Something about road trips

We took a weekend trip up north. We hopped in our new for us Explorer and we went. We needed to take care of some business and stayed with Rob's parents.

As we drove I was able to think and contemplate. To think about nothing & everything at once. Rob was asleep. The kids were asleep.

I watched as we rolled through the mountains that looked like giant bunches of broccoli. I chuckled as we drove through them. I watched the sunrise over Virginia. It was an awesome sight to see and made me feel so small in the world. Very humbling.

We made a few stops on our first trip "home." Everyone got to stretch their legs and goto the potty.

We even got to see the capital building in Harrisburg, PA complete with enormous fountain.

Here's the thing about going "home". It no longer feels like home. When I anticipated my first drive back up north since moving, I assumed I'd feel a sense of nostalgia. Some feeling of attachment to NYC. I actually felt quite the opposite.

That's not to say that I didn't miss certain things about NYC. I certainly miss the salty sea air and our close proximity to Coney Island. I miss being able to goto the beach any time I want to get an iced cream cone or visit the aquarium.

Meredith was so excited about seeing her ema & epa. It was all she could talk about & ask about. It was her version of "are we there yet?" "Mommy. Are we going to see ema today?" "Yes baby." Rinse & repeat for 14 hours. 4 hours longer than it should've taken because of the traffic & torrential downpour we drove right into. Humpf.

But we arrived. Exhausted, but.... in one piece.

And we lived it up. We went to Coney Island to play in the sand & surf and tried to enjoy the Mermaid Parade. Unfortunately it was way to hot to be in a crowd that big. We also couldn't get to Denny's iced cream stand because of the parade so we'll have to go when we go back up. Apparently it's the last year Denny's will be open. I'm kind of saddened by that. He has the best soft serve pistachio.

Meredith was not thrilled with the heat & crowds either.

But all was right with the world when we made it down to the surf.

Lady M even impressed me. She went INTO the water. Until this year she's been really afraid of the water. She wasn't always, but she got knocked over by a wave when she was an infant and that was it for her.

After Sean woke up from his short lived nap, even he joined in the fun. He was not as thrilled as Meredith, but..... I know he missed that salty sea air as much as I did.

Once he finally realized "Hey! This is pretty fun...." he was all in. 

While we battled the crowds we got to see some of the parade.





We all had a good time. And we'll miss you old friend. See you in a few weeks.

Happy Father's Day

We had the kind of weekend people talk about remembering from when they were small. The kids flew a foam glider, used a water cannon and played on a giant water blob. It was very low key and we enjoyed it very much. 

Sean had other ideas for the water being used for the water cannon. Apparently anything with water in it is a water table. 

Everyone enjoyed the water blob and now that I've done it once, hopefully it'll be easier to do next time. My tape wasn't nearly as neatly done, but it held up. Even with Rob perfecting his worm

Sean wasn't to sure of what to make of it......

And by the time he finally really enjoyed it, he was onto other things. Like hanging out with daddy & petting the dogs. 

Happy Father's Day to all the dads out there.

A Child's Laughter

Nothing compares to a child's laughter. The kind of deep belly hysterical laughter that escapes a small child is an amazing cure to so many ills.

And with this child all you have to do is sneeze. It doesn't even matter if it's a fake sneeze.

Dear Universe

Here I sit at my dining room table. I'm wondering whether it's "you" I need to be writing this letter. Maybe it should be God. Maybe it should just be addressed to myself. No. No. That can't be right.

I am sitting here feeling like the powers that be are not on my side. There is one thing on this earth I keep asking for. One thing that I work hard to help Sean achieve. It's for my son to WANT to stand on his own. I want him to WANT to walk.

I know he can. I know he knows what to do. Why oh why can't it click for him? Why is he so content to hop on his butt? And for the love of all that is holy..... why must everything, this skill included, be his idea?

I know. I know. He's gonna do it when he's ready to. Just like everything else. I am trying to let go. I'm trying to accept that this is where he's at, but it's so hard to know he CAN and just WON'T. It's beyond frustrating. It's hard to be on the verge of 2 years old and have this be where we're at. It weighs on my mind and it hurts. It's hard to hear Meredith ask why her little brother isn't walking like her friends little brothers & sisters. It hurts to have to tell her that he will and not have an answer when she asks when.

I have tried everything our various therapists and friends have told us to try. I have tried to break it down into ever smaller steps.

But.... unless it's his idea... it's all for nought. I'm about ready to throw my hands in the air & give up.

Anyway.... here I am universe. Begging. Pleading. Asking for my son to do it. To just stand up and/or walk. Give me something. Something to hang onto to make my efforts feel like they're worth it. To help me feel like I should keep working. To help me feel like it's not for nothing.

Yours truly,

One very discouraged mommy

Have a brother, but wanted a sister

Here's what happens when you order a little sister, but the stork delivers a little brother. You make due. 

Poor Seany. It's gonna be cute when she's dressing him up in tiaras & tutus. 

Today I'm sad

Today  I'm sad. I'm sad that Sean has down syndrome. I don't know why it has suddenly hit me again. Some days I see nothing in him, but a rambunctious little boy. Other days all I see are other kids running circles around him. Still others all I see is down syndrome and nothing else in his face. Nothing else in his personality.

I watch his hands. His mannerisms. His stubbornness opinionated nature. I watch his smile. I watch him navigate his world. I see how he reacts to his surroundings and relates in a very boyish way.

But there are struggles. And some days I shrug it off and days like today I cry to myself. Not because it's so hard to raise a kid with down syndrome. It's not. I cry because I'm tired of the struggles. I'm tired of knowing that just about everything is at the very least a little bit harder for him.

Today I am angry that my child has down syndrome. I am angry that down syndrome has essentially robbed me of my parental confidence. It has robbed me of my parental innocence to assume Sean understands his world. It has robbed Sean of a care free mom who would have been able to just assume that Sean would be able to do things.

I am angry that down syndrome has frustrated me more than I care to admit. I'm angry that it still makes me angry at times.

I couldn't love Sean more. His eyes couldn't sparkle enough in my eyes. His quirky personality.... Ok he could be a little less silly, but then he wouldn't be as funny. And really everyone loves a funny guy.

And those reasons, along with many more, are the reasons being angry at down syndrome makes me even more angry about it. It's part of who he is. Down syndrome has opened my mind and heart more than anything else in my life. Because of it, I am more acutely aware of the little things that make life worth living. I've been taught to slow down & take it all in.

What's so bad about that? Isn't that what so many people strive for? To slow down? I just wish it wasn't everything. I wish that we could have just a few things that moved a little quicker than snail's pace. A little variety.

Ok vent over. Back to my regularly scheduled broadcasting of life as we know it. :) Complete with skipping steps on the way to perfection.

Wordful Wednesday- Peace at Last

This week has started off as a whirlwind kind of week. We got a call at 10am on Monday that an appt had opened up for 1pm that afternoon with an ENT for Sean. Did we want it? I jumped at the chance since Sean has had yet another ear infection and has had to get Rocephn shots for it. UGH!!!

Dr. P offered us the opportunity to have the tubes put into Sean's ears on Tuesday morning, but we'd have to clear it with anesthesiology because of his heart. Well..... lucky for everyone I keep Sean's last report from Dr. L in the car. Ya know... just in case. We were able to fax it over & get Sean approved to have it done at the outpatient facility.

No one better question my OCD level of organization again!

I will say it's never easy to hand your unsuspecting baby over to a nurse for any procedure. It doesn't matter how minor.



After a rocky morning and a late start to the procedure, he did well. Very well.

He did get a little sick from the anesthesia, but he seems to be doing even better now. We can tell he's able to hear things he hasn't heard in a while. And he even started to make a new sound. He made the "Z" sound last night.

He slept peacefully and even cooperated well at physical therapy this morning.

I'm one mommy who's raising my cup of coffee to a job well done by Dr. P. Thank you for making my baby feel better.