they may have life and have it abundantly.” (John 10:10) The enemy wants to steal our joy. He wants us to feel hopeless and full of despair, feeling like our days and years are endless.
But the Lord gives us this “amnesia.” He gives us hope. He gives us these brief moments of joy and laughter and smiles and warmth and peace and contentment within our days, we just have to look for them. And believe me, I realize that some days we have to look hard! And those moments are only 1 millisecond long before all chaos breaks loose again. But they are there. And if we aren’t able to capture them on film or in video, we need to literally pause and capture them in our minds. And in those moments when we are struggling and have nothing left, or we are lying in bed at night wondering, “What just happened?” or “How am I going to do that again tomorrow?”, we need to string those millisecond frames together in our minds and make our own new movies that we can cling to, and be thankful for, to have hope, that in time those milliseconds may become full seconds, and then those full seconds may become full minutes of peace and laughter and joy, and then those full minutes may even become full hours of smiles and faces and joy!
We must have hope. If we can’t find those moments on our own, we need to seek out others whom we feel safe enough with to allow into our messes to help us to see those moments of joy, those evidences of hope. And we must also pray and ask the Lord to remind us of all He has done for us…pray to stop striving and holding on, and instead, allowing us to rest in Him, and all that He has done, feeling His arms wrapped around us…true JOY.
Today I heard two songs with these reminders…
Jeremy Camp’s, “He Knows”, describes one of the names of God, El Roi, which means, “He sees”. Our Lord sees everything we are going through, even when it seems no one else sees or understands, He does and He knows. The lyrics that caught me were these, “Every time you feel forsaken, Every time that you feel alone. He is near to the brokenhearted (Psalm 34:18). Every tear, He knows. We may faint and we may sink… But the dark begins to shrink when you find the One who knows.”
And Casting Crowns’, “Just Be Held”, had these lyrics, “So when you’re on your knees and answers seem so far away, you’re not alone. Stop holding on and just be held. Your world’s not falling apart, it’s falling into place. I’m on the throne (another description of one of God’s names, El Elyon–Sovereign, Most High, over all things). Stop holding on and just be held. If your eyes are on the storm, you’ll wonder if I love you still. But if your eyes are on the cross, you’ll know that I always have and always will. And not a tear is wasted. In time, you’ll understand. I’m painting beauty with the ashes. (Isaiah 61:3) Your life is in My hands.”
Psalm 71:14, 19-23 “But I will hope continually and will praise you yet more and more…Your righteousness, O God, reaches the high heavens. You who have done great things, O God, who is like you? You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again. You will increase my greatness and comfort me again. I will also praise you…for your faithfulness…I will sing praises to you…My lips will shout for joy, when I sing praises to you; my soul also, which you have redeemed.”
“My lips will shout for joy…”
I CHOOSE JOY!! Faces and people and moments…not diagnoses and labels.
But it did not fall... 