Miles is bringing me so much joy these days! Even though he's been acting like a crazy baby, he's just so scrumptious. Why is he a crazy baby you may ask? Because he's been teething and that makes him go through a whole range of emotions in just minutes. He'll be laughing happily with me one minute and then he'll arch his back and yell and scream in anger. I didn't do anything! What are you yelling about? Then he'll drop it all and start drooling all over a ball as he tries to maneuver into his mouth, which is simply impossible since he's got a tiny little mouth!
It's actually pretty funny and though it's frustrating when I'm trying to change his diaper or give him a bath, mostly it makes me laugh.

These days he's also enjoying exploring the world he lives in. Now that he's mobile (ie. he scoots and crawls on his hands, still not using his feet much) the world has opened up. He sees us cooking in the kitchen and he will wiggle worm his way in there from the office. The washing machine is banging and it calls his attention, well, now he can wiggle his way into laundry and see how it works up close and personal. He is getting very interested in wheels and will wiggle his way to the stroller or the office chair or any other piece of furniture that has wheels.

And he's starting to really engage with me more. He just started handing me things. If he's playing with the spoon or a cup or a ball and I'm sitting in front of him, he'll hand it to me! Sure all kids do that sooner or later...but it just started happening to me, so I am delighted and surprised! The other day after one of his therapy sessions, I was sitting behind him and he actually turned all the way around and tried to crawl over to me with his arms out! He wanted me to hold him! Of course, he still can't quite go from sitting to prone position (on his tummy), so he ended up belly flopping instead, but it was so sweet! It was the first time that he actively tried to reach me like that. I felt so wanted and so loved and so happy to know that he gets it. He knows I'm his mama (or maybe he just knows I give him food), but regardless, it was a wonderful feeling. So I am on cloud nine and enjoying all the loveable, huggable, yumminess that is my Miles!

A Life of His Own

Before Miles was born I thought a lot about the fact that our child wouldn't just be ours, but that he belonged to the Universe. That our job was to give him the tools so he could one day go forth and make his own way in life, without us. When he was born and we were told he had Down syndrome one of the thoughts I had was, "Our child will never be able to go forth and have a life of his own". I was scared and knew no better. But really, I was wrong to think that he wouldn't have a life of his own!

Miles already has a whole personal life that we're not a part of! See, he's been in daycare twice a week for almost 3 months now and he is the little Casanova in the motley crew of kids he plays with all day. In the beginning, I was so afraid of leaving him there, would he miss me? would he cry? would they know how to care for him properly? would he get along with the other kids? I second guessed myself so much, but after a couple of days, I realized that being around all those "typical" children was actually really good for his social skills and his play skills. But it never even occurred to me that he'd make friends. And not just that he'd play with the kids there, but that they would look forward to seeing him!

Believe it or not, Miles has two lovely little ladies, Scarlet (who is 2 years old) and Beatrice (a year and a half), who start yelling his name in excitement when he arrives in the morning and who start crying when I pick him up in the afternoon. "Baby Miles!" they for call him. They give him kisses and sing songs with him. They're teaching him how to clap and they practice crawling with him! There's also several boys who all love to play with Baby Miles.

So here he is, less than a year old and already he has a life of his own, that my husband and I are not a part of. Sure, he might have a tough time when he's in middle school or high school, he might even live with us forever, but he will always have his own life. With his own friends. And Scarlet and Beatrice are probably just the first of many many women in his life who will look after him. And for that, I say he is mighty lucky!

The Anonymous Comment

I read something today that made me so angry I wanted to hurl! I stopped breathing and felt my heart pounding on my chest.

What I read was a comment that an Anonymous person made on someone else's blog. That blog is written by a mother of two beautiful girls, one who has Down syndrome. The comment this Anonymous person left was the most negative, offensive and hateful thing I have ever read. Just thinking about it again makes my skin crawl.

The gist of the comment went something like this:

"Your baby is not beautiful and perfect. You had a retard baby and in ancient times they would have thrown it off a cliff. You aren't self less for having this baby but selfish for not getting tested before hand. This baby will drain our resources and potentially breed, creating more bad genes in the human species. All you want is attention for having this retard baby and your husband probably just wants to kill himself."

So...okay. WTF?! My first reaction was intense hatred back! How could someone say such horrible things? Is it possible that people like this still exist in our society? And one day Miles might come in contact with people like this? How am I ever going to protect him from that?

I'm not. I can't. All I can do is continue to let him be who he is and allow him to teach others to open their hearts to him. If they choose to.

So I freaked out.....and then I took a deep breath and then another and another. And then I thought about all the horrible events in our history that have stemmed from hateful people. Slavery, The Holocaust and Sept. 11 come to mind. What about all the people who still to this day commit atrocities which they see just, for one reason or another? They exist, they are out there and they like to be heard. And although the Mama Bear in me would like to fight back, insult and hurt those kinds of people, the humanist in me says, "Fight them with Love."
I know it sounds cheesy, but I also know it's true.

Miles is a bundle of joy and love. And if one does not see it, then I think it's because they are very afraid of what's inside themselves. I believe Miles, and other people with Special Needs and who are "different", hold up a mirror to us and make us see who we really are. That Anonymous person must really hate himself to write such horrible things. The fact that a baby with Down syndrome can make him/her feel such disdain means to me that this person lives their life feeling inadequate and fearful all the time. I mean, to put up such a wall of hatred, you kind have to be lacking in Love completely, and that's actually really sad.

After thinking about it some more, I felt very sad for this Anonymous person and I sent him some love. Yes, it's silly, but maybe it will work. I would much rather kill someone with my Love than continue the cycle of hatred. Because I believe that we are all connected and what is in one person surely exists in another. We all have the capacity to love and hate in the same way, it's just a matter of circumstances and how we choose to react to them. Well, I choose to turn something negative into something positive.

We are all the same after all. To truly accept others, we need to accept ourselves. And from what that Anonymous person wrote, it seems to me like he/she doesn't love and accept himself at all!

Well, I hope to teach Miles to love and accept himself for who he is, no matter what people say and do . I am aware that there are many mean spirited people out there and they will hurt my child at one point or another, just like they have already hurt me. But I will not let them break his spirit, for his joy and love is here to spread!

Miles Inches Forward!!

Yep, that's right!! You heard it here first! After many months of physical therapy and lots of practice, Miles is finally inching forward. In fact, in just three days he has gone from barely moving his legs to help himself forward, to actively pushing his legs to make a big movement. He even gets up on all fours and rocks back and forth in position to crawl. It is so incredibly exciting and fulfilling to see him reach this milestone! And he is so happy that he can finally get to the toys he wants! We call him the Snaggletooth Wiggleworm right now because he's got two sharp little snaggleteeth and he wiggles his way around the floor like a little worm. It's adorable and thrilling and I am the proudest mom on the block!!!

Abue

Abue left. That's my mom...Miles' Abuela. She was visiting for the past two weeks and Miles loved hanging with her. The day she arrived he was a little weary. He didn't remember her even though they "Skype" all the time and he cried when she went in for a kiss. But within an hour, he was all smiles for Abue.

They bonded in the mornings, when she would wake up and play with him, give him his breakfast and put him down for his first nap. And I got to sleep a little longer. One morning I caught her rocking and singing to him in the glider. It was so sweet. At night she bathed him and changed him into his PJ's and took care of him so Zach and I could go out. And all she wanted to do was be with him. The two of them talked and sang songs and played and laughed. By the end of her stay he would reach his arms out to go to her. It made me feel all warm and fuzzy inside...it also made me sad that my mom isn't closer to me. She has been a mountain of love and support for us since Miles was born. And she has adored him since Day 1. Miles and I are very lucky to have such a giving Mama and Abue!!

Sleep....

Miles has been a pretty good sleeper since Day 1, but that doesn't mean I am not without sleep! He usually falls asleep around 7:30pm and wakes up around 5 or 5:30am. So he sleeps a good 10 hour stretch...not bad. Except, I don't sleep ten hours. Try as I might, it is nearly impossible for me to go to bed before 11pm. Which means I end up getting between 5 and 6 hours of sleep on average. That might be okay for some people, it sucks for me! I love sleep. I used to sleep 9 hours a night before. And nap during the day when I could. So I still feel completely tired most of the time.

And recently, Miles has decided to wake up at 4am, maybe 4:30 and not go back to sleep.
So, we've decided to to train him to sleep until 6am. It's only been two nights and he's done okay so far. We'll see how it goes tonight. Zach is on Miles duty, so if he wakes up anytime before 6am, he will be there to soothe him, but he gets no food. No sir! Breakfast starts at 6am or later.

So what am I doing up writing? I've got to pump and get to bed. Agh!!

Reaching Milestones

I watched Toy Story 3 the other day and had such a wonderful time. Those guys are amazing storytellers. I laughed and cried and thought about Miles throughout the movie. I look forward to the day when Miles is walking, talking and playing with his toys, making up imaginary worlds for them. I can’t wait to bring him to one of these movies and to watch them at home. It will be so fun to see the joy in his face and hear his laughter as he roots along for his favorite characters; once he can get the jokes and understands what’s going on in the story.
But…will that ever happen?
I have to believe it will.
Still, I have my doubts.

Miles is already a joker. He’s got a sense of humor and he likes to mess with us. He’s also a talker. He can babble on for hours to himself and to us when he tries to communicate. And it isn’t all babble. He does say “mama” and “dada”. And although I think he knows who mama and dada are, he also uses those words to refer to other things, like his toys or food or “no more” or “leave me alone!”
He’s got quite a personality already. And according to his Occupational Therapist, he is doing very well. As she put it, “his motor skills might be lagging but cognitively, he is very aware. We can help his motor skills catch up, but we wouldn’t be able to do much about his cognition.”

So I have faith that he will be able to understand the jokes and get what’s going on when he watches a movie. But that doesn’t mean I don’t feel completely hopeless at times.

In fact, last week I was feeling really down about it. It seemed to me that Miles hadn’t made any real forward movement in a while and it was depressing me. I couldn’t see any of the positive things he’d done, just the fact that he still isn’t crawling. Or that he can’t go from his belly to sitting or that he makes no effort to pull himself up on furniture. You know, the things that most kids his age are doing. He still won’t hold a bottle by himself. He still doesn’t have enough control over his fingers to take small objects, like a cheerio, and feed himself.

Then we had a feeding session with his O.T. where I basically felt like everything I’d been doing with him was wrong. I should be feeding him more solid foods so he can work out his tongue more. I don’t need to worry yet about him feeding himself, but about making sure his tongue gets stronger. I have to use special cups and spoons and stabilize him more when he’s sitting on his high chair and bla bla bla!!!

I feel guilty when I’m not working him out constantly: whether it be practicing his balance, his feeding, strengthening his lower body, stimulating him with music, rhymes, and other games. I mean, it’s freaking overwhelming at times and last week it was too much. Meanwhile I couldn’t help but look at photos and videos of friends’ babies reaching these milestones so effortlessly. As happy as I am for them, it just kept reminding me of what I don’t have….which is now really just an idea, a dream almost.

What I have is Miles. Mr. Smiles. The happiest, funniest and cutest baby I know. The warmest, sweetest and most honest little being around. I am more dedicated to him than I’ve been to anything else in my life and it’s not without its rewards! Miles is the best reward of them all. I really just need to have patience and allow him to reach his potential on his own time. And it’s not that hard to do since he makes everything more fun to experience. But being the human that I am, makes it impossible for me to remain positive at all times.

As with everything, the feelings passed and I feel a millions times better this week.

We took Miles swimming this weekend and he kicked and paddled like a fish. He loves swimming!! I did start him on more solid foods and he’s able to work his tongue around them before swallowing. He turned the pages on one of his books all by himself and he played peekaboo with me, laughing heartily when I put a sheet over his head.

He is reaching his milestones and he’ll continue reaching them little by little, when he is good and ready. My job is to continue loving and guiding him without beating myself up for not doing more. I’m only human after all!