Gonna Try

04429cf419307f9386ff6482757d8f8aTo get back on track here. Hopefully now that the holidays are winding down, I’ll get back into my routine and start posting more again. Not sure if anybody’s even still out there reading this, but if there is, I’ll try to do better for you.

I’ve got a story from the beginning of the month I want to share. About my Henry. Earlier in the month, his school had a fundraising night at our local Culver’s where some of the teachers acted as servers and a percentage of the proceeds went to the school. I had been planning to attend, but, of course, I forgot. However, we had gone to an away basketball game for Maggie & Steven’s school and decided to hit the drive-thru on our way back. As I’m at the window paying, I see Henry’s favorite gym teacher inside and the pieces fall into place. I told the window worker that we would come inside and eat, so we pulled around & parked.

We got inside – I’m holding William and Maggie brought Henry in and set him down. He walks up to his teacher, stops in front of him, looks up and says, “Meehhhhhhhhk” in his deep, gravely voice. It’s then I realize Henry is shoeless and only wearing one sock. This is the clip they’ll show when I’m nominated for the Best Mom Ever Awards.

We go grab a booth and as we enter the dining area, other kids & families are looking at us. I recognize no one. Then I hear some kids saying, “Look! It’s Henry!!” and their table all turns to look. I smile at the girl who said it and say, “Oh, you know Henry?” and she responds, “Sure. Everybody knows Henry.” I honestly expected a “DUH” on the end of that one. I was really surprised and it made me smile.

Mr. Meck brought our food and, even though Henry wanted nothing to do with what was happening, people kept coming over to say “hi” to him. Just….whoa.

We finished and left and had some kids say goodbye to Henry as well.

The next morning I took Henry to school. His associate, Lisa, (who’s amazing, by the way) came out to meet us and I took Henry up to the sidewalk. I wanted to tell her about the Culver’s night, so I said, “Apparently, Henry was a rock star at Culver’s last night!” to which she responded, “Yeah!! I heard about that!”

I was like, “really?? You’ve already heard about it – people are talking about it??” as we’re walking into the school. Quick aside – as you enter his school, you walk immediately into the cafeteria area where all the kids gather before school so everybody goes to class together. So, we’re having this exchange as we walk into this area. And I hear several more “Hey!! It’s Henry!! Hi, Henry!!!!” exclamations from all the kids gathered in there. My jaw drops. I say, “My gosh, everybody really does know him!” Lisa stops and looks at me. Then she says, “Oh my gosh – you have no idea the effect Henry has had on this school.”

WHAT?!??

“Yeah,” she says. “So many of the kids will say hi to him as they walk down the hall. In P.E., kids line up to play with him (apparently, Henry had the attentions of all the girls in the 2nd grade class as they played ball with him one day. They all stood in a circle around him and played catch with him), older kids who come into the room want to hang with him. Seriously – everybody knows & loves Henry”

She then proceeds to tell me about her kids. She’s got a college-aged daughter and a high-school son. Her daughter has come in and worked with her & Henry in the past, so she knows Henry pretty well. She tells me that she goes home and they talk about Henry over dinner, her 18 year old, football playing son keeps saying he wants to come in & meet Henry. Her daughter has a picture of Henry in a heart on her Facebook. Her son has stood up to his classmates & teammates about the use of the r-word at school because of what he knows about Henry. And, most amazingly, her daughter told her that, after knowing Henry, she believes she could have a child with Down Syndrome. That the diagnosis of DS not only wouldn’t be a tragedy for her, she would be okay with it.

Y’all. Y’ALL. It’s happening. I’m sitting here in tears (and I was totally crying as she told me this walking down the hall to Henry’s class) because IT’S HAPPENING. People are meeting and knowing Henry and, because of that, their perception of people with Down Syndrome is changing. His peers not only are okay with it, they’re seeking him out and treating him like any other kid. Adults are meeting him and realizing it’s just a diagnosis – not a stigma. I cannot believe it. I am so happy about this. Henry – this little, often annoying, loud, frustrating, personal-space invading monkey is CHANGING PEOPLE. It’s everything I’ve wished for and it totally makes me wonder how much more of this will happen in the years ahead.

Okay – now the other side of the coin. I’m also having trouble with envy/not-fair-ness for Henry. He’s 7 now. Wait – before I write this, let me preface it with this. Someone out there is going to recognize what I’m talking about here. It will not only be familiar, they will recognize it as them. To that person/those persons: Please do NOT make this admission make you not want to share what you share. I love reading about the things you share – this is my problem because I’m just a human being and I’m infinitely fallible. I hate that I’m like this, but I want to be fully honest in my recollecting Henry’s life, so I’m saying this.

Okay – Henry’s 7. I know someone who has a child with DS who is a year younger than Henry. I read about what this child is doing – how this child’s Christmas was, what this child is doing at school, etc. – and I’m terribly envious. Because this other child is leaps and bounds ahead of Henry. This child got a camera for Christmas and went around appropriately taking pictures. If Henry received a camera? He’d throw it through the TV. Henry got a cow rug for Christmas because we can no longer think of things to get him that he will actually play with instead of using as projectiles to destroy our house. In fact, he commandeered most of William’s toys and wouldn’t have the slightest idea what to do with something more age-appropriate. This other child gets clothes as presents and holds them up nicely for a picture. It don’t even bother showing clothes to Henry. To him, they’re for removing and throwing at someone. Shoes? Throw really well. Socks? Throw less well, but still throw. Pants? Are stupid and often too long, so off they come.

I hate this about myself. I hate that I can’t hear about the development of another child like Henry and be just happy about it. I hate that it makes me depressed that Henry isn’t anywhere NEAR that yet. I hate that I can’t just completely and utterly accept Henry for who he is and where he is. That I wish for more on a daily basis. Don’t get me wrong – I don’t want him to be “normal”. I don’t compare him to neurotypical kids. I just want him to be more developed like a child with DS who is his age. I want him to play appropriately. I want him not to hit everyone. I want him not to kick people in the face. I want him to put down things he’s done with rather than chucking them across the room. I want to be able to tell him, “I can’t give you Cheerios now, I’m driving” and have him understand that. I want him to stop being a dictator and insisting on everything being exactly the way he wants it. (Well, I guess that’s not so far off) I guess I want him to be more like this other kid. And I can’t have that.

Sorry. Went from major joy to pity party in just a few paragraphs. Not really what I wanted to do, but I do want to be honest. Life with Henry is often way. too. hard. But it’s also often really good. I don’t know. Just wanted to get all that out of my head. I sure do love him – just wish he’d love me with less pain & whining.

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