Wednesday, August 17, 2011

Patience

When Elijah turned one, it was as if a switch went off for him: "Uh-oh, I'm one.  I better start doing some stuff."  It seemed like week after week he was hitting new milestones.  Recently, though, we've been on somewhat of a plateau. He's not losing any ground, is still getting stronger, getting more hair, getting faster at scooting around, but the big things haven't been showing much sign of improvement.  The last week or so, I've been actively trying to not get down about it.  For example: Sitting. He can sit.  He just won't.  I mean, literally 2 seconds after I put him into a sit position he's flinging himself out of it, so he can scoot around instead. I get that the scooting is more exciting- he can go where he wants and do what he wants. But, he needs to be sitting.  He has a very weak core and sitting can significantly help strengthen that.  He also isn't making any progress on getting his scoot to be less synchronized.  Currently, it's like a synchronized military crawl, instead of an arm-leg, arm-leg maneuver as it should be. The other big one- maybe even the biggest one, is that he hasn't shown any interest in self feeding...until SUNDAY! I got my first glimpse of him starting to catch on late last week.  I put some puffs down on the highchair tray in front of him and he picked one up, put it into his mouth, and ate it.  Cue the hallelujah chorus.  I even texted our Occupational Therapist to say, Guess what?? But, it was just ONE puff. The rest were swiped to the floor.  But, it was still one, at least.  Everyday since then, I put puffs down for him at each meal.  Then I have Christian stand in front of him, get his attention with a puff and eat it in front of him so he can see it being modeled.  (Let's face it, though, if Elijah gets puffs, then Christian wants some too.  So, I put him to work for his puffs.  "Will work for puffs".  Sounds like a new bumper sticker to me.)  On Sunday, when I put the puffs down, he picked one up and ate it.  I had turned my back to put the puffs canister down, when Christian started excitedly shouting, "He ate a puff, Mommy! He ate a puff!" Sure enough, he was chewing.  Then, I watched as he picked up another puff, put it in his mouth and started eating it.  Now, this was two in a row.  I started jumping up and down and Christian started jumping up and down and we were laughing and shouting and shrieking, "He's eating the puffs!! He's eating the puffs!!"  Now...I am prone to excitement.  When my ballet girls get something they have really been working for, I will do a little happy dance complete with tiny, hand clapping.  However, the kind of jubilation I celebrated on Sunday may not actually be equal to anything I have ever done.  A stranger watching through the window would have thought we just won the lottery.  Elijah kept right on eating those puffs-about 10 in a row, looking at us like, "What's going on? (munch, munch, munch) What are you people so happy about? (munch, munch)" It was as if he had been doing it his whole life.

On Monday, Elijah impressed me yet again. He was clearly tossing a ball back and forth between himself and the therapist.  It wasn't perfect and sometimes I wondered if it was accidental...but time and again he'd pick up the ball and then let it go in her direction. The therapist and I looked at each other like, Are you seeing what I'm seeing? Though not the improvement in the areas we've been working on, it was encouraging to see this milestone starting to shape up.

I needed this. I really needed this. And, as if Elijah has some sixth sense about how much I can take, he delivered. Just when I needed him to. Maybe it is just timing, but we have a history:
When Elijah was a newborn in the NICU at the hospital, the doctor first told me he would probably only need to be there for about 3 days.  Then the 3 days turned into 5.  Then the last doctor told me he might be in for another 7 days...unless Elijah really made some turn around overnight, it could be 7 more days, but he really couldn't be sure.  I was at my breaking point.  I was really starting to lose it.  It was confusing because the doctors and nurses kept saying how great he was doing, but the days kept being added on, not subtracted.  When I went home that night, I lost it.  I had never before experienced what I think true depression must be like, but I think that was it.  I was a walking shell by the time I got to the hospital to visit him the next morning.  I walked in to the NICU on the verge of more tears only to be greeted by the nurse: "Well, Elijah has been doing great!  We were able to take him off of the oxygen last night and he's been breathing on his own ever since.  It looks like he'll be going home with you tomorrow." I nearly melted into the floor.  All I could think was Thank you God, I don't think I could have taken much more

There was also his first smile.  When Elijah was 9 weeks old, I was noticing and worrying because it didn't seem like he was able to focus his eyes.  (He has since been diagnosed with a harmless condition called Nystagmus, which is a slight pendulum effect to his eyes. It is if he is looking left to right and checking things out.  At 15 months, he still has this, but the severity seems greatly reduced and he can focus his eyes well now.) With extra high odds for him to have a dual diagnosis of Autism, I was terrified.  Could this be an early symptom? Why won't he look at me?  Why won't he smile?  I sat on my bed with my knees pulled up and placed Elijah straight in front of me- I kept moving my head to try to get his attention, and just as I was about to break down crying because he wouldn't do it, his eyes stilled, he looked straight at me and gave me a big smile- his first intended one. Tears of happiness sprang from my eyes in the most unexpected way and I'm pretty sure I said, "Oh sweetie, Thank you! Mommy needed that.  Mommy really needed that."

The last couple of weeks I have been really starting to internally struggle to stay optimistic despite the fact that it is all taking so long. I'm seeing a lot of other kids his age, or close to it, with Down syndrome, who are doing WAY more than he is.  It is sometimes hard to stay focused on the big picture and remind myself that WHEN they accomplish a milestone is not really an indicator of the bigger picture. But...the last couple of weeks I've been struggling to remind myself of this.  Elijah is a joy to be around, but boy is he stubborn.  He just does not want to do what he does not want to do.  That is for sure!  I've been holding strong and being patient for quite some time and it wasn't much of a struggle to do that.  However, recently, I find myself more frustrated with the lack of progress in the area of gross motor skills.  My brain tells me he'll get there, but my heart says when? when?

I'm taking deep breaths, doing extra yoga, and venting about it to Elijah's therapists. No wonder "Patience is a virtue"- it's so dang hard to maintain. Most days it works to just be in the "now" and enjoy where he's at- after all, he won't be a baby forever.  Then there are the days where the patience for "right now" goes out the window.  I guess I wouldn't be human if that weren't the case.  I'm hoping that getting it out in my blog will also release a little bit of the frustration for now.  I'm realizing that it's not just about being patient with Elijah and when these milestones will happen, but it's also about being patient with myself. I'm not always going to be able to be perfectly optimistic about it all. There is no amount of yoga or proper eating or attempted mind control that can completely prevent impatience and frustration.  So my best line of defense right now is to just allow the feelings. To say, Today I'm frustrated. Tomorrow is a new day.  I am not in control of Elijah. I am only in control of my actions. My feelings are a different story...and that's okay.
 
You must first have a lot of patience to learn to have patience. - Stanislaw Lec





Sunday, August 14, 2011

Who am I now?

I'm starting to feel like me again.  Maybe it sounds weird to read that, or maybe you can relate.  I was me before having kids- having political views, having societal opinions, having a full time career, driving the car I wanted (well...the car I wanted within the price range I could afford...), keeping my house the way I wanted, dividing my time the way I thought it was best used, and on and on.  Then I had Christian- who rocked my world in all of the best, and most confusing ways.  I had never felt the degree of that kind of love before, never felt the fierceness of protection that way before, but also between nursing and sleep training...and generally raising a child, I felt at a little bit of a loss about who I was. I thought, Who am I now? I'm still all of the things I was before, but so much was changing and shifting within my situation that I was left scrambling to put my identity all the way back together.  Just about the time that we got pregnant again I was starting to almost feel like me: the new me, the me that included being a Mom and all that that means, along with everything else.  Then we got pregnant with Elijah. Then we got Elijah's diagnosis.  And all of the work I thought I had done in trying to figure out who the re-defined me was, was all rearranged again.  Now I'm the Mother of a child with Down syndrome?  How does that factor into who I am?   It's taken me a lot of processing to deal with that one, but Elijah himself has eased that transition a bit.  What I know about that is this: I didn't have a child with Down syndrome because I'm damaged.  I believe Elijah is in my life for a very important reason.  I believe I am a Mother for a very important reason.  I don't entirely know what those reasons are but I think it has something to do with learning. Ultimately, with all of the adjustments that come with becoming a Mom...then a second time Mom...then a second time Mom to a child with special needs, I wasn't unhappy, I just didn't feel all the way like me.

I have been on a special diet for the last 6 weeks.  It has actually been an eye opening process.  It reminded me of how disciplined I can be when I really want something. I think back to my younger self, at around age 14, when I was SO determined and disciplined to become a dancer. Nothing could derail me.  I've seen glimpses of that girl in the last 6 weeks.  My workouts have been varied, but consistent.  My diet has been nearly by the book. I don't weigh myself, so I don't know how much I've lost, but the changes are noticeable and I've dropped a dress size.  I think because I'm starting to look like the me I was before kids, I'm starting to feel a little more like the me I was before kids.

Tonight I pulled out an oldie but goodie: The living room dance.  I turned up the music (on my ipod headphones.  I have sleeping kids.  Let's face it- I'm feeling bold, not stupid.) and let the music (The Black Keys) take over.  The living room dance is about being totally free, not judging myself, and is the ultimate expression of how I'm feeling.  For most of my life, I have expressed myself through dance, so to not be doing that regularly leaves me feeling...a little less me.  I teach ballet, and ballet is a huge expression of a lot of things for me, but it's not the same raw, freeing feeling that I sometimes need.  That's why I need the living room dance.  I haven't done a living room dance in at least 6 months.  But, tonight I found myself in a quiet house and with a strong urge to turn the music up and let go. Let go, I did.

This week I hosted an event conceived by my friend Lori.  The suggestion was to rent one of those large, inflatable waterslides and have a Splish, Splash and...just to make it fun for the Mommies..Sangria (!) Playdate.  Since these waterslides are HUGE.  I was the only one with a yard big enough and durable enough to take the abuse of this kind of playdate.  So, we got this:

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Our "Sangria" was really just a little sparkling wine with some cranberry juice, OJ and frozen fruit in it.

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 Christian had an amazing time and got bolder as the day wore on...(after a semi-traumatic incident as the waterslide/bounce house combo deflated around him because I accidentally unplugged it while he was jumping inside...this was BEFORE the sangria. I promise.)

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Christian gets full air...

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Elijah napped through the whole experience and woke up only as our last guests headed out.  I decided that it's not often that you have a giant, inflatable waterslide in your backyard and that we should seize the moment and Slide. Since it was just me and my little guys, I have only this self portrait to prove that we did indeed slide. Over and over again. (Well...Elijah only slid with me once- I don't think the shock of quickly sliding down a large, unknown surface and getting spayed in the face was quite what he expected. So, Elijah hit the swing instead.)

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Sliding with my kids made me feel young and spontaneous (and next time we do a Splish, Splash playdate, my Mommy friends will get the peer pressure to slide.) It was uplifting.  I used to consider myself spontaneous, and I'm realizing I still am.  It just looks a little different.  I may not be able to leave the house alone on a whim and do something crazy, because there are babysitters to plan for, time to carve out and instructions to give.  But, I can say, You know what? There is a giant waterslide in my backyard and I am All In.

I'm finally feeling like me again and realizing that I can be all of the things I was before kids and all of the things I am after kids and together they can be pretty great.  Just because I'm a Mom doesn't mean I can't be back in shape, it doesn't mean I won't be spontaneous- though the circumstances may be different, it doesn't mean that I won't do the baddest, longest, sweatiest living room dance ever.  I can do all of those things and it's pretty cool to be knowing that.

This is me.  This is me on kids. See?...not that different.
Don't let the mini van fool you.

Tuesday, August 9, 2011

Soap Box

I'm bugged. I feel like a can of worms got opened today and I'm really bugged. The Special Olympics blog page released an article about Universal Pictures' continued use of terms of bigotry in the recent film, "The Change Up" where Ryan Reynold's character asks Jason Bateman's character if his young twins were “retarded” because they weren’t speaking, and then quipped “I don’t know, this one looks a little Downsy.”. (Just one year ago, the studio was blasted for using the word "gay" as a derogatory term in the trailer and film, "The Dilemma" with Vince Vaughn.) Click here to read the article: http://specialolympicsblog.wordpress.com/2011/08/09/universal-pictures-thinks-biggotry-is-acceptable-and-marketable/   

This brings up a lot of feelings for me, because just after giving birth to Elijah, I was vulnerable, worried and assailed by ridiculous language used by the NICU nurses at the hospital. These were NICU nurses who said that they worked with many children with Down syndrome.  Actually...they didn't say that- they said, "I work with Downsies all the time."  "We love the Downsy babies."  Or, some whispered the word Down syndrome...or actually avoided saying it at all.  Think about it, putting some weird adjective in front of the word baby, kinda makes it like it's not a baby at all. Like these human beings are some sort of...Chia Pet. I actually had to remind myself (with much relief and peace) that I did, in fact, give birth to a human baby boy. I was far too hormonal, shocked, and worried during Elijah's short NICU stay at the hospital to even begin to know what to say.  After some tears of frustration this morning, I've decided to do something about it. I've decided that it would be easy to say too much time has passed. I should forget about it.  The reality is that there are women who will go through the birth of a new baby with Down syndrome for years to come.  If...and it is a big IF...I can make even the smallest impact on one hospital nursing staff, maybe...maybe...I can make one woman's experience a little better than my own. It's worth that shot.

Dear Senior Vice President and Chief Nurse Executive (name withheld on blog),
      I had the pleasure of meeting you over one year ago, when my baby boy, Elijah (who is diagnosed with Down syndrome) was born at (Unnamed) Hospital. The fact that you took time out of your day to say hello and to tell me about the fact that you have an adult son with Down syndrome, meant more to me than words can accurately express.  You were one light amidst an experience that was fraught with insensitive, ignorant language and actions. I was so shocked, worried, and hormonal at the time of my stay at the hospital that I could not even begin to consider addressing some of my experiences.  Now that more than a year has passed, it would be easy for me to tell myself to "Forget about it- too much time has passed."  Instead, I want to share with you a few of my experiences in hopes that they will be shared and potentially give another new mother, down the line, a more positive and supportive experience.
    I want to start by saying that, overall, I found the nursing staff to be a very caring and considerate group.  It is for this reason that I want to highlight some of the language they used that unfortunately made my experience more difficult.  Due to the amount of time that has passed, I do not remember the names of the specific nurses, despite the fact that their words are emblazoned on my brain. My goal is not to create problems for specific nurses, but instead to enlighten how their word and action choices affect new Moms.
    I received a prenatal diagnosis of Down syndrome, so when I was admitted into the hospital to give birth all of the nursing staff had been informed of my baby's diagnosis.  The moment Elijah was born, he was taken into the corner to be evaluated. (No moment of being placed on my chest or belly, as I'd had experienced with my first born son- also delivered at (Unnamed) Hospital.) When my Mom, who had been in the delivery room, walked over to see Elijah as the nurses checked him out, they started whispering as soon as she approached.  My Mom said, "It's okay. We know he has Down syndrome. You don't have to whisper."  While Elijah's Apgar score came in at a good number, his oxygen saturation was low and so they did need to take him to the NICU. I had a moment to hold my beautiful son before he was whisked away.  An hour later when I walked over to the NICU to see my son (Thank you, natural delivery--quick recovery!!), I met one of the nurses who refused to utter the words Down syndrome. Instead, it was things like "Babies like this", "Babies with this condition".  Honestly, it made me feel a bit like they were acting as though my son wasn't even human. That he was a "condition" alone.  The next nurse on staff talked to me about how she's "worked with many Downsies. And loves Downsy babies." This also felt like she was describing some sort of breed of puppy and not my beautiful baby boy. My stay was only a couple of days, and my son's stay was only one week long.  Since then, I've gotten over the shock of people putting my son's condition before who he is as a child.  Whenever it's appropriate, I try to encourage them to see him as a child first.  A child who happens to have Down syndrome.
   My hope is that my letter is used not to reprimand, but instead to educate your staff about the power of People First Language. I don't think it's about making words off limits.  It's about putting a person (even a baby) first. To describe a person by the diagnosis first and foremost is de-humanizing. While there is only 1 baby born with  Down syndrome out of 742 live births, and the occurrence is somewhat uncommon at (Unnamed) Hospital, the idea is the same for any diagnosis.  I'm sure the nursing staff in an oncology department need to be reminded now and again that although they are helping to treat cancer- it is a person with whom they are dealing, first and foremost.
     I felt comfortable in sharing my thoughts with you, not only because of your position at the hospital, but also because of your position as a Mother.  I wish you and your family the best and hope that you will consider sharing my thoughts with those that could make a difference in the quality of a patient's care.
Very Sincerely,
Jennifer Currier

P.S. Here is a picture of my son, Elijah- now 15 months old.  He loves music, smiling, laughing, bath time, and books.  He is not as fond of sand in his mouth, being left alone, and when his older brother teases him with toys. :) He is a joy and a blessing to our family.

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I'm grateful to have this blog as a place to work out these feelings.  Frankly, I don't feel comfortable or safe to actually talk about it with many people in my life.  Eyes have been rolled, inside "jokes" shared, and silence has been heard. Therefore trust has been lost. I don't really know who reads this blog or whether any of my rantings, inspirations or plans mean jack squat to anyone.  I have a stat bar that shows me that people come across my blog.  I get a comment or two here and there (usually from the people who have a child with Ds and understand the need to feel supported), but most people just stay silent. I understand that many people don't know what to say. This is not a blog about gardening. It's about my feelings and it is actually nice to have someone say, I hear you. I don't know if this letter I've drafted will get immediately tossed in the trash, or if it will be brought up at the next nurses staff meeting, but I think I had to write it to let the old demons go.  The demons that I wasn't fully aware of until today (while gardening--Who knew?). I was reliving and weepy about what my experience was that first week of Elijah's life.  I haven't sent the letter yet.  If you think there is anything I should add, delete or re-word, I am very open to suggestion.  My goal is to send a letter that explains how I was affected without coming across as reprimanding or bitchy. I know my tone of voice, but since it is a letter, the receiver will not.  Your thoughts would be appreciated. 

Sunday, August 7, 2011

A-ha Moment



Today I had what Oprah would call an "A-ha moment". A good friend of mine had a 40th birthday party this morning. She decided to do a day that was not all about her, but about all of the women friends in her life who inspire her. She had a nook in which we could create an inspiration board (a collaged board about what we hope to accomplish or change in the coming year), she had a "meditation room" as a place for her friends to take a moment of refuge, there was a beautiful spread of vegan fare, mimosas, and shopping. It was lovely, but the a-ha moment for me was when she had friend/mentor/client/comedian Kathy Buckley speak. I was already a fan of Kathy's...not because I've ever seen her comedy, because I hadn't, but because my friend has always spoken so highly of her, and because she was quoted on the back of Jagatjoti Khalsa'a coffee table book, "Down With You". I pulled Kathy aside to say hello and ask how she knew Jagatjoti. We got into a fascinating conversation. First of all, if you know Kathy Buckley (and to be honest, I didn't.)-she is a deaf comedian. She reads lips exceptionally well- to the point that you forget that she cannot hear. However, for the first 8 years of her life, her parents didn't know what was wrong with her and put her in a class with (in Kathy's words) the retarded kids. 8 years is a very long time to go without language. I can only imagine the frustration of being more cognitively aware than every other kid in a classroom, but without the ability to express what you know. Kathy comfortably dropped the "R" word more times than I can count. It was pretty jarring to hear...I have to admit, my heart jumped each and every time, despite the fact that I was fully enjoying what she was saying. I didn't feel it was important or appropriate to ask her to consider a different word. She wasn't using it as a means to degrade anyone, it was used more factually. It was also where I realized that sometimes a woman over 50 who has devoted her life to helping people who are different (those with physical disabilities, like deafness, and those with cognitive disabilities, like Autism and Down syndrome) might not be open to suggestion...and that perhaps the wisest and kindest thing I could do would be to take the pearls of wisdom from her where I could and continue to fine tune my ability to educate and share with people the power of their words. As I said, it was a fascinating conversation. This, however, was not my "A-ha moment".

Kathy shared  some of her comedy with us (Hilarious!!!), but in it also talked about the fact that she never appreciated her body.  That at 30, she hated the way she looked.  Then by 40, when she looked back on pictures of her at 30, thought, "Wow. I was hot!"  Now into her 50's she has decided to appreciate what IS.

A-ha!

I've thought a lot about this, appreciating what is, lately.  It doesn't mean that if you have a goal for yourself or your body that you should just say Oh well and learn to appreciate it as it is.  It does mean to appreciate where you are now.  Right now, I'm having a lot of appreciation for my body.  I am going on week 6 of a diet and fitness plan to get back the body (mostly the waistline) that I had prior to kids.  It is working.  My body has been quickly responding to the diet choices and exercise plans I've been sticking to and frankly, it feels great!  It feels great to be accomplishing a goal. To be persevering. To be determined.  It also feels great to  reclaim a little bit of the "me" that existed before kids.  Furthermore, it feels great to feel my body growing stronger each day.  Since yoga has been a practice that I can measure my strength by, I get excited as poses that used to seem impossible or unattainable are finally becoming a reality.

My girlfriend had her 40th birthday party today, and 40 is staring me in the face just 3 weeks from now.  I am not afraid.  Yes- I feel like, "Where has the time gone?? How did I get here??" But I am here. Why not stand proudly and boldly behind my age? I will not be hiding my age. I will be appreciating where I am now.  I will take seriously the fact that I am a role model for my sons and for my ballet students.  My life has been filled with bad choices and good choices, passionate living and all of the stuff in between.  I can only attribute all of the lessons along the way to the number of years I've been alive. These years?: I've earned them.

I started my day with some inspiration and had the rest of the day with my boys, a swimming pool and some friends to soak it all in. 

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This hat is the cutest dang thing you have ever seen and despite the ties that I had added, Mr. Elijah insists on pulling it off...sigh. :)

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Elijah and I enjoying the pool!

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His eyes always look so blue when backed by a Little Tikes swing...


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Thoroughly enjoying a snow cone...


 Friends!  (Overheard at their table: Hey! I'm four...and you're four...and you're four...and you're four.  We're all four!") Hooray!


At my friend's party today, we were asked if we had anything we wanted to say to her, any words of wisdom.  Now that I've had a little time to think about it, I would say: You are fabulous. You have earned every year and that is not a bad thing. Own it. Be bold behind it. Other women will learn from you...and you will learn from other women who have gone before you.  

Now...I have 3 more weeks of 39 to be bold behind and enjoy...so, I'm off! :)
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