Doing the Friday Dance

It's Friday. It's time to shake off the funk I've been feeling and put the week behind me. It's time to finally do what my gma tells me to do. Give myself a big hug and look at what I have accomplished.

It's hard. Hard to really acknowledge that I had a hand in doing something positive. I don't lie when I say I'm hanging in there. I am really just hanging in there. I struggle everyday to find a balance between patience, carefree parenting and "wow could you just leave alone for 5 minutes?" And lately I've been in a serious mommy burn out funk.

But tonight I followed my gma's advice. After allowing a later than usual summer like evening, I watched. I watched my kids smile and learn. I watched them play in a way they weren't able to before. I looked around and saw what I had manage to accomplish. Not without help of course.

In a few short months we had managed to create a whole new life and almost settle into it like it's been our lives forever.







In just a few short weeks I have taken the advice of another mom whose son also has down syndrome (you can find her blog here ) & worked really hard on meeting Sean where he is. Yes yes I'm still pushing him to reach new heights, but not with the same hardcore vanity I once was.

I'm pretty sure that boy is mocking me, but I can't prove it. He knows how heavy he is getting & that I'd really like him to walk. I'm pretty sure he's running laps at night in his crib.





Let me tell you that it's been so hard for me not to get frustrated. I know he can do it, but he can't. Does that even make sense? I know that it's the path from the brain to the feet that gets Sean every time and I feel powerless to help him figure it out. If you know me you know how much I love to feel powerless.

I'll post an Early Intervention, therapy, what is Sean doing now? post shortly.

Be Careful What You Wish For

Some of my hopes when we moved down were that there would be families with children the same ages as Meredith & Sean. I hoped we'd like them and that my kids would have more friends than just each other and us. In NY I found that everyone already had their clique or just didn't have time to get together. 

I got my wish. We found families with kids Meredith & Sean's ages and Meredith & Sean like the kids. Rob & I like the parents. Win win right?

Wrong. I mean yes it is win win, but it's also win lose. Seeing & being around all the kids around Sean's age had made me painfully aware of just how immature he really is. By all specialized testing, Sean is right where he "should" be in all areas except gross motor skills (standing, walking). Yay! Let's celebrate!! 

Yes he's in the dog crate

Only all I wanna do is take him home, lock the doors and wait for him to get "there". I hate watching other kids his age running, sitting at picnic tables, understanding, climbing, etc while he sits in the stroller during an activity like dying easter eggs at the picnic table. It hurts me for him. 

In September he starts school with these same age peers and I constantly wonder whether he'll mature a lot between now & then. Will he be able to walk by then? How about run? Will he be able to sit in a chair & understand that he cannot kamikaze out of it head first? I'm sure that the teachers will not appreciate that much. Will he be able to understand "come to circle time"?  

How much less mature (in general) will he be in September? Is there any chance that he'll even remotely catch up? Yes. I know that being around his same age typical peers will be good for him. He'll be motivated to achieve more because of them and they'll grow up only knowing Sean. Not "ew who's the special kid?" I'm so happy for Sean to have friends, but I wish he was able to interact with them more on their level. 

I've learned how to put my big girl panties on & suck it up, but on days like today I just have to walk away before it all gets to be to much for me. I don't like to talk about it much because who wants to bring the party down? And really.... I don't want mine or my family's life to be about down syndrome. I want it to be about life. I love my son more than life itself, but some days it's harder to face that we are in fact different. That we have a different un-hideable (yes that's a word) dynamic. 

Sean is doing well and for that I'm grateful. It's just much easier to live in denial when he's the only little one around. It would probably be easier if I wasn't the only one in this group in my situation, I haven't found anyone willing to bridge the gap with me yet. Maybe one day soon that will change. 

Until then.... get over it and move on. Right? Right!? 

We're officially residents of North Carolina

A couple of days before we left Sean decided to make things interesting. He ended my clear run of not having visited the ER for either of my children. Poor guy woke up unable to get air into his lungs. I rushed him to the ER where he received a few breathing treatments. I have only ever been more scared once.

When I picked Meredith up from her last day of school in NYC, her entire school said goodbye to her. It was the sweetest thing I have ever seen. She also got her school pictures in  that day.

We hung out with Rob's parents on Friday night after our truck had been loaded. We stayed overnight as Renee & I prepared for our drive down. Yes ladies & germs Renee & I drove down with 2 kids, 2 dogs & a fish. We thought it was going to be a rough drive since Sean & Meredith were crying when we first got started. I was fully prepared to park at long term parking in Newark Airport and fly down if the screaming didn't stop. Thankfully enough they fell asleep. For 3.5 glorious hours, they slept.

We stopped at IHOP in College Park, MD for breakfast with some friends. And because nothing involving me should be boring, I promptly got thrown up on by someone else's kid. They weren't even a part of our group. Blech. I was present enough to duck so that my hair didn't bear the brunt of the funk, but I did manage to get it all down my back. Unfortunately for Renee, I was wearing her sweatshirt.

 

 

I was pleasantly surprised by our drive down. Both kids were fabulous. Both dogs were fabulous & the fish survived. Renee & I chatted the whole way down and I am grateful she was there to keep me company.

It's official. We're North Carolinians. Say that 5 times fast. 

Meredith has started her new school. She loves it & they love her. We've met some of our neighbors & Meredith has made fast friends. She introduced herself to Jack (2 doors down) as Meredith "But I'm really Belle" Her friend Jack tells his mom that he wants to go visit his princess. Is that sweet? 

   

And yesterday I had the pleasure of meeting & hanging out with a fellow Brooklyn transplant and her kids. Andrea brought Alex & Cicci over for some moving box mural making. To say it was a fun time is an understatement. The kids played, painted, played marching band and had donuts. All while it was sunny and then raining. Alex thought paint slip & slides were the bees knees and she sure was right! We had a blast and can't wait to see them again. 

   

This is why we moved. We moved so the kids would have a better life and we'd be able to watch them enjoy their lives. Making friends for ourselves is gravy, but it's good gravy that we're happy about adding to our buffet (thanks GMA).  

The smiles are what it's all about. 

Packing reaching fever pitch

We move in 10 days!! I can't believe it. As we get closer to it I can't help, but feel anxious. It's a BIG move. It's not a move 2 hours away (by car) where we can still be a part of our NYC life as if we haven't moved. This is an 11 hour drive (non-stop). Our house is packed up. New things for the new house have been ordered. Clothes have been packed up. And as everyone knows..... once the clothes are packed up, it's go time. 

I'm excited and nervous. Meredith wavers between being upset about leaving & being excited about new adventures. Sean doesn't understand, but I'm sure he realizes something is going on. He's being extra affectionate with his therapists & extra cooperative. 

One thing we're finding is that there are things that aren't worth packing. Like used finger paints. I've been perusing Pinterest and have found all sorts of good things to do with the kids. One thing was to put oil & finger paints in ziploc type bags and then tape them to the window so the kids can play. Well.... my windows are to high & I only really have the ikea mirror for the kids. So we made do. 

I taped the bags using packing tape to the mirror. 

 

They had fun & it kept them busy for quite some time. FABULOUS! 

Almost completely finished packing. New adventures here we come!!!!

Guest blogger, Flat Samantha, coming soon. :)