Saturday, May 21, 2011

I'm THAT girl, and frankly it sucks.

What am I supposed to say?  I write so that I feel better, but it's always easier to write when I feel great. Catch 22.  I don't want to be that girl.  But, I already friggin' am THAT girl. That girl that people will feel awkward around until they spend enough time to realize that there really isn't all that much awkward about my life.  Yes, I have a baby who has an extra chromosome.  He's still beautiful and smart and lovely.  But, I am THAT girl- whether I like it or not.  And I like it not.  It seems to be particularly awkward for people who are having babies. I ran into a Mom at Christian's preschool, who I used to really like.  The last time I had an actual conversation with her was the day I told the Mommy and Me class that I was expecting a baby with Down syndrome.  Actually, I didn't tell her directly.  I told a small group of Moms and the teacher of the class.  I had to leave early that day for an OB-GYN appointment and the teacher asked if it was okay to share the news with the rest of the class in my absence.  I said it was fine.  From a good friend in the class, I found out that this particular woman cried like a baby when she heard the news.  This year, my son and her daughter are in the same class.  I have felt and written about how I feel she avoids me.  Avoids all eye contact.  On Wednesday I saw her again--she didn't see me, or pretended not to see me, and at first I buried my head in my phone while I waited for Christian's class to let out.  Then I thought, Hell no.  I walked right up to her, stood next to her and said Hi!! How are you?  She smiled and said Hi, and then I asked, "So, how is life with 2 kids now?" (She very recently had a baby, who was with her.) She said, "Oh, I have three now.  We also have one in Kindergarten." (Oops.) I said, "Oh! How old is he now?"  She said, "She (oops again) was premature. She's four months, but had she been on time she would be two months old.  She's been a lot of work.  She had to be in the NICU for 39 days."  Wow.  I mentioned having a brief NICU stay for Elijah, but expressed some compassion for how difficult the experience is, and how I can only imagine how difficult a longer stay must have been.  The door to Christian's classroom opened and kids and parents flooded the doorway, relieving us both of the conversation.

I know some people are uncomfortable around me now.  I know some people are uncomfortable with what they actually don't know anything about.  A few weeks ago, a very close friend of mine and I were talking long distance on the phone.  She's always been one of those friends that I could be very open, honest and raw around.  And she is the same with me.  In this particular conversation, I was seeking a little advice that had something to do with people's reactions (specifically friends reactions) to this Special Needs Mom Cape and Neon Lighting that I apparently have branded on me forever. My friend said, "Well, I have to admit that I have been pretty uncomfortable when you talk about Elijah or Down syndrome.  But, then again, I've always been uncomfortable talking to friends who have children, because I don't have any kids yet.  I don't understand what they are going through and it has always made me a little uncomfortable."  I literally had to pull out my best possible acting to keep from breaking down into sobs right that second.  I understand what she's saying, I do.  It hurts anyway. I sobbed my eyes out after I hung up the phone.  I wish I could say that this was an unusual or unique scenario.  The reality is, it is COMMON.  It's just that this friend was the only one who decided to be open and honest enough to admit it.  People don't perceive my family to be a carefree one anymore.  That instead there is something heavy and burdensome that has come into our life.  Not that Elijah, per se, is burdensome and heavy- but perhaps that the experiences we have gone through in finding out prenatally, perhaps the extra odds of having some health complications, and the fact that we will have challenges in getting people to see Elijah, and our family by extension, as more alike than different than theirs. 

I feel the awkwardness- even when it's not spoken of.  I wish I could say it was all in my head, but it's not.  I'm learning to have a little tougher skin. To focus on what is actually true in my life: I couldn't love my family one ounce more.  Not even if the youngest member had come without an extra chromosome.  I am so head over heels in love with him, it is ridiculous.  I don't feel burdened by him.  I am 100% happy for my friends who are having perfectly healthy babies-- luckily, mine was too.  I went through some true life changing experiences in the process of coming to terms with Elijah's "Designer Genes".  It didn't leave me bitter or feeling gypped. I truly believe that God gave me exactly the right baby for me.  I don't have a magic wand for people to know what is in my heart.  I don't have a magic wand to keep people from feeling burdened or uncomfortable because my life has certain, newer challenges.  I have Time.  I believe that in time and with enough exposure to me and my family, that more people will "get it". It's not easy to be patient for that though.  Sometimes my heart does hurt from it.  I'm THAT girl, and frankly it sucks.

Something I read has stuck with me deeply though....In the blog or article (or who knows where I read it now...) a woman used to see this Mom at her kid's school who had a child with Down syndrome.  The woman used to watch this Mom and think that she had such a quiet dignity...a calm contentedness that she couldn't put her finger on.

I strive to be THAT woman.  The one with grace and dignity and a calm contentedness....Right now, I'm probably just a little too loud and bold and opinionated to be THAT woman, but that's what I'd like to be. 

I'd like to be THAT girl.


Tuesday, May 17, 2011


We did it! We are successfully through each of our boys birthdays and parties.  Christian was SO excited for his party.  It made my heart so happy to see how much he was looking forward to it, how much he wanted to have a party.  When the day came, he was beside himself.  He set up all of the kids' chairs at the kids' table- all by himself. He jumped around for joy as I filled each balloon with helium, and proclaimed excitedly each time someone new walked into the room: "Mommy is going to make a bouquet out of the balloons!!" He was excited about his costume for his "Fancy, Pool, Costume Party": A Monkey hat, a swim shirt and trunks, a tie, and a monkey tail sewn onto the back of his swim trunks. 



I found inspiration for the party from one of Christian's favorite stories, "I Am Invited To A Party", by Mo Willems.  In it, the Piggie gets invited to a party and invites his Elephant friend who "Knows parties!" The Elephant worries, What if it is a Fancy party?  Then as they are dressed for a fancy party he worries, What if it is a Pool party? Then as they have added to their outfits, he worries again, What if it is a Costume party?  By this point Piggie questions him, A Fancy, Pool, Costume Party??!! But the Elephant insists, He knows parties. Sure enough, when they attend the party, everyone is dressed in their Fancy, Pool, Costume attire and Piggee exclaims, You do know parties!



Most of the kids came dressed to the nines...


Our welcome balloons; A fun "Four" sign; the centerpieces- a top hat representing the "fancy", a beach ball for the "pool" and a boa for the "costume"; and the homemade caramel apple favors

It was barely 70 degrees when the party rolled around, but it was just warm enough, and I knew that to a bunch of 4 year olds, the temperature wouldn't matter- they would party like a bunch of rockstars when Slip and Slides and pools were involved.  And I was right. 


It was such a fun party and it made me so happy to see Christian so happy.  He was practically purple from being cold but he couldn't care less- he was in heaven!  I worried when we first received Elijah's diagnosis, that due to all of the additional attention and therapies he would need, that Christian would feel overshadowed or less important.  I'm sure it's something I'll always want to be aware of, but so far that has definitely not been the case! He gets lots of love and attention and at four years old is always quick to try to steal the attention anyway! :)


We were doubly blessed that Charles' Mom was able to visit during Christian's Birthday party and preparations for it. We all enjoyed having her around- especially during a time that she has not yet gotten to experience and it was extra nice to have an additional set of hands on deck for all of the preparations! Perhaps one of the nicest aspects to her being out here, was the fact that Charles and I actually got a "date night".  Life is so often about "passing the baton"- Can you be home this night while I work and I'll be home that night while you work?  Did this bill get paid? Do we have money to pay that bill now or later? It's kind of the grind of reality.  But, it's so easy to forget what you like about each other.  All of the experts talk about the necessity of "date nights"...of having time just for the two of you.  We KNOW! We KNOW! But reality just doesn't always allow that- especially when finances are involved.  Charles and I want to have time for just each other.  We know we need time for just each other.  But it just doesn't often work out that way.  So, as I sat across from him at dinner the other night, I suddenly said, "You know what?  I really like you.  I'm really glad I married you."  Because it was so nice to talk about something other than kids schedules and bills and work. I've also recently had a reality check.  Someone I'm very, very close to is having a very difficult challenge in her marriage.  A challenge where her marriage might not be able to be saved.  It was a wake up call to me and inspired part of our conversation in which I asked if there's anything I'm not doing, or that he needs me to be doing within our relationship so that he feels cared about.  It was a great conversation.  The kind where you realize the real reasons you are making it and will likely always make it is because we communicate.  It was one of the first things I fell in love with Charles about.  That although his communication style may not always be perfect, he is always willing.

I'm feeling a lot of satisfaction right now, mixed with a little bit of relief.  We've managed through not only two beautiful parties in celebration of our boys' births, but a wonderful visit with family, and a chance for Charles and I to re-connect for a little while.  That's huge.  That is a chance to feel ready to face the day to day challenges once again.  Until August.  When it is my turn to celebrate another birthday.  This is a landmark year.  The big 4-0.  I am convincing myself that 40 is the new 30, and frankly I don't look 40 anyway.  





Monday, May 9, 2011

All things "Great" and small

My head is swirling. I should be cleaning, but because my head is swirling, I'm going to write. I have soap box issues. It's true...there are things I feel passionately about and sometimes feel like I need to stand on a box and shout to the world to listen. This must be why I have linked three different posts to my Facebook status- today alone. One was a very moving video called "Dear Sixteen Year Old Me" about avoiding Melanoma, which I promptly sent to a handful of my ballet dancers. Then there was my friend Kristi's first blog post about the benefit of community service- I had literally just mentioned that it feels almost selfishly good to do things for others- and there was her post, reiterating the same feelings. The one that struck the deepest chord for me was this one: Just a Word. It is the most satisfyingly articulate blog post about being held accountable for using the "R" word. I've had my own battles about the "R" word- because I think it's used so unthinkingly. Despite the fact that a person may not intentionally be meaning to demean a person with intellectual disabilities, the intent IS to demean (oneself or another). And by default, people with intellectual disabilities are thrown under the bus, because year in and year out they have clinical evaluations that include the words "Mental Retardation". I want to be clear: I do not think of my baby Elijah as being retarded. And frankly, I don't think I ever will. However, for some reason, I now get an actual physical, gut wrenching reaction to the word. Like a knife to the heart. I can't help it. I know there are some that would say that I am choosing to allow a word hurt me. Believe me when I say that my immediate reaction is beyond a choice. I do choose not to rip someone's head off for saying it. I do choose not to get into why it's a word I dislike with everyone who says it. But, my gut wrenching reaction is certainly NOT a choice. Anyway...despite my previous statements about feeling the need for a soap box, I am not going "there". Not tonight at least. However, I did want to post again what one writer said (that I really wish had been me) about the effect of the "R" word. So click here. Please take the time to read it. It's worth it.

Right now, I'm making a choice. The choice to talk, instead, about my delicious weekend, in which my firstborn turned FOUR years old!!!  He took it in stride, and has been practicing holding up four fingers, instead of just three now.  We have a party for some of his friends and family planned for this weekend, but we wanted to do something special for him on his actual birthday. Friday delivered some beautiful weather, so we pulled out the garden hose, filled up an inflatable pool and enjoyed the weather. (Of course as I type, it is RAINING. It's raining and we have a "pool' party planned for this weekend.  Great....But, I digress...) 


Elijah's not as much of a fan of the water, but he loves his swing...


Saturday morning came, and after a rousing birthday song, we packed up to enjoy the pancake breakfast at a friend's fire station.  The highlight (besides the pancakes...Yumm!!) is the fireman's challenge.  Christian did great!


That afternoon, we headed out to the PBS Dinosaur Train event in celebration of National Train Day at the Los Angeles Live Steamers Railroad Museum.  We danced with Buddy the Dinosaur (well... Elijah and I danced, Christian hid behind me and Charles watched from the sidelines) and rode the miniature trains around the park.  If you live in the Los Angeles area and have not been to this museum, you should make it a priority.  It is fantastic!! (Great?)


Sunday was Mother's Day.  We kept it simple.  I got a nap in, and we spent the afternoon and evening with my Mom and Grandma, while Charles and my brother, Bill, made us a delicious meal!  Sadly, my sister and Dad were not able to be with us, as my sister is recovering from a major jaw surgery in Texas, where the surgery was performed.  You can read more about her story here. It was a slightly more restful day than normal...though, it was proof that a Mother's job is never done. :)

I woke up to cold, hard reality when Elijah woke up with a goopy eye.  I didn't think too much of it at first- thinking that it could be a small recurrence of the blocked tear duct he had the first few months of life.  However, by the time he woke up from his afternoon nap, his eye was producing more goop (there has GOT to be a better word for it than that, but I cannot think of what it would be!) and by then his eyelid was starting to swell.  A quick call to the pediatrician and we were on our way in for a check up.  Sure enough, he has some type of conjunctivitis that is getting infected.  I don't know what it is about the thought of conjunctivitis, but the second I so much as think the word, my eyes start feeling itchy.  So far, my "symptoms" seem to be completely psychosomatic, with no actual concerning manifestations.  Good thing, because my Mother in Law comes into town on Wednesday!

I'll leave you with nothing soap boxy, nothing too fraught with cold, hard reality, but a funny/horrifying story:  We have just returned home from the pediatrician, when Christian announces that he's going out into the backyard.  I suddenly hear him yell (in the most excited voice I may have ever heard), "MOM!! There's a dead mouse in the backyard!!" Great. (This is the 3rd one this month...the cats in the neighborhood have clearly been busy.)
At least my firstborn thinks it's cool, because I really, Really do not.

Thursday, May 5, 2011

The Scoot

I'll start with the proof: Elijah is scooting. With intent. He is motivated and he gets pissed when he can't get what he wants.  (Be sure to scroll to the bottom of the page to pause the music, or turn down your volume so you don't get clashing music and video narrating.)

The week has been really big for Elijah- a new tooth, improved mobility, signing "All done" (although still a little inconsistently) and catching a cold.  We saw our PT today, who was amazed and impressed with Elijah's new scooting skills since she saw him last week.  I wonder if our therapists knew going into their jobs that they would become part physical or occupational therapist and part psychotherapist.  Maybe other parents aren't like this, but I feel like I can tell them anything.  And do.  Our PT today was just lucky I didn't start crying.  I have been so emotional the past couple of days- feeling like I could (and sometimes do) just break out into sobs.  It's probably just hormones because most things aren't really that big of a deal, but I feel like a lot is getting under my skin.

Christian's preschool had their Mother's (and Grandmother's) Day program today.  Christian's class had us each make a "memory rock" by decoupaging a picture of our child, and words like "Home", "Happiness" and "Love" onto a smooth stone. When we first arrived, Christian seemed fired up to do the rock project, but about one decoupage in, he was ready to go play outside.  On the outside playground there were little flower pots that the kids could decorate and plant a flower in, and then add soil and water. My pot got no decoration- not a single sticker- but he did want to plant a flower, so I took that as a good sign.  Once the flower was planted, he was pretty much done with me.  He ran to the water table and never looked back.  I was bummed.  He seemed like he could care less that I was there.  I went back to go check out the hand print Mom project each student had completed.  It was a painted impression of Christian's hand.  At the tip of each finger was a statement about Mommy that came off the finger like a ray of sun. Christian said this about me:
Her favorite color is green. (Nope.  HIS favorite color is green. Mine is actually aqua blue.)
She smells like Tacos.  (This might actually be true.  I do love tacos and make them frequently.)
I like to sleep with her.  (While a slightly startling sentence to read, it does warm my heart a little, because he rarely sleeps with us, and only has for a nap or two here and there when I've been desperate for some sleep.
I like to eat with her.  (Okay. That is actually true- he likes picking out his chair and mine at lunch and dinner time.)
Her favorite food is peanut butter and jelly. ( One guess as to whose favorite food that really is?  Not mine.)
My friend Katherine was reading along with me and she said, "I think he might have been hungry when they asked him these questions."  Yeah...I'm thinkin' that's probably true.

I made my way back to the water table where Christian was still entranced and stood by, unnoticed.  My inner monologue was saying, Grab some buckets and play with him.  But I was just feeling let down.  Getting words of affection out of this kid is never an impromptu situation.  The only I love you's I get is when I ask for them.  I know Christian loves me- there is no doubt.  While he doesn't look at me with quite the same adoration that Elijah does, he still has this special "I love my Mom" look. But, still...It's nice to hear it every once in awhile. Maybe in time...

I've had a rough week.  As I said, it might just be hormones, but I'm feeling a little frustrated by I'm failing across the board.  My patience is definitely short these days, and I feel like my kids end up the victims of that.  I can't even contribute it to any one thing, but I guess I just needed to say that I'm fighting this week.  Fighting to not feel pulled down. Fighting to get back to some balance with my patience and tactics with my boys. Fighting to remain optimistic about the bigger, tougher issues in life (Taxes, Health insurance changes, Getting Medi-Cal for Elijah...) Fighting to not totally curl up into a ball.   Sigh. So, I think I'll keep this post brief, with the upshot being Elijah's cute little scootin' patootie.  Even when I'm bummed out, just the thought of that little guy makes me smile. 

Funny reality check of the week: I had just gotten into the car with my boys, was heading out and was running exactly on time, when only a block away from our house, I was gridlocked in some stupid traffic nonsense.  I got a little road rage-y, and Christian says from the backseat (in the voice of a teenager) "It's okay Mommy! Calm down."  It was a wake up call.  I took a deep breath, stopped the car at the stop light, turned around to look at Christian, put my hand on his knee and said, "You're right sweetie.  Thank you."  He was very proud of himself, and then seemed to think that the words "Calm Down" have magic powers....I don't know, maybe they do...