Lion and Magic Boy

Early one morning during my recent vacation in Colorado, I awoke from a dream. It was a long dream filled with many images and with people that I love. Each segment of the dream was like its own separate entity, its own little scene, yet all connected in some magical dreamlike way I have yet to discern.

One scene particularly stood out, not for its imagery or for its emotional impact or for its message. It stood out because of its honesty.

It was a short little scene. In it, Nathaniel had been struggling with caring for Eric in his stroller as we all walked along a sidewalk, trying to get him to sit down. Eric got loose and strode off, and Nathaniel was overcome with annoyance and frustration. Eric moves quickly and sometimes surreptitiously in life and did so in my dream: soon he was way off in a parking lot that was fraught with danger. Two teenage girls caught him and I could see from a distance that he was okay and being cared for.

The thing is, when I awoke I considered the dream scenario, considered how I would feel if Eric did indeed escape, say, in a parking lot but one with no dream-teenagers to rescue him, and if something happened to him. Something momentous. Something tragic and final.

And I thought … it would be a relief.

I know this isn’t a popular notion. I know there will be those who are uncomfortable with my words. But I need to say them.

It was recently pointed out to me that some of what I have written before about Eric seems to ring somewhat hollow, that it lacks truth. I have said before how I love Eric. I think that part’s true. I do love him: how he smells, how he feels, his smile, his humor.

But if I could change anything about him, I would take away the fact that he has Down syndrome.

And that feeling is strong enough to feel relief at the thought of some dream-mishap befalling him, something that would erase these few years of his life and give him a chance to start over.

It helps, I suppose, that I believe in reincarnation the way that I do. It does take some of the burden away from wishing tragedy upon myself and my family this way.

But how do I reconcile this? How do I love someone, someone who shares my flesh and who was a part of my body for a time, and also wish his life to be over, changed, renewed, and wish a transformation both for him and for myself? What does this say about me?

For this, I haven’t any answers.

[tags]down syndrome, family, disability, life[/tags]

It’s been awhile since we had an update on Eric. The walking thing was huge when it happened, but it’s old now. After all, he’s been doing it for like 1/7 of his lifetime. No big deal. Here’s some more:

1. No more high chair. Not sure how it happened, but he has a place at the table now, in a regular chair. And he’s FAR surpassed any claim Serena ever had to being Crumb Champion. By far. He wields his own utensils now, too. There was a time when I wondered if this would ever happen.

2. Likes being read to and pays attention to the book. Points things out and talks about them.

3. Dances. Often helpfully suggests we turn on music for this purpose.

4. Runs. Well, sort of. It’s more like a very purposeful walk.

5. Stands on the couch. And there’s not a damn thing I can do about it.

6. Puts on his pants. Often several pairs at once.

7. Fake cries. Fakely. Glancing up to see if anyone is noticing.

8. Carries a stuffed bear around with him and feeds the bear things he cooks in the wooden kitchen. Offers us food also, often balancing a wooden mushroom, for instance, precariously on a plate. While walking. This isn’t easy.

9. INSISTS and OBJECTS. Often. And loudly! I’ve said this before, that for months after Eric was born I thought he’d be the “easy” one. Clearly a case of counting chickens well before they’re hatched. Eric has a plan and DEMANDS its implementation. If only we knew what he was talking about more often.

10. The talking thing. He’s doing much more of it, and repeats words all the time and uses them spontaneously (sometimes not quite the right word, but close). The trouble is his articulation. Down syndrome = low tone = facial muscles aren’t as strong = hard to understand. But he’s soaking up new words like a sponge, and much of the day is about naming things. He knows what they are already, but now he’s practicing saying them himself.

Eric, you’re a bit of a handful but I wouldn’t want you any other way. You make messes, break things, object loudly when you don’t like something and insist on having things the way you want them. You live your life with PASSION and with HEART, and I’m so very proud of you!
[tags]down syndrome, early childhood development, milestones[/tags]

I just found out that a little girl who’s part of our Waldorf school community is in a coma. She somehow got into her grandmother’s medication over the weekend; no one knows the whole story. But the fact is, she’s hooked up to life support and in a coma. Her parents may never see her again any other way.

The thing is, Morgan has Down syndrome. And she’s about two months older than Eric; her fourth birthday is in September. When he was younger I used to match his development to hers: she wasn’t as frail and fragile as he was in the early months but things evened out after she had pneumonia two winters ago, and while he grew stronger she stayed about the same. She began walking not that much before he did. And her personality has always been similar to his: willful and mischievous. The child in a coma could just as easily be my child.

I don’t really know what to say about any of this. I don’t think there is anything I can say. But if nothing else, this brings home the need for even more vigilance with watching Eric and making sure he doesn’t have access to things that may hurt him. He doesn’t possess the presence of mind in terms of his own safety that his older brother and sisters did. And even more, it brings forth a terrible reminder of the awful fragility of life: one moment a child is laughing, and in the next life as you know it is forever changed.

[tags]down syndrome, coma, tragedy[/tags]

We have lots of rituals in this house. Children thrive on rituals, and mine seem to be masters at this. With their situation already being rather disorganized and erratic what with heading to their dad’s house every few days in a schedule that changes often, they really need some things that always remain the same. I’m sure they have developed rituals at their “other” house as well, since children seem to create them, but I treasure what we have created together over the years.

One of my favorites has been with Serena. Being a middle child, she’s often rather left out of things: she’s too young to have the perquisites that Nathaniel enjoys, and Eric, being Eric, demands a fair amount of attention. Serena’s not shy about being demanding herself, but there’s a fragility to her that makes me want, some days, just to hold her.

Thus, the Morning Hug.

It began in our house in Colorado, where wide-open spaces on the prairie outside lent themselves to the wide-open spaces indoors. There was lots of running room, and Serena, composed of nothing much more than a tangle of arms and legs, can run. In fact, I’ve seen her skimming over the earth sometimes, looking like a gazelle thats running for the sheer joy of flying.

Indoors, of course, is slightly another matter. Furniture provides obstacles, as do people and animals, not to mention errant toys thrown by small boys.

But we found a clear space in the kitchen where she could get about a twenty-foot running start and then leap into my arms for the hug.

Quite a fetching sight, really, and it never failed to amuse Eric from his high chair last year, Eric who watches everything and misses nothing.

Since moving here to Pennsylvania it’s been more awkward to have Morning Hugs: the space is limited, there are more animals, and the strewn toys seem to multiply whenever I turn my back. Plus Serena simply isn’t here every day, and we forget often as a result even when she is.

But yesterday we remembered. She came in for a landing and then forgot to jump and we all laughed together, so she went back to her place for another try. Eric had meanwhile positioned himself at a place about halfway between Serena and me and then suddenly came walking toward me as fast as he could with a huge grin on his face.

It was Eric’s first Morning Hug.

I quickly bent down to accommodate him. There was no way he was going to leap up into my arms, especially since a fast walk was as close to a run as he could manage.

But still: this was a moment he’s waited about a year and a half for. The look of joy on his face will carry me through my entire lifetime.

Dear Eric,

Now that you haven’t been sick in the past, what ten days or so, I remember again what a total and complete joy you are to be around most of the time. Sure, you get hungry and tired like the rest of us, but you do your complaining with a certain grace I am sure many adults would admire.

I especially love it when it’s time for you to fall asleep. I may regret this later, but you are the first and only of my children with whom, at your age, I still lie down next to and await your slumber. No wait, I take that back: Serena was still nursing to sleep when she was your age (is that possible?), but soon afterward I shifted her into the next phase, which MUAHAHAHA tells me that it’s time for your shift as well. Perhaps.

Anyway, I love lying next to you, whispering to you, hearing you whisper back to me smiling, and nod your head earnestly as if you are telling me the secrets of the world. I can’t make heads or tails of what you say in terms of English, but you speak to me in a language deeper than that, a language that I understand perfectly. In the dark then, we reassure one another, telling each other how much the other is loved, that we’ll still be there when we awaken, that morning will indeed come and we’ll have so much fun then, just as we did today. I hear and sense and feel you say these things to me, just as I am saying them to you.

And then you shift away and enter your Eric-going-to-sleep world, and soon drift away into your dreams. It’s a wonderful and magical place that you go to, most of the time, I know this.

Daytimes, there is much going on. You have taken to using small gestures that come with the presumption that we all know what they mean. Pointing behind you generally means that there is something in the kitchen that you want, but what? The game begins: a pancake? a drink? a cracker? a spoon? what? what, Eric, what? Each successive “what” intensifies your demand; you are telling me what, can’t you see, Mama? I am telling you! That! I am pointing! It is clear! That! That! THAT!

Eventually, I find it. the what, the that. And then you grin and we move on, the tension lifts and we all breathe a small sigh. Until the next thing, the next “that”.

Thank you for the magic you bring with you. It surrounds you and enfolds us all, and we all bask in the glow of that inner light of yours that shines through your fragile porcelain facade, so brightly.

Until next time,
Love,
Mama

[tags] Eric, down syndrome, love, boy, heart[/tags]

Eric has been helping me unload the dishwasher for several weeks now. He stands at the open dishwasher and hands me things; one knife, one fork, one cup or plate, at a time. It’s a good exercise for both of us: as he hands me the item I say its name, which he repeats, or beats me to the punch and tells me what it is as he’s handing it to me. It’s all slightly unintelligible when compared to English, but that’s not the point. The process also lets me slow down a little, setting each item in its place with the care that Eric takes in handing it to me; a good lesson in being in the moment and considering each piece of the day with the same weight and gravity as the next.

Today Eric kicked up his routine to the next level. Having observed me take two large, clean plates out of the dishwasher and place them on the table to later be covered with French toast and maple syrup for Nathaniel’s and Serena’s breakfasts, Eric took a smallish plate out of the dishwasher, toddled over to the table with it, and placed it carefully in the space near mine where plates for his own meals go. I asked him if the plate was for his own breakfast and he grinned widely.

I may have him wash windows or do the dusting soon.

It seems like there is a wonderful window of opportunity with children to get them cheerfully and voluntarily involved with household chores. Waldorf kindergartens make use of this fact and know that children like to imitate the acts they see modeled before them, and every day in each kindergarten there are groups of children busily washing playsilks or folding large cloths or even knitting. I’m thankful that Eric has reminded me in his not-so-subtle way that he really is a Big Boy now and he not only knows what’s going on around him but he wants and expects to be an active part of it.

Dear Eric,

You. Yes, you! I’m talking to you! I know you totally hear me, but even at three years old your powers of selective hearing are amazing. You are just pretending to be completely entranced by those blocks, aren’t you? Because we both know what blocks are really for. That’s right, throwing. And the more noise they make, the better. Which is why you like to position yourself in the foyer (wood floor) and throw them against the door (closed) that goes down to the basement (where you have never been and you likely never will until you’re at least twelve, that is, if we’re still incarcerated in this godforsaken stupid state by then, which if your father has anything to do with it we will, just out of sheer poopiness), where they bounce right back to you so you can do it again. And again. And again.

Other times you roam the house looking for things to throw, making periodic sounds that are really cute right now but if you’re still making them in 30 years they will remind people of Billy Bob Thornton in Sling Blade. Not that I’m suggesting that you stop making those sounds or even that you would be likely to do so based on my lame suggestion, after all, who am I? Just the person to whom you go to when you want a pancake, who warms the pancake and presents it lovingly atop a white-and-blue Corelle saucer, one of the least breakable dishes in the house despite the fact that only last week you shattered one by tossing it casually at the marble-like fireplace hearth and we were forever thankful that the plate did not instead hit the glass fireplace enclosure. You regard the pancake with evident loathing, even though seconds before you had cheerfully assured me that this was what you wanted more than anything else in the universe, and you tell me now that instead you’d much rather have applesauce. You glance up at me with a look that is at once sly and endearing, making the sign for “applesauce” against your soft cheek repeatedly and hopefully. Which I am helplessly unable to resist.

Mornings appear to be favorite times for you, unless you are sick, in which case you appear resentful as to the sudden and completely unfair appearance of the sun, and by the way, what’s this in your nose and why do you feel that way? Who invented this “sick” thing, anyway? But most days you awaken with joy and wonder, and I think I could take a lesson from that. One day last week you sang a long long song to the cats, who were still lying abed watching my every move in their empty-bowled hopefulness. I am not sure as to their level of appreciation for your song, which to them likely sounded a lot like “daaaa! daa, daaaaaa! daa, daa. Daaaaaaah!”, but you and I know what music truly is and we have an appreciation for those finer things in life.

Your diapered state typically doesn’t concern you much, unless of course we are in the process of changing your diaper. It’s lots of fun to twist and turn and avoid the procedure as much as possible, the way you do when being dressed or undressed. Frankly, I don’t blame you much, as I would in many cases not want these same procedures performed on me. Thankfully, when there is poop involved you mostly come to me and announce the fact (despite the fact that the announcement is generally preceded by an aura and a general, shall we say, “air” about you), gleefully pointing to your crotchal region while saying “poop”, as if this one, this one, was your masterpiece.

Your vocabulary is increasing dramatically, and I’m only sorry that I still haven’t translated many of your words into English. But you know what you’re saying, and that’s what counts. You had your first “real” phone conversation not long ago with your grandma, very endearing to witness, and you took turns gesticulating and stating things emphatically. Last night you even said “bye” when you were done with your pretend phone call, and you handed the phone back to me. This is quite a change from when you’d gleefully crawl in the opposite direction, clutching the phone and attempting to keep it from me as long as possible.

Of course, now you barely ever crawl at all, preferring instead your still-a-little unsteady gait, teetering a bit on your tiny feet as you pivot successfully around corners and avoid obstacles on the floor. I have to admit I’m still surprised once in awhile at your verticaltudiness, and it has brought you uncomfortably closer to the stove knobs and other exciting and forbidden items, but all in all I would say I am pleased at your amazing progress.

Which pretty much sums up everything I feel about you.

Love,
Mama

[tags]Eric, down syndrome, boys, children[/tags]

I did a Really Bad Thing in the Land of Preschool Mommies today — I dosed my kid with a little cold medicine to dry up his nose this morning, and sent him off to school, knowing that he would at least be able to make the morning and would simply crash when he got home. After all, I had work to do! And, uh, Mommy Stuff! (Okay. I took a nap. So cross off 20 minutes from the bazillion hours of sleep deficit I am running.)

But karma sometimes catches up with you instantly. As soon as I saw Eric’s face on the bus, I knew I was in for an interesting afternoon. Usually ravenous when he gets home from school, or just about any hour of the day really (yes, at bedtime he often helpfully suggests things like pancakes), he turned down all offers of food. Even things he likes. And then I really knew I was in for it when my suggestion of a nap upstairs was met with mute relief.

Even so, the nap was not to be. After all, he had just had one on the bus. Thirty frustrated minutes later, we descended and I made him some lunch, of which he may have eaten three bites. Instead, he lay prostrate on the couch and gave me the look that says: “FIX IT!!”

Later we ran some errands, my brilliant idea being that he might get sleepy in the car. He did. About four minutes from the house. Then the eyes flicked open when the road surface changed, he saw our house, and his nap was over.

When I took his coat off, I noticed how cold his hands were. Icy. And his feet. It’s cold out, sure, in the 20’s, but the car was warm and his coat is warm too. His hands and feet shouldn’t have been that cold.

We got in and I held him, things having devolved to that, and in fact I held him for the next 4.5 hours. I began to think about the hands and the feet. His heart? He is not circulating well, I surmised. He was sleepy, very sleepy, lethargic almost. Something was really wrong. This wasn’t just a cold.

I emailed Michael, who is an RN. He knows about these things. He sent back instant information, about warming Eric’s hands and feet with a towel from the dryer, getting lots of fluids in him to pump up blood volume, etc., and that Eric could just crash quickly and then it would be a trip to the ER.

I did all those things, plus changed Eric’s pants to something softer, got him a blanket he likes (he really objected to The Cat Blanket for some reason), and he went right into a weird sleep. With me holding him. (How wonderful it is to have someone hold you like that.)

He awoke a couple of times and drank more, and went right to sleep upstairs when it was time for bed. He’s there now.

He’ll be okay. I told him he needs to stay here, that this isn’t the time. He’ll stay. He really likes it here, I can tell. Anyone can tell this about Eric. But I know his body isn’t as strong as his heart is, not his physical heart but his inside heart. The one we carry forever, the one that sometimes gets broken. One day his body will fail him, one day when he’s really ready. But not now. Not today.

[tags] preschool, down syndrome, illness, sick, cold hands and feet [/tags]

He can hide it no longer…..

Yep! No hands!

[tags]walking, down syndrome, developmental delays, triumph, love[/tags]

Eric has been walking.

Oh, he’s sneaky about it, all right. He must think we don’t notice, but all of a sudden he’s been intentionally standing up a foot or two from things and then walking to them. With no suggestion or insistence from anyone.

How can this be? How can this child, who so many would regard as deficient in some way (after all, here he is two months past his third birthday and we’re talking about him walking?), have the drive and determination to get up repeatedly and practice something completely on his own, like anyone else?

How can he, indeed.

Given pause for thought by a discussion on Pinwheels, I have been thinking back to my expectations of Eric when he was an infant. Frankly, I had no idea what a diagnosis of Down syndrome meant. Eric’s father chose to more or less go into a denial mode and refused to allow me even to discuss it with anyone until I finally got tired of the elephant in the room when Eric was almost a year old. When I finally could bring myself to do so, I could read all day things on the internet that stated “people with Down syndrome can live independently and have a full life,” but I had no idea what that really meant.

Does it mean, for instance, that he’ll have romantic relationships? Will he be a grocery bagger, or something else? Frankly, I had difficulty imagining this tiny jaundiced failing-to-thrive boy would even walk, let alone grow up and do anything.

So here we are at perhaps one of the most visible milestones in a parent’s life, when their child crosses the bridge from baby to child on his own two feet, when the parent can finally see more of the child’s road ahead. It’s funny how it’s the child’s change in perspective from floor-level on four crawling legs to countertop-level on two upright feet that allows the parent’s change in perspective as well.

I still don’t know where Eric’s road will lead him. But I do know that he truly does possess the skills that will enable him to get there.

Way to go, Eric. Mama is so very proud of you.

[tags]down syndrome, eric, walking, children[/tags]