Sunday, August 8, 2010

Grace is dancing

One of the biggest fears that I had when I received the diagnosis that our baby has Down syndrome, was that he wouldn't have a good quality of life.  I worried about his heart, because 50% of babies born with Down syndrome have heart defects.  I worried about his digestion, his growth, his physical capabilities...because all of these things can be affected.  And because we don't know what he's truly capable of yet, we marvel at each and every accomplishment.  The feeling of tears still spring up at the back of my eyes when Elijah breaks out into that smile-that-lights-up-his-face.  And we hear a little laugh now and again, and the tears threaten my eyes there too...his little laugh that's preceded by a simple "Heh".  Now, we're getting to some of our bigger milestones, not completely there yet, mind you...but getting there.  The first being that he is starting to lift his head and support himself on his arms. 

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It is heaven to see him responding with a little smile, like he loves the encouragement and is just a little proud of himself too.  Throughout my pregnancy and now that we get to experience him everyday, I can tell that his spirit is strong.  He's a little fighter.  He's gonna fight for it, and that teaches me everyday to not overlook the little things that make up the big picture.  We can choose to spend our days worrying and stressing about our careers, our homes, our relationships or we can choose to just put one foot in front of the other and do the work.  I'm tired of negativity.  It's not that I don't go there occasionally, because I do. But, I'm tired of it.  Because it does NOTHING except rob you of potentially beautiful experiences and reminders that life is short, sweet, and precious.  We take it for granted most of the time.  I went to a 2 year old's birthday party today with both of the boys.  We had a great time, hung out with some cool people and had a few more out-in-the-world experiences.  A friend I saw at the party, turned me onto this singer named Tyrone Wells.  He told me that Tyrone Wells had written a song about a little girl born extremely premature and with Down syndrome, who had the worst possible prognosis.  The doctors believed she would never walk, talk or play.  Her parents named her Grace with hopes that she would survive.  Survive and one day dance.  Two years later when Tyrone Wells contacted the family, they said, "Grace is dancing."  He named his song, "Grace is Dancing" and although I couldn't find it to upload to my music player, I did find a You Tube clip.  The song is phenomenal, but what you'll see in this clip is even better than that...so, grab your tissues...(You will want to pause the music player found at the very bottom of my blog, so you don't have overlapping sound.)



One day, I will say the same of my little Elijah.  I full intend to teach Elijah to dance...to REALLY dance.  He may not love it, or even like it and that would be okay.  But if there is any spark, any little inkling of interest, then I will teach him everything I know.  Whoever said you had to only teach a girl about the love of dance? With that said, I am attempting to put Christian in a boys hip hop class in September.  It could be a complete failure, with the teacher shooting me darts through her eyes at enrolling him, or it could be the cutest thing in the world.  I'm gonna put him in some low rider jeans with his "Cars" underwear sticking out and a backwards hat...just to see... :)

It was a good, good weekend.  Got a little girl time for myself (complete with lunches, yoga, massages, brunch and cocktails- Happy Birthday Kristi and KB!) and got some cherished quality time with my boys.  Here is one of my favorite moments:

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Elijah busts out the big-gun smiles, as Christian peeks through the hole and declares, "TA-DA!!!!!"

8 comments:

Tara said...

Can't say you didn't warn me! Sniff, sniff, sob! Awesome song and great post. Your little man looks like he's doing great on the head control thing! He'll be into everything before you know it. :) It's weird how you can wait and wait for a milestone and, once it's past, not really remember the struggle.

Jen Currier said...

I know, Tara...I drop a tear every time I re-watch that clip! It is funny that down the line the things that we wait on with baited breath become a distant memory!

evrfwd said...

So lovely of a song. Thanks for sharing that and for your dreams for Elijah. He WILL dance, he already does. =)

Unknown said...

Yes, Grace does dance. I am her father, Michal. Keep your head up, things get difficult at times, but these children will lead the way. Tyrone is a brilliant artist and continues to spread the Grace through out OUR world. Thank you for acknowledging this beautiful song. Much love and support is being sent your way.

Warmest reagrds,

Michal Irvin

Jen Currier said...

Michal-
I am thrilled that you found my post and that Grace is dancing!!!! There seems to be so much to be learned from our little troopers, as I'm seeing already- only 3 and a half months in! Thanks for your love and support! I hope we get to meet Grace one day and our little ones can impress everyone with their moves!

Unknown said...

Jen,

Indeed we have been given a gift! Grace is 2.5 years old, weighing in at only 22#, but dances like there is no other. Grace came to us at 23 weeks and 4 days, spending almost 5 months in the NICU. We were told not to get our hope up, so we named her Grace. She pulled a fast one on everyone, amazing physicians with over 40+ years experience. Grace has shown, and continues to show so may that statistics are only numbers. We will decide, along with faith and trust in God. Tyrone really did it on this one. He and the boys will be here in Portland in November and we can't wait to see each other. Let's keep in touch and yes, perhaps on day are two blessings will cross paths in "real" life.

Much love, light and support from Portland.

Michal

Tracy said...

Jen you sound awesome! You are clearly very happy! It's wonderful...who knew? I'm right there with you! If you get to meet Grace and her family, I want to be invited, pretty please!

Love the pictures...sweet sweet boys!

P said...

Benji, who turns two years this month, dances whenever he hears music, and his "high kicks" are amazing. He's ready for his first class from you now!! You already started your classes, benjis sisters dance ballet etc for him--that's where he learned!

I don't think his PT would think it's a great idea to toss his leg up on the couch though, considering he can only balance without the couch for a few seconds....hmmm. She loves his dancing and kicks though. ;)

We must plan to all meet and dance, virtually at least

I will get to meet you soon and or post a video to Facebook soon, really, I will.

Remember the ballet teacher/therapist in Santa Monica though--we need to visit her class. Lots of kids and teens with DS of both genders take Ballet in PV here in the south Bay.