They Grow So Fast

Ella Bean....as we call her

When I was pregnant with Miles I signed up for one of those websites that gives you a weekly rundown of baby's development in utero.  I used to follow it religiously.  I looked forward to each new week and finding out how many inches baby should be and what organs were developing at the time well so that I would have a very healthy baby.  It was like a little ritual I had.

Once the baby is born, the website continues sending you weekly emails with your baby's progress, like "Your baby is 4 weeks old.  At this point your baby should be starting to....".  When Miles was born I couldn't bare to read those weekly emails.  I was angry at them, angry that they only included milestones and development for a  typically developing child.  It was too painful reading where Miles "would" or "should" be if he didn't have Down syndrome.  I remember even crying once as I read one of those weekly updates.  That's when I took myself off their list.  No need to put myself through that crap!

Well, about three months into my pregnancy with Ella, I decided to sign up for those emails again.  I realized that I hadn't been paying as much attention to this pregnancy and where baby was in the process.  I wanted to give as much love and attention to this pregnancy as I had to my first one with Miles.  I didn't read the emails religiously and I didn't spend as much time visualizing the baby's progress, but when I had the time, I did it.  And it was nice.  Then Ella was born and everything was fine.  She is a typically developing child and I'm having a totally different experience seeing her develop.  In fact, this time it's the reverse; I actually look forward to reading the weekly emails and finding out where a baby her age should be in her development.  And the crazy thing is that she is right on target.  It blows my mind!!  A couple of months ago I read that she should be starting to make sounds and babble.  Like two days later Ella started babbling like crazy.  On another email I read that at these many weeks, she should be really interested in faces and be responding to different facial expressions.  Well Ella had already been doing that for a couple of weeks.

Mama and Ella

She turned five months today, five months!!!  And she's already turning from side to side, grabbing her toes, babbling and making all kinds of fun sounds.  She likes to reach for, kick and swat toys, stick them in her mouth and chew them up.  She loves to laugh and be entertained, she wants to try our food (and she will start eating this week!), she holds herself up so well and loves doing tummy time, she's very social and she's growing like crazy.  Every week, sometimes every day, she does something new.  And I just can't believe my eyes.  This is what our friends experienced with their kids, this is what they talked about when they said, "they're growing so fast".  Miles has obviously grown and development tremendously in his 2 years and 10 months, but it's been painstakingly slow!!  Each milestone has been a lot of hard work and tons of practice so it blows my mind to see how Ella just does things.  We don't have to teach her how to do them, she is figuring it out on her own.  And sometimes it does seem to happen from one day to the next.  I can say now that I get it, my little baby is growing so fast!!  But I am loving it.  I love that I get to have both experiences and that I am learning so much from both.  They are both exciting and amazing and a miracle.  They really are.  It sounds corny, but man, I truly feel blessed to have these two very different but totally related little angels in my life.

Miles & Ella love!

What a Diiference a Day Makes

Happy Family!

Like I wrote in my last post, last week was tough.  Zach and I, both sleep deprived, were getting on each others nerves, the kids were driving us crazy and all of lives' responsibilities were wearing us down.  I was done with my role as a mother and wanted nothing more than to switch for the role of carefree bachelorette!   But since I'm not living in a Hollywood blockbuster, more like an independent film,  I can't switch out my role.  I make do.  So I switched my mentality, did some breathing and talked to Zach.  Wow, what a difference that made!

Sunday was good.  We planned our day better, we all ate better, slept better and were just nicer to each other.   We did our chores and got hang out and visit friends.  We drove all over LA and Ella didn't cry the whole time and Miles didn't throw one tantrum.  What was different?  We were relaxed.  The kids vibe off of our energy so much and if we're stressed, anxious, depressed, angry, they feel it and they stress right along with us....causing us even more stress.  It's a vicious cycle!  So we were more aware of each other and what we needed and met those needs with more ease.  God what a difference a day makes!

And this morning was AMAZING!!  Ella woke up only once last night and slept until 7 this morning!  And Miles, the early riser, woke up at 6:30am and was well rested and happy!!  He ate a big breakfast: cereal, toast and egg.  He played.  We played.  He didn't fight me to change his diaper (that's a miracle!) and he didn't whine about wanting to watch TV.  In fact, he had been such a good boy and I needed to get dressed so I was planning on letting him watch some TV while I got myself and Ella ready for the day.  But I didn't need to because he wanted to play outside instead.  AND the amazing part is that he very clearly communicated that to us.  He signed "open" then pointed at the door and signed "shoes"  In other words:  put on my shoes I want to go outside.  What???!!!  You want to know something even more crazy?  Last night while I was reading him books before bed, he pointed at a book and said, with words not sign language: "Ma, read this one."  My heart stopped for a second while I processed what had just happened.  He didn't say it that clearly, but as my mind scanned what I heard, I knew that was exactly what he said. I mean, shit, he was pointing at the book!!  So I said back to him, "You want me to read this one? Ok, lets read this one."

I was floored, seriously, I would have fallen down if I wasn't sitting. It was AMAZING and it was a glimmer of what will surely come more with time.   Miles is truly trying to communicate and I know that he understands a lot more than he lets on.  He's also a toddler, who listens when he wants to.  But he is way smarter than people think and he is starting to figure it out himself.  If he talks, we listen.

He woke up this morning saying "papi, papi, papi".  And I came in the room and said, "What about me?  What about mami?".  So he started repeating mami.   At night before going to bed I tell him, "Okay, it's time to go to sleep.  I'm going to put you in your crib and you're going to go to sleep and dream with the angels, okay?".  He always nods or says "yes", but I wasn't sure he was understanding me until the other day when he said yes then grabbed his Elmo doll, got off the couch, walked to his crib and waited for me to lift him up. Success!!

Miles is processing so much on a daily basis and sometimes I forget that these are all just growing pains.  We are all going through our own growing pains as we continue on our little journey called life!

Too much!

This past week has been too much.  Just too much!!  I've lost my patience with the kids every single day.  Ella's been sick for two weeks, Miles has been whiny and stubborn all week,  I've had a bunch of work opportunities but none panned out, I've ran around going to meetings and doctors and seeing people, trying to be social.....I don't have the time and I'm tired.  No, I'm exhausted and sleep deprived.  And I want to go back to having some kind of semblance of a normal, fun, easy life but that's impossible at this point!  On Tuesday I thought it was Thursday.  How depressing when I found out it was Tuesday. I just wanted to run away from my life all week and hide out in a movie theater watching every single dumb blockbuster imaginable. 

I am so done with Miles' busy schedule.  I'm tired of running around town taking him to therapies, fighting with him to get in the car and then fighting with him to get out and keep his shoes on.  I'm tired of trying to get Miles to eat something other than brown rice and chicken and this week it was a fight just to get him to eat that!  I'm tired of fighting with him about the TV.  All he wants to do is watch TV and when we don't let him he whines incessantly.  I'm tired of constantly cleaning up after everybody in the house.  I'm tired of cooking.  I'm tired of getting up in the middle of night to feed Ella.  I'm tired of trying to get her to sleep.  I'm tired of constantly cutting her nails.  I'm tired of changing so many diapers for both Miles and Ella.  I'm tired of feeling angry and sad and annoyed.  I'm tired of apologizing to people for why I couldn't call them back.  I'm tired of phone calls.  I'm bummed that I haven't booked a job in a while even though I've been auditioning.  I'm bummed that I never get to read or write anymore.  Agh!  The list could go on and on and on but I think I've made my point.

I need some freedom.  I need a break.  But really I just need a mental shift because the reality is that I'm not getting a break, not a real one anyway.  A few hours here and there are nice, but they're just a band aid. I love my kids and I do love my life, but right now I want to run away from it all for about a month.  I want to sleep and watch movies and TV and read a book and exercise and lounge around.  That's what I want for a whole month.  And you know what the real sad thing is?  I just got back from Hawaii two weeks ago!!!!  I got to go on this amazing vacation with my whole family and go to the beach with the kids and play in the sand and drink and eat and take naps here and there.  But it was still exhausting.  I'm still mom on vacation with the kids which means I'm still on duty.  I want to be fully off duty.  This week, I needed to be off duty.  But that's impossible.  So.....a change in attitude, a mind shift is what I need.  I'll start tonight with some breathing and letting go and maybe, just maybe I can start next week with a smile, an open heart and patience.  Tons and tons of patience!

Different, Not Less

Last night we went to the funeral service of an amazing 12 year old boy named Timothy Borquez, who had Down syndrome.  He died in his sleep a week ago.  It was the saddest yet most heart warming funeral I have been to.  There must have been 500 people there saying their goodbyes to Timmy and supporting his family through their tragic loss.  He and his family are a big part of Club 21, an incredible organization for kids with Down syndrome and their families.  Club 21 has become our main Down syndrome community and support group over the last year and Timmy's death is a huge loss to our community.  But not just to our community, his death is a huge loss to all those who knew him and that was evident by the amount of people present there last night.

Timmy's life was an inspiration to those of us who have younger children with Ds.  When Timmy was born, his parents didn't know if he would ever be able to lead a "normal" life and do simple things like play ball.  Well, the night before he passed away he hit a baseball onto the roof of their house.  He did all the things kids his age did and more because he did it all with a gentle soul, a kind smile and lots of hugs for everyone.  He was exactly how I picture Miles to be at 12 years old: outgoing, gregarious, athletic, compassionate, fun.....

Anybody's death is tragic, but the death of a child is just....well, it's intense.  Ever since I heard the news about Timmy a week ago I haven't stopped thinking about his mother.  What it must have been like to walk into her son's room that morning.  I don't want to go there, it scares me to even think about the loss of my son or daughter, but I can't help it.  I'm a mom.  And I'm the mom of a child with Down syndrome, so Timmy's death has hit home in many ways.  In 1970 the average life expectancy for a person with Down syndrome was 20 years.  Back then it was still accepted for parents to institutionalize their kids with Down syndrome.  There was little to no early intervention or decent health care for for those institutionalized and they weren't cared for or loved the way any human should be.  So they didn't flourish.  How could they?  How could anybody? 

Today people with Down syndrome live an average of 55 years with many of them living into their 60's or 70's, thanks to science and medicine.  But mostly I think it's thanks to the fact that society has started to understand and accept people with Ds a bit more.  Back then, people with Ds were considered "less than", unequal, incapable, unworthy.  In fact, there are still people out there who feel that way today.  Those people have surely never met someone with Down syndrome.  They've never received a loving hug from someone with Ds.   They haven't experienced the sweet laughter and excitement of a child with Ds.  They've never felt the pure love and joy of life that someone with Ds can share.  For if they did, they would understand that people with Down syndrome are not less everyone else.  They are different, not less.  Miles is different, not less.  Timmy was different, not less.  In fact he was  more, for he led his life with true compassion and equality for all.  Now there's someone we should all learn from!

Timothy Borquez, thanks for being an inspiration to so many.  Thanks for sharing your life with us. 
May you Rest In Peace.

We Have Communication!

Miles talks to Ella

The other day Miles asked us for grapes.  He cupped his right hand and made little "clumps" of grapes up his left arm.  That's the sign for grapes.  And he did it so clearly.  Another time he tapped my hand to get my attention and then took his index finger and ran it down his neck.  He was telling me he was thirsty.  And I then I said, "do you want "leche" (while pumping my fist) or "agua" (while taking the sign for letter W up to my chin)? Ladies and gentlemen, we have communication via sign language!!  Miles is now at the point where he wants to communicate so badly that he tries everything, from yelling to pointing, to signing to using the few words he can vocalize (the newest one is "down).  When I say, "Miles lets go take a bath",  he makes the sign for bath and either heads toward the bathroom or protests because he's not done playing.  He signs "brushing teeth" and "cookie" and "elephant" and so many more.  He's also trying to make sounds, like a "quack" for ducks and "vroom" for cars.  His sounds don't really match the actual sounds of what he's trying to imitate, but he is trying and that's what counts here.

Communication is so important to us and we know it will be key for Miles' development and acceptance into the general population. Currently, speech is the area where Miles is most delayed and we are hoping to make as much progress as possible in the next 6 months before his early intervention therapies run out.  Once they do, we will continue to provide him with private speech therapy because we don't want him to fall further behind.  Kids his age are already taking notice of his lack of words.  He is the most social kid in any group, but already I've noticed some of his peers are starting to wonder why he doesn't speak.  And why he yells so much.  He yells because he's excited and he doesn't have the words to convey his excitement.  So he yells.  It definitely puts some children off....as well as some adults.  But it's the reality.  And as he gets older, the differences between Miles and kids his age will become more and more obvious.

I remember reading in a book about children with Down syndrome that the developmental differences between typical children and children with Ds are not that different the first two years.  But that those differences become more pronounced once the kids turn two.  Yikes!  If that's true, I'm a little scared because the first two years seemed like they were chock full of differences.  But I guess what I'm starting to see is more differences in the way people or other kids treat or see Miles and that's what scares me most.  I've gotta brace myself though and remember that I do have friends that will help me through it, because I'm gonna have to be strong to help Miles through those difficult times.  Oh, the future!

But I've gotta enjoy the present and right now what's going on is tons of receptive and expressive communication with Miles.....and Ella!  That's right, Miss Ella and I had a 20 minute conversation the other night.  She was "cooing" and "ahh-ing", making the cutest sounds ever and I cooed and ahh-ed right back at her!  She would smile and even tried laughing a little bit, it was the sweetest thing ever and such a different experience than with Miles.  He never quite made those sounds, instead started months later with some babbling, using consonants like ma and ba.  There is something intense and beautiful about experiencing both.  There really is.

Miles, Ella & Daddy!

Adapt and Deal

A good day

 Sick children.  Sleepless nights.  Crying.  Food on the floor.  Tantrums.  More crying.  Poop everywhere.  Whining.  More crying.  And did I mention very little sleep?  It's enough to drive me mad.  And it has!!  I try so hard to keep it together but sometimes I just lose my cool.  This morning was one of those times.


Ella was up at midnight, 2:30am and 6am.  Miles was up at midnight crying....never a good sign.  He woke up this morning a boogery mess.  That means no daycare today.  There goes my "day off".  I really needed a day off.  So my conversation with Zach this morning went something like this:

Zach:  "I'm sorry, I know you're really tired."
Me:  "It's not the tired thing that has me in a bad mood, it's the kid thing.  I'm done with these kids!!"
Zach:  "O-kay..."

Of course I'm not done done with my kids....but I am a little done.  Isn't everybody with kids a little done sometimes?  They are the cutest, most loveable people in our lives, but they are also a the hardest to deal with.   I keep hoping that once we can communicate with Miles things will get easier.  Or that once Ella is a bit bigger, sleeping through the night and interacting with Miles, things will get easier.   But I'm slowly realizing that we are already communicating quite a bit with Miles....he's just choosing not to pay attention to us.  Apparently he's "the best kid" at his daycare and "always pays attention" at preschool, but not so at home!  Yep, it drives me crazy.  And once Ella is crawling around I'll have to run after both kids, not just one!  So maybe it doesn't really get any easier, it just changes and you either adapt and deal or you don't.  I'm trying to adapt and deal, I swear I am. 

Some days are good

Guilt And Other Things

Miles & Ella "talking"

It’s been two months since Ella was born and I’m finally starting to feel like the fog is lifting.  Going from one to two kids is quite an adjustment for everyone in the family.  You have to make physical, mental and emotional space for this new little being.  There are days when that’s easy and days when it’s not.  So I’m trying to take it all one day at a time.

For Miles, not being the center of attention has been difficult. He likes babies and was interested in his sister from the beginning, giving her kisses, saying “hi” and wanting to hold her.  Then he realized she wasn’t leaving and that our attention was split between the two of them and that’s when started acting out with us. He got very needy, clingy and whiny.  He also noticed that we tend to Ella when she cries....so he started crying more. “Crocodile tears” as we say in Panama because it’s just for show.  But what an annoying show!  He’s been testing our patience, that’s for sure.  Then he caught a cold which turned into an ear infection, which turned into a second ear infection and then bronchitis.  Kid was sick for almost three weeks!  And the cold spread to all of us in the house, including Ella.  But now that we’re all feeling much better, I think that Miles is getting used to the idea of having Ella around. He still wants more attention all the time.  He whines and cries and throws little fits, but he is also starting to act like a big brother. When Ella is in her swing, he wants to swing her.  When she’s in our laps or on the floor, he gets down to her level and “talks” to her.  Every night before going to bed he gives her a kiss goodnight and he gets mad if we don’t do the ritual.

As for Ella, she is a sweet little thing who cries when she has a reason and takes the world in when she’s content.  She seems very comfortable around Miles, with all his yelling and carrying on and she doesn’t mind that he sometimes pats her a little too hard on the back.  It’s very sweet to see their relationship starting to form. 

For me, splitting my attention between my two kids, my house, my husband and myself has been the hardest thing.  I end up having so much guilt over everything!  I’m guilty if I spend too much time with Ella or too much time with Miles.  I feel guilty if I leave them with a babysitter so I can have some free time.  I feel guilty when I’m working and don’t want to come home to deal. It’s like I can’t win, no matter what I do I feel guilty.  Until today, that’s all going to change today. 

You see, I’m tired of feeling guilty and the last thing I want is to turn this into a horrible pattern that I teach to my children.  I want them to be self assured, open, curious, empathetic, free.  I don’t want them to be second guessing themselves and feeling a need to be perfect in all areas of their lives.  I want them to live, experience and learn!  So my first order of business is to stop judging myself. If I can give myself room to make mistakes, learn and grow then I will be a much better role model for my kids.  And a much happier person!

The second thing I’m doing is making my time with the kids count.  I know that the more sleep I get the better mother I am.  So there are days when I won’t be able to handle both kids with patience, but I won’t feel guilty about it and I will enjoy the days when my patience and joie de vivre are tantamount.

And the third thing I’m doing is setting aside quality time for myself and not feeling guilty about it!  I deserve a little break, I deserve to get my nails done or take a nap or go out with my husband or sit an watch TV for 3 hours and I shouldn’t feel bad about leaving the kids with someone else so I can have a little me time.  I am a good mother, but I will be a great mother if I can rest and remember why I love my life.

All of this is easier said than done, I know that.  I’ve been experiencing it and that’s why I am taking it one day at a time.  As with anything difficult in life, that’s the only way to get through it.