It's November!

So, when I started this blog, I thought I'd be chronicling all the emotions and struggles of raising a child with DS, but, so far, I don't have any DS related struggles, so this is mainly just a blog of me and all the craziness of a typical mother! Michael is so precious, healthy, and issue-free (knock on wood!), that I seem to mainly focus on the struggles with Auggy.
As time goes by and his life gets more complicated (where will he go to school, will I have to fight for inclusion, will he develop health problems, will people treat him kindly...), I'm sure there will be more to write about. But, I've also realized that I just don't want to focus on the DS so much. I don't think it's fair to Michael or Auggy to always associate that first. I belong to all these groups on line and so many of these moms are so caught up in the DS situation...I don't want that for my family! Of course I will fight for Michael and his rights to the death, but, I don't want it to be all-consuming!
I see people do that with their typical kids, too. Whether its about their grades or a sport they're in, or...whatever. I just want my kids to know that, above and beyond anything: they are loved. They can make their own life choices (gulp! It'll be hard to let them make some of them!), and I will always be there to love them and help them...no matter what. I mean, there are so many styles of parenting, so many ways to discipline (or not!), to steer your kids in one way or another, how can we know if we're doing the right thing? How do we know we're not dooming our kids to a life of therapy and resentment? If they watch too much tv, or play too many video games, or they say bad words, or they eat too much junk food, or they have imaginary friends, or they prefer to be alone, or they are a hitter, or...how much is our fault and how much will it affect their future?
The pressure is insurmountable, and I really don't believe there is a "right" way to parent. I believe the most important thing is that they know that their mom and dad love them in spite of anything that may come. At least that's my current approach. Who knows what I'll be saying in a year or two!
Let's see, what else is new? Auggy turned 4! He had a smashing good birthday! Lots of friends and family. He had a blast. Not to mention all the Halloween fun. He was the cutest pirate you ever saw!

And Michael was an adorable pumpkin, but he slept through all the trick-or-treating! Next year will be even more fun, he'll be 2, and walking. He'll love it!
I've been in school for 2 months now...which is crazy! It's going by so fast!!! I love it, though, and the boys have adjusted amazingly. They miss me, for sure, but they've really been enjoying all the time with their dad! It's hard to believe that in just a few more months, I'll be done and looking for a job! Exciting and terrifying at the same time.
In the mean time, I will just keep loving my kids and trying not to ruin their lives!

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.

Adjustments

I can't believe it's been so long since my last post! Boy, have we been busy! It's nice to be busy, but it's starting to feel like there aren't enough hours in the day! I have discovered that I don't need as much sleep as I used to. I've been getting by on about 5 hours and a lot of coffee!
I have completed my first week of massage school! I was so worried about Michael and being gone for so long (5 hours), but he has been amazing! Not fussy or seeming overly upset. And he is so adorable when I come home! Just sooo happy to see mommy! Auggy has definitely been struggling with it. He gets really clingy in the morning, and he said he doesn't want to go to his school, he wants to come with me to mine. It makes me sad to see him missing me so much! But, I know once I'm gone, he has fun with daddy. I was surprised at how much homework there is for this school! I have been struggling to get it and all the reading done! Hence, the less sleep. Staying up late to get it done after the kids go to bed.
I was never a very good student in the past. I always got good grades because I could absorb the information easily, and never really developed good studying habits. I am determined to make a better effort this time around. I will do all the reading, no matter how boring the text! I will study my notes and restudy them! I must! There is so much to learn...our bodies are complicated!
Dave took Michael to his baby group last week, and will be doing it every week until I finish school. He didn't say much about it, but I think it'll be good to see how Michael is with other kids, and just to get to be more involved with his development.
Michael is just doing so amazing! He's really trying to communicate with us. He points at stuff and blurts out a babble, but it seems like he's really trying to SAY something about that thing! He also has been signing for "all done" when eating, too! And, he can point to my nose when asked! And he can do most of the motions to the itsy bitsy spider.
After he was born, I joined all these on line groups for DS. Babycenter group, 3 or 4 FB groups, plus the ones we go to in person. I find that I don't really like the on line ones so much. Maybe it's selfishsof me, but I don't like reading about all the problems everyone has with their magic babes. It's not that I don't care about these people and what they are going through...I just don't want to think about what could potentially happen with Michael. I like to take things day by day and enjoy him as he is, not worry about what could be. Does that make sense? I mean, it's great there is so much support out there for the families who have a lot of issues, and I hope for the best for them, but deep inside of me, I am hoping so strongly that we don't ever have to deal with those issues ourselves! I just want my Michael to be the sweet, happy, healthy boy he is, and that's it! But, then I think, what if problems pop up down the road and I don't deserve the support from these people because I'm not putting in my time now?
I also wonder about the therapists he has right now, as well as the ones he'll get after he turns 3. Are they good ones? Dave asked me the other day if I liked them and why. I thought about it, and I realized that I like them, but I also have nothing to compare them to. How do I know if they are doing the best for Michael? I've never had to compare therapists before. How do you know if yours is good or not? His PT seems pretty good, she works him hard and shows me things I can do to help him progress...and he IS progressing very well! His educator, though, I don't know...she's nice, but how can you tell if she's doing good or not? All they do is sing songs and play. What  else can you do as a baby? She signs to him, too, when singing and asking questions. So, that's good...?
Is it possible to observe other counties and see what their therapists do? If it turns out another county nearby has better services, should we move? Is that fair to Auggy when he is making friends here and is happy? What about schools for Michael? It's really hard to find stuff out about inclusion and what to expect down the road. We want the best opportunities for Michael. But also for Auggy, so should we move for the better of one child vs the other? Or do we try to find a middle ground for the both of them?
Obviously, we have a couple years before it matters, but, time flies, and if I wait too long, the time will be here, and we won't have planned for it! Once I finish school, we can live anywhere. But, I don't want to move! I finally have some friends of my own, and I love Monterey! Hopefully, we can just find everything we need here!
My mom was visiting last week. It's always fun to have people visit, especially when they can really see the changes in the boys since they don't see them every day! There was a picture of Michael laying around from January, and she asked who it was! He has changed so much since then, looks completely different! Not to mention he is so mobile and, just bigger. He has his own little personality! He is super funny and sweet, but not afraid to stand up for himself!  Here's a little video of his funny side, playing pass back with daddy and a pack of wipes:

Ramblings redux

Ok, now that some of my psychosis has worn off, I will try again! What psychosis? I started my period after 23 months of not having it. TMI? Maybe, but damn! I forgot how much they suck! I mean, I guess I'm happy to know I'm not in early menopause, but...that's about it. Otherwise, it just blows! I've been on an emotional roller coaster for the last week! Still a little rocky, but I can somewhat discern crazy from reality. And, really, you should feel sorry for my family! They should get a week long vacation every month! Or, free therapy sessions for the trauma I may have caused! Maybe I'm being a little dramatic, but...maybe not! I am, after all, rewriting this blog, so what does that tell ya?
Anywho, Auggy has been back in preschool for a couple weeks now, and it's been pretty great! We moved him to a morning, 5 days a week class, so he is definitely tired! But, he loves it. He's making some new friends, as am I. And Michael. Well, I'm pretty sure he thinks its his school, too. He loves crawling around, playing with the toys, the big kids, the mommies. He also loves circle time and the songs and the storybook. It is so good for him! Plus, he still goes to his baby group every week and has play time and circle time, too. And, we scaled back his home visits because he is kicking so much butt! I am so proud of that little bug! He will be walking soon, I'm sure of it!
One thing I love about Auggy's preschool is getting to see other parenting styles. I am so amazed at how some of the moms (and dads) are so patient with their kids, and get right down into it and play with them like they're a kid, too. I'd like to think if I didn't have Michael with me, I would, too...? But, really, I am jealous of the positive style that so many have. I need their advice! I mean, I really try positive discipline. We give Auggy tickets for different behavioral things (they are worth 10 cents and he's already bought 2 things with his earnings!), I give him choices when I need him to do something or to change a bad behavior, I give him a limit and a countdown to change his behavior before the limit is put into place. But, when you have a child that doesn't care what the consequence is, what do you do? He would rather lose a privilege than change his behavior! So, I don't give in, but, inevitably, I lose my patience! Probably once a day or every other day, I have a parenting fail. Lose my patience and yell, (even when I know it's ineffective, I do it anyway...duh!) and then I feel like crap for A. blowing it as a parent and B. hurting Auggy's feelings.
I have to figure it out, though, by the time Michael is old enough to be acting like this, because he will present a whole other challenge, and he certainly won't understand me losing my cool! I look at his sweet face now, and think, he could never be difficult! But, he will. He is a boy and he will become defiant. He already is getting to be a little stubborn! Protesting getting in the car seat or high chair. He thinks its funny to stiffen his legs and not sit down. I think it's cute that he thinks its so funny, but, at the same time I am amazed he has figured that out! Sometimes, I just think he doesn't seem so delayed! But, he doesn't talk yet, or walk yet, and he is still little, more babyish than toddlerish. But, I don't mind. I love my little cuddle bug!
Speaking of cuddles, ask anyone, Michael is THE BEST hugger I've ever met, in a baby! He actually wraps his arms around you and squeezes tight! Sometimes, he'll even do a shoulder pat! So cute! Sometimes when I'm feeling stressed out, or frazzled, I'll get one of those special Michael Bug squeezes, and it'll all melt away, leaving behind nothing but warmth!
People genuinely adore Michael. People are attracted to him, dote on him, think he's the cutest baby they've ever seen. I tend to agree! I just hope the positive vibes continue as he passes out of babyhood into another world more filled with judgement. I know there will be people who do judge him, but, I hope I can protect him from them, let him only feel the love. I want that for Auggy, too. I don't want him to see people as better, or worse, than he is. I want him to see differences, for sure, because that's what makes the world so interesting, is our differences. But, I want him to celebrate those differences, not separate himself from them. I want him to be open to everyone, so Michael can feel that openness, too. I have to watch myself around Auggy because he is so observant. He will know if I am judging. I don't want to judge. When I find myself doing it, I try to take myself out of the situation, and try to imagine that person as themself only and not the thing that I am seeing and judging. Everyone is special and unique, and can offer something, I just have to see it. The world does not revolve around me and my...whatever. I want Auggy to see that, too. I want Michael to see that, too. If we can remove ourselves from the drama of the moment, maybe then we can really see what's there. And if we can do that, then maybe we will be less likely to pass judgement on others, and just be open to all people and all situations. And if we can do that, our lives will be richer and fuller for it.
That is my personal goal right now. Try to be a better example for my boys. Try to be more patient, understanding, open.
Here are a couple cute pics from last week

Bath time buddies

 

Michael is starting to love the beach!

13 months!

Today, Michael is 13 months old! It is so hard to believe. Time has just flown by, but at the same time, it feels like he's always been here. In our lives. It's funny to think Auggy won't remember life without Michael.
People are drawn to Michael. Strangers. He has a special magnetism that really draws people in. He's cute, for sure, but there's something else, in his overall being that just sucks you in. Everywhere we go, people are enamored by him. One of  Auggy's school mommies said it: it's like you just want to be in his world! He truly is special!
It's clear to me now, that people can see he has DS. I've had strangers talk to me about it, just casual, as if its already established by everyone that he has it. And, I've realized it doesn't bother me. I wasn't sure how I was going to feel when it came up, but, the thing of it is... I don't care what other people think. My Michael is so perfect to me, that anyone who doesn't agree can take a hike! What amazes me, though, is that people are so warm and loving. I guess I am the ignorant one, who thought people would reject Michael when they found out he was different. Maybe I am the last one to catch on: DS is OK!
And the world of people that has opened up to me since his birth, well, I am so grateful for that, too! I adore all his little friends in his baby groups! Babies of different special needs, as well as their families. People I would have never met, and now, they are part of our family, too. I see their strength and it gives me strength.
I just returned to school for the first time in 15 years! I am going to become a massage therapist! I had my first class, which also means I spent my first day apart from Michael. It went pretty good! I was really nervous about it. About the new adventure, but, mostly about being separate from Michael for so long. I saw him during my break for lunch so I could nurse him, thankfully! He seemed to miss me, but he wasn't distraught, so, I feel good about it! I'm excited about massage, too, because it could prove to be beneficial to some health problems he may develop over time. And, who knows? Maybe that's the path I'll take during school, to help others with disabilities. I haven't decided yet.

Anyway, life is just flying by, and things are pretty good!

Food

Now that Michael is over a year old, we begin the process of really opening him up to different foods. You would think I would be excited about it! After all, I was a chef in my previous pre-child life, shouldn't I be thrilled about developing my child's palate? The truth is, I am nervous. And a bit lazy. He is so picky about texture, still wanting a total purée, do I really want to go to the trouble to make something special, filled with animal protein and yummy broth, only to have him hate it? I have to snap out of it. I know. Forget about Auggy eating vegetables! Sometimes if I'm really sneaky, I can get him to eat a little.
I need to get us all on a better eating track, though! Michael and kids like him are so prone to obesity and diabetes, I want him, and us, to lead healthy lives! I would love to have a gluten free, sugar free household. There's lots of research to be done! I need to weed through all the fads and find the real nutritional info. I don't buy into the "organic" stuff so much anymore, but I do want to buy as much whole food as possible and make everything at home. I try to do that now, with the exception of bread and mayo, I pretty much do.
I remember when Auggy was born, we said we would never let him eat so many things! Reality set in and we've had to make some compromises. But, I have held fast to him not eating at places like Macdonalds, though. And everyone in the family knows they will be disowned if they take him, too!
Is it terrible that I compare myself to other moms? Like, when a mom that seems to have it all together, admits that she takes her kid to Macdonalds or let's them watch extra tv when she needs to get stuff done...I feel better about myself? I guess I feel guilty sometimes for some of the shortcuts I take. Am I just making excuses for myself when I let Auggy watch tv, or get pizza, or buy pre made enchilada sauce? Or am I just like every other mom, who sometimes just needs a break? If I'm being honest, I guess it's a little of both. But, seriously, how many games of Candyland or Superwhy can a mom play before she needs to do something "adult?" Or how many games of hide and seek?
Auggy started back to preschool last week, and Michael is back in his therapy sessions, too. We are super busy! But, I have a whole month of Aug in school before I start school myself, so I intend to enjoy these mornings I have to myself! Summer was fun and it flew by, but it is nice to be back on a busy schedule.
And Michael impressed everyone he hadn't seen for the last month with how much he's developed! He is cruising now, officially. I am confident he will be walking before Auggy turns 4, in 2 1/2 months! So proud of both my boys, but especially my little bug! He's rocking everyone's world!

Auggy's first day back at preschool

A future in computers?

Happy boy!  He's so excited to be standing!