Please, See Him as More

When you have a child with special needs, it happens every so often, you forget people think of your son as one of "those people." I don't know if they think the disability of my son is contagious, or just so alien as to frighten them from interacting. We'd gone out to get some needed supplies at a big box store, and had to take the elevator. I know we're supposed to use language opportunities in the community, but the lack of privacy makes my own interactions with my own son in the elevator seem like a made for TV skit, as I ask him to push the up button and he does and then high fives me. The woman who gets in the elevator after us gives an uneasy smile and scoots back a bit.

My son's still reveling in having pushed the right button but I see it and I can tell, she sees him and she's afraid. I want to yell, "He's six. He's about the size of a four year old. He wears 4T shirts and diapers for crying out loud! He won't bite!" I know he won't bite. He grinds his teeth, they're dull stubs of what a non disabled kid's would be but they're clean. I know because he loves brushing them and I have to stop him sometimes from just walking around with the toothbrush in his mouth for the fun of it. We got him a musical one and he knows when the music stops, brushing is over. But he also knows how to re-push the button.

We get into the store and I wonder what a Special needs mom always wonders after one of these encounters however brief, how does the rest of the world see him? If I weren't here, what would they see? Would they know this little man who brings me my coat from the closet when he sees I have my purse and keys? Would they know we laugh because he slips bread slices under the door when he wakes and gets up on Saturday and we haven't, to let us know, he'd like some toast please. Would they know he dances and can say all of his siblings names but not his own? There are a thousand little things I know because I see them. He says "Hello." to everyone, and waits until the bus drives back by our walk to wave and thank the bus driver at the end of the day?

I can count the words of his vocabulary, but not measure the size of his heart, for he loves all of us without reserve, and constantly touches mine with his depth. He waits for grace and nods when we begin. "Now we can start." he seems to say. He waits to eat when others won't. He turns on the lights in the morning if I haven't, and wants the lights out if we light candles. He understands the tone and the sense of things, if not his letters and numbers or how to use the bathroom.

It doesn't mean he's a saint. He throws tantrums and blocks and wrestles with the best of them, but you always know why he's mad.  It's usually because someone in his family thinks he won't notice if they snitch a fry he'd gladly give if they asked, or takes a toy he wanted. He has an innate sense of worth and stands strong when he feels he's been wronged, pointing at whoever did something and shouting "UDIDTHAT." which usually results in a confession and conviction of whoever did what.

He can't tell the world what he knows, only what he feels. And you can't know it unless you're willing to allow yourself to really see him, to know him beyond the diagnosis and the slanted eyes and flat face. You won't know him by his reading scores for there are none, or his IQ, but if you just stayed here for a moment, and really watched him delight in a puddle or crunching the last of the snow or yipping at a dog, you'd see, he's not so scary. He's a boy, he's my boy, and he'll always be young in spirit and heart, even if not in body. Stay with him a while and you'll remember to take joy in music, in the beauty around you, and the simplest of things. Perhaps that's what scares the rest of the world so much, being reminded of how much we now demand in our lives in order to be happy, and how very little is actually required,

Be Not Afraid, I Promise You

I listen to Catholic radio.  It started when I decided listening to the news made me too angry and listening to music sometimes meant my toddlers knew tunes I didn't want them to know.  At first, it was just mass. I'd put it on while I cleaned the house and while I still grumbled when I found the occasional apple core or yogurt cup hidden by some hungry child who knew they weren't supposed to sneak snacks, I grumbled less and felt less irritated by the mere repetitiveness of having to clean again the next day with mass to look forward to as company.  All of Heaven and Earth could sing to me while I wiped down the counters.

Yesterday, I heard a husband who sounds broken, because his wife is afraid.  They are expecting their third child, and that baby has been diagnosed with Down Syndrome.  She fears the future. She fears what God is asking.  She is considering the unthinkable, thinking abortion will take away her fears, her worries.  Hearing the pain in his voice, I don't need to imagine the fear in hers, I've felt afraid of the future when I expected our ninth.  I know people whisper to you, "Abort. Try again. Do over." in so many words.  

But each of us is unique.  Each of us has a soul.  Each of us is part of God's masterful luminous joyful glorious plan.  It is only sometimes sorrowful because we live in this fallen place, but the divine reality of each of us being a gift is baseline.  I wish I could hug this woman and tell her what I know.

This child is a gift.  This child will be different, but the future is not unbearable, it is simply unknown. It just feels unbearable because all the unknowns come crashing down at once when you get a diagnosis of anything less than perfect.  

All children come to us helpless and with struggles we cannot yet know.  Some have severe allergies, others learning disabilities, some have tempers and others struggle with making friends.  Each child comes with an unknown future.  Oddly, with children who don't have genetic markers for conditions, we don't agonize about the future nearly as much, though they will still have to weather illness, school, bullies, frustrations, heart breaks, skinned knees, bad dates, bad haircuts, disappointments from others and from themselves and yet, we think only of the glittering promise of the unknown with genetically "normal" children.  I promise you, he will surprise you out of fear with his capacity and his love, and your capacity for love.

 Because this child has a fragile aspect you already know, holding him will feel all the more precious, all the more delicate, and you'll celebrate his speech, his walking, his everything as if it were winning the Boston Marathon, because for him, it is.  He will come and bring with him, the opportunity and purpose of many holidays and feasts.


I also promise you out there, if you are faced with a diagnosis of a child with a less than perfect genetic or physical or mental make up, this is not the end of your world, don't let it be the end of his or hers because you were afraid.  Love stretches our hearts the way pregnancy stretches our bodies.  We will never go back to being the smaller creatures we were, once we begin loving someone new.  And it's okay to be afraid, it's just  you have to know, you have to believe, you have to trust, that love is always always always, stronger than fear, stronger than death, stronger than all of the unknown.  

It is our job as parents to welcome each child into the present, and to show them as much love as possible in the present, and little by little, to chip away at how to make the next moment of the present, more luminous.   It's work. It's hard work, and it takes a lifetime, but every one of us requires a whole lifetime of being loved, none of us survive without constant doses.  

The last thing I'll tell you my unknown sister, is hold tight to your husband.  Hold tight to each other and God and it won't be all drudgery, it won't be all darkness.  You'll be stunned when the sun breaks through in your heart, and you find you can smile and even laugh, and all things again seem possible. 

 Please pray for this unknown sister and her husband, and for their family that they will be wrapped in love, wrapped in courage, and given the knowledge that this baby is a joy for them to discover, not discard.     This little boy is a gift.  He will grow all of their hearts, and he will be a source of light and joy to the world that seems to covet darkness.

P.S. I wasn't going to write on this, I'd already called in and asked fellow Catholic writers to pray for this family.  Then I looked at the Loyola 3 Minute Retreat for the day as I cleared out my inbox of emails.  I don't normally, but today, the Holy Spirit prickled.   If you haven't clicked on the link, the first words are from Genesis 22: 11-12.  "But the Lord's messenger called to him from heaven, "Abraham, Abraham!"  "Yes, Lord," he answered.  "Do not lay your hand on the boy," said the messenger..."  and so I'm writing here for whoever reads this, asking you to pray for this family, pray for their three sons, for their marriage, and for them to know God loves them all.

Like a Promise

Every once in a while, Paul's Down Syndrome announces itself by its differences. 

This past week one of the schools my son might attend next year held open house.  Within moments, I knew it wasn't a good fit.  The program lumped Kindergarten to 2nd grade level students with developmental delays into a single classroom and while I know each year a class dynamic changes, what I didn't see in any child anywhere, was someone who resembled my Paul.

There were some non verbal kids, but none as non verbal as mine. 
Some needed assistance with hygiene, but usually owing to a physical restriction, not a developmental capacity to willfully and consistently act.
There were kids with Down Syndrome, and yet I knew, I could tell, Paul would struggle to keep up with them on the playground and in the classroom. It did not feel promising.

I've been a special educator.  I know how a setting like this works, and I know when a child is the lowest or the highest by too much, there is tremendous frustration both for the child and the educators.  You want them to flourish, and with all the strikes against a child with developmental delays, you don't want to waste a year of instruction or even a day, in a placement where they will be bored, struggle, or simply not get the instruction and support they need to thrive.

As a mom, I felt protective and demoralized.  I didn't want my son alone.  I didn't want him isolated any more than necessary, and I could not see him being part of a group of friends when everyone there could tell the teacher and the class and even strangers what they had for dinner last night, and I can't get Paul to reveal what he's having for lunch while he's eating it.  It's an ache I haven't had to hold too tightly, as he is surrounded by siblings, he's been young, and he's small so his delay doesn't seem as great as it actually is when I put him in a classroom with children closer to the scale by which one is usually measured. But that day, I felt the weight of it, and the promise that the weight would only get heavier as time passed.

It happened again at mass, when Paul squirmed and chattered and laughed so loudly I had to take him out of the main body of the church and then even behind the double wooden doors, he proved his capacity to be mischievous leading to a hasty retreat to the basement.

Alone with my son, I really looked at him. His handicap doesn't normally plague my brain or my heart.  But today, it ate like acid on my mind. He's five. He's not potty trained.  He's five. He should be in Pre-school. He should know his ABC's and be able to count to ten and ride a bicycle with training wheels.  He should be able to walk to the car holding my hand and not require a death grip to ensure he doesn't bolt toward the street.  I groused at God, "I thought following you meant my burden would be light, the yoke easy.  This doesn't feel easy. I can't even stay in the back of the mass staring at it through the splinter crack of the two doors!" My heart whined with a two year old's "You promised."sort of pain.  My hurt must have shown on my face because another woman came down the stairs with her son, twice my son's size but also evidencing a developmental delay. 

I didn't know her, but she stopped and hugged me.  "Some days are like that." she said, and told me her story of her husband leaving before he was born, of her son being the same age as mine, and in a special program.  The bathroom momentarily forgotten, her son began racing back and forth in the hallway with mine in an improvised unspoken game of tag.  I was being shown, he wouldn't be alone.  Her son asked me his name, "I'm Stevie." he said.  Paul ran after Stevie and I heard something from my son that could be his name.   He'd keep up in his own way, and there would be friends for my son. It felt like a promise.

They'd sat behind us in the pew back when we were sitting in the pew.  I'd noticed the woman next to her,  a woman the same size as her, but with a face identical to my son's.  This lovely person hugging me took care of her sister for her parents when care was needed in addition to her own only child.  When we returned to the mass, I knew why we all had to be there that evening. It wasn't the normal mass time for either of us, but she had come with her sister and her son for me and mine.  Having her sister made her less afraid to have her son.  Having both made her able to hug a total stranger who was having a hard mass day because she knew the cross I was carrying, and how momentarily heavy it felt.  The stinking pity party I'd been having evaporated by the mere touch of the hem of Christ's garment.  The weight lifted, my heart lightened and all it took was a game of tag in the church basement and a hug.

We exchanged numbers and though I haven't called her yet (she told me she'd be on vacation this week), every time I see her name written in green colored pencil on the scrap of paper as I rummage through my purse, it gives me a bit of hope about Paul's future.  I've got another visit next week for Paul's placement and a play date to schedule with Stevie.  And his future, though as unknown as my own, feels like a promise of lighter days to come.