As you know from the photo extravaganza I've subjected you to this week, we had a spectacular time on the cruise. Going on vacation with the kids is generally amazing. When you're a working mom, as I am, you experience the pleasures of being a full-time mom (with the perks of prepared meals and maid service). Being in a new setting, though, also means I get lots of little reality checks about having a kid with disabilities.
When we're at home, I rarely sit around thinking about Max's challenges. If you'd told me I'd ever reach this place years ago, I never would have believed it; when Max was very young, I so feared for his future that all I could see were the things he had trouble doing. Now, when I hear him trying his best to say words, I hear communicating. When I hold his hand, I feel the warmth and pleasure of his touch, not muscle tightness. When I look at him, I see a beautiful little boy with floppy hair and a smile that's like sunshine.
But when we leave our routines and comfort zones and the cocoon of our home, neighborhood and places we know, suddenly I have all these "Oh, I have a kid with handicaps" moments.
On the Disney cruise, the kids' club was willing to accommodate him, even though he wasn't potty trained like the other kids, but we had to be on call to come and change his diaper.
Oh.
We couldn't go for family dinners at the restaurants or go to shows as a foursome, because the noise made Max wig out.
Oh.
I'd notice people staring at him, oftentimes with a sympathetic look on their faces.
Oh.
Once, a mother asked about Max's condition, and when I said he had cerebral palsy she asked, "When is he going to get braces?", clearly not realizing that he walks pretty damn well and that cerebral palsy comes in many different forms.
Oh.
There were all sorts of little "Oh" moments like these. They didn't bum me out. Well, OK, maybe a little, but it's impossible to stay bummed in the bubble you exist in on a Disney cruise. Besides, I knew there's much to celebrate and be grateful for. Because this is a child who amazes me, impresses me and melts my heart every, single day.
Those reality checks are what makes me dread going on vacation just a tiny bit, because as I discovered last year...even morons go on vacation. The stares. The questions. The woman chasing me down the street to yell at me about no sunscreen because her feet were bright pink, which for her is a good thing because they're usually a deep purple. Aahhh. I guess I get them everywhere, but it's easier to write them off when it's not days and days in a row of that crap. I'd like to be invisible for vacation, please.
ReplyDeleteVery well said, Ellen! I have been there when it comes to the reality checks. One of mine was when Daniel was a baby, not long after he was diagnosed. We were playing a big baseball game with the whole extended family/friends, and I watched Daniel's slightly older cousins and our friends' kids toddling around off to the side while chasing plastic baseballs. The thought that Daniel might never be able to so much as pick up a plastic baseball or run around with his friends came crashing down on me, and I excused myself so that I could spend the next hour sobbing in my car.
ReplyDeleteFinding Normal's line, "even morons go on vacation," is priceless! We've had similar experiences while on vacation. Yes, it would have been great to be able to take a vacation from the stares!
Beautiful Ellen.
ReplyDeleteWell said!
ReplyDeleteI think that the other people is probably the hardest part. Why do people feel the need to talk to others about their children? What's up with that? For us, people always, always, always say that Charlie is sleepy. I just agree with them--it's easier than explaining that he has "low tone."
ReplyDeleteWhat an amazing post.
ReplyDeleteCindi
I always like to believe it gets easier the longer you've been at it. However, I will admit lately its hit me seeing most of the group of kids my sons have grown up with are now driving, graduating and picking colleges. Oh and winning many academic and sports awards, so I'm told (over and over)! I've felt down a bit. I drive my sons to school, today one comes out with his electric razor and proceeds to shave on the short trip to school. I am thinking its hard to believe thats my preemie. Then I hear him say "wow, this can become my routine, SWEET" and I was feeling bad he isn't driving?
ReplyDeleteMmmm, I understand. Mike said he likes being around other parents with disabled children because no one looks at you with pity. So true sometimes
ReplyDeleteI know the OH! myself. Hard not to, with two kids who are clearly other-than-average. Who wants average, anyway?
ReplyDeleteIn our little town, though, we blend in. It's only when we venture outside our little cocoon that we have to deal with the Wide World of the Well Meaning, the Curious and the Clueless. I just shrug it off and stay matter-of-fact.
I try to educate if I'm not dealing with corralling, or cajoling, or pouting. But that's not my first concern--my big old babies are. Why should I care what dumb strangers think, anyway? Life's too short to live by the standards of people who haven't shuffled ten feet in your shoes. If they can't "get" it, to hell with them!
Very well said! Those reality checks can hurt, but you are right. We cannot focus on the ignorance of others - there is too much to celebrate - too much to love about our children. My daughter is still young so I haven't had many comments yet, but I know they are coming and I am building a thick skin now in preparation for those times.
ReplyDeleteWell I'll tell you Lonnie said "Mel, you need to read Ellen's post" and I sat down to read it and after the first paragraph or so I stopped reading because I got teary. I said I'd get back to it and two days later...I finally finished it. This one hit a spot with me...I step out of my comfort zone of school, therapy, and mostly home...and reality hits me smack in the kisser...
ReplyDeleteThis was a great post... and I still have those moments when reality hits me like a 2x4 and my daughter is turning 27 and like a baby. She finally gets to go to an Adult Activity Center 1 day a week and our first few visits left me in tears when I got in the car to go home. She had been out of school for 5 years and it was just us living in our little bubble at home and now suddenly I am hit with the fact that she belongs to 'this' group of people. And some of these dear people are in their 40's and I wonder if I'll still be changing diapers when I am 60 and 70 years old.... that can be very overwhelming. So, I can't look there! I have to stay here in 'today' and then it's much easier and she is just her sweet self whom we love and it is what it is.
ReplyDeleteI came over to your blog from NHBO. Thank you for sharing.
ReplyDeleteOur DD's needs are different but we get the stares and the comments. Our DD was born with CL/CP and heart disease. What gets me is the comments people make b/c our DD is also hearing-impaired and doesn't talk outside our home much, but she can HEAR people. The comments are usually along the lines of how good she looks now that her face is fixed. *what is up with that?*
And about the Disney cruise, I am SHOCKED they do not accommodate SN kids on their cruises. How hard would this be to have specially trained staff? For Disney?
Royal Caribbean has a special needs policy for children derived from their Autism on the Seas program. Our 8 year old with DS, has both sensory and toileting issues, and has cruised with us several times in Europe. The staff is well-trained and understanding.
ReplyDelete