by now you probably know that, if he's not already failing, he's at least "flirting" with it.
and as you can probably imagine, i hate it.
i love my littlest man. but just last month i was reminded of something kids with HLHS have a 70% chance of surviving to 5 years.
and asher is already 4.
now, i know, statistics are not a death sentence. i know. i really do. but...
asher's HLHS is pretty much as bad as it gets. and he "should" be dead 15 times by now.
the other day, when we went to see our amazing dr b, i already knew what she was going to say. i was hoping for an ear infection or bronchitis or a nasty cold or something, but i knew. i memorized that list of symptoms when asher was four weeks old. i know what to look for, and i knew what i was looking at.
i also know about the possible ischemia, i'm watching and waiting for a heart attack, i'm pretty sure his pacemaker isn't working properly.
but the moment dr b uttered the words "congestive heart failure," it was as if someone kicked me in the stomach. i wanted to vomit. i wanted to cry. and i was just. so. tired.
call me crazy, but i don't want my precious little man to die. i don't. and i can guarantee that anyone who has met him feels the same way. he's just too amazing, too sweet, too funny, too loving, too.... asher-ish for that. i want him to grow up and grow old and have a dozen healthy kids and a hundred grandkids and a thousand great-grandkids.
but that 30% haunts me...
and yet, i know that God specifically designed asher's heart this way. i don't know why, but i know that He did.
so how do i reconcile this mother-love/fierce determination to see my child grow up, with God's will?
um... i don't know.
quite a while back, i was in a small group. and we were talking about surrender. namely, surrendering our baggage to God. here is what i said
my son has half a heart. he's been through too many surgeries, too many infections, too many hospital admissions. he has too many doctors. and yet, i know that this is God's plan for him. and so, because of that, i have surrendered asher to Him. whatever He chooses to do, whether it's to heal asher completely, whether it's to take him from me, whether it's to keep him here and not take away this illness, i have accepted and will continue to accept that that is God's will. but in the meantime, even while i wait to find out what God has planned, i have to deal with all of this. i have to take asher to appointments. i have to watch for symptoms. i have to sign consent forms. i have to sit with him in ICU. i have to feed him according to his special dietary needs. i have to deal with his condition now, even though i've handed him over to God.
and that's that, i guess. i've surrendered asher to his Maker. thankfully, his Maker has decided that asher will stick around, though for how long is anyone's guess. but i still have to deal with all this crap.
i read something interesting today
faith isn't necessary when we know the outcome. faith is what gets us through the uncertainty.
yes, i'm exhausted. yes, i am completely sick and tired of heart stuff. yes, i hate it.
no, i don't know how long he'll be here. no, i don't know if he'll ever get a new heart. no, i don't know what's going on in that wonky little heart of his. no, i don't know if he'll pull through this latest bout of failure-ish. no, i don't know how bad it will get, or if the few doses of HCT will do the trick.
i just. don't. know.
and i hate that.
when i stop, and i mean
when i stop
God is there, doing something. i don't know what He's doing, but He's in there.
and i'm ok with that.
but i accept that God sees the big picture and i don't and He knows what's best and i don't and He loves asher waaaaay more than even i ever could.
if He chooses to take asher at some point, i'll hate it. but i'll accept it. i'll weep and sleep and grieve and mourn and stare off into space because that's the only thing i'll be capable of doing (can you tell i've mourned him a few times already, that i'd have an idea of what i'll be like?)...
being asher's mother isn't easy. being asher isn't easy. but you know what?
every night, when asher says his prayers, he asks God to "make me feel much better." how does this 4-year old know to ask God to do that? how does he know that God can do that? and how does he not stop asking for relief despite the fact that it doesn't come and he still has chest pain every day and he still gets tired and short of breath and overloaded with fluid and he still can't keep up with blithe and bram?
somewhere along the way, asher has learned to trust God.
and somewhere along the way, asher has learned to wait patiently for God.
and it still hurts and he's still scared and he's still going for therapy on tuesday and he's still sick...
and he's still trusting God and waiting for God and looking to God for what he can't do himself.
i'll admit, sometimes i get caught up in the horror of HLHS and CHF. sometimes i mourn my child who is still here but may not be for much longer. sometimes i just hold my breath waiting for God to do something, anything.
but most of the time, i just continue to watch for symptoms and take him to the docs and give him his meds and feed him fatty foods and keep on keepin' on...
and i wait for God.
and you know what they say about waiting for God
But those who trust in the Lord will find new strength. they will soar high on wings like eagles. they will run and not grow weary. they will walk and not faint. (isaiah 40:31)
last night i just wanted to cry when i thought about this latest bout of failure. and i almost cried when i told my friend about it this morning at church. but i also know that God is in control. God has a plan. and God hasn't forgotten about us. so we're just waiting for Him.
and tonight, sure, i still want to cry and vomit when i think about it all. but i'm not so tired. and i remembered to pack his meds tonight when he went to his dad's. and i'm going to make an appointment for him to see paeds again, and i'm going to take him for play therapy on tuesday. we're going to keep going, because we're waiting for God and trusting God, and that gives us the strength we need to get through today. today we ran and didn't grow weary. tomorrow we may walk and not faint. our pace isn't the fastest and we don't actually know where we're going, but we'll just keep on going.