Like Clapton said, "If I could change the world..."

So, here's a story you won't hear on the 6 o'clock news: I took Cooper to the grocery store the other day. That's all. Pretty anticlimactic, huh? Well, apparently some random lady is really proud of me for taking him "out in public" as she said. Let me start at the beginning.

I'm used to people coming up and saying hello to Cooper while we shop. Babies get attention, and I don't mean to brag (okay, yes, I do), but my kid is pretty darn cute! We had made it around to the meat department, and I was in deep thought wondering why pork chops seem to always come in an odd number. I mean, really, why 7 pork chops? 8 makes so much more sense! Anyway, a lady interrupted my pork contemplation by exclaiming, "Oh, he's so sweet!"

I turned and smiled and thanked her. She kept saying, "He's such a blessing, you know." I thanked her again, and told her that he definitely was. She kept acting like there was more she wanted to say, and finally said, "I have a special boy. They told me I'd never bring him home from the hospital, but he's 15 now."

"That's wonderful!" I replied. She still kept looking at Cooper as he waved and played patty cake. She told me about her son and how he had been oxygen deprived as an infant, which led to the issues. Finally she walked away. I moved on to the chicken. A few seconds later, she was back.

"Don't take this the wrong way," she said, "but does he have Down syndrome?" I nonchalantly told her yes, as it really doesn't bother me when people ask. There's only been one other time someone noticed and asked in a store, and they happened to have a child with Ds as well. "Well, he's definitely a blessing." She repeated, adding that old staple of, "Those kids have the biggest hearts." By this time I was ready to finish my grocery shopping, but I was still trying to be polite. When she told me I had a hard road ahead of me, and not to blame myself, I was beginning to lose my patience, but still maintained my polite composure as I knew she wasn't trying to be mean. The real kicker, though? The reason for this blog post? It was this little gem:

"I'm so proud of you for bringing him out like this!" she said with a patronizing smile.

It took some work to keep my jaw from dropping. I stammered and tried to think of how to respond. "Um, no...I show him off every chance I get. I'm very proud of him. He's the light of my life." I replied. With that she teared up, mumbled something about crying, and left me standing in the middle of the aisle, bewildered. It took me a moment to get my bearings about me and continue shopping. To borrow a line from my best friend, I was thinking, "Is this real life? Did that really just happen?"

A little boy!

Proud of me for bringing him out? As opposed to what, leaving him in his cellar at home? Are we in the early 20th century, when institutionalizing kids with Ds was the norm?Cooper was sitting up in the shopping cart, waving to people and playing patty cake. How is that any more difficult than taking a "typical" child shopping?
You know, that hardest part of being a special needs mom (gah, I hate titles), is not being Cooper's mom. It's not therapy appointments or doctor visits or developmental delays. Loving my child is the easiest thing I've ever done. The hard part is other people. The attitudes and stereotypes and comments, both well meaning and otherwise. I wish for a different world for my boy. I wish I could make other people see him how I see him. He is smart and funny. Inquisitive and nosy. Stubborn and a little mean at times. He has been walking for about two months or so now, and definitely knows the sign for "eat" and uses it often! He is a little boy. Not a syndrome, not just sweet...a little boy, with so many different aspects in that big personality. Down syndrome is what he has; not what he is.

In other, more positive news, we went on our first family vacation this month. It was a lot of fun! Coop did really well. =) Here are some pics from vacation:

Beautiful scenery

Not too impressed!

On our way there!

Trying to eat sand.

Shark!

Debbie Downer...

We're all basically good people, right? I look at my baby,  and I think, "God, I hope so." I get so scared when I think of the future. When I think of how others might view him, or worse, how they might treat him. He's a baby right now, and who doesn't like babies? But, what about when he's an adolescent, or a young man, or even an old man? Will people see him for the person he is, or will he be "that guy with Down syndrome/the Down's guy/etc.? Just insert worn platitude about how people with "Down's" are so sweet, special, cute, ______, fill in the blank. I always say that there are two things regarding Down syndrome that truly bother me. They both involve the future. Number one is the thought that people will not accept Cooper for the person he is, that they will not take the time to actually know him. That one, while it hurts from the viewpoint of a momma who wants her child to be accepted, doesn't pain my heart like number two. My biggest, worst fear is a double edged sword. I am afraid that Cooper will die before me. Life expectancy for persons with Down syndrome currently averages about 60 years old. This means that it is a possibility. The other side to that coin is that I'm afraid I'll die first and he will be left alone. What a miserable conundrum. I can't think of it too often. It is simply more than I can bear.
I can't really do much at present time to find a solution for that, but I can try to address issue number one. Can I ask for you help? Will you attempt to look past the differences of those around you and see the person? Will you look beyond stereotypes and outdated thought trajectories to gain a broader perspective? To help get you started, here are some current things about Cooper and his ever expanding personality:
-He despises having his nose or face wiped and fights vehemently against either.
-He terrorizes our dogs and his reign of terror only grows as he becomes more and more mobile.
-He doesn't care about the word "No." In fact, he smiles when you tell him no and proceeds!
-He loves to pat. He will put his little arms around your neck and pat you on the back. Cutest thing!
-He is quickly becoming more of a toddler and getting into everything.
-At present time, he is very much a momma's boy (which of course I love!).
-He must have whatever is on our plates. Not one tooth yet at 14 months, but brother can put the food away!
-He is brave, strong, stubborn, and growing more independent all the time.

So, please know that he is not a "Down's baby" or just "sweet." He's a multi-faceted human being, just like any other person. He has likes and dislikes, gets his feelings hurt, and has the capacity to learn and grow and be fulfilled. Did you know that there was a time when people like Cooper weren't allowed to go to public school. They were institutionalized in what were often deplorable conditions. It was preferred that they were not seen or heard in many cases. The strides that have been made are encouraging, but there's still a ways to go. A wise person once said, "Be the change you wish to see in the world."

Some random pics (just because he's so darn cute):

Time flies when...

I'm having a hard time, people. I didn't have a hard time when my baby was placed in his crib in his own room as opposed to ours. I didn't have a hard time planning his first birthday party or on the actual day of.

The kid is one!

I've sort of bumbled along, enjoying him and not thinking too much about the passage of time. It's this thing where you look at your child and you see a baby, because they're your baby. And then one day you see someone with a younger child and you say, "Oh my gosh! When did my baby get so big?" And all of a sudden your baby doesn't seem like as much of a baby anymore and a dull ache sets in with this startling realization. 

Where did it go? How did this happen?

That's where I'm at. Last night I was looking through some older pictures on my phone and I came across one (or 50, but who's counting?) from when Cooper was about 6 months old. As it hit me that he is now over 13 months old, sadness also hit. He is beginning to look more like a little boy every day. He's growing taller and observing more, and getting into anything and everything he isn't supposed to by way of his funny little inchworm crawl.

Big boy haircut and big boy toys!

A year, gone just like that. His  babyhood is slipping through my fingers like fine, dry sand and I'm clinging tightly, but to no avail. My heart aches and I want to cry. I want to wallow in self pity and bemoan the unfairness of it, but that would be silly. This is life and this is what happens. Children grow up, time passes swiftly and all we can do is try to be present each and every day.

I realized how quickly life was passing even before Cooper was born. I used to have days when I'd feel this suffocating anxiety thinking about not having enough time with B. But this? This is time moving at warp speed. I feel like I'm going to turn around and be dropping him off at school. It's almost too much to bear. It really does make me feel the most incredible sense of sorrow. To love someone the way I love these two guys of mine...its madness. It is to be vulnerable and it is painful. But it is also rich and rewarding, and is the very essence that makes life worth living. With that said, right now will have to be enough. I will try to remember the details. To remember what chubby little arms feel like around my neck, the rhythmic sound of his sleepy breathing, the way he reaches for me when he sees me no matter who is holding him, and the sweet sound of his giggle when daddy is tickling him. Yes, I promise myself I'll remember these things. After all,  I've waited my whole life for them.