Tuesday, June 29, 2010

A small victory

I'm a pretty big procrastinator. Especially when it's something I dread doing: the laundry, the bills, calling to yell at the cell phone company for getting the bill wrong...oh no, wait. I don't mind yelling at the cell phone company. Despite my tendency to procrastinate, it turns out that when it comes to fighting for my kids, I'm pretty bad-ass. Since my youngest son has Down syndrome, he will need additional therapies to help minimize his developmental delays. The state has programs that will pay for children with special needs to be evaluated and seen by all necessary therapists, but they are going to make it as. hard. as. possible. Maybe the thinking is that if it is just annoying enough, we'll give up and the state can keep their money. Yeah...no. Not this Momma. I'm not perfect here, because it did take me 8 weeks to fill out and submit the 14 page application form to get the ball rolling, but I blame nursing, sleepless nights and overwhelm (14 pages, people!!!!) I did finally receive a letter from the Regional Center that will assess Elijah. It basically states that they will need some insurance coverage information because due to budget cuts, all services will first be billed through insurance, if you have it. I had a ton of questions and tried to contact the case worker assigned to our case. That was last Wednesday. So, on Friday when I hadn't heard back, I called again. By today, Tuesday, still no word, so I emailed. And left a message. It went something like this: (Nice, bubbly, Mary Poppins-like voice) "Hi, this Jennifer Currier- Elijah Currier's Mother - and I have some questions about the letter I received. You can call me back at your earliest convenience, or (change to Cruella DeVille voice) I will just continue to call you until I reach you." Choices seem to work well for my 3 year old. I say "Would you like to walk to the car or should Mommy carry you to the car? (Either way, you're going to the car, Bud.) So, I figured maybe our case worker needed some simple choices: Call me back or I will call you and irritate you everyday, multiple times a day, until I speak to you. (Either way, you're gonna have to talk to me, Dude.) Interestingly enough, my call was returned a few hours later. So...yay! We finally have an evaluation set up for Elijah! I'm a little nervous about how it all works and what it all means, but I seem to be a quick study for cutting through the red tape. I won't be patting myself on the back too hard, because I know this is just one very small step in what will likely be a long road, but today I'm feeling just a little victorious.

My Aunt Carol, her hubby and my Cousin Rachel were in town this last week. I don't get to see them very often, and I hadn't really gotten to talk to my Aunt about Elijah's diagnois prior to this visit. As we were talking one night, she would say something and then ask, "Is that the right way to say it?" or "I didn't say that right, did I?" I realized that maybe I should share with everyone (as I did with my Aunt that night) the kinder way to discuss Down syndrome. So, here are a few of the common misconceptions:

You would say "a baby with Down syndrome" instead of "A Down syndrome baby". The idea here is that you put the child first and the syndrome after, because they are a child first. Just like you would say, "I have a friend with cancer" and not "I have a cancer friend."

It is called Down syndrome, not Down's syndrome. (I didn't really realize this myself at first.) So, even though you'll hear many people call it "Down's", it's really not. You're just stuck with spitting out the entire phrase. D.o.w.n. s.y.n.d.r.o.m.e. :) There's nothing really shorter...except Ds, which I often write and some people even say (as long as they're talking to people who already know the term.) I personally don't say Ds when I'm talking because I think our culture has already been reduced to too many acronyms. OMG. Lol! JMHO, tho. (code breaker: Oh my gosh. Laugh out loud! Just my humble opinion, though.)

A child who doesn't have Down syndrome (or any major developmental delay) would be called "typically developing" instead of "normal" ...cuz let's face it, what is "normal" anyway?

And definitely, under no circumstances should you ever refer to a child with any kind of developmental delay as "retarded". In fact, it has very much become a bad word, and has been deemed the "R" word. To fit right in alongside the "N" word. You just don't say it. Unless you're referring to yourself. in sarcastic humor. whilst laughing. But, some people are still sensitive about it, so maybe not even then. Feel it out first.

These are the ones that seem to make the most sense to me, and the ones that I've chosen to adopt because they feel right. With that said, though, I don't take offense when any of these things are said the "wrong" way. So, PLEASE, don't start second guessing some conversation we've had and think that you've highly offended me. If you had, you would know. ...Or at the very least, gotten my Cruella DeVille voice.

And since this blog is all about me and my boys, but has very few pictures of me with my boys, I've included a recent pic of me and my littest sweetie:

Saturday, June 26, 2010

The Best Milestone

He did it. Tonight at just a little past 11:00pm, I got what I have been praying for (in fact, just less than an hour after one of my prayers): Elijah smiled at me. ...On Purpose. Then he did it again and again. Four big, beautiful smiles while looking right at me. Tears sprung from my eyes. I mean, the tears literally sprung and flowed down my face. I've been trying hard not to be bummed that Elijah doesn't really look at me, and because he doesn't really look at me, it's tough to get that first intended smile. But, tonight, I decided to try again with him. I rested him against my pulled up knees and kept trying to get his focus...he bobbed and weaved for a bit, but eventually settled and looked right at me. I was thrilled and ready to call today a success, when he responded to my ear to ear grin, with a cock-eyed grin of his own. Oh happy day! After the third smile, (where I half wondered if it was all some kind of mirage) I challenged him and said, "Come on, give me one more just so I know it's real", and...ask and ye shall receive! Since he seemed to be in a pretty smiley mood, I tried to capture in a photo, what that beautiful smile looked like. This was the best I could get, but it still makes me happy:

It was a full week for us, and yesterday was my first OB appointment since Elijah was born. I wrote a Thank you note to my doctor, Dr. Kim, but the words just seem so insignificant compared to what I really feel. This is a doctor who brings new meaning to the words "bedside manner"- she supported, encouraged and shared her faith with me throughout my pregnancy. When Elijah was born, she asked if I would like her to pray with us (!!!) I said, of course, yes. She grabbed my hand and prayed for my baby's health and for him to be a blessing to our whole family. I can't imagine that there are a lot of doctors in L.A. who offer to pray with their patients. Speaking from experience though, it would be nice if there were more who did. Despite feeling like my words were incomparable to my feelings, I managed to put together a short Thank you note and printed a picture of Elijah with his name and birth date. Dr. Kim really loved the photo and welled up a few times as we talked about how we are all doing. I left thinking about how blessed I am to have her caring for me, and incredibly touched that she felt blessed to care for me too.

Today was my 4th visit to Club 21, which is a resource program for families and children with Down syndrome. I met two more Mom's with young babies. Apparently there are 7 of us who have had babies with Ds since the end of March. It's a good amount, but also a very, very small amount when you think about the population from which we're pulled. So...there are seven of us. It kinda makes me feel like I'm part of a Superhero team. Our individual superhero powers to be determined...The playgroup today was really great. There was a Speech Therapist there to talk with us, offer advice, answer questions, etc. It was extremely helpful. It's surprising how many things set a child up for successful language skills starting at such a young age. I got a few more suggestions of things I can do with Elijah to encourage his development, and it feels really good to have something I can Do...

Well, my baby smiling high is wearing off and in it's place is pure exhaustion, so it is time to say night-night. Sweet dreams. (I know they will be for me tonight.)

Monday, June 21, 2010

The Living room dance

Being a Mom, it's easy to forget that I'm a dancer at heart. But, when I really need a release I turn to dance. Often, I wait until I have the house to myself, then close the blinds, turn down the lights, turn up the music and ...dance. I call it The Living Room dance. Mostly because...well, it takes place in the living room. It has the most space and it's just that private express-yourself-and-not-be-judged kind of thing. When I had Christian, I invited him into my Living Room dance. I turned on some great jazz music and he giggled with every waltz and jump I did. Now that he's a little older, he knows the drill...even down to the little chasse step I can do with a baby in tow. Tonight we inducted Elijah into the Living Room dance. He was a quiet participant, but I took that as a nod of appreciation. In babyland, if they are not crying, I think it qualifies as a nod of approval. And then he fell asleep...which DEFINITELY means he loved it!! :) I LOVE this time with my boys!!! It's really something to watch your oldest get such a sense of joy out of moving his body and to see your youngest lulled into a content trance by it. It's the little moments like these that make me so appreciative of the life I have.

The journey that I'm on with both of my boys is going to unfold slowly...sometimes slower than I want, but I'm going to savor each moment. Even though I find each new age for Christian a unique challenge, he is such a sweet boy and I find my heart so often brimming with pride- his recent successes in potty training and when he remembers to say "please" and "thank you" without a reminder. Then, there is my sweet Elijah...I can't put my finger on why he is so sweet. There is just something about him. I can't wait to get to know him better.

I've been trying to make a little time for just Elijah and I, where I read or sing to him. I received this beautiful book of a compilation of poems and lyrics put together by Julie Andrews. I've been reading it to Elijah and getting a giggle myself from some of the contributions. One that struck me today that I wanted to share is a great perspective on Faith:


You said to us, your arms outstretched
- a golden boy of three,
"I'm waiting for a butterfly
to come land on me."

Your dad and I were worried
We exchanged a little smile.
"You know," Dad offered tenderly,
"that might take awhile."

"Try again," I added,
"when the bushes are in flower..."
But still you stood there, motionless,
for what seemed like an hour.

"How about a game of catch?"
Dad hoped he could distract,
"After the butterfly," you said,
with confidence and tact.

We knew, as grown ups do, of course
this dream could not come true-
the tears and disappointment
would undoubtedly ensue.

Yet suddenly, from nowhere,
just the way you had foretold,
Her Majesty appeared
and settled lightly on your shoulder.

Your smile extended ear to ear.
You looked at Dad and me.
She flexed her lovely orange wings,
and you said, simply, "See?"

-Emma Walton Hamilton

So, tonight, I am trying to focus on the childlike faith that incredible things happen for those who believe...

...And just as illusive as that butterfly, I caught the smile...

One of our Living Room dance songs, "Louella" by Marcia Ball is on my playlist for your listening pleasure!

Thursday, June 17, 2010

Finding the Middle

When Christian came out of the womb, he was laid on my stomach and immediately tilted his head back and locked eyes with me, as if to say, "That's what your face looks like!" It was as if he'd already been living a lot of years and had wisdom behind his eyes. In fact, it was a little freaky. I was a first time Mom and didn't really know any better, but it struck me how focused he was right from the start. My experience is so different with Elijah... His eyes focus on me every once in awhile- almost only when he's nursing, and he doesn't turn to me when I try to get his attention with a rattle or the sound of my voice. He's not smiling yet, either. At least, not on purpose. At 6 weeks of age, Christian had big, responsive smiles, and my heart leapt with joy every time I saw one. ...Actually, it still does... Elijah smiles in the middle of nursing and the other day he seemed to smile twice during the verse, "The babies on the bus go waa, waa, waa.." from the Wheels on the Bus song. But, it also could have been gas...it was hard to tell (and no matter how many times I sing that verse, the smile hasn't returned...). The first time Elijah looked at me, I thought, "Woo hoo, here we go...he's focusing!" But, by the next day, it was like he forgot how to do it or something. Same thing with nursing. I tried removing the nipple shield and he nursed with no problems two times in a row...then, he stopped. I can get him to nurse without it on occassion, but it seems hit or miss. It feels a little bit like two steps forward, one step back. It's starting to get me down and I've been a little weepy about it the last two days. I think I'm just trying to adjust and find the middle. When I was pregnant and first learned the news that Elijah had Down syndrome, I was devastated that he would be at a disadvantage for anything. Then, I slowly came around and realized that he was chosen for me and somehow it would all be a blessing. Once he was born and we brought him home, I was on a new baby euphoric high. That has lasted awhile and now it's shifting for me again. It's not as if he's out of the range of when these milestones happen, but being a second time Mom, I can't help but note when my older child achieved the same milestones. It's not about comparing. It's about the fact that as a Mom, I live for the day when my baby really sees me and when he really smiles. I know it'll happen, but I'm starting to see some of the realities of possible delays and it breaks my heart, just a little. My family and some of my friends just see his lack of obvious physical "markers" for Down syndrome. He has them, but they seem to be subtle things right now. Everyone is quick to say how this or that "won't apply to him", or "this is normal", "you'd see this with any baby"...I've even had a few, "You should get him tested again to make sure they weren't wrong." My baby has Down syndrome. There is NO chance that he doesn't. He has a number of markers, which could exist in any typical child, but together with a diagnosis is not a coincidence. It's getting hard to deal with. I think I just need to hear this instead: "He'll get there, Jen. It just might take him a little longer." Because that is the reality. He will have some delays. In fact, I may even be seeing some already. I don't feel like I have the strength to make the mental adjustment I need and be the (negative?) voice of reason to-those-who-wear-the-rose-colored-glasses. I'm a fan of the rose colored glasses myself sometimes, but they won't help me or Elijah here.

We saw our pediatrician, Dr. Keer, today for our 2 month well-baby check up. I talked to him about how Eli is not yet really looking at me, and asked if there was anything to be concerned about. Some studies say that about 10% of children with Down syndrome will have a dual diagnosis of Autism along with the Ds. That is terrifying to me. Dr. Keer said I shouldn't worry until about 3 months. (Note to self: Worry less. Sigh.) Elijah has been gaining weight and growing inches, and Dr. Keer was encouraging today by saying, "Keep doing what you're doing." But, when he asked how I was doing, I broke down because it is just a little hard to see things moving slowly. Dr Keer agreed that that will be the hardest part. He said, "Jen, you're a bright girl, you are caring and sensitive and Elijah is lucky to have you, and you are lucky to have him." I heart Dr. Keer.

With summer upon us, I'm enjoying warmer nights spent in the backyard with my boys. The slip and slide is fired up and ready for action, the yard is in full bloom and awaiting the death rays of a long Northridge summer, watermelon, corn on the cob and lemonade are becoming meal staples and it feels good. It reminds me about the things that are important, namely the time with my family. I found myself rushing Christian around earlier this week, and I think I actually said, "Hurry up! Hurry up! We have to go- we are going to go have some fun!" ...?????....Really?? Yeah...I need a little centering. So, I'm trying to be inspired by the long, lazy days of summer that I had as a kid. We weren't scheduled within an inch of our lives, and it was fabulous. Summer was the time to slow down, and I think that just might be the recipe to finding that center that I really need. I'm discovering that there are things about my littlest guy that are going to break my heart and things that are going to fill my heart so completely that it can't feel any fuller. Meanwhile, I'm going to keep working on finding my middle. I'll enjoy my summer with my boys, eat lots of watermelon and maybe even show my boys how the slip and slide is really done...

Then again, maybe not.

My inspiration:

Thursday, June 10, 2010

I'll take an order of baby...hold the pity, please

(Elijah coming for a visit on Christian's last day of school)

I was startled by a thought tonight. Because there are so many societal misconceptions about Down syndrome, I think there might actually be people who pity me. HA! It's actually a fairly comical thought to me. However, when I first received news that our baby would have Down syndrome, I was devastated- that things were not what I expected, that there were a lot of scary unknowns, that my child might be at a disadvantage in life. After I had some time to adjust, and some time to meet other people who have children with an extra chromosome, I started realizing that life is not going to be much different than any other situation. There are never guarantees with children. I know people who had the typical number of chromosomes who managed to totally screw up their lives, regardless. I know children who are beautiful and typical in every way and are still a nightmare to be around. There are illnesses and medical conditions in any and every walk of life. When you think about it, do we ever get what we expect?

I got a chance to show off my baby boy, Elijah, the other day. It was Christian's last day of transition preschool (where I was in class with him) and Charles brought Elijah in at the end of the class to say 'hi'. It was really cute, because as soon as I told Christian that Elijah was there, his face lit up, "Elijah's here??!" and he ran over to where a group of his toddler friends were gathered around to see the baby. He elbowed his way into the front with a proud grin. It was only as we were leaving that I realized that one of the Moms that knew about Elijah's diagnosis had kept her distance. I actually really could care less...and she may have had a cold or been distracted or who knows what, so it was only a fleeting observation. But, it's totally possible that she pitied me, and as a result I feel a handful of pity toward her. It's not just because I think my youngest son is the sweetest baby I've met, or because he has been nothing but joy to be around so far, but because (if she did feel pity) of her ignorance about Down syndrome. So, for those who don't know that there's nothing to pity, or for those that have a prenatal diagnosis and think that it's something akin to a death sentence, I have re-posted a list of "Myths and Truths" from the National Down Syndrome Society. (Erin- if you're reading this- THANKS! I totally stole your idea, but think it's an important enough one to post again!)

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Might be a little different than what you first assumed? It was for me. I'll admit that I knew next to nothing about Down syndrome and had outdated reservations and fears about what it would mean for our family. Now that Elijah is here and doin' his baby thang, it's pretty hard to focus on anything negative about this little one. He's precious. He's worthy. And I am proud to call him my son. Today Elijah did something that I'm SO excited about: He latched on to nurse without the nipple shield!!!!!! I have been carrying this silicon shield around to nurse him everywhere, and while it is not the worst thing it the world, it was still an extra small struggle (to not lose it, to remember to take it with me on outings, when Eli would knock it off accidentally while nursing...) Now that he's 7 weeks old, I decided to give another try without the nipple shield and....no issue! He's a baby-nursing-pro. Call me crazy, but I'm proud of that.

I hope that the Myths and Truths from the NDSS and my experiences so far, can give just a few people a better picture of a life that was more than we expected... an extra chromosome more...and a heart full of gratitude more.

Monday, June 7, 2010

Diamonds in your eyes

There is an immense list of things associated with Down Syndrome- both physical traits and common medical conditions. The one physical trait that has kind of fascinated me is called Brushfield spots. They are little white speckles around the outer edge of the irises of the eyes. Now, that I'm 7 weeks in with my little Elijah, and the memorizing of every inch of his face and body is well under way, I've noticed that I think he does have Brushfield spots in his eyes- and I think they are beautiful. They look like little sparkling diamonds in his eyes. I've been a little disappointed because Elijah hardly looks me in the eyes- unlike when Christian was a baby and was almost freakishly focused, Elijah has been much harder to get a focused stare out of. Now, I realize that it is early to expect this, but I'm just so ready to stare into those deep blue eyes for hours on end. However, I woke up today and suddenly I got a lot of stares out of Eli! We had some good eye lock time, mostly while he was nursing. It's almost like he knew I was wanting this, and woke up today and said, "Don't worry Mom, I'm gonna memorize your face too." So, I got to memorize the inside of his eyes a little today. They are deep cobalt blue with sparkling diamonds, and are just a little almond shaped. I think I might be just a little bit envious...I was so worried about what Elijah would look like once I knew that he had Down syndrome, but now I can't imagine anything more beautiful. My sister came over last week and proclaimed, "Babies don't come any cuter than him!" Plus, today I got a handful of smiles. The smiles still aren't fully intended for me, but they are adorable smiles none the less. He smiles when he nurses. He drinks and then stops for a smile. I couldn't help but laugh and yell out, "Elijah's smiling!" Christian dropped everything he was doing and would run over saying, "I wanna see Elijah smile!" Sadly, the smiles were fleeting and Christian missed seeing them, but I have a feeling he might be the one in the family to get that first, full-out grin. My money's on Christian. You should see the subtle ways that Elijah responds to him. This baby already loves his big brother!

Elijah had his final follow up with the Pediatric Cardiologist this morning. I love that I get to say final follow up. We already had great news about Elijah's heart, but the cardiologist wanted one last follow up just in case. His heart was pumping a little bit stronger on the left side of his body, although it was almost in normal range. (The doctor said something about 15 (something) being normal and his was 16 (something), so it was almost normal at our last appointment. I know....I astound on the medical jargon.) Today, the doctor said the left side was even more normal sounding than during his last visit. He said "normal" and "perfect" a lot today. I floated off the ground just a little each time he did. So, unless something happens down the line, we won't have to be going back to see a pediatric cardiologist. Woo hoo! Plus he's gained a little more than a pound and a half and grown almost an additional 3 inches in a month!!

Oh my little Peanut, I couldn't be more in love with you!

Saturday, June 5, 2010

Musings of the week

Somebody loves his big brother!

It has been a busy (but in a good way) week. My Mother in Law is here from New Jersey and has been a much needed reinforcement. Because she's here and always wants to help out in any way she can, I was able to blog about all I could remember of my experiences when we first discovered that Elijah had Down syndrome, in a page I called "Elijah's Story", got a long overdue mani/pedi, had a night out with "the girls" to see Sex and The City 2, have had a couple of sleeping-in days and am getting to go out with my hubby tonight (I can literally not remember the last time he and I went out together...not counting errands with the kids in tow.):) Two of the additional highlights this week were our first visit to a program called "First Steps" at Club 21- a learning and resource center established to support children with Down syndrome, their families, and the community and I started back to teaching ballet.

I've been ready to start meeting other Moms. I've been meeting some great people online, and have been in touch with two Moms that are new to this journey: one I call Kindred (because I felt like we were kindred spirits: both due within weeks of each other, both having boys, and both with a prenatal diagnosis of Down syndrome for our babies) and one who I recently met online who did not have a prenatal diagnosis and is still processing it all...well, we're all doing that, but she's newer at the processing than Kindred and I are. I got to finally meet Kindred and her hubby and adorable baby boy yesterday! I also got to meet a handful of other Moms- some with prenatal diagnosises, some without, and all are lovely. It was a relief to sit in a room and be able to ask questions of those who have been on the journey a little longer than me and also to talk about the feelings that we newer Moms are having. This week there was a Physical Therapist there to answer any questions and help in any way he could. Since low muscle tone (or Hypotonia) is present in babies with Down syndrome (to varying degrees), almost all have to have some physical therapy. Elijah seems pretty good with his muscle tone, other than I can tell that his core strength is a little low. The main way I notice that is when he is in his car seat, he slumps forward and I haven't known what to do about it. Joe, the PT, recommended placing a small, rolled up hand towel in his lower back to arch him just a little. We did it and Voila! - it worked! I never would have thought of that! So already the Physical Therapy has been beneficial.

I still love dancing. Even though I no longer pursue it on a professional, performance level, dancing makes me feel like ME again. I didn't think I would love teaching, but I really, really, really do love it! It has been like this for me: I walk into a dance studio and walk out a refreshed, new me. It's a place I can leave everything else on hold. If I'm stressed or worried, those things barely exist while I'm in class. So, after losing my substitute teacher a little early, I decided to go back to my classes 2 weeks earlier than anticipated. It was great! The girls really missed me, which felt good (and I missed them also!) Plus, it was an extra bonus to feel my body again- without a 16 pound weight in the front. I demonstrated a turn and it felt like I was floating!!! My balance isn't quite back to normal, but on that particular turn, I floated around, completely on balance and stopped on a dime. I dropped my composure and shouted, "Wow!! That felt amazing!!! I haven't gotten to feel what it's like to turn in a looongg time!" It reminds me of why little girls like to put on ballet skirts, or tutus, or floaty dresses and twirl. Twirling is amazing! I'm challenging each of you to stand up right now and just twirl around for a second......................................it's good, right?! So, I'm back to teaching again, and I'm using it as a little "Me Time"- plus I get paid which is really helpful. My muscles are so sore that it's painful to sit down and get up again, but it's worth it...

Last thought: I've started reading "Three Cups of Tea" by Greg Mortenson. I've committed to a book club, which is something I've always wanted to do, but never actually made happen. This book is inspiring and it makes me think. In it, Mortenson goes through an incredibly challenging situation in which he truly could have lost his life. Instead he comes out of it inspired to do something for the people who give him refuge, and decides he will build them a school after seeing the poverty despite the children's desire to be educated. It really makes me think about the things that inspire us to act. It's rarely the things that make us comfortable. We're usually inspired to act by the things that test us and our comfort zones. Mothers Against Drunk Drivers was founded by a Mother who lost her child to a drunk driving accident, Eunice Kennedy Shriver started the Special Olympics because she had a sister with a severe intellectual disability, and on and on...So sometimes the things that are hardest on us, are the things that lead us to greatness. This is a concept I'm leaving myself open to. I certainly don't want hardship to enter my life and I assumed it had when we got a diagnosis of Down syndrome for our youngest son. Some of it has been hard...adjusting to news we didn't expect was hard...the NICU experience was very hard. But, it also makes me appreciate life and all of my "boys" that much more!

Thursday, June 3, 2010

The new page

So, I've added a little something to my blog. It's a new "Page" called Elijah's Story. It was an emotional journey for me to get it all down, but I realized that as our life goes on, we'll get further and further from the stories of the start of our journey. We'll also get further and further from the emotions of the start of our journey. I want to be able to capture the experience-both for me to look back on someday and measure how far we've come, and also for those new Moms who somehow find my blog and are dealing with news like I received. I invite you to check it out and let me know what you think.

I'll leave you with this:
"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." -Elizabeth Stone