Friday, June 1, 2012

He Shines.

"Life is not a matter of milestones, but of moments."
-- Rose Fitzgerald Kennedy


I haven't talked about him. He's here of course, spread extensively throughout my blog but my words barely scratch the surface of who he is. My fingers drum across the keys and speak in foreign tongues. Lasics, congenital, ventricular septal defects; over and over I have labelled him. But there isn't truth here, not really. Nothing that speaks to who he is.

I love him so much this boy of mine. He alone has the ability to coax me out of a mood that's dark and deep and so damn awful. He holds my stare until I acknowledge him, and then he smiles as if to say "there you are". He makes me want this world. He makes it beautiful. He glows. I can't explain it, there's just something about him.

He demands attention even while not actively searching for it; and people want to touch him, ache to hold him, long to tease that smile from his somber face, but he's not easily enamoured by anyone. He's vibrant like a sunbeam you can touch, but he'll skirt your hand and flee your touch if you move too quick or demand too much.

He dances too. This crazy, goofy dance. He uses his whole body and moves expertly to the music. No matter what I'm doing I have to stop and watch. Occasionally he'll toddle over to me and grunt. His arms raised above his head, his eyes pleading. We'll move together - swaying like a willow tree caught in the winds gentle caress. And I'll live there for a beat or two - perfectly content.

Mischief is his creed. His siblings aren't interested in him. They refuse to call him by name and instead refer to him merely as "Little Guy". They push him from their games and ignore his pleas to play. When the rejection becomes too much he'll steal a crayon or toss a toy across the room, and then giggle excitedly when his name is finally screamed. "PRESTON!" Their faces red and spittle flies and I have to stop them before accusations turn violent.

Without a doubt, they also love him. I'm not sure they have much of a choice. He's enigmatic and full of character and not one person can deny what shines beneath his surface. He's brilliant and like a shooting star I have nothing but wishes when I look upon him.

And my wish is simply this. That I have not jinxed him. Here now, before me, is proof of his brilliance. No more foreign tongues, no more medical lingo. He is not his defect. He is so much more and I've seen it since the day he was born. But I could not write it. I could not put it down in words. I could not testify to his impact. In truth, I refused to make it real.

When I faced the possibility of burying him I did what any practical person might do. I listened to the doctors, I followed all their orders, and then I practised the impractical. I called him Puck for the longest time, his true name never crossing my lips. I refused to mail off his birth information, fearful I might have to eventually apply for a death certificate. And I never wrote a single word that spoke about the enormousness of his being because what he is  - is a love I cannot touch with all the breadth of my words.

I live my life in moments now, but it doesn't negate my ache to live a million or more with the boy who changed my life.

I love you Preston.




61 comments:

Lynnjefferson said...

This one makes you gasp for air Carrie. I loved it..

carrie said...

Thank you mom!

Renn @ The Big C and Me said...

Wonderful words,
wonderful woman,
wonderful wee one!
;-)

Treading Water in the Kiddie Pool said...

Oh he's beautiful. And he sounds like joy personified.

MOV said...

This is a beautiful post. You are a wonderful mom.

best,
MOV

Jennifer Worrell said...

A beautiful tribute to a precious boy! I love how you expressed your fears and your love. I think the world just stopped spinning a bit...

carrie said...

@Renn-Wonderful friend you are! :)

@Kiddiepool- He is joy personified! Perfect description!

MOV- Thank you sooo much! :)

Jennifer- Awww thanks hun! I appreciate you kind compliments!!

Trez said...

Very good.

carrie said...

@Trez - thank you :)

Sarah Elizabeth said...

Aww, he is a beautiful little dude. And so are you, holy cow. You look startlingly like a friend of mine. His expression in the last photo is the best baby-face I've ever seen. Much <3!

carrie said...

Aww thanks! Now I want to see a pic of your friend. I always wondered if I had a doppelganger out there somewhere. LOL.

Gia said...

Aw, what a sweet post about your boy! And a great pic!

Kim @The G is Silent said...

Special children will ALWAYS surprise us with their abilities.

Kerstin said...

OMG, this brought tears to my eyes. What a wonderful tribute to your little guy Preston (and I think Puck is cute as well!)

Vanessa said...

Beautifully said.

Delilah Love said...

This was beautiful. Just beautiful. Thank you for sharing Preston with us.

Joe said...

He is a beautiful boy.

One of Kellie's favorite sayings: "Each step of the journey is the journey."

(Kellie's world)

carrie said...

@Gia - thanks so much, my stepmom took this picture. I really want her camera!

@Kim - isn't that the truth!

@Kerstin- Thank you! He is a wonderful guy. I really loved the nickname Puck too, but once his defect became mostly healed...I just stopped using it. Like I needed to put ALL of it behind me?!

@Vanessa- Thank you :)

@Delilah - thanks so much for reading! He is so much more than even these words - but that our kids for us. We can never truly describe how special our kids are to others. There just isn't words powerful enough for that! :)

@Joe- wonderfully wise woman your wife is. It's so true.

Tara Pohlkotte said...

he sounds amazing! like he is teaching you through his life to be open to so much. just lovely!

carrie said...

@ Tara - He truly is. Each of my kids teach me something beautiful and worthy. He has taught me about time and what it means to recognize it's passing. I always thought I had time enough for anything. Then I had him and I had to realize that time is a fallacy. All we have is moments and you better make the best of them.He has truly brightened my world. I see now - so much, so clearly! :)

Jack said...

This line speaks volumes:

I live my life in moments now,

carrie said...

@Jack - thank you so much for the wonderful compliment.

Sisterhood of the Sensible Moms said...

This gave me chills. Your phrases were so perfectly and vividly turned, but the beauty of Preston shines even brighter. No mother should ever have to go through what you went through, but you are both strong beyond belief. You are so blessed to have captured the full range of emotions from grieve, to mundane, to utter joy, so very well. Ellen

TriGirl said...

One of the best things about kids is how well they can prove the doctors wrong. Lovely post :)

saalon said...

Having no children of my own, I honestly can't conceive of how much strength and grace it takes to not persevere but find joy through this kind of adversity. Heck, I can't imagine having the strength and grace to raise a child, period. This was a wonderful post. Thank you.

Kelly Garriott Waite said...

Beautiful.

Cat said...

Beautiful, happy tears falling.

Dawn Beronilla said...

Such a beautiful description of such a beautiful boy.
There were so many lines that painted the most wonderful picture of your love for each other.
You are both so incredibly lucky to have each other.

Robbie said...

This is breathtaking & heartmelting. I want to see him dance.

carrie said...

@Ellen-Thank you so much. it's so hard to capture all that he is in such a few phrases so I hope i did him justice!

@Trigirl- I agree. Such a wonderful little miracle I have on my hands. We were really lucky that all his holes were in the muscular part of his septum. So as muscle grows we had hope the holes would grow over and most of them did - all but the two biggest.

@Saalon- Thanks so much. It was the hardest thing I ever had to go through. I decided would not love him less. I would love him just as much as his healthy siblings - no matter the outcome. It wasn't as hard as I thought it would be. He's just so damn special.

@Kelly- :)

@Cat- Thank you :)

@Dawn- he is a sweet little guy. Such a loveable and adorable little soul. he makes all of us laugh. I cannot imagine my life without him in it.

@Robbie- his dance his awesome. He even uses his arms raising one arm and then the other. It's so damn cute and hilarious

Dude of The House said...

What a lovely tribute, Carrie. Thanks for sharing.

SouthMainMuse said...

I loved when you wrote how he dances with his whole body. That was my little one too. (who is now 18). He loved Suspicious Minds by Elvis. Your love for him came pouring through your pen.

Jamie said...

No matter, you will always always love that you wrote this. Always. The part about him staring at you until you acknowledge him brought back so many memories of my own babies. Thank you.

Stephanie B. @B4Steph said...

Beautiful writing, Carrie. The content, of course, is mesmerizing, but your words and sentences fill that content with emotion. Lovely, you, your boy, your writing - all of it.

Just Keepin It Real, Folks! said...

AAAHHHH that is amazing!!!!!! Such love in your post.

Michelle Longo said...

absolutely beautiful. really great piece here.

doseofreality said...

A beautiful post. Power in your words and images. Preston is lucky to have you. :)

carrie said...

@Dude of the house - thank you, I hope Preston enjoys it as much as everyone here did!

@SouthMainMuse - I love watching babies and toddlers dance - there is no worry about what they look like! Thanks for the compliment!

@Jamie - It is an awesome record of who he is and I am glad I managed to work up the courage to write it.

@Stephanie - thanks so much. Your comments means so much I admire your writing a great deal!!

@Justkeepinitreal,folks- thank you! :) I'm glad you liked it!

@Michelle - :) thanks a bunch!

@doseofreality - and I am soooo lucky to have him!

momentsofexhilaration.com said...

Oh my god. So amazingly beautiful. You are a lucky woman and Preston is a lucky boy.

carrie said...

@momentsofexhilaration- I agree I am one lucky lady! i have made quite a beautiful little family. I'd do anything for my kiddios!

Lisa Nolan said...

Such beautiful words! (It took me a long time to appreciate the "special needs" aspect of my son, ironically it was not his "special needs" that made my son "a challenge" but his out-and-out tenacity! Not so much a stubborness, but an unwillingness to give up. Now that he is seven, and doing so well, I see how much that benefits him!) I love how you describe what you love about your son and what he can bring out in you!

carrie said...

@Lisa - it is hard to come to terms with the "labels" so easily applied to our children. Whether they are special needs or not. Seeing beyond my son's defect was very hard at first because it meant seeing him. It took me a while to accept that although his heart wasn't working the way it should it didnt mean I could love him any less or treat him any differently than his siblings. Probably the hardest thing I have ever learned as a mom and a person is how to TRULY love UNCONDITIONALLY.

According to Mags... said...

This is beautiful. Your words are well put!

carrie said...

@Mags - thanks! :)

Kerry said...

Oh, Carrie. Beautiful. Preston has a wonderful mother.

Ado said...

Oh - "Puck" ! What a perfect little nickname.
Beautiful, just beautiful. And I agree with your mom: this one makes you gasp for air.

carrie said...

@Kerry-thank you!! I try to be anyway!

@Ado - lol. We called him "Puck" because we got pregnant after Canada won the gold at the 2010 Olympics in Men's Hockey! He shoots he scores, eh ;)

Lisa said...

It's women/mothers like you who inspire me...and also make me feel like a complete failure. But I'm working on that with my therapist. Seriously? How fortunate your family is to have someone like you in it. And, wouldn't it be nice if more people were like you? Our world would be exponentially better. Thanks for sharing.

Pish Posh said...

This "I live my life in moments now, but it doesn't negate my ache to live a million or more with the boy who changed my life" and so many other lines here are so beautiful, Carrie!! Your writing is lovely!!

I can't imagine how hard things must be sometimes, but with your love you can fill up the holes. Love can't fix everything, but also it can.

carrie said...

@Lisa - oh my goodness, you are not a complete failure! I imagine you love your children just as much as I love mine! I am far from a perfect parent. My daughter swears like a sailor thanks to my potty mouth and she's three!! And right now i'm typing this response to you and ignoring my kids as they try in vain to play charades with me. lol.

Parenting is mostly about balance, I just happen to recognize the true meaning of time now and am not so quick to take my little crazy kiddies for granted!

@Pish - You are right! When it comes to your kidlets love goes a helluva long way to making things better. Love was more powerful than I gave it credit for. And I agree that love can't fix everything - not in the literal sense - but it can make the emotional crud a little easier to bear.

Amanda said...

This is one of the most beautiful things I have read in a very long time. Your love for him is palpable. It has been minutes since reading this, and I still can't blink the tears from my eyes. To experience love like that -- it can break your heart in a million little pieces.

Shosh said...

As someone born with a congenital heart defect, who is now in her thirties with two kids, I'm always amazed how much my parents had to go through. I never truly understood until I had my own children. Thank you for this post. He will thank you one day too.

carrie said...

@Amanda - awww thanks so much. I totally hugged myself after I read that. It's so true. A parents love is the most intense thing I've ever felt and it has changed me, just as I know it would destroy me in ways unimaginable if I ever lost one of my kids.

@Shosh- Oh wow! It's so common and I never knew. Not until I had my baby and they said 1 in 100 kids are born with a heart defect - it is the most common birth defect. I am honored to meet your internet acquintance. CHD survivors are so inspiring and really make me feel a lot more comfortable in believing that my son will be alright!! Thanks SOOOOOO much for commenting!!!

jamiey writes said...

Wonderfully written, Carrie. It take a beautiful mum (inside & out) to pen such a beautiful post.

Vivian said...

Carrie beautifully said, my eyes are tearing up now. Although not as extreme I know where you are coming from and one day I will be ready to write about it.

carrie said...

@Jaimey - thanks so much :)

@Vivian- I hope you do, it's cathartic!

Adrienne said...

He's beautiful! And you are so right! He is not defined by this illness!

carrie said...

@Adrienne- He certainly is not! :)

Kait said...

I weep.

carrie said...

@Kait- Thank you kindly :)

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