Friday, December 2, 2011

to my sweet littlest big boy,

i love you, little dude.

it's 2:30am, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

here it is. your fifth birthday. you weren't supposed to be here. you weren't really expected to make it this far.

but you've made it this far.

i couldn't be more proud.

i couldn't be more grateful.

this truly is something remarkable. for a lot of reasons.

sometimes i wonder how we've gotten this far. i guess i could, or should say it's God, and that would be right, so i don't want to leave Him out here. i want you to know that we couldn't have done any of this without His help and guidance and strength and grace... but i don't know... somehow, chalking it all up to God just kind of makes it all seem so trivial and simple. (or at least, that's how it feels at 2:30am.)

frankly, we've gotten this far with a lot of blood, sweat and tears. literally, blood, sweat and tears. it's true, i wouldn't trade any of this for the world, because it has made all of us who we are today. but, on the other hand...


to say this milestone is a gift... i don't know. i almost feel like it whitewashes everything we've been through... sanitizes and sterilizes it all... when in reality, you've worked damn hard to get this far. and so have i. and so have countless docs and surgeons and nurses and other workers who are too numerous to mention. and to call it a gift... i'll be honest, dude, it's not really a gift i'd put on a wish list, if you know what i mean. no offence, because i know it's your life and i know it's the only life you've ever known, and i think that on a different journey you probably wouldn't be this beautiful, radiant light dancing along beside me.

but then i think back over the last five years... and i get tears in my eyes. you've come so far. no one could wrap their heads around the fact that you were eight days old before your PDA closed. eight days old. that just doesn't happen. and yet, there you were.

eight days old, and lying in Cardiac Critical Care at Sick Kids... so far from home, in a place that would become a second home so many times over the next five years.

i remember sitting next to you for hours on end. watching you, reading to you, talking with your nurses, listening to your docs, praying to God, staring at the monitors. but mostly, just watching you. it was really all i could do. i just sat there. right there, with you. holding your hand, crying over you, smiling at you when you opened your eyes, cheering you on in your little victories... the first time they took out your breathing tube, each line they could remove, each time your sats and/or heart rate and/or blood pressure stabilized... i feared for you with every challenge, too, though... each time your pressures increased to dangerous levels, each breath you struggled to take, each time your fever spiked, each time your sats bottomed out, each time you got a new line... i cried for what should have been when they gave you formula through a tube, when i had to put you down because you were destabilizing in my arms, when i wasn't allowed to touch you or speak to you or do anything but watch, because that would stimulate you too much and could have killed you...

oh, my sweet little man...

i'm lying here beside you tonight... this morning... whatever... and you're fast asleep, mouth open, arms up over your head... and i want to tickle your underpits. yes, it's bad, but sometimes i can't help myself. you just have the sweetest giggle i've ever heard. probably because i hear it in contrast to everything else.

probably because, so often lately, i don't hear it in contrast to everything else.

i just hear it. that sweet, musical, light and rambunctious giggle that bounces along with you wherever you go. it's just there. just like it is for any normal, little boy your age.

there's a lot in that giggle. there's victory and strength and determination and courage.

and there's nothing in that giggle. no pain or struggle or fear or sorrow. just light and joy and sheer, total happiness.

i joke with people that you run on batteries. you tell people you're a robot. "isn't that sweet," they say, because they think we're joking. they think you're using your imagination, and i'm exaggerating the way mothers do about their little boys who just go go go. because, really, no little boy runs on batteries. i joke about your slow-motion setting, and that maybe next time, dr c can give you a pacer with a mute button.

but that's just because dear me, child! you're loud!

but you know... i joke that you run on batteries, and you tell people you're a robot. if they only knew...

but then, somehow, the fact that they don't know, the fact that they can look at you and just see a normal boy, a normal, rambunctious, baby-of-the-family, goofball boy...

that's the gift, right there. that's the miracle. that's the milestone.

that you're normal. that you're turning five, and you have no idea how huge that is. that you're turning five, and you're having a birthday party on saturday. that you're turning five, and you're just, "i'm turning five!" and it doesn't knock you on your ass in shock and amazement that you've made it this far.

to you, your fifth birthday is just another reason for people to lavish you with attention and love and kisses, and that you're going to get presents and you got a cheque from Great-Grandma in the mail today...

which would be yesterday by now...

because it's 3:03am right now, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

it doesn't matter. you'll be five when you wake up. and you're going to wake up. and that's so miraculous.

because it's so normal.

i love you, dude. from here to one side of the galaxy to the other side and back, and then all over again. or, as you mumbled in your sleep a few minutes ago, "i love you more, to infinity and beyond."


ps - please, never say "righter." it's not a word. i just made it up because that's how i roll sometimes. i just don't want you to grow up thinking "righter" is a word. because it's not.


Wendy said...

Beautiful post Heather, just beautiful!

Happy Birthday sweet Asher! You are one amazing 5 year old :) I hope you have a super day!


Wendy, Ben, Maddy, Chris and Charlie :)

Cynthia Grillas said...

Excellent, Heather! I agree with Mr. Newton, you should write a book, both to document Asher's life journey, and to encourage other parents in the midst of similar struggles. You write really well, with the honest emotions of compassion, humor, and joy underlying each word. May the Lord bless as you continue to do so!

Cynthia Grillas said...

I forgot the word courage in the original comment! It is your courage that the others will take strength from, as well as your faith. So often people get discouraged in the struggle, and need to have a well to draw from. First, a spiritual well, and secondly a physical well. Yes, the must find both within, but it is so much easier to get a handle on their problems and emotions when they can first find something extermal which they can lay hands on--which is why your book would be such an encouragement and source of strength for many others. Please give it prayerful consideration. YOur blog could serve as the basic outline, and would likely need little editing or fleshing out, because it is already a full-bodied experience of your daily struggles and victories--dealing with all of which God gives us grace or need. God bless!

Arlene said...

Beautifully written Heather. Your mother's heart of love comes shining through. Asher is blessed. May he have many more birthdays and you many more occasions to marvel at grace.

Jenna said...

Hi AsMy name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a super hero, super trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. I was born with a rare life threatening disease, and have 14 medical conditions all together. I love it when people sign my guestbook.

Anonymous said...

how are things going? It has been over 3 months since the last update. Lisa

Anonymous said...

Heather, I agree with Cynthia; we're one of those who could really use your book although I plan to read through your blog. We were just told Friday that we'll be "getting" the hybrid; not sure whether to really call it that or maybe it is just not all at once, had PA banding 2 mos. ago, now getting ready for stent, not sure about the ballooning, nothing's been said about that, don't know if just assumed. Neither is something our team typically does but with the risk, et al, it's come to a need but our team typically for the high risk lists for transplant, not sure if there's an issue with getting one or just some of the post complications combined with Klara's medical situation but they've decided to go this route now instead, which I'm actually glad and wanted to begin with, at least as much as I knew; I'm glad this is an alternative to the Norwood, didn't quite know that, was brought up early on but team doesn't like opening up the chest that much, would rather just once for transplant but I was concerned about all that entails from the beginning but they hadn't really thought of it as an issue but then they didn't know the whole situation like we did and also the dad, especially felt surgery just left you trying to function with half a heart while transplant would give you a new whole one, another reason your blog and book hopefully can/will be such an encouragement of what life with half a heart can be, doesn't have to consign you to invalidhood.