Wednesday, July 28, 2010

60. Upon Further Review, My Last Post Was Boring

It was really boring. I didn't start writing this blog so I could post emotionless updates on my state of mind. So let's spill some blood, shall we?

I'm two years into this journey.

The far shore - the one I left behind on the day Ozzie was born - is a distant memory. It's a place I can never return. I'm not sure I would even be interested in returning if given the opportunity. I have stopped looking back to the past, much like I have stopped looking forward to the future. I have this oddly myopic view of time these days, a visual impairment that resulted from staring too long into the void. It's a staring contest that I won, I guess, but it's one that changed me forever. Since then, I sort of take days as they come.

I'm two years into this journey, and I am not the man I used to be.

Truth be told, I'm not even sure I was a man before. I'm quite sure that I am one now. I have a completely different perspective on life. I have a healthy appreciation for the things that matter most. I have quiet disdain for the superficial problems that others seem to obsess about.

I read an article in the newspaper a few weeks ago about a mother whose young child had an eating disorder - a gluten allergy or something. Something serious, something hard to identify. But the doctors finally figured it out, and he is now on a restricted diet. And the mother's lament went something like this:

"The heartbreak - you have no idea. I mean, I wonder, when he grows up, will he ever even be able to take a date to a restaurant?"

Yes, sounds like a real nightmare. Sounds like the sort of thing I would have worried about, too, before I had to worry about whether my child would ever be able to go out on a date at all. Then again, my observation must sound ridiculous to a parent whose child is deceased.

I'm two years into this journey, and I do not have all the answers.

I can look at Ozzie and experience emotions that swing wildly from joy to terror in the span of a few moments. He makes me happier than I deserve to be. But the sadness stalks me, too, waiting for its chance to pounce.

We are members of a local science museum. We visit frequently, and whenever I go, the sadness waits for me in the gift shop. You see, the gift shop sells little astronaut costumes for children. Parents buy those costumes for their kids with nary a thought. Mommy zips up that suit and tells little Johnny that, one day, if he studies really hard, he can be an astronaut. He can be anything he wants to be.

I have not bought that suit for Ozzie. It just seems cruel.

Yes, it can be tough to fend off the sadness in the gift shop.

I'm two years into this journey, and I have lived to tell the tale.

Recently, another father - a man I had just met - pulled me aside at a local Ds function after I had introduced myself. His own journey started well after mine, and he told me how much this blog meant to he and his wife. He thanked me for the things I have written. He thanked me for my honesty. That brief moment meant more to me than he probably knows. And it raises an important point - honesty. If you are going to blog about something as important as Down syndrome, please do it honestly.

A certain very high-profile Ds blogger did a great job of turning me off quickly because her posts simply did not ring true. I know too many people who have gone through this process. I have read their most intimate thoughts. None of them experienced the instant Nirvana that is, apparently, her new life. Truth be told, it's hard as hell to work through that first year. Anyone who tells you differently - anyone who makes you feel guilty for not being blissfully happy in the months after the birth of your baby - is a liar. I think people get swept up in blogging, sometimes, and they feel that they have a responsibility to the Ds community to paint everything with beautiful colors. But sometimes the morning sky is blood red, and should be painted with a stiff, blood-soaked brush. I value honesty in a blog, above all else. At the very least, don't be dishonest. If you want me to read it, anyway.

I'm two years into this journey, and I think the roughest seas are behind me.

I still can't be sure of that, but I certainly hope so.

31 comments:

Beverly said...

wonderful post.

Lisa said...

There's the Dan I know and love... honest and true to the core.

The Sanchez Family said...

I love your writing. Seriously. It's so refreshing. I read the high profile blogger that I "think" you speak of but I continue to go back. I too wonder if she is "for real" at times but a lot of what she writes does ring true for me and I actually think she will "go" to that dark place however long or brief as her baby gets older...

Cole said...

Hijacking your comments for a minute in response to your post- sorry!
I chuckled at the high-profile blogger woman comment as well. I have pretty mixed feelings on her approach (if we are talking about the same woman). After reading her page on special needs- I can appreciate her using her blog as her therapy and how she works through things. I do a much less high profile version of my own. For me I need to appreciate the little things in my life like scrambled eggs with fresh basil I grew. Like her that's been a habit of mine long before I had a kid. For me it's what gives me perspective and helps me stay mentally balanced. Ruminating on what scares me in life does nothing but create middle of the night insomnia for me- and that drives me to the pharmacy for pills crazy. I find it so unproductive and get energy sucking. But long before the kids I was trained in my social work training and practice to look at what a person's goals were regardless of their ability and to try to be creative in figuring out how we can get that for the person- I worked with people with severe to profound intellectual abilities. I've worked with groups that take children who are blind sailing and on 100 mile bike ride.Kids that years ago- would have been left in institutions in our own country. So when I hear your sadness about the gift shop and your perspective about it being cruel to buy the suit for Ozzie- well it breaks my heart for you. As your social worker it would make me want to see what Ozzie wants and what is a creative way to get there or meet whatever the needs are. He can and will do whatever HE wants. It may not look like your dreams for him- but it can look like his dreams for himself. Lots of kids want to pretend to be something that they may never be. Go to a 3 year old dance recital and you will see two things- a group of 3 year olds with no natural aptitude for dance, no grace, the wrong body shape that will not change no matter their discipline in diet and practice- a group of 3 year olds that most likely in time may produce 1 small stage ballerina at best. The other thing you will see- a group of 3 year olds dancing their hearts out and having so much fun you can't help but smile back at them. It's the same group- what you see is how you try to see it. I admit- you have to want to see it though.

Cole said...

So I appreciate her effort- but my disappointment in the scene- is what I see as her non-acceptance of the Ds itself- the fact that when she does share her negative feelings it has to do with the Ds. Much like Ms. Palin- she has the world in her palm right now and could be such a wonderful ambassador for Ds itself and she doesn't see it or want to talk about it. She could accept the people who want to be a part of her life b/c of the Ds, she could write about the therapy and the daily part it plays in her life with such grace and beauty if she wanted to. I wish she did- it would go along way towards the cause in my opinion. I personally hate that in such a "happy and accepting" person- the Ds is seen as something bad. That she doesn't see it is seen as her acceptance of it. When I read her- what I see is that yes, she accepts Nella. No- she doesn't accept the Down syndrome yet. If she has no experience with disability outside of her daughter- then I get how there is probably no way she can come to an acceptance place of the place disability will have in their lives without feeling twinges of sadness. When she dissed Welcome to Holland it pissed me off.

But the main thing that bugs me- is that she gets this high profile attention and the national media award from the NDSC with her lack of acceptance of Ds. B/c that's what it feels like to me- yes, she accept Nella as she accepts Lainey- excellent first step- now she needs to work on accepting the Ds and the community that comes with it without it being the dark spot on her radar that is typically sunny and manic.

Cole said...

I feel where you are coming from Dan. I really do. I have my impatience, anger and fear with the world's acceptance of Abby and I have impatience with Abby. For me disability has been a part of my world though long before I had a daughter with Ds. It's in that vein that I appreciate people like Dave Hingsberger. I first heard him speak in the early 1990's at a conference on Sexuality and people with Developmental Disabilities. His perspective and his acceptance of disability and the way he speaks about it moves me- it's the me I want to be and I work towards- long before Abby existed and hopefully for the rest of my life. Although I admit- applying the acceptance and what part the focus of her disability plays in our lives- well it's a continual work in progress. But that's a good thing I think. Sorry to hog so much space.

DownTownDan said...

Cole - I'm quite happy for you to hog my comments, because you have wonderful and insightful things to share.

You made me feel a little guilty about the space suit in the gift shop. I know it's just a child's toy, and of course I will devote my life making sure that Ozzie can do whatever he wants to do. Hopefully he will do something artistic, like his dad. Nothing would make me prouder. I know that my feelings about that space suit are not really rational, but I can't help it - what that suit represents, in the larger sense, just tears at my soul. I'm sure every parent has some tiny little thing that just stabs at them. For some reason, that suit does it to me.

But shit, I never became an astronaut, either. And come to think of it, manned space flight is going straight into the crapper. Pretty soon, that costume will be as quaint and abstract as a kid's cowboy hat and toy pistol.

If Ozzie ever asks for that costume, I will buy it for him without hesitation. And I'll post pictures of him wearing it on this blog. I'm sure he will be adorable in it. :)

Cole said...

TOTALLY didn't mean to make you feel guilty- not the intention- just wanted you to be able to see it differently- for your own sense of peace. I know from what I know of you that you will encourage Ozzie to be all he will be. And frankly- I hope you do buy him the spacesuit- maybe you can take back your fear a bit in doing that and let it symbolize your belief in him instead of other's believe in their stereotype of him. It's your right.
And if he needs a date- I offer up the Quail- Ill start priming her now in her love of him. He's too cute to pass up.

PS- ironically my biggest fear is that my kids will leave the planet- they've been told that they are welcome to go anywhere on the planet- so long as they don't leave the atmosphere. When I was pg with Maddie I heard a story about a young female astronaut on NPR and it gave me a panic attack.

TUC said...

Well you sure did make up for #59. I should go run and get a coffee and reread this one.

Um, Cole, you can come hijack my whole blog with that comment. You put into words what I have been feeling about that blogger for a while now. You said it so clearly... ha, when I wrote about it (earlier this month), I don't think ANYONE got what I was saying, lol.

Yo Mamma Mamma! said...

I was just posting a list of my favorite blogs over on the Baby Center Board, and I didn't include you since your blog hasn't had much action lately, lol. Going back to put you on the list (better promise you are going to post more frequently.)

DownTownDan said...

Yo Mamma Mamma:
I promise.

Cole said...

TUC- were you talking about your acceptance or your honesty post?

Mel said...

I know the blogger you mean- don't read her very often. Makes the rest of us look not so perfect. Who can really make cupcakes look like that???? Lol.

As for the astronaut costume, go buy it. My kids are currently wearing knight gear, and I'm pretty sure they're not going to find employment in that area! I try not to look too far into the future for Luke- too scary, and I don't do it for the others, so why should I do it for him. Hard though. Especially when some old git felt the need to point out that "It's a mongol" at the pet shop the other day.
I'll let Luke decide his limitations and try not to let other idiots influence him.

DownTownDan said...

Mel, I'm laughing. Not at the mongol comment, though. Thankfully I have never had anything like that happen to me. Not yet, hopefully not ever.

Hey, I guess people do still read my blog. I missed you guys.

Tara said...

I forgot how much I missed this! The honesty and the dialogue are refreshing and I feel like I've come home. I admit to being in the dark about the blogger you were referring to for awhile there, mostly because, like you, I read a few posts, gagged, and never returned. :)

I find myself trying to stay very much in the present because the future is just so unknown. It could be quite terrible, but I think it will be good. I thought that about the whole ride before I was actually on it and this leg of it has been better than expected. So far, the known is good. I find I want to stay here.

DownTownDan said...

Hey Tara - haven't bumped into you for awhile. Welcome back. Sorry I vanished. Thanks everyone for leaving such meaningful comments.

TUC said...

Cole,

The Honesty post, but the Acceptance post was sprung from thinking about her insistence that she completely accepted Ds overnight...

There was a post over there that I thought dissed other bloggers who blog about their family life with a kid with Ds... and that was it for me. I love this community and I value that we all have different approaches and styles... so anyway I finally said something in a comment and I got a bunch of Anons coming after me as if I'd slapped their goddess or something... At that point I thought it better to just think out loud on my own blog,(or Dan's, lol).

Monica said...

I've not been diligent in reading blogs lately. I guess having an 8 week old infant gives me a good excuse. But I have to say, I've missed reading your posts and going on "missions." I can only guess at which high profile blogger you're thinking of. I'll admit, I have mostly "up" days, but occasionally I get hit in the head with Down syndrome when I see a certain "look" from someone. I certainly didn't accept the diagnosis gracefully and God knows how I felt about it. But today, 2 1/2 yrs later, I, too, can say I'm not the same I was back then and I like who I am as a person and as a mother, much better. My little guy certainly has changed our family for the better. Anyway, keep on keepin' on. Love your honesty. It often rings true for me, too, and allows me to think deeper.

Michelle said...

Buy him the astronaut costume. Nothing wrong with playing dress up and pretending and having fun 'being' an astronaut. Kayla dresses up as a ballerina, princess, ladybug, king, fireman, and doctor. She 'doctors' her dolls and stuffed animals and us. There might be a small twinge of that sadness, of knowing that she won't actually 'be' a doctor, but I never achieved that profession. And nothing says my typical developing son, Lucas, will be a doctor either. And so what? Its ok to have the costume and pretend to be whatever they want to be. Don't let that stop you from getting him the costume.

Crittle said...

*waving* I'm here too...and thank you.

Anonymous said...

Daniel,
You never liked space travel anyway! Your posts are always beautiful to me. I too, have a few little twings from time to time, things that hurt me for Ozzie. But really, your sister, Mandy, continually told me that the DS would be no big deal, that I would see a happy child who did whatever he wanted. Mandy kept reassuring me that whole first year of his life, anytime I felt sad, she never let me hold onto those feelings because she knew I would see that she was right and she surely was. DS has become no big deal. Ozzie is just, well, Ozzie. He is adorable and funny, and fun to be with and his family loves him and always will. Whatever he does will be celebrated just like Layla and the other cousins. All is well in our little world and I thank God for Ozzie-whatever would our lives be without him?

Mom

Looking Up said...

Thanks so much for sharing this post. I'm 20 months into my journey, & for me, your sentiments really ring true. Not gonna lie. My son's first year was bittersweet for me. Being a first time mom is an adjustment for anyone, but toss in the fact that your child has been diagnosed with DS & a serious heart defect requiring him to have open heart surgery at 3 months old, & life can get pretty overwhelming very quickly. Last year I was riding an emotional roller coaster....At times I would absolutely revel in the joy of being a new mom, but there were also the times when I would go to a very dark place. I was secretly angry at everyone else on the planet who had perfectly healthy babies. There were many nights when I would lie awake crying, absolutely terrified of what the future might hold. DS & the possible troubles that the diagnosis might bring, were never far from mind. Thankfully, my life is much different now. My son is an adorable, happy, active little boy who makes me smile every single day. This summer has been less about tears & worry & more about trips to the park, swims in the baby pool, & watching my son devour the occasional ice cream cone ( his fav treat :). Don't get me wrong, I still have those sad moments....they are just fewer & farther between. Like you, I believe that the worst is behind us & I thank God for that. As for your comments about the "high profile" fellow blogger, I read her blog (assuming we're talking about the same person) & have often wondered if she is in denial about her situation, or if she is just someone who wants to keep things positive. I tihnk what bothers me more than anything is the fact that she has such a flat stomach after having two kids....LOL! :) Thanks for always keeping it real! :)

Looking Up said...
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Looking Up said...
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Kelly said...

Thanks for ALWAYS keeping it real, Dan!! This post was very refreshing and relatable. I too believe, that if you are going to blog, it should be HONEST!! I am now 18 months into my journey and as accepting as I am of Landon's diagnosis and as happy as we are today, my heart still feels heavy at times.

I understand EXACTLY how you felt about the astronaut costume. I would have felt a sadness too, but then I probably would have bought the costume, lol! (the point being, YES, I would have felt a BIT of sadness at that very moment, too).

And because I am an HONEST blogger too, I CONFESS, that I hopped on the bandwagon of that high-profile blogger......I WAS a follower, but the more I read it, it started to feel fake and UN-RELATABLE. And so I STOPPED following!!

Thanks for keeping it REAL, Dan!

Emily said...

Hi, Dan...

Nice to hear from you again! Good stuff, but I have to say, for what it's worth, that when I blog about how grateful, and awe-filled, and blessed and HAPPY I feel to have 6-month-old Mirabel in my life, I absolutely mean it. Maybe some shock waves will come later, maybe fears and frustrations will settle in. But for now? Now? Man, I honestly feel like the Universe smiled on our family when Mirabel chose us. And that's our focus.

I agree that the high-profile blog is smarmy and mooshy and too cutesy-perfect-sugary. But I do love her pictures, and I do love her general positivity. I think it is possible to be hopeful and positive... honestly.

xo
Emily

Beth said...

For me, yes, I was through the roughest seas after our daughter had her heart surgery at age 2.5. Once I believed that she was going to live, we got started on living our regular lives.

Your metamorphosis will continue, but the kick-to-the-stomach-can't-catch-your-breath feelings are much less frequent. My daughter is 12 and at this point I hardly pay any attention to the "diagnosis". The extra chromosome seems to carry less weight the longer you live with it.

Definitely buy that space suit--but wait until Ozzie wants it. Hannah had a really cool space suit when she went through the astronaut phase. Now she wants to be a veterinarian. Fine with me. I don't tell her she can't, and I don't lie to her either.

BTW, she has been asked to go out on a date. But we aren't letting her until she's 16, same as her older sister.

Lisa said...

Great, wonderful, fantastic, moving post, Dan. I've missed this! And so much of what you wrote here resonates with me - no surprise there, I guess.

Lisa said...

**waving** I'm here, too...a little late to the party, but here nonetheless ;).

You are reflective and raw. I love that about this post and about your blog in general.

I also love the diversity in Ds bloggers/blogs...there are so many choices of styles and content...something for everyone.

(Dan, I think you may just not have enough experience with manicures and cupcakes and hot/retro bathing suits to enjoy the high-profile blog ;). Or--more likely--maybe you just know too much about the (Ds) journey to buy the blog and the glossy images (photos and words).

Gloss and glitter isn't for everyone.

I've taken some crap, too, recently for my "positive and hopeful" blogging style, which I find pretty interesting. Especially because I am not even blogging right now ;).

"Keeping it Real" is a phrase I have seen used dozens of times this summer in various comments and posts.

And I am left wondering exactly what that really means, because I think it means different things for different people.

I hope that what people are looking for is depth and truth within reality, whether that is sunny or rocky. We all have a bunch of both of those things--the blissful moments and the ones that just plain bite.

Oh no, I feel a post coming on. You may have just brought me out of my hiatus...

DownTownDan said...

It's the third Lisa!!!!

Hi Lisa - welcome back. I missed you too!

:)

Jen said...

all I have to say is:

YES.

Thanks.

Jen