Patience

So we are getting ready for our second visit to the Institutes in Philadelphia. We leave December 9th and I'm getting together all our documentation, videos and notes to report back to our advocates. I have to admit that it's been hard to keep up with all the things they intended for us to do. Life sometimes gets in the way.

I'm excited for our friends at the Institutes to see Joaquin. He really has accomplished so much in the past 6 months. I still can't believe he will be 10 months old in two days. He is such a different baby than he was 6 months ago but then again isn't the first year of a baby's life the most amazing transformation. I wonder how much of it is just Joaquin and how much of it is the work we've done together.

As I prepare for our journey to the Institutes, I can't help but think of all the things he hasn't accomplished and I know I need to be patient. Things are always going to be a little bit harder and take a little bit longer for Joaquin. It's difficult sometimes to see other children the same age as Joaquin, or even much younger, that are developing and accomplishing things that are taking him so much longer to learn. Even simple things like spoon feeding which is a big effort for us and comes so easily and naturally for others. Then there is the crawling....Joaquin is still only arm crawling when he wants to but hasn't figured out that it's a mode of transportation. He hasn't really taken off with the skill and I was secretly hoping he would be by now. I look at my niece Jolie who is spoon feeding easily and crawling on hands and knees all over the place and she is 6 weeks younger than him. I'm truly in awe of her ability to do these things and now I appreciate these accomplishments so much more than I ever did before. I just marvel at how easy it comes to her and how hard it is for Joaquin. He works so hard. You should see him pump his legs and arms in the air on his belly as if somehow he will fly across the room. It's adorable but heartbreaking at the same time.

I need to be patient, however, sometimes I can't help but feel like I'm responsible for his delays or that somehow I'm a failure as a mother if he isn't hitting these milestones. I completely understand that every child meets their own milestones on their own timeline but having a child with special needs puts a slight twist on that. It's like a race against time. You don't want your child to fall too far behind.

Despite the delays, I am so proud of Joaquin and we celebrate together every day. We celebrate the little things, the everyday things, small accomplishments and the big ones too. We celebrate how much more interactive and alert he is. We celebrate that he can hear all sorts of sounds....even the scary ones. We celebrate how he flirts from the grocery cart seat at shoppers passing by. We celebrate every little sound he makes, every movement, every single little thing. So even though I still need a lesson in patience, I know I will get there. I have the best teacher in the whole world.

Thank you Joaquin.


Reading his bits of intelligence

Coming down the crawling track

He sees his favorite bits

He is going to get them

Look! it is a surprise face...

I love my bits

Not So Sure About Santa

We were very brave and ventured out to the mall on Black Friday to visit Santa....and there was no line to see him. Very strange.

He wasn't the most convincing Santa and he kinda looks a little sinister in this photo. Joaquin was mesmerized by his beard and had his hands on his face but the photo people (a.k.a. Santa's elves) wanted him to look at the camera. So they proceeded to make a bunch of noise and whistling sounds to get his attention and when Joaquin turned to look at the camera, he looked a bit stunned by all the commotion. No tears were shed but at one point, Joaquin was squinting from all the noise. My guess is he is still adjusting to the increase in volume in his ears. It was also a very stimulating environment with all the lights and decorations.

I would have preferred a shot of him gazing at Santa (how sweet would that be!!!) but the elves wanted nothing to do with that. Apparently you don't have a say as to which picture you get.....as Diego and Mateo would say "you get what you get and you don't throw a fit!"

An AMAZING Teen

I was so touched by this article that I have to share it.

This athlete never fails to amaze his teammates, fans

Is it OK to hope for a story like this to be written about Joaquin someday? But maybe with him in a Jesuit High School soccer jersey? Perhaps a Christian Brothers baseball uniform? Who knows.....all I know is that I can't wait to find out the script for Joaquin's life.

Hearing Update: A New Baby

Here is Joaquin right before his surgery last Thursday. In a nutshell, the surgery was a success. The doctor said that she found lots of thick fluid stuck in his ears. She was able to suction it all out and then placed itty bitty ear tubes to help drain any more fluid that might build up. She said that Joaquin might be extra sensitive to the sounds around him and that he would be hearing clearly for the first time in his life. She said we might even need to keep the cotton balls in his ears for awhile to muffle some of the noise around him.

Joaquin recovered beautifully from the anesthesia and spent a good 30 minutes when we got home exploring every single toy and noise maker in his room on the floor. It was amazing to watch. Then.....his brothers arrived and a whole new volume level was experienced and the tears started. Joaquin is crying like he's never cried before. The sounds are startling and new and maybe even a bit scary for him. And even though it breaks my heart to hear him cry, I smile inside knowing it's because he can actually hear everything around him. We are so happy and can't wait to see the progress he will make now as a result of the successful surgery.

We'll keep you posted. GO JOAQUIN!!!

Joaquin on his way to the operating room....they only had pink pajamas.


Recovering from surgery.

Trick or Treat

Happy 1st Halloween Joaquin! Who needs toys when you have candy? Here is our boy playing with his brother's candy after a fun night with friends around the neighborhood. It was a wonderful night.

Thank you to all our faithful readers for "hanging" with us during this 31 for 21 posting challenge. I'm happy to say we were able to complete the challenge and it was an honor and a joy to do so.

We'll be back....just not everyday!

The night before Halloween!

Last night Jen went out with her girlfriends and I was in charge of 3 kids and the daily post. All 3 kids went to bed like usual, no problem. Joaquin did his normal talk routine right before he fell asleep, very cute. So I turned my powerbook on and started thinking about something to write. I was having trouble thinking of something, so I decided to check some of the blogs that Jen follows. I found this post by Jennifer Groneberg from Pinwheels, the author of the book "Road map to Holland", about a beautiful Down Syndrome Awareness bracelet made by the talented Amy Flege, and she was giving it away to a special mom. All you needed to do was post a comment, so I did for Jen. I thought that it would be a great reward for her special effort to post every day of this special month.

This morning when I got to work, I had an email from Jennifer Groneberg telling me that we won the bracelet. I was so thrilled and I am so excited for Jen to have it. I think she deserves it. So Jen, it is coming in the mail. Thanks for being such a special mom and a loving wife!

We were BOOed!

Tonight the boys and I decided to carve the pumpkins in preparation for Halloween on Friday. Joaquin was in his bouncy seat in the kitchen, Mateo was on a stool so he could watch cautiously and my big boy Diego was elbow deep in pumpkin mush trying to save the seeds for his Papa to roast later on for snacks.

We went out to the front porch to see the finished products in their full candle glory and lo and behold there was a little package waiting for the boys with a big BOO sign on it. Someone had anonymously left a very thoughtful gift bag for the boys with instructions on how to keep the BOO going in the neighborhood. The boys were so thrilled and ran around the house shouting we were BOOed, we were BOOed!!! Joaquin was smiling in his chair sensing all the excitement in the house.

I couldn't help but smile too. We are a NORMAL family! I know this might sound silly and crazy but another one of my early fears after learning about Joaquin's diagnosis was that our family might not be fully accepted in the community or that we would feel isolated and alone. I worried that my friendships would change or disappear. I worried that possibly Diego and Mateo's friendships would be affected. I feel ridiculous writing this now but these were some of the terrible fears that just bombarded me very early on.

Thank God these fears were unfounded and honestly, it's been quite the opposite experience. Since learning about Joaquin's diagnosis, I have felt more of a community around us than ever before. I feel the love and support from neighbors, friends, and even strangers in this wonderful online blog community. I look forward to raising my kids in my neighborhood, literally surrounded by great families with huge hearts. I can't wait to watch all the neighborhood kids grow up together and to have Joaquin be someone they all adore and protect. Suddenly the world is a feeling like a kinder, safer, sweeter place for us to live in.

And all it took was a little BOO sign to remind us of this!