The special kid on the block

This weekend we had the opportunity to pack up for the weekend and unwind. I really needed to unplug and not think to much. I've been suffering some serious mommy life burnout lately and I haven't known what to do about it.

So I did what I do best. Take my kids and go. Of course Rob came too, but he came after work. We decided it was best for everyone for me to leave when the kids could nap as opposed to night time when everyone would sleep in the car to close to bedtime and we'd sit in rush hour traffic if I stopped to pick Rob up from work.

The ride up was quiet & peaceful. Full of much reflection & contemplation. I let my eyes wander through the traffic that wasn't supposed to be there at all of the people in their cars trying to vie for a spot that wasn't rightfully theirs. I watched as drivers weaved in & out of lanes in the hopes of getting to their destinations quicker. All the while I thought, "what is so important that you have to push your way through & essentially create this traffic?" As I got to more open road I felt free. Yes I still had the kids in the car, but they were sleeping. Totally oblivious to the fact that I had the radio up louder than usual and cruising at a speed probably best left to the professionals. I felt like I had nothing holding me back. No obligations. And it felt good. Of course my better mind quickly regained control and I slowed down to a more mommy like speed. I won't tell you what it was though.

When we got there all I wanted to do was sit. My kids, on the other hand, had just woken from their naps and were raring to go. Thankfully enough some sparkly pom poms, lots of space to run around & an exersaucer are all that was needed for an afternoon romp to burn off some energy. Normally I'd let Sean wander & explore as well, but quite frankly I had no desire to keep saying "Seany what are you eating?", "Seany, don't pull sissy's hair.", "Meredith why'd you take that from him?", "Could we not poke the dog in the butt please?". The exersaucer has proved to be a great babysitter thus far.


 







 




 



We learned about trees & their leaves. As well as where we are in space.

 










We gave butterfly kisses and discussed what would happen at the dentist. Which of course sent a very happy little girl into hysterics. Oh the drama!









Throughout the weekend we had opportunities to laugh & do things we haven't done before. Rob & I got to watch the meteor shower. Ok.... well.... I got to watch the meteor shower while Rob kept cursing because I'd see one or a few as soon as he looked away.





To bad I didn't have my tripod. I bring you the moon.
 

Meredith got to make her great ema's sour cream cake and learn all about measurements & patience. Ok well she didn't much about either. She kind of got the gist of what a measurement was & why she needed it, I think, but patience is still a virtue that eludes her. But she did manage to steal a few chocolate chips while her great ema enjoyed a few too. 
   






I guess there's something to be said about taking your opportunity when it comes a knockin'. 
And while we had a great weekend much of the time, it still wasn't without it's glitches. I decided before I left that aside from my cell phone, I was going to unplug for the weekend. I was going to focus my energies on my happy little family and those around us. I was truly going to soak in the essence of their happiness in an attempt to figure out how to get out of my funk. I made it a point to revel in all that we have accomplished in the few short years we've been married and to really take notice of us. Really unwind. 
I celebrated all that Sean has been able to accomplish. Things I thought I was prepared for never to happen. Ok I wasn't so prepared for them never to have happen, but I had accepted the fact that Sean has Down syndrome. I accepted the fact that his gross motor skills were lacking compared to most kids. That is.... until some of the people that are or should be close to him brought that all crashing down on top of me.  
I am finding that I can brace for the comments I know are inevitably coming or the questions from people who genuinely want to know more about Sean and what makes him him. I can handle curiosity and I can handle rude comments from strangers.   What I cannot handle or wrap my mind around is...... "Wow he's really alert." To which I reply, "well why wouldn't he be? He is 13 months old." Because that is how I treat & see Sean. I know that Sean has obstacles to overcome. Just like the rest of us damn it! So when the next underhanded comment came out of this person's mouth, I was floored and didn't know how to react. He said with quite the heh heh heh kind of chuckle "Why wouldn't he be? Right." Like somehow I'd missed a memo that said, "All children with Down syndrome will not be alert. They will all sit in a corner while drooling completely unaware of the world around them." Come to think of it.... Maybe I did see a memo like that. And I said "Fuck that!" 
And I was able to vent about it to Rob and get over it. This person is older. He's from a different period of time when people with Down syndrome were carted off to institutions never to be thought of again. So I chose not to fault him for thinking in such a manner. I do however fault him for letting the words & thoughts he was thinking escape his mouth. 
Again..... I chose not to let it bother me or ruin my weekend. And then it happened again. This time from someone younger. She said "He looks and acts the same way {my son} did at 9 months old." I was floored. I know she didn't mean it maliciously. I know she didn't intend for her words to sting. But I was and am so hurt. It hit me like a ton of bricks. I'm sure she meant it like "he's going to crawl any second because sean is acting in a manner like my son before he crawled." I get that. And it's not like I don't know that my son is "behind". I do know it. I live it every single day of my life! 
But to know & hear that other people can see so clearly that he is behind kills me. It hurts me so bad that there is already such a significant lag between Sean and his typical peers that at that very instant, that comment left me with no hope. It left me with no hope that my son would ever "catch up" in this game of life. He would never amount to more than anyone told him he was going to be. I felt like I was fighting a losing battle. In one fleeting moment my whole world was shattered, again. Just like it was when I got the diagnosis and I mourned the life I had already created for him. I had created a new life for him in my mind and that was gone now too. 
And I know people think that way. I know people see it, but no one, until now, has ever said it. Those 2 comments made me realize that no matter what, Sean is always going to be the "special" kid on the block. You know the one that everyone can tell is a little off, but no one is really sure what's "off". The one everyone whispers about or whispers about the family & how hard it must be. That family is always going to be us. And while things are considerably easier than they were a year ago..... my life is always going to be perceived as harder than it should be. 
People are going to cheer & clap for Sean in a "hey look at what that seal just did" kind of way when he does something child like or something they don't think he should be able to do. Now.... that's not to say that Sean's accomplishments shouldn't be celebrated like any other kid's, but just not in a patronizing condescending kind of way. I don't know if that makes any sense at all, but...... 
In the end none of it really matters because I love my son with every fiber of my being. My only wish was that I had as much time with him as I did with Meredith to teach him the way I taught her. I'm still working on that one. I have since regained my hope that Sean's life will be more than anyone says it will be. I have still not gotten over the hurt, but I'm working on that one. 
We decided to stay an extra night because of the monsoon that descended over our neck of the woods. It was a good thing we did, too. Yesterday was the 5th highest rainfall EVER recorded in our area. Streets & highways were flooded and shut down for hours. It would've taken us forever to get home. Instead we enjoyed the spoils of Meredith's baking and then enjoyed a good night's sleep. 
Today we drove home in rain & downpours, but nothing as bad as yesterday. 

And to leave on a happy note...... 
Sean has mastered the 2 handed sippy cup hold. He has been doing this for awhile. I"m so proud and no weekend is complete without a jam session with the new drum.