Wordless Wednesday: Coloring

Open heart surgery. One Year Later

It's exactly one year since Sean's open heart surgery. To say that it was the hardest day of my entire life, i an understatement. I won't bore you with all the gory details. If you want to, you can start here.

I remember every little thing about that day. Even the smell of the air. I remember not wanting to be touched or talked to until I had my baby safely back with me. I remember being so scared he wouldn't make it through the surgery. I mean.... so many things that could've happened in relation to his down syndrome either weren't present or never happened. So our luck was sure to run out somewhere right? I thank God that that morning was not the time our luck would run out. He made it out of surgery & thanks to our amazing ICU nurse, Eunice, he didn't need to go back to surgery to stop the bleeding he was still experiencing.

I wasn't scared of tubes because we had been warned about them & I was told that the more tubes we see leaving him, the better off he was. So we just waited. Waited for those tubes to be pulled 1 by 1.

We were allowed to touch him & I remember how much relief I felt when his skin felt warm. It was rosy & warm. He never was gray or blue before the surgery, but I was so relieved that he was warm & pink. The blood was still flowing well.

My sweet baby boy. I remember when I got to hold him in my arms. I still get weepy when I think about how amazing he felt in my arms. I wasn't afraid to break him anymore. I wasn't afraid he'd get to hot or to cold or to upset. You get the idea. It was almost as good as the first I held him when he was born. The sweet little baby that I was so afraid of. Afraid I wouldn't know what to do with a kid with down syndrome. Afraid I wouldn't get to hold him when he was born.

Here we are one year later and he's amazing. You'd never know without looking at the scar, that he had surgery. Instead of waiting to see if our luck is gonna run out, we practice our sounds in the mirror and playing "where's mommy?" to practice pulling to stand in the crib. We play a rousing game of catch the pest while changing diapers.

   

So sure. Maybe he's a little behind his typical peers in gross motor skills. He may not be walking, but he sure isn't letting it stop him from doing EVERYTHING else his typical peers are doing. And that includes making a HUGE mess and tormenting his big sister. Can you tell that he plays a mean game of tornado where he single handedly destroys the living room? He broke the door lock we have on the cabinet preventing him from getting in. Right!

And yes. Instead of telling him, "No."; I absolutely grabbed my camera & marveled in him being a normal almost 15 month old kid. And laughed. I laughed a hearty laugh because how awesome is it that my son, who I was afraid was going to die in surgery, moved the mirror, broke the lock, opened the cabinet & emptied its contents.

Thank you Dr. Bacha & Eunice for giving me my little boy. For making sure he lived to make me crazy with his antics. Thank you for making sure he lived to be a normal little boy. Thank you for treating him like an infant with a heart condition. Not like an infant with Down syndrome with a heart condition.

And thank you Sean for being an amazingly strong little boy. The Mohel complimented you and said you were strong. He said you were a fighter (even at 8 days old) & boy was he right.

Of course my gratitude extends to Rob, our family and our friends as well, but I'd be here all day thanking you all.

Autumnal Epiphanies

There's something about October. Something that doesn't happen to me in September when autumn officially starts. Maybe because the air is still warm and the sun still shines late into the evening and the leaves on the trees are still green.

But early on in October the air changes. The smell of the winds change. The temperature dips down into the cool 60's & warm 70's. It's different than the temperature change in the spring. In October, the air still hints at warm. It's a warm air that's trying to gather up some crispness. It's not a cold air trying to gather up warmth. In October, the air is hearty and smells of nostalgia of summers & falls gone by.

For me it's a time of reflection. A time to welcome in some signs of slowing down. When you can sit back with your favorite little girl and talk about the seasons and admire the wonder of the leaves changing color. Teach her that every season has a scent and that she should take a deep breath & take it all in. It's a time of sweat shirts and snuggles with your favorite guy while listening to the giggles of your favorite little boy.

A time of listening to stories from farmers like the one we met yesterday at our favorite farm, Valley Brook Farm in Layton, NJ. He told us about his mom's pumpkin pie & told us the cheese pumpkin was the best for soups & pies. He spoke of the recent rains and how long he's been on this farm. Of course we bought cheese pumpkin and we took pictures on pumpkins & in wagons. It was my kind of pumpkin picking. Quiet without crowds and calm conversation with the man who brought us the harvest. Thank you Mr. Farmer. We appreciate your hard work.

  

Time to get out our warm clothes and venture out into the cool brisk air. Time to snuggle with your biggest & warmest teddy bear. Happy Autumn. 
   

Things we never thought we'd see (videos)

Do you see that? It seems Sean likes to play fetch with himself. LOL




Sean's speech\feeding therapist gave us some helpful hints to get Meredith to eat. She told us that it seems (from what we've told her & what she's seen over the last year) that Meredith is afraid to eat. It's very similar to post traumatic stress, in my opinion. Rosie said it only takes one time for a kid to have pain while eating to make that association & swear off the offending food.

Now that Meredith has relatively well controlled reflux (it only took how long?!) it has come time to help her realize that food is good!!!! We've been telling her how she needs food to grow up big & strong.

Rosie told us that one technique is to offer up rewards & consequences for eating & not eating. So we've started to implement that. If she doesn't eat she loses something she really wants or likes. She can have things she wants after she eats. For instance, if she's wearing a princess costume & refuses to eat, she has to take her costume off. By the same token, when she tries a new food or eats, she gets something she wants. Whether that be to watch a fave tv show, wear a costume, get stickers, get to paint, etc.

It seems to be working. At least a little bit. The other day she pointed at a fried ravioli & asked to eat it. And then..... SHE ATE IT!!!

Tonight I told her that she had to have chicken and if she still didn't like it after trying it, she could have something else. SHE ATE IT!!!! Even Sean got in on the act & had a few peas. When Meredith saw Sean eating peas, she decided on her own to try those too. She took a couple of bites, but..... Well... you'll see.





"Peas are sweet like candy"

Buddy Walk 2011

The NYC Buddy Walk was today. This year was our first year participating in it. I have to say that going into this I had some fears about how I'd feel being there. I would, in essence, be facing my future.

I felt many things today, but the one feeling that kept coming back to me was humble. First. I was truly humbled by the generosity of others. Our team was able to raise close to $3,500 this year for the walk. We even had friends drive a very long way to walk with us.

The amount of support that people have given to us throughout our journey so far is truly amazing. I don't think I could have gotten through the trials & tribulations of raising a child with Down syndrome without your support. We have had many good times and many trying times. We've made some wonderful friends  and our kids have made some amazing friends.

Happy Buddy Walk 2011!!! It was a great time and the rain held out for us :)