Buddy walk

Last weekend was the annual Bay Area Buddy Walk, which is a big fundraiser event for Down Syndrome. I had been looking forward to it so much since last year! We were unable to go last year because Michael was still in the hospital recovering from his heart surgery. I still can't believe it's been a year! In fact, we came home one year ago, today.
So, the Buddy Walk. I had no idea what to expect. I was nervous and excited to see all the different ages of people who have DS. Was it going to be inspiring? Depressing? Overwhelming? Well, it certainly wasn't depressing! We got there late, of course--I'll be late for my own funeral! As we were walking over, there was a huge crowd of people doing Zumba. I found out from a friend that the woman leading it was the first ever certified Zumba instructor with DS! Awesome! And there were a lot of people! The first thing Auggy wanted to do was the bounce house, but I told him we needed to find our group and get settled first. He was surprisingly complicit! By the time we got organized, it was time to do the walk. It was just a short one, I don't think it was even a mile. It was fun to see all the different teams, their bling, the fun they were having. Once we got back, it was less fun. There were so many booths set up with information, plus there were self advocates (people with DS who advocate for themselves and others), etc, but I couldn't check them out because I had to keep an eye on Auggy, and make sure he was having fun! Next year, Dave is coming!!! We had a picnic lunch and hung out with our team. Magic Babies was one of the biggest teams representing (oh yeah!), and we were also the biggest fundraiser!
My goal for Michael was to have him walking by Auggy's birthday, which is in 10 days. He is so close! I have been feeling guilty because he hasn't been getting to all of his therapy appointments lately. With my school so intense the last month, I haven't been able to stay on top of it as well. I don't think he's suffering for it, he's still advancing and doing fantastic, it's more just a personal guilt. Mom's guilt. I mean, he could take a step any day now, you can see he wants to, he's still just not sure!
He has been saying a few words, though! He says "up," "out," and "that." And he signs for the "itsy bitsy spider" and kind of "twinkle twinkle little star," although it looks a lot like the spider one!
I love the relationship that is growing between him and Auggy. They truly are brothers! Auggy loves playing with him...usually. He teases him, tries to steamroll him, tickle him. He also loves to roll a ball for him, and then they race to get it. Michael thinks its hilarious! Also, Michael likes to torture Auggy, too! He'll whack him repeatedly, or try to eat his face. A little payback! It's very cute. But, also there are moments of sweetness, too, where they give each other hugs and kisses. It melts my heart!
It's my favorite time of year Halloween, leading into Auggy's birthday. This year, Auggy will be a pirate, and Michael a pumpkin. I can hardly wait! And we will have lots of family here to trick or treat with us! Auggy's birthday is going to be a HUGE event! I invited a lot of people, thinking, only a percentage would say yes...well, almost everyone has said yes! Wow! Awesome! I love planning stuff like this, so I am thrilled for the huge turnout! Possibly 50 people...what?! Aug is going to flip!
Life is pretty darn good these days. I've been trying to be more positive, calm, appreciative. When I catch myself getting worked up, I try to bring myself back to the moment, take a real look at what is happening and change it, change myself....think....is this really something to be upset or angry about? 99% of the time, the answer is no. It's been a great adjustment! I feel so much happier and relaxed! I've also just been enjoying myself more. And I am more grateful. Grateful for all that I have, especially my family!

Anniversary

One year ago, today, Michael had his VSD repair surgery!

I can't believe how fast that year has gone by. At the time, it seemed the day itself would never end. I remember feeling numb (thank you Xanax!), but as soon as the nurse took him from my arms to take him into surgery, I felt the immense weight of it. They were taking him and there was this huge risk he may not come back to me. I was terrified! But, his team was incredible and they not only did an amazing job, they also did it an hour faster than they predicted!

Since then, Michael has just continued to amaze us, growing, learning to crawl, sit up, eat puréed foods, signing the itsy bitsy spider, and he even says a few words!

Also, a year ago was the Buddy Walk, which we were unable to attend as we were recovering in hospital. So, this year's Buddy Walk is all the more exciting for me! Our team has raised twice as much money as our goal, and the day itself is going to be so much fun! I can't wait to see all of our Magic Babies and to meet so many new ones! I know, it may be shocking on some levels to see all the spectrums of DS, but, I think it will be encouraging, too. At least, I hope it will be!

Another first for Michael this year, is Halloween! Again, he was recovering last year, so he had to skip it. This year, he will be trick or treating in style as an adorable pumpkin! I can't wait!!!

October is DS awareness month. I think it's ironic that in this month, I have only posted this one time. But, school has been overwhelming and I just haven't had the time! School has been wonderful, though, and so has Dave! He really just stepped right into the morning stuff with ease. And, it's been great for him and the boys to spend so much more time together. I can see the boys' bond growing with their dad and it is a beautiful thing!

I belong to a DS group on Facebook for parents in CA. Sometimes I don't read the posts because they are too overwhelming. One mom just posted she wants to quit the group because she is so irritated by what people are saying on there. I can only imagine what she has been through that she would become so sensitive to other mom's rants on a support group site. Some of the parents on there have multiple diagnoses, multiple health issues, multiple special needs kids. I feel like I have it so easy. I am sure that, down the road, there will be bumps. I will have to advocate for Michael at school, in the medical world, etc...but, right now? He is just a baby. He is nearly 15 months old, doesn't walk, doesn't eat solid, chunky foods that involve chewing. But, there is so much he does do, I don't focus on that. To me, he is just Michael.

I know when other people look at him, they see DS. Do they see it first, or do they see the cute baby first? I don't know, but,I also don't care. I see Michael. I see his DS sometimes, doing certain things, but, mostly I just see him. His sweet personality, his iceberg melting smile, his contagious laugh, his accomplishments. He is special. Not just special needs. Just special.