Giving Thanks

I have much to be Thankful for and I am. Miles is my light and my joy and I thank my lucky stars that he came into my life. One year ago I was in such a different place. I was still quite depressed and in shock. I was trying to understand why this happened to me. Why did I have a baby with Down syndrome? I thought that if I could just figure out why this happened to me, that everything would be okay. I just needed an answer. Well, in the last year, I have discovered why this happened to me and there isn't just one reason. There are many reasons and the reasons will change throughout my life depending on where I am and what I'm going through.

I don't know why Miles was born with Down syndrome, but I suspect it has something to do with his own journey in life. He is in my life because there is much for me to discover throughout our journey together. A year ago the thought of the future with my baby with Down syndrome brought me tears, I am now excited for our life together and discovering all the wonderful things that connect us. Every single day I love him more and more. I can't believe how much my view of life has changed in such a short time.

I am also incredibly thankful for my loving, supportive, funny, helpful, and awesome husband. This journey would not be fun without him. He calms me down and lifts me up when I need it. Who knew when we met 12 years ago that we would end up married with a kid in California! I had no idea, I just kept hanging out with him because he made me laugh. And he still does!

And of course, the rest of my family and friends who are always there when I need them. I am thankful to all of them in my life!

Right now, I am especially thankful for having my mom, sister and niece in town! How fun for the cousins to be together and for all of us to bond. Good times.

Updates

So much has been going on in the last couple of weeks that I just haven't had the time to write. But I've wanted to!

We did our first Buddy Walk for the Down Syndrome Association of LA and our team, Team Smiles, came in second place for amount of monies raised! The overwhelming support from all of you, our friends and family, was just amazing. And our team grew from the original 3 to 18 people!! Thanks to those of you who made it out to walk with us!


I was so nervous about the Buddy Walk and how I would feel being surrounded by so many people with Down syndrome, but it turned out great! Instead of feeling sad or scared about Miles' future and our future together, I actually felt pretty serene. Seeing all those families with their kids with Down syndrome, some young and some old, was beautiful. Everyone there was loving and supporting and their enthusiasm for our kids was exciting. So although I had certain moments of feeling like I was in someone else's surreal life, I was mostly grounded and present in my own life. And that felt good.

There have been many "firsts" for Miles in the last few weeks. He went on his first pony ride, which both scared and excited him, he starting waving hello and giving high-fives! And as I said in a last post, he also started holding his own bottle and finger feeding. It's amazing how many new things are going on with him!

Our next big hurdles with Miles are walking and speaking. His OT and PT are really working on his balance, weight shifting and strength, getting him ready for walking. He shows signs of wanting to walk, he is pulling himself up on chairs, climbing over obstacles (like my legs!) and standing up in his crib. But he still hasn't developed the core strength and lower body strength needed to sustain himself upright for a while. He also doesn't have the weight shifting down, which is an integral part of walking. So we are practicing standing, crouching, kneeling and holding himself up. To do that we just have to entertain him with some kind of toy. As long as he is focused on something fun, he doesn't think about the fact that he's standing and he can hold it for over 5 minutes! It's pretty exciting to see.

Then there is speech. In a couple of months, Miles will be evaluated by a speech therapist and we'll have a better idea of where he's at and whether he will begin speech therapy now or later. I can see him trying to communicate with us and starting to get frustrated when we can't understand him. He babbles a good amount, though not as much as typical kids. It is the quality of his babbling that hasn't improved so much. Now that my 1 year old niece is in town I can hear the difference in the type of babbling. It's almost like she has a larger "vocabulary" of sounds than he does. That's not to say he doesn't have any new sounds, but you know, as with everything it's just a little slower. So I am looking forward to his speech evaluation and starting him on that track. I do think that once he can talk, he will not stop cause my Little Man seems to have much to say!

The Good and The Bad

I'm feeling excited yet nervous about the Down Syndrome Association of LA's Buddy Walk this weekend. I'm excited to go and represent my son and our family and connect with other families like ours. We have raised way more money that I ever expected, so much so that our team, Team Smiles, is ranked #2 at the moment! I'm happy about that, but I'm nervous because at the same time being a part of the Buddy Walk and being with so many other people with Down syndrome can be quite emotional for me. We didn't do the Budd Walk last year because we just didn't feel ready. Miles was only 2 months old and we were still emotional broken. So this will be our first time really immersing ourselves in this world and it's already bringing up quite a few emotions for me.

I also looked at photos and information for some of the other teams and they are very well prepared with team shirts and banners and such and we've done nothing. I planned on getting baseball caps with a Team Smiles logo, but when I looked into it, printing just 10 was too much money. And up until a couple of days ago, we only had about 6 team members anyway, so it seemed like we would be pretty small. I honestly though this would be such a small thing for us, that I didn't put much attention into it other than raising money. Which we did.

I hope it goes well and that our team members do show up and that we all have a nice time. I feel like I'll need the emotional support!

Beyond that, I am very happy to say that Miles has reached a big milestone: he's finger feeding!! After months of practicing, he can now grab the little cheerios with his pincers and put them in his mouth! This just started about a week ago and since I'm not used to it, nor was I prepared for it, I don't really know what else to give him so he can feed himself. I give him the cheerios and the goldfish things and scrambled eggs. But he still only has two teeth and doesn't chew particularly well, so I don't want to give him too many things that he could choke on. I have had to do the Heimlich on him twice and it was not fun!

Miles is also holding the bottle by himself and can drink most of it on his own. He still can't quite tilt his head back and hold his balance, but he tries! And he is also starting to stand up on his crib and be curious enough to try to pull himself up on the couch. So many little milestones are starting to emerge at the same time, but I have to remember that there might still be a long while before he can actually walk or fully feed himself.



And although Miles is doing incredibly well in those areas, he is nowhere near speaking yet. He vocalizes and makes lots of sounds, including "mama", but I don't think he grasps what mama is or that I am his mama. He seems to know his name about 50% of the time and with gestures, he seems to understand simple commands. But not with the words alone. It amazes me to no end when I see other kids his age understand what a "horn" or "bubbles" are and even say the words. How does that happen? How do their little brains connect that so fast?
Do other parents speak to their kids much more than we do? Am I just confusing Miles because I speak to him in Spanish and nobody else does? I mean, I know it will delay his speach more than it already is, but will it also delay his understanding of things?
No matter, I have to stick with it and believe that Miles will eventually catch up, just as he is doing right now with his fine and gross motor skills.

And on another note....I was feeling kind of down a couple of days ago and I went on a rant about people and how they make me feel when they are trying to be nice. I feel bad that I wrote that, but it's how I was feeling that day and have felt at times. I have lots of ups and downs even if generally I am very content. Deep down inside, the little things do affect me. And I suppose this is all just part of my therapy. Thanks for understanding.

Rant #1

Okay, I have to rant just a tiny bit because that's the mood I'm in.

Dear friends and family, sometimes when you ask how Miles is doing, I say he's great. Because he is doing great! He's finger feeding and finally learning to use his bottle and he's getting into the kitchen cabinets like most kids his age. But just because he's doing great, it doesn't mean I'm doing great. It also doesn't mean that he's doing perfect or that he's reached all the goals the PT and OT have set out for him. It doesn't mean he's all caught up with kids his age. It means that he is reaching a lot of milestones and he's happy and healthy and making progress. So if I say he's doing great but then I complain about something he's not doing, don't tell me "he's going to be fine". I know that!! Of course I know he's going to be fine. I'm his mom and I can see that he is going to be fine, I know it in my bones, that doesn't mean I need reassurance from someone who doesn't know what I'm going through.

I know it all comes from a well meaning place and that's why I just nod and smile and say "I know, I know". But that might not be how I'm feeling and I actually just want someone to hear me out and say, "oh wow", "interesting", "I didn't know" or something like that.
Sometimes I just want to be listened to, I don't want to get feedback or opinions. I don't want to see him compared to other "typical" kids and I don't want to hear that all kids have their own problems and every parent worries. I know that. I completely understand that and I care about your children and your worries, but I don't know what you're going through and you don't know what I'm going through. That's all I'm saying.

I don't want pity or soft voices of sadness when referring to Miles or his "condition" as some people call it. It's an extra chromosome, it's a syndrome: Down syndrome, not a condition. And it is quite all right to talk about it. Ask me questions, tell me what you know or don't know or what you've heard or are wondering about it. I want to discuss it all because it's not taboo. It's life, it's very common in fact, and it's important for other people to understand DS better. And I like to talk!

Oh man, this all sounds so mean and rude, and I do not want to hurt well meaning people's feelings, but I just had to put it out there.
I'm not looking for pity, but a certain amount of empathy and understanding.

Not the Day I Planned

Oh man, today is one of those days where things aren't going as planned and I feel cooped up and annoyed, but it's really not that bad I need to just be patient and go with the flow but I'm having a hard time doing it! Phew!

Today was supposed to be a fun, productive day starting out with therapy, and hanging out with some friends and with our cousins who are in town from Texas. But Miles woke up with a cold. He's got the watery eyes, the snot dripping down, the sneezing and coughing, the red, bumpy cheeks from the heat that won't abate, and he's acting like a little wild man! I had to cancel everything and instead I'm stuck at home with a sick baby who doesn't want to nap. I feel terrible for him, but I'm also feeling frustrated for me.

With all of Miles' therapies and classes and all of my jobs, auditions and running around, it is hard to find time for us to just hang out and do fun things. It's hard to find the time to get out of the house and go to the park, the play gym, the pool, visit friends, go to the museum...just do the things that I always thought I'd have so much time for. I'm constantly making and breaking plans with friends because I usually only have one free afternoon a week and something inevitably comes up. Like today.

But the most frustrating part is that he doesn't want to sleep! He is sick and tired, but he will not fall asleep in his crib. Sure if I took him for stroll he would conk out, but it's 90 degrees outside. I ain't taking a walk! Should I just put him in the car and go for a ride? I might have to, but the thought of driving around aimlessly for 2 hours wasting gas is not fun! So I'm sitting here writing while he's in his room banging a toy in his crib and wailing like a cat every now and then. That's his thing, he'll make these odd sounds where he is not crying or yelling, but sort of wailing from deep inside. They're loud sounds that sometimes turn into a "conversation" of sorts. Honestly, I've never heard another baby make these sounds....they seem uniquely his.

But wait....all is quiet. Is he asleep? I don't have a video monitor so I can't tell for sure and I'm afraid if I peek in there he'll wake up. So I'll wait.
Oh...nope, not asleep. Just quiet for a moment.

I feel like I can't even do anything productive at this time because I don't want to start anything that I might have to leave half done. I'm just wasting time and writing a pretty boring blog entry because I can't even think straight!!!

But wait....is he really asleep now? Could it be? I think so.
Woo-hoo, what to do with my free time? Cook, clean, read, shower, exercise? Meditate. I think I need to meditate because I'm still not in a good head space. Ooooooommmmmm.