A story about my Little Star Hudson today. (Hudson’s 5, has Down syndrome, and just got home from the hospital a few days ago.)

But first, for a quick second, think of your worst fear. (Several friends recently told me their worst fear is becoming a vegetable. Which is why they’re not reading/participating in the virtual book discussion on Ghost Boy coming up here on the blog on March 19th.) I totally get that and I’m ok with it. Because I have fears too. This past week I had to face one of mine head-on, and grateful to say I’m on the other side and alive to tell the story.

If you’re a parent of a little person, you want to be there for their every need. And if you’re a parent of a special needs child, that only intensifies. That’s why it’s so hard for me to go out of town or even away for a night, because I worry that Hudson might need something and be unable to communicate it. Hudson is mostly non-verbal. And while I can decipher much of his pointing, gesturing and noises, if you haven’t spent much time with him, you really can’t.

So if you read along here last weekend, you know Hudson was just getting sick. ( Catch up here. ) And by Saturday, he was dehydrating quickly, becoming lethargic. First he went to urgent care, then the ER, then was admitted to the hospital and diagnosed with influenza A, dehydration and hypoglycemia.

He ended up staying in the hospital thru Tuesday night, so he needed an advocate/caregiver there 24-7. Dealing with a new setting, an IV, different food, bed, room, sounds, caregivers etc. were all significant challenges for Hudson, who thrives on routine and familiarity. I spent the first night at the hospital with him, and between the checking nurses, IV bag changes and beeping monitors, I managed to snatch a few brief naps in the “bed”, a vinyl semi-reclining chair. I woke up feeling pretty rotten myself, and assumed it was just the rough night. But by early afternoon I realized that I too was getting the flu. Jon came in and relieved me and spent the next night at the hospital. Then he woke up the following morning, felt awful too. Murphy’s law. (No offense you Murphys out there, I’m sure you’re nice people and all.)

So here we were, Jon and I, both pretty sick with influenza A, and suddenly neither of us can be there at the hospital for our little Hudson. And that’s always been one of my biggest fears. That when push comes to shove and Hudson really really needs us, we won’t be there. What to do? Just thinking about it brings stress. But honestly, it was a great lesson in trust, as kind family, friends and even his big brothers willingly donned surgical masks and stepped up covering shifts at the hospital with Hudson. I discovered my fear was actually greatly disproportionate to reality, which is that there are many people who also love and care about Hudson and are willing to help. And interestingly, Hudson seemed to do just fine. Who knows, he probably even enjoyed the break. The truth is, many times our fears are worse than the reality itself. At least I found that to be true in this situation.

So in honor of Hudson our littlest star coming home from the hospital, and because my time has been very short on account of all that has happened…. I’m sharing one of my favorite stories about Hudson below: Twinkle Twinkle Little Star. Several of you early subscribers have read this before. Enjoy, and have a beautiful, healthy weekend. (We’ll try to do the same.)

(If you’re new around here, I post recipes during the week and muse on the weekend.)

Hudson’s adored music ever since he was a baby. I didn’t catch it at first. He was maybe 8 months old and we’d get in the car. I nearly always play music in the car. But every once in a while for one reason or other I’d forget to turn it on. And we’d drive for a minute or two, and Hudson would cry. I soon figured out that when I turned on the music, he’d be happy happy again. Worked like a charm.

When Hudson was just a little little baby, I’d sing Twinkle Twinkle Little Star to him. Often. We spent seemingly days rocking together. First in the NICU, then afterward in his nursery rocking chair. From the very beginning, when all else failed, Twinkle Twinkle could solve anything. It even worked in the grocery store aisle when, as a toddler, he lion roared at every Tom, Dick and Harry we passed. (Read here: Shut Up and Listen) Hudson’s five now, and we’re still singing Twinkle Twinkle. He never tires of it, always delighted anew to hear his favorite song.

Hudson’s attended music therapy since he was eighteen months old locally at the Manchester Community Music School. He’s  even famous (ha!), featured in their on-line digital view book. (You can see more of the view book here.) He gets really excited about going to music therapy each week. Learns all kinds of educational things set to music. Colors, rhythm, tone, speech, etc. And he also gets to see his beloved music therapist Christina.

It just so happens that Twinkle Twinkle Little Star and the Alphabet song are both the same tune. Did you know that? (Sure you did.) I’m embarrassed to say, and especially as a former early childhood Kindermusik educator, how late in life I realized that. But I think my singing Twinkle Twinkle Little Star so often somehow unwittingly set Hudson up for early success with his ABC’s. Because by the time Hudson turned three, he knew all his letters and sounds. He still can’t articulate many words, but he’s an ace with letters. Hudson loves the alphabet. And Hudson loves Twinkle Twinkle Little Star.

They say music is the universal language. And maybe Hudson’s love of music stems from being the youngest child in a musical family. But it seems that children with special needs in particular, have an even deeper connection to the expressive. Music, art, dance. It seems to be a vital part of their communication, a deep connection to a world they can’t always communicate in conventionally.

A friend was telling me about taking her little granddaughter to a dance recital last weekend. Her granddaughter is five years old, also has Down syndrome. This little girl was riveted, “danced” in her chair the entire recital, nearly an hour and a half long. Towards the end, she got out in the aisle, danced along for the last ten minutes or so. Can’t imagine too many people watched the recital on stage with such an expressive solo recital in the aisle. Neither she nor Hudson have many words, but music and dance are beautiful ways they express themselves.

So last week it was Charlie’s piano recital at the music school. It started in the evening right at Hudson’s bedtime. Sadly Hudson’s been sick for weeks now…heavy congestion that just won’t quit. (We’re working with an ENT for answers, but none yet.) Jon and I were debating whether both of us should go to the recital. Usually one of us misses for this very reason. Hudson doesn’t do well sick and up past his bedtime. But we took a gamble, decided to take him. Had plan B, an extra car, in case it didn’t go well. Hoped for the best. Especially for the performers!

Charlie’s up first, plays The Flight by Faber. All goes well. (With Charlie and Hudson.) The next few pieces go ok for Hudson, but he gets a little antsy. Squirms, needs a nose wipe, makes occasional Hudson noises, etc.

Then comes “the” moment of the evening.

A tiny little girl by the name of Edythe marches to the grand piano. No sheet music, she climbs up on the piano stool and boldy plinks out her piece. Loud, authoritative.

Twinkle Twinkle Little Star.

In my peripheral vision I see Hudson straighten up, pay attention. His face lights up like the new dawn. This is it. Grinning from ear to ear, Hudson is in his element. He knows this piece, every note, backwards and forwards. The final note echoes, then that brief milli-second of silence before the bow and applause. Eyes sparkling, Hudson peeks at me, then Jon. Arms stretched wide, poised, ready to clap, cheer. So excited. He claps longer, louder, more enthusiastically than anyone in that recital hall. He’s her biggest little fan. Hudson lasts just one more number that night and then Jon takes him home. But it’s a magical night all the same.

As I write now, Hudson sits on the sofa, listens to his favorite Kindermusik Fiddle Dee Dee CD.

“Ick, ick.” That’s how he asks for music.

The song playing is the operatic Meow by Rossini. Hudson’s laughing hysterically, giggling, hee heeing. The funniest thing he’s ever heard. (Tickles my funny bone too.) Hudson loves this song too, loves music.

Keep shining, keep twinkling my Little Star Hudson.

You may also like this post: Embrace the Gift

The post Little Star appeared first on Through Her Looking Glass.

(Hudson’s my youngest, 5 years old now. Hudson has Down syndrome.)

Hudson’s adored music ever since he was a baby. I didn’t catch it at first. He was maybe 8 months old and we’d get in the car. I nearly always play music in the car. But every once in a while for one reason or other I’d forget to turn it on. And we’d drive for a minute or two, and Hudson would cry. I soon figured out that when I turned on the music, he’d be happy happy again. Worked like a charm.

When Hudson was just a little little baby, I’d sing Twinkle Twinkle Little Star to him. Often. We spent seemingly days rocking together. First in the NICU, then afterward in his nursery rocking chair. From the very beginning, when all else failed, Twinkle Twinkle could solve anything. It even worked in the grocery store aisle when, as a toddler, he lion roared at every Tom, Dick and Harry we passed. (Read here: Shut Up and Listen) Hudson’s five now, and we’re still singing Twinkle Twinkle. He never tires of it, always delighted anew to hear his favorite song.

Hudson’s attended music therapy since he was eighteen months old locally at the Manchester Community Music School. He’s  even famous (ha!), featured in their on-line digital view book. (You can see more of the view book here.) He gets really excited about going to music therapy each week. Learns all kinds of educational things set to music. Colors, rhythm, tone, speech, etc. And he also gets to see his beloved music therapist Christina.

It just so happens that Twinkle Twinkle and the Alphabet song are both the same tune. Did you know that? (Sure you did.) I’m embarrassed to say, and especially as a former early childhood Kindermusik educator, how late in life I realized that. But I think my singing Twinkle Twinkle so often somehow unwittingly set Hudson up for early success with his ABC’s. Because by the time Hudson turned three, he knew all his letters and sounds. He still can’t articulate many words, but he’s an ace with letters. Hudson loves the alphabet. And Hudson loves Twinkle Twinkle.

They say music is the universal language. And maybe Hudson’s love of music stems from being the youngest in a musical family. But it seems that children with special needs in particular, have an even deeper connection to the expressive. Music, art, dance. It seems to be a vital part of their communication, a deep connection to a world they can’t always communicate in conventionally.

A friend was telling me about taking her little granddaughter to a dance recital last weekend. Her granddaughter is five years old, also has Down syndrome. This little girl was riveted, “danced” in her chair the entire recital, nearly an hour and a half long. Towards the end, she got out in the aisle, danced along for the last ten minutes or so. Can’t imagine too many people watched the recital on stage with such an expressive solo recital in the aisle. Neither she nor Hudson have many words, but music and dance are beautiful ways they express themselves.

So last week it was Charlie’s piano recital at the music school. It started in the evening right at Hudson’s bedtime. Sadly Hudson’s been sick for weeks now…heavy congestion that just won’t quit. (We’re working with an ENT for answers, but none yet.) Jon and I were debating whether both of us should go to the recital. Usually one of us misses for this very reason. Hudson doesn’t do well sick and up past his bedtime. But we took a gamble, decided to take him. Had plan B, an extra car, in case it didn’t go well. Hoped for the best. Especially for the performers!

Charlie’s up first, plays The Flight by Faber. All goes well. (With Charlie and Hudson.) The next few pieces go ok for Hudson, but he gets a little antsy. Squirms, needs a nose wipe, makes occasional Hudson noises, etc.

Then comes “the” moment of the evening.

A tiny little girl by the name of Edythe marches to the grand piano. No sheet music, she climbs up on the piano stool and boldy plinks out her piece. Loud, authoritative.

Twinkle Twinkle.

In my peripheral vision I see Hudson straighten up, pay attention. His face lights up like the new dawn. This is it. Grinning from ear to ear, Hudson is in his element. He knows this piece, every note, backwards and forwards. The final note echoes, then that brief milli-second of silence before the bow and applause. Eyes sparkling, Hudson peeks at me, then Jon. Arms stretched wide, poised, ready to clap, cheer. So excited. He claps longer, louder, more enthusiastically than anyone in that recital hall. He’s her biggest little fan. Hudson lasts just one more number that night and then Jon takes him home. But it’s a magical night all the same.

As I write now, Hudson sits on the sofa, listens to his favorite Kindermusik Fiddle Dee Dee CD.

“Ick, ick.” That’s how he asks for music.

The song playing is the operatic Meow by Rossini. Hudson’s laughing hysterically, giggling, hee heeing. The funniest thing he’s ever heard. (Tickles my funny bone too.) Hudson loves this song too, loves music.

Keep shining, keep twinkling my littlest star.

Related post: Embrace the Gift

The post Twinkle Twinkle appeared first on Through Her Looking Glass.

We all have life defining moments. We don’t know when or where they’ll happen, we just know they do. And usually when we least expect it.

If you don’t know, one of my little boys has an extra chromosome. It’s mind boggling that something so microscopic and invisible to the naked eye contributes to such endearing and frustrating behavior.

Shut Up and Listen  by Allie Taylor

One frigid morning last winter, I learned two families we dearly love had the flu. No big plans were in place for the day yet, and I clearly felt the “call” to make them healing Arroz Caldo (Philippine Chicken Soup.) We all have our role to play, and I knew mine.

The cupboard was bare, and a grocery run was in order. I bundled up little man for the trip. He was three, and not yet walking. The thermometer read -3 degrees that day. I clearly remember, because it was also during that cold snap that he refused to wear shoes anymore. Or socks. (Timing is everything.)

We pulled into the parking space and I opened his door. Out flew two little sheepskin boots. One landed in a dirty snowdrift, the other on the asphalt. He giggled. I wrestled the boots back on. They must’ve been chillier the second time around, because I know my hands were frozen.

Into the store we went. He gleefully kicked the boots off again. I retrieved them, tucking them into my bag. We approached a shopper on aisle one, and my little passenger yelled loudly: a shrill, startling sound, ending in an unfriendly growl.

(He’d been practicing his lion roar.)

“I’m sorry, we’re still working on our manners,” I apologized. (I’ve been repeating that for a number of years now.)

Into the cart went the chicken. Another shriek further down the aisle, directed at a pleasant, unsuspecting elderly shopper. She stopped smiling.

(Can I go through the floor now, or later?)

Now to find the rice. My gentle shushing had no effect. Our shopping trip continued in like manner. On aisle eight, I had an epiphany.

In desperation, and plumb out of apologies, I hummed “Twinkle, twinkle little star”. Little man adores music. He leaned in with rapt attention, cheerfully filling in the last word of each line with great anticipation and excitement. The art of distraction. I sang fifty verses of “Twinkle, twinkle” that morning. (Or a hundred?) But it got us through the produce section, the chicken broth aisle, and the bread aisle without incident. I felt nothing like a twinkly diamond in the sky. Mostly, I wanted to be up above the world so high. Like in outer space. I just wanted to disappear.

The day continued as poorly as it began. I sliced my finger mincing the fresh ginger and onion. (I know you’re worried. But no, I didn’t contaminate the soup.) It took me hours to cook up a quadruple scratch batch of my Arroz Caldo , enough for the two sick families and my own.

My little man was of no help that day. Early afternoon he crawled into the pantry, tipping the nearly full gallon of vinegar. But first he popped the top. (The pantry smelled vinegary for months.)

Mid-afternoon, I packed my adorable, stinky, vinegary “helper” plus the soup pots into the car. We were off on delivery. In the rearview mirror, I spied boots hurtling through the air. No surprise there. He was weary of the day, the car and boots. (Me too.) His all too familiar grocery store salutations drifted up from the back seat, now directed at an audience of one. Me. The forty-five minute drive felt interminable.

I’d texted to tell her I was coming, but she never saw it. A weary mom answered the door and burst into tears. I joined in. She’d been sick on the sofa. They’d been seriously sick intermittently all winter. Just that morning, her little girl specifically asked for chicken soup, but mom was too sick to go out. Instead, she prayed a chicken soup prayer from the sofa. And several hours later, I showed up on the doorstep.

I don’t pretend to know exactly how it all works. But I do know she was supposed to pray for that soup. And I was supposed to make and deliver it. She was supposed to receive the soup as an answer to prayer that day. We were both supposed to weep together, cementing new friendship over a steaming pot of chicken soup. Providentially, we were doing exactly what we were supposed to that day.

It’s taken me four decades plus, but I’m just learning to listen. These are life’s defining moments. Worth “Twinkle, Twinkle” ad nauseum, flying socks and boots, stinky pantries, stinky kids. It’s costly in time, effort and tears. But the overwhelming joy of love and service outweighs the sacrifice. I’m reminded to slow down, keep my mouth shut and just listen. Because I want to hear that still small voice, and I don’t want to miss my next assignment. (Sure hope it doesn’t include vinegar.)

Maybe you have a life defining moment to share about today?

“Prayer doesn’t change God – it changes me.”  C.S. Lewis

The post Shut up and Listen appeared first on Through Her Looking Glass.