Tuesday, May 25, 2010

i don't really have a pithy title for this post yet. but no worries. when i think of one, i'll add it. (wow, this title amuses me! ROFL)

i'm changing things up a bit today with this post. no asher updates today, because, well, he's fine. at least nothing update-worthy, which is a delightful change, if you ask me. no, today's post is in a different vein (lol) entirely.

over the last few years, i have been asked many times, many many times, too many to count actually, how i do what i do with asher. people tell me all the time that, if they were in my position, they wouldn't be able to do it. to handle all the admissions and appointments and trips to emerg and surgeries and symptoms and scares and the knowledge that this child may not make it. the unpredictability and the constant upheaval and broken hearts and stress and strain and exhaustion and fear. the uncertainty and unknowing of it all. "how is it," i have been asked, "that this woman is a basket case because her baby had to get a needle, and yet you have to pin asher down for IVs and consent to horrifying procedures and you're still sane and even happy?" my answer, dear readers, is this:

Zero Circle

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace
     to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we're lying.
If we say No, we don't see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

                                           ~ Rumi

asher's condition has left me dumbfounded, "unable to say yes or no." if i say yes, it means that i enjoy this, that i'm ok with it, and that i'm happy my baby has to go through all this. if i say no, i would be fighting this reality, waging an unwinnable war against something i cannot change. i have learned over the years the wisdom of buffo's advice: "don't try to control what isn't in your hands to control." so i just go with it, not fighting, just doing what i have to do, signing what i have to sign, going where i have to go... and you know, it's true: it's like there has been some sort of cosmic stretcher that gathers me up and carries me. that's how i get through.

i don't know how long i'll have asher. i'm really not sure. frankly, he should be dead 15 times by now, so who knows, really. he could go next week; he could bury us all (my money's on the latter, knowing him, but again, who knows). and so i have accepted that i have today. only today. so i embrace that. all i know is that there is a plan for this boy, and he won't go anywhere until it's done, so i'm trusting God to take us where He wants us to go.

when i asked God to heal asher, and He said no, that was not the miracle He is going to do with ash, i said, "ok, but You made him this way, so You sustain him this way." and all i can do now is to trust. trust God, trust the docs, trust my instincts, trust asher. really, that's all i can do. i have let go of all of my plans for this boy (not my hopes, mind you. just my plans), and i simply trust. God has the plan, asher has the fight, the docs have the skill and know-how. me, i just watch for symptoms and take him in when he needs to go and give him his meds and do what i can to keep him alive for a little bit longer. but i'm simply doing what i need to do; i have no real say in any of this. if i did, asher would have a left ventricle and an aorta, and they would be healthy, and they would be his own. he would have no scars, he wouldn't know what a stethoscope is, and he would be scared of blood pressure cuffs and sat probes. and i would still know nothing about hearts, having never even heard of paediatric cardiology. but such is not the case.

so i've let go. when it comes to this kid, i am helpless, dumbfounded, unable to say yes or no. i say simply, lead us. and i have surrendered to this beauty, even when it isn't so beautiful. because it is all somehow even more beautiful in those moments, because it is in those moments that i get to see something more. i peak out the window onto spirit, and see the miraculous beings come running to help. docs and nurses and RTs and surgeons and anaesthetists and therapists... and angels sent running to asher's side by the thousands of people who pray for him, and by the One who has plans for this kid, plans to prosper him and not to harm him, plans to give him hope and a future. and i get to watch all of this happen every. single. day. and all i have to do is hang on for the ride.

i hope this rambling post makes sense to you. it's really so difficult sometimes to put into words how i deal with all of this. but it's so simple: i don't get a say, so i do what i have to do, and trust. that's it. because that's all i can do. i can't change any of this, no one asked if i was interested in being a heart mom. i was simply handed this broken-hearted boy and told to hang on. so i do. and i'm very, very glad i do.


tanna said...

Buffo said to me. "i know the tendency is to put these kids in a bubble to keep them healthy and to be around longer, but please, let your son live, because you don't know how much he gets to live.

I hear you lady. Every single word!

Kerri said...

Amen sister! I get it.

I hope you don't mind, I have linked your post to my post for today! :)

Heather said...

tanna - yeah, isn't buffo swell when he's that blunt? LOL i miss that man, i really do. (although now he'd just cry when he hears asher's name. bad enough when it was just the stent in the AV node... add sick sinus syndrome, AV block, and a pacemaker... yeah, the man would need a cardio of his own just b/c of asher! ROFL)

kerri - link away all you want! that's what i blog for, to share the journey and the story and the beauty of it all. and thanks for the link, b/c we've already gotten a bunch of readers from your site, and now more and more people are learning about this wonderful boy of mine. thanks so much! <3

Erica May said...

Hi! My daughter Emerson, has HLHS.We will be having her fontan this fall. Mary Clare is her best"heart" friend. I love your post, it is how I feel often. Glad to see Asher is doing well!!! We have a carepage, her page is EmersonBanksMay.
God Bless,
Erica May

Katie said...

I LOVE, LOVE, LOVE this post! You put into words how I feel as well about being a heart mama and having a broken-hearted baby girl. Thanks for sharing your heart with us... I too, love The Wet Engine and have quoted this book on our blog too! Glad your son is doing well post-Fontan. We are a year or so away from it and I'm nervous. But reading your post reminds me to just hang on. Thank you and God bless!

Katie Allred (mom to Maddie, HRHS)

Lisa said...

Well said Heather!!! I don't know what it is to have a sick child, but I have enough issues of my own and never had the words to explain to people how disabled people do it. But you said it sooooo much better than I could ever say it.

Anonymous said...

Love your blog and everything about your post. So glad someone forwarded it to me.

It is good to know I'm not alone in my feelings as a heart mom.

-Erin, mom of Vivian, 9 mos. old with HLHS