Sunday, January 30, 2011

Magic Mama

I spent a little time this last week worrying...and I've decided I'm done.  At least for a little while.  I've pulled myself back up by my boot straps and have decided that although Elijah's Physical Therapist has a good amount of experience from which she can make some predictions, they are just that...predictions.  She may very well be right, but she may very well be wrong.  The thing is: we won't know until it happens. Worrying about it isn't going to help me or Elijah. So, I'm done.  Plus, this week I witnessed some of the most interesting and beautiful interactions between my sons.  My heart literally feels as though it will burst when I see and hear Christian including Elijah in everything.  Last week when our Occupational Therapist was over, we were working on getting Elijah to use his arms to support himself.  He was mad.  He did not. want. to. do. it.  So, as all babies do, he cried.  He cried the "mad" cry (which I'll admit, does make me laugh just a little because of the intensity of his "mad"ness).  Well, Christian came into the living room, where we were working, and said with a frown on his face, "My brother is crying."  We explained that Elijah was just mad about doing his exercises and that he was fine.  He seemed contented by that answer and went back to playing with his Dad in the other room.  The boys are also both sharing their room now full-time.  It took me a little longer than I thought to fully transition Elijah to his crib.  He still fits in the bassinet and it's just so tempting to have him close...but the time had come.  He had no transition problems and Christian is especially loving the companionship.  Apparently even a little guy like Elijah can keep the scary monsters away... It makes me smile.  I am also amazed at how much ruckus they can each sleep through.  We have had times where each wakes up, making a LOT of noise, while the other continues to sleep soundly.  Truly amazing.

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I'm pretty sure this was right after Elijah chewed on his hand and then grabbed Christian's face.  It was met with an, "Eww...Mommy, Elijah put his hand in his mouth and then touched me!"

At the end of this week, I was spent.  I was feeling completely burned out, and desperately in need of a break.  I had to barrel through without one until this weekend, but was able to get away for a yoga class on Saturday morning, a LONG overdue haircut on Saturday afternoon and then a highly anticipated book club/birthday gathering with some of my girls today.  We took a limo to Santa Anita Racetrack, dined at the Turf Club, discussed our thoughts and opinions of the recent book, and bet on a few horses.  Our winning horse?  Magic Mama.  Yep.  I won a whole $17.80...it was VERY exciting!!

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The Lovely Ladies Book Club

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Horse bets, a little bubbly. yummy food, and of course, fabulous hats...

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The birthday girl. Happy Birthday, my friend- it was a joy to spend this day with you!

I feel so rejuvenated. I needed this day.  I needed a day to laugh with my girls, to act like we always wear fancy hats and big smiles and discuss books while driving around in a limo.  I feel like I got a little Magic back in this Mama, and I'm ready to go again.

Okay week, whatcha got fer me now?

Thursday, January 27, 2011

The low end of low

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Elijah 9 months

I'm, once again, having a re-shifting and re-focusing of my expectations.  I've learned something about me: If I have a general idea or goal in my head, I can tolerate and stick with just about anything to get there, but if that suddenly changes, I'm all in a scramble.  For instance, when I was dancing, we would often be given a rehearsal time- let's say that our rehearsal was from 10am-5pm.  I could be danced to the limit, pushed to my max, but at 5pm, my body would shut down.  If suddenly the choreographer would say, "Can you guys hang for another 15 minutes to just run it a few more times?"  I would freak out (not openly, but inside.)  It would take all of the inner strength I had to try to muster up the energy and desire to power through 15 more minutes. And it was hard.  I was really resistant when it came to things like that.  I'm having one of those moments today.  Elijah's physical therapist was here this morning and while we were working with her, she was talking about how much flexion there is in Elijah's shoulders.  I agreed that I could feel that.  Then she said, Yes, well, unfortunately I think he is on the low end of low for muscle tone.  He may not walk until closer to 3 years old.  He might walk before then. But he might not.  It was like a shot to the heart.

When I was still pregnant with Elijah and I was researching what the side effects of Down syndrome were, I saw some charts for developmental milestones.  The average for walking was around 24 months old.  It was a bit of a shock to realize that it could take Elijah close to a year longer than it did for Christian to walk.  I rolled that around in my head for quite awhile and eventually came to terms with it: Okay. Two years. I can deal with two years.  But now it could take three years?? Three years makes me cry.  When I think of all Christian has mastered by three years, Elijah will be so far from that, that he may not even be walking yet. My heart hurts.  I'm trying to stay focused on the fact that "He'll get there". I'm reminding myself that muscle tone has nothing to do with cognitive ability and he may be doing a ton of other things even if he isn't walking, but my heart still hurts.  So, it's another adjustment of my expectations...to some degree...the fighter in me says, No.  We will work.  We will work hard.  We will help him to get stronger.  After all, he lives in a house with a dancer and a stunt man, right? Plus, even though we have a very experienced PT, she's not God.  She can't actually predict the future.  She might be right, but she also might be very, very wrong.  And yet, I know I have to adjust my expectations while we do all of that, so that it's not unreasonable or destructive to expect something he just doesn't have any control over.

Once again the word ODDS comes up for me.  This word was, and to some degree still is, a huge source of anxiety for me.  The odds of having a child with Down syndrome. The odds of said child having a heart defect. An organ defect. Lower than normal muscle tone. Eye problems. Autism. Cancer. ...And that is just a very small portion of the list.  So, we beat the odds for a heart defect. Beat the odds for an organ defect. We landed on lower than average tone. Landed on a few eye problems.  What more is still unknown...  There are odds for everything, but chances are (odds are?) most people don't spend a lot of time thinking about it.  It wouldn't necessarily be healthy to be thinking about it.  The odds are kind of a crap shoot. However, I think about odds now.  A lot. The odds of having a child with Down syndrome is about 1 in 700.  It is kind of funny, because every time I have a friend get pregnant and worry about Down syndrome, because of knowing me, I kinda want to say, "You don't have to worry.  I only have 503 friends on Face Book, so you're covered."  Once I get to 700 friends...then you're on your own.

I'm feeling a little low today.  A little discouraged.  Although, when I actually look at Elijah's smiling face and see him continually moving forward in progress and milestones, it's hard to get and stay depressed.  So, I'm just feeling low.
Maybe I could even say that I'm just feeling on the low end of low right now...

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Tuesday, January 25, 2011

Enough already??!!

Hello people.  My blog is about my life...specifically focusing on the fact that I have a young baby with Down syndrome.  It's my way of processing, dealing, documenting and perhaps offering hope to others.  That is what it's about.  Just thought I'd start there, because in case there was ANY confusion, I wanted to clear up that little fact.  I say this, because I heard an...interesting...comment yesterday.  Apparently an acquaintance of mine said (about me), "Enough with the Down syndrome already."  As in, stop talking about this major thing in your life- it's too much.  It is a pretty bitchy comment.  I didn't cry about it.  It didn't hurt my feelings.  I simply think this:  You have NO IDEA what it's like to be in my shoes.  It's easy for you to sit in your cushy, judgy armchair and say that I am talking about my son's disability too much, when your children are not at a specific disadvantage for medical, physical and developmental problems.  What is most ironic, is that this acquaintance, along with a large majority of my friends with children, talk about their kids all the time.  It's what we do.  We have nights out where we specifically agree to not talk about our kids, because that's how much we talk about them.  So, why is it that I don't have that right?  Especially when what came along with my youngest son, was an entire laundry list of what could be wrong, what might go wrong and what will definitely go wrong.  The comment doesn't offend me, per se.  It makes me realize that on the outskirts of my life, there is a very callous person who clearly has never been through one of life's major hiccups.  I hope I never get to the place in my life where I become so insensitive to what other people are going through, that I actually roll my eyes and say that they are talking about something....anything...too much.

When I was in my early 20's, I was in a very on again, off again relationship.  It was pretty draining, but I had my issues too, and I couldn't extract myself from the situation for many years.  My friends heard about the latest break up or make up every other week.  I am someone who has to talk things out in order to process my feelings, hear my words out loud, and get the advice of others in order to move on.  It works for me to do this.  (And obviously, it's not an uncommon solution or else there would be a lot of therapists out of business.)  There was a point where one of my closest friends said, "Enough already.  I can't keep hearing about how he hurt you and then watch you go back to him."  It hurt me to hear that, but I kind of got where she was coming from.  I had a choice in this situation, and I was the one who kept choosing to get hurt.  I didn't choose for my son to have Down syndrome.  I didn't choose for my son to be at a disadvantage.  I didn't choose to be pretty clueless about what Down syndrome was.  It was just how things happened.  I decided years ago that I never wanted to be like that friend. I wanted to be there for my friends- whether they never wanted to talk about something or whether they wanted to talk about it a thousand times. That comment stuck with me over the years, so when I got news that rocked my world, I realized that it would probably take a lot of processing- at the beginning and perhaps, ongoing.  So, I started a blog.  This blog. So that I could talk about Down syndrome in every. single. post.- if I want to.  Do I talk to my friends about Down syndrome and the ramification it has had on me and my family? Yes, I do.  Do I talk about it all of the time?  Not by a long shot.  To be really honest, I think that my acceptance and coping methods kicked in pretty quickly- especially compared to what some people-who have been in my shoes- say.  I also now have therapists who come to my house 3 times a week to work with Elijah.  I also now have a great community of women who have a child with Down syndrome.  Does this mean I'll never talk about Down syndrome with my friends? No. Because it affects my life daily.  However, it probably won't be as necessary to process things like I did in the beginning. 

I don't really care what this "acquaintance" said.  She's fairly irrelevant to me.  (I saw her about 5 or 6 times, socially, and I know for a fact that DS wasn't discussed at all a handful of those times.) I do care what my friends think.  But, I also know that if you're my friend, you had better be able to own up to saying something like "Enough about the Down syndrome already."  Which doesn't mean I won't stop talking about it, because that's part of who I am and how I "process".  You (this hypothetical friend) can settle into the fact that I talk about my life too much, and I can settle into the fact that you're kind of a shitty friend.  The best news is that the majority of "working things out" will happen on my blog.  It is set up in an amazing way: You don't have to read it. I don't check in to make sure my friends have read my blog. It is not required reading.  My mission for having this blog is about personal growth and about having a public forum for other people who are dealing with life's tougher issues to feel that they are not alone. 

I think it's fitting that I may have said "Down syndrome" in this post, more than in any other post.

Down syndrome. Down syndrome. Down syndrome.

So, Enough with the Down syndrome already??!!   I think that Miss Judgy pants should get an Enough already.  Enough with the judging of a situation you know nothing about.
Yeah, Enough already.
Comments welcome.

Sunday, January 23, 2011

The war in my own mind

It has been a FULL week...one of those weeks that because of the number of events and level of involvement, feels like a month. I'll start with the best stuff:

Elijah had a weight check this week. Since we last saw our pediatrician, we have made a few changes to tackle his slow weight gain and difficult constipation issues.  Our appointment was Thursday and unfortunately I couldn't be there.  Daddy had to take him while I was holed up at a little cafe in Los Feliz waiting to meet with a potential client...who never showed up.  As soon as I had written off the appointment as a bust, I called Charles. Elijah gained 10 oz in two weeks!! That's nearly twice as much as he's gained in any other 30 day period for the last 5 months! If he keeps this up, he will have gained a pound and a quarter by his one month check up.  I am relieved.  Relieved that he CAN gain more, it just might take a little more effort than some.  Charles and Eli were also sent down to the lab to see if they could do a blood draw again- apparently there isn't another option at his age, other than blood work, to test to see if his thyroid is functioning normally or not.  This time around, although there were a couple of failed attempts, the nurse did finally get a vein and was able to draw blood. (Huge exhale. And perhaps I should thank the client who never showed, for giving me an excuse to not have to watch my baby cry while nurses stuck him with needles.)The results came back the next day and our pediatrician called me personally (which of course freaked me out to hear that HE was calling), but I think he just wanted to spread the good news: Elijah's thyroid is NORMAL. Woow hoo, little trooper, woo frickin hoo!!

We are now a couple of weeks into our new schedule for Occupational therapy (OT) and Physical therapy (PT). They are both going really well. The fact that the therapists come directly to the house and work with our schedule takes a lot of the pressure off over how we were going to add MORE into our daily life.  I'm learning how to play with Elijah a little more effectively- so that he's playing, but also getting a little baby workout. I'm learning that he's not the strongest little guy out there (no big shocker) and he might fall a little toward the not-wanting-to-try-so-hard side, but who can blame him? Perhaps it's a combination of the PT, the OT, the new experiences, a few more weeks of life, but it seems that he is rolling easier both ways and taking more notice of situations: Just yesterday, I was tickling Christian while Eli was doing belly time on his playmat nearby. He was watching Christian and I play and whenever we started laughing really hard, he started laughing really hard. Oh my soul. :) He also seems to be doing a little better on the bowel movement front (or should I say back??) We've added flaxseed oil to his diet and the OT taught me some baby massage. I don't know if it's one, both, or a combination of that and more moving around, but he seems to be managing his constipation better. He's not crying as much anymore during a BM and gets a good amount out. Again, my apologies to those that are squeamish about these subjects. It is now a fact: Poop makes me happy. Never thought I'd say that, but it's a regular party around here when it happens.

My Mother in Law is in town and we've had an extra fun time doing a couple of outings with her around town.  We went to Descanso Gardens, which is one of my favorite places to go, got some fresh air and let Christian run.  We gave him the map, and said, "Okay. Which way should we go?" then let him entirely dictate our path.  He was in heaven.  Add in a little treat from the on-site cafe, and we were all enjoying a little piece of heaven.

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We also took in the zoo on Saturday and it was probably our best visit to date.  Even though Elijah just rode in style in his stroller, everything seemed to be a feast for his eyes.  Christian is officially at the age that turns the "zoo" into magic.  He was very specific about what he wanted to see and what his favorites were: The giraffes, the elephants, some lions, the gorillas and of course, the leopards. Unfortunately, the leopards were already put away for the day, or as we explained to Christian- They are sleeping.  So, instead, I've substituted a picture of our favorite, lovable leopard, Leo.  Here is Leo hanging out in the wilds of our backyard.  (And if you had any idea how much Leo is loved and how much Christian laughs when I do things like take a picture of Leo, then you would definitely be smiling...right now.)

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The extra benefit of having my Mother in Law in town, is that there is an extra set of hands on deck.  She is always happy to help out, by doing some dishes, making a meal, or giving us a night of babysitting so that we can have an adult night out.  I actually ended up with two of those.  On Night #1, I joined a group of girlfriends for a long awaited book club gathering.  As I mentioned in my last post, I have been dealing with some transitions in my friendships. I'm feeling much better about it now and have come out the other end with a whole new respect for people who take responsibility for their actions- because it's hard. It sucks. It doesn't feel good to say, "I messed up and this is how. I'm sorry" and then just let it go and know that you may not get forgiveness. You might not get an I forgive you, or an It's okay, and knowing that simply an admission of humanness and the act of being the person who is seeking to be better is Enough. Then, sometimes you do get the It's all good. And that is so nice. It's like a fresh breath, of "I was heard. People get me. I don't have to dwell..." So after a week of some difficult conversations between friends and doing the work of "grown ups" by owning up to where I may have made poor judgment calls, it was time to just enjoy!  Enjoy I did.  There was fantastic, intellectual conversations about the book, there was a cocktail or two, there were hilarious party favors and then there was something about a ridiculously silly and amazing "photoshoot" out in front of the restaurant... that we closed down. Turns out, I really needed a fun night out like that...of course, you're never fully relieved of your Motherly duties, so despite my late night, I was back up by 7am to attend to more feedings and real life.  Oh well... that little fact and the bags left under my eyes is why I don't do more late night craziness in my life anymore...

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(Completely embarrassing pictures withheld...)

The Night Out #2, came in the form of a double date night with my hubby and some friends of ours.  We were invited for dinner by a very close friend, who knows how to rock out a meal and choose a killer bottle of wine to pair with it.  It was mellow and cozy and exactly what we needed.  The humbling and surreal part was realizing that the path our life took with Elijah has also personally affected those we are close to. We talked a lot about Elijah and how getting his diagnosis made our friends have the difficult talks about what they would do if they found themselves in a situation like ours. More than anything, I do hope that the people who are in our lives and who get to know Elijah, and us as a family, can shed a new light on what it means to have a child with Down syndrome.  That it is not a sad situation, that I am not embarrassed or ashamed of my situation or of my son, that life is pretty much the same for us with our second child...just going at a slower pace. That Elijah is just as worthy of love as any child.  Our dear friends absolutely "get" that. I know that I am also not the only one hoping to change minds and educate people on what Down syndrome is really all about...but to a lesser, but still important degree, our friends are to.  They are re-thinking their statements, their comedy routines, their genetic testing options, their word choices...all of it.  It blows my mind. 

It's been a full week, where I feel a bit like I've been through a war...more with myself than anything. There will always be a bit of a war in my mind- I'm a thinker. A planner. A try to be do-gooder.  While those things are all essentially good things to be, they can drive you crazy. So, a little obsessing, balanced by a little family fun, balanced by a little crazy night out fun, balanced by isn't-life-mind-blowing?, is kind of what it's all about...

However, after such a full week of thinking and balancing and night-outing, I silently mime raising a glass and say,
"Here's to hoping that next week is boring...!!!"

Thursday, January 20, 2011

A reason, a season, a lifetime...

I wasn't popular in high school.  I wasn't un-popular, but I wasn't popular, per-se. I was busy.  I was trying to become a dancer and spent every hour of every day trying to achieve that goal.  I had friends, but not a ton, and my biggest relief was in attending my 10th and then (pause for throat clearing) my 20th high school reunions to realize that people seemed to genuinely like me.  No one thought I was an asshole, at least.  After high school, I did a little bit of evaluation on who I chose as friends and what I wanted for my life in friends.  I was launched into the dance world, where it was easy to bond with people because of our similar interest, but then when a true test of "who had your back" came up, found that my back was pretty bare.  So, I did a make-over on my friendships. I decided to try to be the kind of friend I wanted to have.  I have become this- and whether it be good or bad- I am fiercely loyal.  I expect that...or rather, I look for that, in my friends. I used to expect it, and have since realized that sometimes I expect too much. So, I've scaled back quite a bit what I expect from my friendships, but I still try to be the friend I want: loyal, trustworthy, fun...not without faults, but at the very least, accountable for the mistakes I do make.  This week, there was a stir up in some of my friendships... these are newer friendships that don't have the bonds and strength of the long term friendships I've built; they don't know me, and I don't know them enough to decide: Is it worth it? Is she worth it?  I've been having such a "love-fest" with my friends lately, that it all came as a big shock and I'm pretty upset by it.  I can only look to my own actions and ask: Am I keeping my 'side of the street clean'?  Where I am in my life now, I have to consciously choose where I want to spend my energy.  Both of my sons and my husband deserve the majority of that energy.  But, I also know what re-fuels me, and that is often time with girlfriends: to laugh, reflect, vent about life, process the "stuff" and hopefully, come back stronger, more rejuvenated and ready to handle all of the stuff that parenting throws at you.

We've been having gorgeous weather here, and it was a great excuse to get outside, do some gardening and let the boys...be boys.  It helps keep the little stuff in perspective.

Christian, goofing around:

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The best part about being a baby- Elijah naps wherever it suits him. The best part is the teeny, tiny foot hanging out of the tent, don't you think??
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We also celebrated my parents 40th wedding anniversary this week!! It was awesome to see how their marriage has endured 40 years, 4 kids and 5 grandkids (so far). Their marriage and their commitment and perseverance is so admirable. I sincerely hope that one day I can look back and be as proud of my relationship as they should be of theirs. I love you, Mom and Dad, and I am grateful for the example that you set for all of us, and for the love that you radiate between each other and for us. We are truly blessed by you.

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In the big picture of things, a few friendships falling off the map aren't the end of the world, but to me they take note. I come back to the reminder of the saying that "Some friendships are meant to last for a reason, some for a season and some for a lifetime". They all serve a purpose. It is sad to see things moving and changing, but I have to go back to my faith and to trusting that it is all for a higher purpose. God has been making room in my life for a lot of changes. A LOT of changes, this last year, in particular. So, although I let go a little begrudgingly of some fledgling relationships that were perhaps only for a season, I am glad that my family is stuck with me. Ha ha...for better or worse, it's all me. It's not a 'he said, she said'- it is a, "this is me- let's work on it, hope for the best and improve it where necessary" thing. It is life. It is REAL life, and like it or not, it is for the lifetime.

Sunday, January 9, 2011

Yoga as a coping method

I think I have figured out why so many resolutions go sour...Everyone starts with the best of intentions and then the littlest, or in my case most painful, side effect occurs and whoops...derailed.  Better luck next year.

I made a commitment to Yoga yesterday.  Not just an inner dialogue about how I should go more often, but an actual, financial commitment and membership to keep me going and motivated.  With the ups and downs of Motherhood and raising two boys, I have often felt like I need to go running, screaming down the street or occasionally, am struck by the desire to pull out my own hair.  It's not just about wanting the pre-baby body back.  I want that. I do.  However, the more pressing issue is that of having a physical and emotional outlet for those difficult weeks and the ability to stay calm within them.  So, I started, as any sane, self-respecting not-at-all-yogi-like person would do: With a tough class, meant to "challenge" me.  I figured I could always modify or rest if it got too intense.  There was modifying, there was resting, and there were a couple of not-so-under-my-breath sarcastic moments of "Yeah, right!" I knew I might be in trouble when, by the end of the class, my arms would literally not support me anymore- despite all will and breath, my arms would not, could not support me.  I felt amazing until I got home.  I walked into the kitchen to wash my hands, looked out the kitchen window and saw a giant blue tarp strung across the neighbors backyard: about 12 feet high, like a curtain spanning the entire width of their yard and most of ours.  The jarring blue tarp was the final straw for me.  We have put up with this neighbor's constant construction, and even worse, pile of junk, that rises higher and higher and higher, sabotaging any type of calm and serenity we could create in our backyard.  I took a deep breath, reminded myself that I had JUST come from yoga class, and walked over to confront the neighbor.  Luckily, the neighbor assured me that it was just for the night- they would be having a party for their oldest son.  Great.  I walked back to our house knowing we would be putting up with some extra loud, Mexican folk/techno/R&B music til the wee hours.  That's ok with me.  I like to think that when we have OUR raging parties with the extra loud...When you're happy and you know it/Itsy Bitsy Spider Music, that the neighbors won't complain either.  Because let's face it, the only raging parties we've had in our backyard of late, have pretty much involved screaming toddlers, collapsing bounce houses, and photo shoots with Elmo (luckily no children were harmed in the process).  But, I like to keep my options open.  So, did the yoga help?  Not yet.  I found myself wound back up to "crazed" within a mere moments of being back home, but I'm hopeful. 

I woke up this morning with some knowledge that I would probably be sore, and decided to attack it head-on with another morning yoga class.  This time I took a much less "challenging" level class, but it was still an amazing workout.  I really liked this teacher and felt that I got a lot out of her class, but I am so sore I can barely lift Elijah.  Yes, Elijah...the one who barely gains any weight...can't lift him.  I'm that sore.  When I got back home, I decided naps for everyone (myself included) then something fun- we'd go to the park in the afternoon.  I should have know that trying to get my 3 year old to take a nap, or even just be quiet in his room on a day where I actually really needed to rest myself, was a recipe for yoga-implosion. I'll just say that there was yelling: from Christian, from me...back and forth...in between trying to rest and trying to make sure Elijah didn't get woken up.  Am I painting the picture of peaceful yet?  I didn't think so.  So...this yoga thing is clearly going to take awhile to kick in.  Meanwhile, maybe I'll get my pre-baby body back while I'm attempting to use yoga as a coping method.


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After "naps"....we did make it to the park.  It was great to get out in the fresh air, with both boys, and just let them be

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I put Elijah into a swing, and Christian insisted that he swing next to Elijah.  Remember how I can barely lift Elijah?  Well, Christian can't get into the "baby" swing by himself, so I somehow manage to lift him high enough to swing his legs in...only he seemed to go "dead fish" and was not cooperating at all to get his feet into the holes.  I'm tensely shouting saying, "Christian! Put your feet in!  Your feet.  NOW.  ...Today!!!!  ...Seriously??!!  For the love of all things Holy, get your FEET in the holes!!!!"  After a considerable amount of struggling, he was in.  I look up, and meet the gaze of an amused Dad, who simply says, "They don't fit in there the same anymore, do they?"  Yoga.  Yoga.  Yoga?  

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Friday, January 7, 2011

Bad Mommy

Can I start with a sigh?  Elijah had his 8 month well-baby check up yesterday and gained a whooping 3 ounces. Three.  Three???!!! In a month??  Sigh.  I am at a loss.  I asked our pediatrician for a thyroid check because I know an over-active thyroid could be a reason for low weight gain, so the nurse came in, put the strap on his arm and started looking for a vein...and looking...and looking.  Then, she asked another nurse to come in and help by holding Elijah's arm so she could focus on the looking.  Then they both looked...and looked...and looked.  Then the doctor came back in and he looked and...You get the picture.  And before anyone comments to tell me that they must not be very good at taking blood, I want to assure you that is not the problem.  The bottom line was Elijah got stabbed at, a try in each arm, without so much as a full pin prick of blood coming out.  He was crying screaming, and I was doing everything in my power not to cry myself.  The doctor and nurses basically shrugged their shoulders and said that they didn't have the heart to just blindly jam the needle in and dig around until they hit something. Yeah...that doesn't sound like a very good plan to me either.  Our pediatrician decided that he's going to check with all of the labs to see if anyone can do a micro thyroid screen based on a heel stick.  Then we discussed what to do further about getting him to gain weight.  I went back through what I am already doing: I nurse him 6 times a day (every three hours) and he gets 2 servings of solids 2 times a day, which just recently became three times a day.  My pediatrician assured me that he is getting plenty of fluids, but there is a possibility that my milk isn't caloric or fatty enough for Elijah to gain more weight.  We decided that I would try reducing the nursing to three times a day and giving the other feeds with formula.  I hope this helps.  I have been really resistant to trying this until now, because ANY formula supplementation can affect your milk supply- even if you're pumping.  What would have been the worst case scenario to me, would have been to compromise my milk supply only to find out that the formula didn't help with the weight gain anyway.  However, now that Elijah is 8 months old and eating a lot of solids too, I'm not as worried about him being exclusively breastfed.  I will continue to nurse to make sure that he's getting all of those helpful antibodies from my milk- after all, along with Down syndrome comes a compromised immune system (not to mention how the facial muscles benefit from the nursing), so any extra help in that area is good.

So, I am working hard to shake the Bad Mommy feeling.  It's the strangest thing how being a Mother, especially in the infant months, triggers a very primal response:  The desire to feed and nourish your child.  To prolong life.  To help your child thrive.  When he isn't thriving in a comfortable range, it makes me feel like it's my fault.  My milk isn't good enough. I'm not good enough.  I comfort myself with the fact that it's not for lack of trying.  Much of my world has been about feeding this kid.  I have thought through every equation: how many feeds, what kinds of food, how often, surrounding conditions. You name it. Plus I have access to a ton of professionals to make sure I haven't left a stone unturned.  In every other way, Elijah seems the picture of health: he's content, he's smiley, he's a great sleeper, he plays, did I mention that he smiles a lot?  A starving, unhappy baby does not smile a lot.  See how I seem to keep justifying myself?  Primal, people. Primal.  It might not be rational, but it's what I'm feeling. At least I have a plan now.  I do much better with a plan.  I'm a plan kinda girl.

Today, Elijah started his first real schedule of therapies!  We had both Physical Therapy (PT) and Occupational Therapy (OT) today, although they will normally be on different days (one session could only fit us in today this week, but next week we'll begin our "real" time slot).  Elijah did GREAT!  I thought the therapists were both knowledgeable and professional.  I've already learned a few good tricks and have a few goals for the week set.  It's awesome.  I am finally taking a big breath of relief that we are in the system and getting started.  I really think Elijah is ready, and today proved it.  He lasted a good 40 minutes in each session before he started complaining.  He complained more in the Physical therapy than in the Occupational, but that was to be expected.  The OT was especially helpful because part of their expertise is in feeding.  I told her the situation and she didn't seem worried about any of it.  When I explained how Elijah eats, she was pleased to hear everything I said.  I also told the PT what was going on with Eli's weight gain and she seemed even less bothered by it than the OT.  She even seemed skeptical that I needed to supplement with formula.  But, I'm not comfortable without a plan, so I'm taking my plan and sticking to it. In two weeks were going back to the doctor for a weight check, so I think I'll have some idea if it's helping or not.

It's been a big week for Elijah and I.  What he feels...I feel.  I can't believe how wrong I was as a child.  I would roll my eyes whenever my Mother would say, "Believe me, this hurts me more than it hurts you!"

Sigh. 

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This moment made my week. Christian is becoming more and more involved with Elijah, and in this shot, he was insisting that he needed to hold him. He couldn't be a more proud big brother and although I couldn't catch a good shot showing how much Elijah loved it too...he did. However, I think I loved it best of all.

Wednesday, January 5, 2011

The wrong person is super skinny

Elijah has his 8 month well-baby check up tomorrow.  I'm dreading it just a little...because they will tell me how little he's gained... It always starts out the same way: The nurse measures and weighs him, and says, "Good job, Mommy- he weighs 12.8 lbs!!" Then I groan and say, "Oh no! He only gained 6 ounces??"  She looks back at her notes..."Oh... yeah... Well, he grew 1/2 an inch!"  She's a lovely, positive, smiley nurse. And I'm pretty sure that she has stopped writing down how far off the typical weight chart Elijah has fallen.  She just writes 3% with a little pointing down arrow drawn next to it.  It is so frustrating. It is so beyond my control.  His head circumference is the same as his weight percentage, so it's not like he's anorexic, with that lollipop head syndrome (Note: You may be familiar with this look made famous by a few under-fed Hollywood actresses. Their bodies are emaciated, but their heads are normally sized.)   He's eating.  He's actually eating a good amount: He nurses 5-6 times a day and has been taking 2 solid meals, which I just upped to 3.  He eats a full 4 oz. at each solid feed.  I just don't know where he puts it.  I've requested a thyroid check at tomorrow's visit just to make sure there isn't a thyroid issue at the heart of it. (Apparently thyroid problems can be quite common in people with Down syndrome.)   My pediatrician is awesome.  He's very calm about the whole thing.  When I asked him at the last visit if it was okay that Eli was so small, he just shrugged his shoulders and said, "What are you gonna do?  He's happy...He's healthy."  (I liked his response to my same question the time before too: "What?  Do you want him to be carrying you in here next time?")  Most people have an image in their heads about what people with Down syndrome look like, and overweight is usually one of the characteristics associated.  The fact is, that people with Down syndrome have low muscle tone, also called hypotonia, and the low tone carries with it a lower metabolism.  It all becomes about balancing diet and exercise.  Hmm, I've heard that somewhere before...Oh yeah!  Everyone has to balance diet and exercise or risk becoming overweight.  What is also very common with babies who have Down syndrome, is a slower growth rate.  In fact, they have their own growth charts.  Even so, Elijah is low on that weight chart too.  We'll see what he weighs in at tomorrow, and then I can truly panic.  He looks so skinny to me now.  But, he also looks like he's grown in length.  In this equation, he is not the one who I had hopes for "thinning out".  Hello New year's resolution: Operation Pre-baby body?  Not going so well... (Until today.  I've mostly eaten soup....  And I'm starving!)

This part of the post comes with a warning: If you are in any way, someone who shies away from "Too Much Information" - abort reading now.  If you are someone who is nauseous at the thought of #2s, BMs or any such nick-name for taking a dump - abort reading now.  (Laura F., This is where you turn off your computer...) Otherwise, here we go...
Elijah is constipated.  He was call-the-doctor-in-the-middle-of-the-night-on-Sunday, constipated.  I had flash backs to my one and only (Thank you Lord!!) bout with true constipation shortly after Christian was born.  The memory of that agony was a large part of why I decided to forego all drugs during and after my labor and delivery with Elijah...but I digress. Elijah is constipated and it was awful and painful for him on Sunday night.  He cried, I cried.  I was desperate. He was desperate.  There are things I did and was willing to do that I never would have dreamed of before becoming a Mother.  I'll leave it at that.  All of you Mothers out there know what I mean.   He finally managed to pass these Gigantor rocks that were in his system, but we have been fighting it since then.  It does seem to be getting a little better each day.  It should...he has been on a diet of breast milk, prunes, and pears and any combination of the three for the last 3 days.  Charles said that last night while I was at work, Elijah passed one more harder stool, but then it was softer.  I questioned: How soft? What did it look like?  How big was it?  Was it little? Was it a lot?  Was he in pain?  How did he act afterward?  Needless to say, Charles did not have the answers or detailed descriptions I was looking for, so until I witness another BM, I have no idea where were at with this stuff.  But, I will tell you this: Despite my baby boy's difficulty and pain in having a BM, once he got one out and had a little break, he looked right up at me and gave me a big grin.  Trooper, I tell you.  The definition of Trooper, really.  God, I love this boy.

On the home front, we managed to get back from our trip back east a few days ago, but not without one last hurrah of drama.  We landed safely at LAX, got our bags (this time!) and then lugged the bags and the boys out to the shuttle stop to pick up our car.  Then, we got the bags and boys into the car, took a deep breath and said, "Okay everybody.  We're almost home!!"  Cue the bad news, as the car won't start. Dead Battery. 
Really.
So, then we called Triple A, who came out 20 minutes later, confirmed that it was the battery that was dead and replaced it for us at only 4 times what the general cost of a car battery is.  Whatever.  We wanted to get home and he warned us that if he just jumped it for us to take home, we could be risking the health of the alternator.  With my car luck, I said, Nope.  We'll go ahead and have you replace it.  THEN, we got home.  It was home sweet, filthy home.  There is no such thing possible as leaving a house clean the day after Christmas when you're preparing to travel with two small children.  I dare you to say otherwise. However, the filth was a huge motivator.  By the next day, I had the Christmas tree down, all lights and ornaments packed up, the boxes put back into the garage and even the outside lights down all by myself (which is not really saying all that much, considering our dazzling display of Christmas lights included about a 20 ft stretch that surrounded our front porch.  Yeah kids, we aim to please. My husband clearly is not trying to keep up with the Jones'. Ha!)   So we're de-Christmased and the house is clean-ish. Christian walked in after I finished the living room and said, "Wow.  It looks good in here!"  Why, thank you my little man.  I do appreciate the compliment.

Yesterday, Christian came into the office where I was fiddling with my emails, sat down on the couch, took a deep breath and said, "We're home, Mom.  We're home."   It is always sweet to be able to travel and visit family and friends, but there is something very comforting about arriving home.  Plus, we get the best of both worlds: we're back home and we only have to wait a few weeks until Grandma takes a trip out here!! This was lucky timing as she happened to have a trip planned to visit a cousin in San Diego and is taking the train up after that to stay with us a few days.  I think more than any of us, Christian will be thrilled!

Now, I'm off to stuff my face, because soup is just not cutting it and my pre-baby body will have to wait another day.  If only I could trade places with Elijah: I could be the one who was super skinny.  I'd probably be okay with that...

Saturday, January 1, 2011

The Growing Year

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This has been a year like no other for me... a year which has pushed me, challenged me, stretched me, and grown me...with the pain of adjusting to unexpected news, the ache of love moving on, and the unleashing love that comes as a result of seeing the Bigger Picture more clearly. There are years I look back on as standout years- not usually because they were particularly good or easy, but because I grew the most, I learned the most and I became ME, the most.  This was one of those years.  There were times where I felt stretched beyond what I could tolerate, but the gifts and joys and rewards were more immense than I ever imagined.  No...2010 wasn't an easy year, but it was a standout year. Maybe THE year.  The year I will look back on and think, "That's when it happened.  That's when I got one of the biggest lessons in life. That was one heck of a year."  The highlights- and my ode to 2010- are:

My pregnancy and the adjusting to our baby's Down syndrome diagnosis. At this photo shoot I began to reach out and meet other families who gave me a knowing look and said, "Just wait. You'll see... Our children are a blessing and a gift and your son will probably teach you more than you'll have to teach him." I think they might be right...

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My family and friends embraced me and our baby boy with beautiful, thoughtful, charming baby showers. I felt them reach out to us in a big way to say, "We're here for you- no matter what."

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We had to say goodbye to my first "baby", our dog, Buddy. He was pure joy, pure unconditional love and the greatest companion a girl could ever ask for. He saw me through the bulk of my adult life, to date, and was my crutch through both good and difficult times. I miss him everyday. He is still very much in the forefront of our thoughts.

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Just two and a half weeks early, our beautiful baby boy, Elijah Patrick Currier was born and arrived through a natural childbirth, unmedicated into this world. It was the most beautiful experience I have ever been a part of. Despite his diagnosis of Down syndrome, he was born with no organ defects. Although we endured a 7-day NICU visit due to low oxygen saturation, we were able to bring our baby boy home to complete our family. He is my biggest inspiration. He amazes us each day of his young life, proving that a strong spirit and contagious smile are life's biggest attributes.

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My biggest little man, Christian, turned 3! Watching his personality and sense of humor develop is nothing short of amazing. Although we definitely hit some patches of the "Terrible Threes", he manages to charm us and most people around him on a daily basis. He is a compassionate friend and a wonderful helper around the house. We are very proud of him.

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I hit 39 this year! GULP. When did that happen??? I celebrated with a small gathering of close friends and then a wonderful family party to top it off. I am truly blessed by the people in my life.

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Christian started preschool! Even though I cried the first three days of school, he adjusted well. He loves his teachers, Teacher Judy and Teacher Stephanie and talks often about the kids in class. I'm in awe of everything he is learning!

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Some of the other things remarkable about 2010 that cannot go unmentioned are:
An amazing job teaching ballet with the best staff and students anyone could ever want!

A full year of teaching and bonding with all of my Stroller Stride Mamas...these ladies are remarkable. Thank you Mamas for enriching my life in so many ways!

My joining of two book clubs. Not only have I read more than I have since college, but I have gotten closer to some of the most inspiring and genuine friends I could ask for. We have intellectual conversations and a TON of fun. You ladies ROCK!

My best friend turned 40 this year. Again...where did the time go? It seems only yesterday that...well, no, let's face it...it feels like a lifetime ago that we were 21 and 22 years old living in our little two bedroom apartment in Sherman Oaks!!!

The 24 hour getaway!! My good friend Karen and I acknowledged that we were well overdue for a break, took leave of our families for 24 hours, checked into a near by Four Seasons Hotel and drank wine, watched movies, ordered room service and gabbed until the wee hours. Although our lives get crazy, I truly cherish our long-standing friendship- even if a month passes without the time to catch up. She is like a sister to me.

Our trip back East to see Charles' family. It has been over 2 years since we've seen some of the family and despite a very difficult trip getting there (and getting back...), we enjoyed spending quality time with them. It was especially fun to see Christian's connection with his Grandma! Plus, there was SNOW!!!!! It was the boys first experience with real snow, and I've kinda missed it too!

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The blessings of a busy year for my Event Business. Even though I sometimes complained about the stress of running a business and balancing a family, I was grateful for all of the wonderful events that I had the pleasure of making (hopefully) just a little more beautiful. There are too many to name, but some of my favorites are here:


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So, I am officially donning 2010, the Growing Year. Thank you 2010 for all of the ups, the downs and the in-betweens that brought me to where I am today. Now...here's hoping that 2011 has great...but maybe not quite so big, lessons to learn! I need a little time to keep adjusting to the ones 2010 threw at me!

Even though I am not a big resolution person (maker or keeper), I thought it was fitting that 2011 start off with a few goals. They are:

1. Continue to find a better balance between work and family. Prioritize. Prioritize. Prioritize.
2. Get my pre-baby body back!!
3. Treat myself to a fabulous pair of heels...even if I have no place to wear them. Then, create a scenario where said pair of heels is worn!
4. Girls Trip! I've been wanting to do some sort of a girls trip, and I think 2011 is the year to do it!
5. Listen to my instincts- particularly when I feel certain people or situations are too draining. Life is too short to waste the energy!

So there it is. In writing. My 2011 Resolution list- a mix of serious and fun...just like I'm hoping 2011 will be...
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