Chewymom

This whole saga with our cat has been eye-opening to me, in more ways than one. And I apologize for beating a dead horse, but whose blog is this? Oh yeah, mine. So I’m beating.

The thing that upsets me more than anything about Serafina is that we are getting a raw deal. We paid full price for a fancy cat, and we got one with a defect. The breeder is not willing to work with us. And that’s not fair. Not only that, but the breeder has threatened to sue me if I blog about my experience, which means he can screw his buyers and face no recourse. Doubly unfair. I am offended, angry, righteously indignant, and just generally put out at the whole thing. And it’s not that we don’t love Serafina–we do! She’s a great kitty, in terms of personality!

And that’s the thing that makes this so…weird. And it got me thinking about having a child with Down syndrome. What do so many new parents face? Feelings that this is not fair. This is not what they “bought.” They got a raw deal. They are hurt, angry, and offended.

With Serafina, her owner either was truly ignorant of her defects, or he deliberately sold her as she was, knowing there was no real recourse. I have chosen to believe the former, although the way things have turned ugly has made me question whether he just needed the money from selling her so badly that he chose to be less than honest. But in terms of having a child with Down syndrome–in terms of my child with Down syndrome–the original owner is not like that. DS16’s breeder–God–was never ignorant of his “defects.” In fact, He lovingly pieced him together with his extra genetic material. He did not make a mistake in giving him to me. Nor did he trick me into taking DS16, knowing I would have no real recourse. He gave DS16 to me and said, “This is not the gift you were expecting. I know it may hurt to let go of the expectation you had. This gift comes in really similar packaging, but there are differences. Some will challenge you to the extreme, and others will make you grow. You will meet new people because of this gift. You will learn things about life and about yourself that you otherwise could not have known. You will see things through a slower, simpler lens. You will learn about real value instead of the way things appear on the outside.”

What started out with the appearance of an unfair turn of events, a mean trick, a mistake, is in fact a gift. It looked different than I expected it to, and it isn’t always the easiest gift to manage. But in the long run, it is just that. Not an unfair transaction or an act of trickery, but something given to me by a Creator who loves my son and who loves me and who knew, even when I did not, that it was the best thing for me and for my family.

A friend on a Down syndrome board posted the following that she overheard from her daughter, E, who also has T-21. She gave me permission to post it here, as part of the “Get it Down” campaign. See, I told you I’d run out of stuff on my own!

This morning, my sweet little angel (hahah) has a stuffy nose. She doesn’t want to go to school because she thinks she is too ’sick’. I tell her she has to go, she isn’t running any fever, so I give her a decongestant and send her packing.

As we are walking down to the stop (my new attempt at exercise, we usually drive LOL) I hear her saying something as she walks in front of me. So I hurry up to hear what she is saying and it went like this…

“Please God, LISTEN TO ME!!!”
“I need a feber (fever)”
“I want to stay home and I can’t without feber”

She walks a few more feet and then dramatically feels her forehead, by this time, C and I are about to die stifling our laughs.

Then she says in this really exasperated tone,

“Heeellllloooooooo Gooooohhhhhhhdddddddd, do you HEAR ME????”

She feels her forehead one more time and says, like she is REALLY ticked off,

“Oh good grief, I’ll just talk to the school nurse!”

And here is a picture of Miss E and her brother!

Was I really an English major? I am a “give-it-to-me-straight” kind of person. I hate symbolism. Maybe that explains my almost straight-Cs in my major. If you have something to say, just say it. Don’t hint, don’t allude, don’t use one thing to mean another.

So after DS16 was born–in October, which is Down syndrome awareness month, ironically–lots of people sent me something they had seen in Dear Abby. It was written by Emily Kingsley, who has a son with Down syndrome. It was nice and all, but it didn’t really click with me. It was all symbolic.

Part of the problem I had was my “just the facts, ma’am” tendencies. Part was that I had not experienced enough of having a child with Down syndrome to really make sense of it all.

Here I am, almost seventeen years into this journey, and this piece resonates more and more with me all the time. Maybe it just takes seventeen years and a zillion readings of something for me to understand symbolism! My English professors should have been more patient. Yes, having DS16 is much like having a trip get switched all around, ending up somewhere you didn’t intend, and realizing that you’ve still managed to have an amazing time. And to meet amazing people–goodness, the people I’ve met because of something so tiny as an extra chromosome!!

So here is Emily’s analogy–a story that has touched heart after heart of those who “get” symbolism, and that has grown on those of us who are symbol-impaired.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Well, it’s day two of Get it Down, and I can’t think of anything to say about Down syndrome. I spent half of my day feeling silly about this. Actually, I take that back. I spent half of my day learning about microbiology. And when the professor got off on a tangent, I daydreamed about the blog I would write. Or not. I couldn’t think of a thing.

And you know, that’s kind of the point for me. Down syndrome for me is normal. My first child has Down syndrome, meaning that everything I first learned about parenting was learned through the lens of Down syndrome. With five kids, I just don’t have a ton of time to dwell on what makes my firstborn different than his brothers. Other than the fact that the boy will NOT get out of bed in the morning, but that has very little to do with his extra chromosome. DS16 is for the most part, just a member of our family. He brings his own quirks and idiosyncrasies to the table, just as do the rest of us. Besides me, of course.

Do I have days where I am more aware that Down syndrome has entered my life? Sure, I do. When I’m gearing up for an IEP. When I go to a pep rally and notice that the kids with special needs have not been made aware of the super-hero shirt day. When I fight to have DS16 included on a sports team. When I stress out and have to call a meeting to prepare for DS16 to attend a youth retreat. At those times, Down syndrome enters my life in an unpleasant way. A way that brings out the mama-bear in me and causes me to come home at the end of the day wanting an extra glass of Chardonnay and two Advils, please. But in the day-to-day that is my life, DS16 is just another welcome member of my family who contributes many positive things as well as a few challenges, just like the rest of us.

Wish me luck coming up with 29 more blogs about this thing that is part of my life because it is part of my son’s genetic material, and yet about which I can’t even seem to come up with two things to say!

October is Down syndrome awareness month! The goal of “Get it Down” is to blog about Down syndrome for 31 days. I’m not sure I can do that, frankly, since as my son says, I’m dangerously close to getting a lame blogger award. Microbiology is sucking the life out of me taking up lots of time, so blogging is on the back burner. But I’ll see what I can do! And in the unlikely pretty much assured event that I miss a day or twenty, if you click that little button above, you’ll be taken to the blog of the gal who started this, and you’ll see all kinds of T-21 bloggers in the comments where you can get your fill of extra-chromosome-goodness!

Let’s see…how many pets do we have now? That’s right, six. I know, I know, sometimes my life seems a little insane. Okay, all of you IRL friends and family–I see you smacking your hand to your head saying, “You ARE insane!”

So here’s the deal. Each of my sons has his own pet, plus we have a “family cat.” DD5 has been begging for a pet of her own. And she gets whatever she wants, end of story. No, that’s not the end. We didn’t really want to get DD5 a pet of her own, but come on. This desire wasn’t going to go away any time soon–I mean she was well aware that everyone else in the family under the age of 100 had a pet. Sure we could put her off a while longer, but why prolong the agony of having to listen to the incessant whining and begging when we were just planning to give in eventually anyway. And what were we waiting for? Kids to leave home? That wouldn’t really help. I mean, sure my food budget might go down into the less-than-a-zillion-dollars-a-month range, but I’d also lose pet feeders, poop scoopers, etc. So we added another pet.

Serafina (that would be the cat picture in that post, not the ink) is a perfect kitty. She is actually a breed (who knew cats come in breeds, too??). She is a Ragamuffin, which is a breed known for being…well…dogs. She comes when we call, she purrs constantly, she begs us to scratch her tummy, and she licks my nose with her sandpaper tongue when I’m trying to sleep. Most of her habits are quite endearing. Including her habit of wagging her head at me from the top of the stairs as I walk up. And her habit of making a flying leap onto the bed and…missing.

And it turns out that those latter two habits are indicative of a problem. Serafina, it turns out, has a congenital eye problem. I know this because I spent my morning driving the cat to another town to see an ophthalmologist. Another thing I learned–there are animal eye doctors. And no, they don’t have cats read eye charts or say, “Is it better one? Or two? Three? Or four?” But they do dilate cat eyes and take a peek around. And discover holes where the optic nerve comes in, for example.

So although I have learned things like that there is actually a breed of cat that behaves like a dog, and that there are ophthalmologists for cats, and that sometimes you even drive pets out of town to see a doctor because you just really love them, that isn’t the main lesson. Here’s the thing. Serafina, being a fru-fru cat, came with a health guarantee. Meaning we have the option to send her back for a new kitty if she isn’t healthy. I have a son with a genetic condition–Down syndrome. I had no option to send him back, although had I known prior to his birth I would have had the option to “get rid” of him. And I could not and would not have chosen that option.

My family loves Serafina, even though we have only known her for less than four weeks. If I sent her back, what message would that send to my children? If something isn’t perfect, we don’t keep it–we trade it in for something better. And DS16, with his own “imperfections” would no doubt get the message. As would my other kids who are less than perfect in their own quirky ways. Not that there’s anything imperfect about sucking your thumb and picking your belly button after you turn five, or with kicking holes in walls when you’re mad, or with cussing when things don’t go your way. Nosireebob. Hmmph.

We are talking to Serafina’s breeders to hopefully reach a solution, but that solution will not include sending her back. Because when all is said and done, she is who she is partly because of her imperfections. Cookie cutter cats, like cookie cutter people, are boring. Diversity is what makes us appreciate beauty. Kind of like evil makes us appreciate good, but that’s a theological issue I’m just not tackling. Serafina, with her quirky genetic material that causes her to not see clearly, to have smaller-than-normal, different-sized eyes, to “clothesline” herself when she runs and jumps on our bed, and to bob her head around from side to side in order to see, is a welcome member of our family that is replete with quirky genetic material. All from DH of course. I’m just sayin.’

This little angel’s mom is a part of my T-21 (Down syndrome) community. Chelsea has just been diagnosed with leukemia and is beginning her fight. Join me in praying for sweet Chelsea!

I am on vacation right now, and I really have no idea how to do things on my blog without the help of my techno-geek, DH, so I can’t post this on my sidebar or anything. But I wanted my blogging friends to know about this little guy, Parker. I have known his mom for a while now on my T-21 (Down syndrome) support board. Parker has serious medical issues and terrible insurance. It has been a nightmare for his family to try to receive the best care possible for him, because they simply cannot pay for everything out of pocket.

Over at Slurping Life, there’s a raffle of sorts going on. If you make a donation to the Love for Parker fund, you will be entered in a drawing to win some fabulous prizes! So please click over there and check out the prizes and make a donation, even if it is just a small one, for Parker. And above all, keep sweet Parker in your prayers as even now he is struggling.

Many many months ago, an opportunity was presented for my two high-school boys (DS16 and DS15) to attend a youth conference for our denomination called RYM. We were excited to be able to send them with lots of other kids from our church, but we were also faced with a dilemma. How could we accomplish both the goal of sending DS16 and of allowing DS15 to have a fun week with his friends?

We decided that the best way to accomplish both was to ask the various boys in the youth group to each take a half-day and be DS16’s helper. The boys all agreed, and I made a schedule and a list of ways to help DS16. Make sure he gets to meetings. Make sure he doesn’t wander out of meetings. Help him cross the highway (!) to get to the beach. Make sure he doesn’t drift along in the surf and lose sight of the group! That’s a lot for a high school boy to keep up with–it’s like having a kid brother along on a high school trip. I knew I was asking a lot, and frankly, it made me nervous. We do have adults down there with our kids, but they cannot devote all of their time and attention to my son alone.

Two days before the boys left on their trip, I learned that my niece would also be attending with her church group. Awesome! Another set of eyes on DS16. A set of eyes that love him as much as DS15, that would feel a responsibility to be sure he is safe. I breathed a sigh of relief and thanked God for providing yet another person to help DS16 enjoy this retreat. But it gets better.

This morning, just after dropping the boys off at the church, I called my sis-in-law–the one whose daughter was also attending the retreat. She said, “You won’t believe this, but my DH is going on the trip!” Folks, this is one of my DH’s identical triplet brothers (also known as the non-blogging FatTriplet3). How cool is this?? Now DS16 has arranged helpers from his youth group, his brother, his cousin, and his uncle all watching out for him. I know his Uncle FT3 will have an eye on DS16 and will love and watch over him just like his own Daddy would. Not to mention that our youth group will get a kick out of meeting DH’s identical triplet uncle!

Not only does our Heavenly Father have his omniscient eye of love on my guys, but He has provided many earthly eyes as well. As a result, I am relaxing this evening (with a glass of wine, even), confident that my older two boys are safe and happy down at the beach.

My oldest son, DS16, spends half of his school day in the regular high school and half of it in a section called the Developmental Program. The DP is for people with developmental delays. They receive more individualized instruction, tailored to their own level of learning. The teachers who work in the DP are just wonderful! They are all the kind of people that you just want to be friends with in “real life” because they are so nice. There are also a lot of volunteers from within the high school who spend one period per day in the Developmental Program helping in various classrooms.

Every year in April the Developmental Program has its own prom. At first I’ll admit this kinda bugged me. I mean, seems to me the ideal is for these kids to go to the regular prom. And, by the way, that is exactly what DS16 will be doing next year when he is a junior. But things are funny in this town, and most people in the Developmental Program see no need to involved themselves in the “regular” high school. Or at least their parents don’t see the need. We’re pretty much odd balls. In more ways than one, I might add. That seems to be my lot in life–being an oddball. But I digress. In this area–of inclusion and such–I find myself in the typical, for me, roll of oddball. Because I want DS16 to enjoy normal high-school functions.

Still, the Developmental prom is a really great experience. This is DS16’s second year attending. There is a really awesome band that plays for two hours straight–they volunteer to do this. Other volunteer groups provide delicious food for the event. The students come, decked out in their finest prom dresses and suits. Many have dates for the night and have purchased corsages and boutonnières.

This year, DS16 decided to go “stag” to the dance. Well, almost. See, DD4 overheard us talking about this dance. Dance??? She bounded upstairs to find the finest party dress in her closet. She was determined to attend. So we took her along, and DH, me, and DD4 hung out with DS16 for a bit during the picture taking. Then the three of us, minus DS16 went out for dinner. (It was DD4’s first experience at a hibachi-style Japanese steak house–she was quite impressed!) After we ate, we went back for the last half-hour of the dance.

You would have thought DD4 was on a stage. She forced encouraged DS16 to twirl and spin her, always keeping her face toward the adoring audience seated on the bleachers around the edge. She dipped and flailed her arms about like a true princess. Or at least how she imagined a four-year-old princess would dance. Concerned, I asked DS16 if she was bothering him. No, he was enjoying her as a dance partner. And so my two bookends danced the night away, twirling and dipping to the tunes. Here are a few pictures of the evening.