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. 

Blue Iguana

Ella is officially two weeks old.  Miles has been a big brother for two weeks.  I've been a mother of two for two weeks.  Zach has been a father of two for two weeks.  How are we fairing?  Blue Iguana.  What, you say?  Blue Iguana. 

Ella Grace - Feb. 1, 2012

It's been an intense and amazing two weeks.  Ella's birth was uneventful compared to Miles'.  I had a totally normal cesarean, coming off the anesthesia was not so bad and the three days in the hospital were easy and kinda nice.  Just like Miles, Ella took to breast feeding right away and though she lost about 8 ounces that first day, she gained it all back within a few days and is now well over 7 lbs!  According to my doula and the pediatrician, she's an "efficient and organized" eater.

Coming home from the hospital has been overwhelming and emotional, full of ups and downs. So far, Miles has been an awesome older brother.  He constantly wants to hold Ella and kiss her head and toes.  He can almost pronounce her name, though it sounds more like Etta than Ella.  And although he's good to her, he's been needy with us.  When she cries, he starts crying and wants to be held or he looks at her with a mixture of sympathy and fear.  That first week back, he definitely threw a few tantrums, yelling, crying and throwing himself on the floor for no reason.  It's been harder getting him to bed on most nights.  He's either overtired and throwing a fit or has too much energy and is defiant.  The few easy nights we've had where when the four of us sat in his couch and  read books and cuddled together.  But I do see what seems like the beginning of a little jealousy on his part.

Last night, the four of us were sitting on the couch in Miles' room, reading books and getting ready for bed when Zach got a call he had to take.  He stepped out of the room for what I thought would be five minutes.  No problem, I can handle putting Miles to bed with Ella here.  I'm gonna have to do it soon enough so I might as well get used to it!  Everything was going well, Miles was tired, Ella was calm, I turned off the light, Miles hugged me and two seconds later Ella starts crying.....loud and uncontrollably.  Merde!!  "Shh, shhh, here nurse a little bit.  No?  Don't want to eat?  Okay, gas?  Let me burp you.  No?  Crap!!  Where's Zach?!"  Miles looked at Ella with concern, I reassured him it was all right, she was just feeling uncomfortable but she's okay.  "Are you okay Miles?  You know I love you.  You're such a good big brother, I'm so proud of you, let me give you a hug."  He wanted me to hold him and kiss him, I tried my hardest but at the same time I had Ella on my right arm screaming.  Miles finally gave up, I think he felt left out, I don't know.  But his eyes went kind blank, he was seeing past me and out towards the door, waiting for Papa to come back.  But he didn't.  The 5 minutes turned into 25 minutes and all three of us in the room started breaking down!

My heart broke for Miles because I wanted to comfort him but Ella's crying was so loud that it was hard to ignore.  I considered taking her outside and leaving her in her basket while I finished putting Miles to bed, but I knew she would only cry harder and it would stress me out and it would still take a while to get Miles to bed.  What do I do?  Eventually, Ella calmed down enough that I was able to safely lay her on the couch next to me.  Miles jumped in my arms.  I hugged him, cradled him, kissed him and in that moment Zach walked back in the room and Miles wanted his Dada.  It broke my heart.  I felt like I had failed him.  I couldn't give him what he needed so he didn't want to be with me.  I took my cue and left the room with Ella.  Now I was the one crying.

So far, the hardest part of having two kids has been giving Miles the attention he needs from me.  Since I had a c-section, I'm not allowed to pick him up for a few weeks.  I can't drive him to his therapies or school, I can't take him in and out of the car seat, I can't pick him up out of his crib, I can't lift him into my arms when he comes running towards me.  And that kills me!!!  I tell him I still love him, I shower him with kisses and I hug him on the floor or when I'm sitting as much as possible.  But Zach's been his primary caretaker the last few weeks and it's been really hard for me to sit on the sidelines and watch. 

Zach emerged from Miles' room a few minutes later.  Miles was fast asleep.  Zach heard me sobbing and held me in his arms. 
"I just feel so bad," I said.  "I feel sad that I can't comfort him, that I can't hold him.  What if he thinks I don't love him anymore?" 
"Miles understands.  He knows you love him, you're a great mama."
"But what if he doesn't?" and my sobbing gets louder.
"Blue Iguana," Zach says.
Something inside me switched.  Do I feel a little smile coming on?
"Blue Iguana", Zach repeats.
"Blue Iguana", I say, now a full blown smile showing on my face.

Blue Iguana-- that's our code word for "shit is getting out of hand so lets laugh it off".  It's our sign to stop and smile, to find the comedy in the drama, the calm in the chaos, the sweet in the struggle.  Life is tough and we can choose to live in constant struggle or say, screw this!  I'm gonna be happy cause things could be worse!
Miles is not going to remember the few weeks that I couldn't hold him.  By the end of this year, he's not even going to remember life before his sister.  And neither am I.  We're in transition right now, all of us adjusting to this new life.  And if we keep our sense of humor, I'm sure we'll come out much stronger on the other side!

Miles and Ella meet

Big Brother Miles!

Ella at ten days old.

Coming Full circle.

I woke up at 4:30 this morning and couldn't go back to sleep.  In just 24 hours I will be heading to the hospital to have a baby, via cesarean.  I've spent the last 9 1/2 months preparing for this moment, mentally, physically and emotionally.  I know I have trauma from Miles' birth.  It was the best and worst day of my life so far.  It was the birth of my son, the one who has brought me so much love, joy and enlightenment.  But the way it all went down was not joyous at all.  The operation itself went great, it was the hour after when we were told Miles might have Down syndrome.  At that very moment, every ounce of joy I felt got crushed by a sadness so deep that my whole being went into mourning.  I was already in an altered state from the anesthesia wearing off and the pain medication kicking in.  My body was shaking, my teeth were shattering, but my mind was healthy.  And then the news.  The news sent my mind reeling.  I went deep, deep into a black abyss from which I never knew if I'd come out.  As the anesthesia wore off, I felt like my mind was melting away with it.  Was I shaking from fear and sorrow or was it really the drugs wearing off?

I try to find the good memories in my birth experience with Miles, but they are all tainted by those words, "Your son may have Down syndrome".  I can't find one clean, clear, fully happy moment.  They took that away from me an hour after he was born!  I wasn't allowed to savor it and now it's hard to find.  So yes, going back into the same hospital, to an OR, to have another cesarean birth is freaking me out.  I know this time will be different, my heart knows that, but my mind keeps getting flashbacks to the last time.  So I couldn't get back to sleep.

It's now almost 7am, the sun is up and I can hear Miles in his bedroom.  I believe everything will be all right.  Baby Girl's birth will be perfect, she will be healthy, strong and beautiful.  She will have all her fingers and toes and breath well and will have no extra and no less chromosomes.  She'll be just right.   And I will be happy and recover well from the operation.  I will feel extreme love and joy for both my new baby and big boy Miles and nobody will take that away from me.  I will have come full circle.

A Different Sort of Chaos

Miles has been acting very unlike himself in the last two weeks.  Well, it really all started about a month ago, when he got an ear infection.  He didn't want to eat, he was irritable, waking up at night, crying for no reason.  We took him to the doctor, got him on antibiotics and he started being more his charming little self.  His appetite came back and he stopped waking up at night, but then his stomach got messed up.  Probably from the antibiotics.  He hasn't wanted to eat much, not even his favorite foods (brown rice, eggs and toast).  He's been a picky eater for the last year, but we never had a problem with breakfast....until now.  All of a sudden, he doesn't even want breakfast.  And he's been whiny and clingy.  If Zach and I are around, he wants us to hold him constantly.  And then, this morning, for no reason, he started crying and wouldn't stop.  Miles is not a crier.  Even when he was a little baby, he barely cried and when he did, it never lasted more than a couple of seconds, maybe a few minutes.   So this morning was a first, because Miles sat there and cried for at least 15 minutes and he was inconsolable.

He wanted food, but when we gave it to him, he wouldn't eat it.  He wanted to be held, but then he didn't.  He wanted to sit down, but then he didn't.  He was crying with emotion more than pain.  Zach and I tried everything to soothe him and it broke our hearts to see him so frustrated, so out of control, so much in need of our help, but unable to communicate it.  I finally grabbed him in my arms and took him outside into the cool morning air, to see the sun and the trees and the birds and the sky.  And we talked.  I reassured him that I loved him and that he was okay.  I told him what we were going to do today and that it was going to be a good day and he stopped crying.  He relaxed, he held me tight and eventually we went back inside and got him ready to go, because of course, he has a full day of therapy and daycare and music class.....

I don't know!  Zach and I are at a loss!  We're not sure what's going on with him and we are just as frustrated as he is about our inability to communicate.  Sign language only gets us so far and we just don't know what else to do.  I look at his little crying face and it kills me.  He wants something, he needs something, but he might not even know what it is, let alone communicate that to us.  It's heart wrenching and exhausting and completely frustrating.  I know that "this too shall pass" but I am hurting for my son because I don't know how to help him.  Am I doing everything I can to try and understand him?  I'm tired and sometimes I lose my patience and then I feel horrible.  It's a challenge!

In my gut, I think he realizes that things are about to change at home.  He's feeling our anxious energy and maybe even the baby's energy and he's afraid that he might not get our love and attention once this baby comes.  He's definitely aware that things are happening and I think he's got his own anxiety about how he's going to fit into the equation.  So he's acting out, he's on food strike, he's being needy, he wants as much as he can get from us now, while he has us all to himself.  I know this is going to be a difficult transition for all of us, but I also know that by this time next year, none of it will matter.  It will have passed and Miles will love his sister and will be teaching her and learning from her.  And we will be living in a different sort of chaos, one that can accommodate all of us equally. For now, we continue to live in anticipation of all the changes that will take place as soon as baby girl joins us.  Which is very soon..thank God!  Cause the anticipation is killing me!  It's killing all of us!

I keep wondering if I'm giving Miles enough attention.  Am I showing him that I love him?  Am I there for him when he needs me?  I worry that I've been too self-involved to be there for him and that's why he's acting out.  I'm doing the best I can...I just hope my best is good enough.  

Here are some pics of Miles and I lounging around, enjoying lazy time together.

I love this little man!