a friend of mine has a blog about parenting a medically fragile child. her daughter's condition is different than asher's, but our journeys as mothers have often been very similar. and so her post today broke my heart. i'm not going to summarize it here; you can check it out for yourself, if you're interested. but i want to share my reactions to it. and please know, i don't always think about these "unanswerable questions"... in fact, i very rarely do. i know that i don't know the future and i'm ok with that. except today, it would seem. but it's part of the journey, so i'm sharing it.
when a family has a special needs or medically fragile child, suddenly, the entire family dynamic changes. in every imaginable way. we went from "ed, heather and the kids" to "asher and heather... and aren't there some siblings in there, too?" since 10 december, 2006, my life became centered around asher. asher became my identity. even my email addy is "wonkyheartmom" for crying out loud! his wonky heart became my wonky heart.
as for blithe and bram... sigh... (please bear with me in this post. my heart is breaking and i'm in tears, so if there's typos, it's because i can't see them.) it's like there are two sets of children in my life now. there's asher, and there's "the kids." and "the kids" are blithe and bram. yes. they're separate. when asher is in the hospital, or he's in emerg, or he's sick at home, i need help with "the kids." and that never means asher. that means blithe and bram. i mean, think about it: people ask me all the time how asher is doing. occasionally, they'll ask how i'm doing. rare is the person who asks about blithe and bram. and by "rare," i mean, i don't remember the last time someone asked about them. here's just two examples: a book is being written about life with a single ventricle kid, and ours is one of the families being "showcased" (for lack of a better term). the authors wanted to know about asher and his parents. the kids? mostly overlooked (because we did discuss them, but not in depth). and when i was asked to share at church about our journey, they asked about asher and me. again, there was no mention of blithe and bram, other than that i have three kids. i'm not blaming anyone here; it's natural to focus on asher, because his part in this is so obvious and dramatic. but still... i have two other kids whose stories don't get told.
and how have blithe and bram responded to all of this? generally speaking, they deal with all of this wonderfully. a SN/MF mother's dream. they are strong, joyful, resilient, compassionate. they just roll with it. "asher's in the hospital again? hooray! that means we get to spend time with nana!!" but then i wonder... you know... in the bigger picture...
blithe knows way too much about asher's condition. and i don't just mean that she knows about all the defects in his heart and she can tell you about the surgeries and she can find the aorta on a picture of a healthy heart (b/c there isn't one on the picture of asher's heart, and she knows that, too). i mean... she knows. she knows he's fragile. she knows that there is no medical explanation for why he's still here. she knows that he could pass very quickly, with very little warning. as for bram... he was so young when asher was born, to a large extent, this is the only kind of life he has ever known. the instability and unpredictability and stress and chaos and unknowing. up until the other week, he assumed that when he was asher's age, he had all kinds of scars on his torso, too.
and then there's the non-asher factors that go with this life, which are inextricably intertwined with the journey. asher's care is expensive. so um... yeah. i'm usually broke. and the kids know that. we don't get to buy new clothes very often, and when we do, they're not super cool. they're super cheap. we don't get to eat out very often. a full tank of gas is a luxury. the kids are aware of this. they don't get the cool toys that they see advertised on TV. nope, they have to make due with the same broken toys they've had for years, unless their dad buys them something (which is also nothing expensive). i mean, seriously, right now, asher needs a new pair of everyday shoes. and can i buy him a pair? nope. he's just gonna have to make do with these shoes that don't stay on his feet, because i just don't have the money for a new pair. as for groceries... the kids don't get lunchables or special treats, they don't get their favourite cookies. they get homemade cookies. and sandwiches on homemade bread (other than today, because my mother bought a loaf of bread for us on saturday)... i'm not trying to say we're starving or anything; they're fed, don't worry. but my point is this: the kids have to sacrifice a lot.
and it's not just sacrificing material things, either. as joyful and gracious as blithe and bram both are, there are those tell-tale markers of this life: they both struggle a bit with anxiety. granted, some of that is genetic. but it doesn't help that they have very little control or predictability in their lives. i'm working on getting some sort of routine now, but it's hard. we've been without it for so long, i feel like i have no idea how to do that anymore. but even developing a routine now is a huge change for them, and that causes them stress.
the point i'm trying to make is this: having asher in our lives has been very difficult. yes, it's wonderful, he's an amazing boy, and i love him more than i ever imagined i could ever love another person, and he is a gift and a blessing in innumerable ways. don't misunderstand me. but... sometimes...
and i'm just being honest here...
i ask myself, "if i could go back, knowing what i know now, what would i have done?" if i knew the cost to us as a family, if i knew how he would suffer, if i knew how blithe and bram would suffer...
would i change anything?
and again, i'm being honest here.
knowing what i know now, both about the condition/treatments/odds/etc and about the life itself,
i would still have made the same decision.
but i would not have brushed off some of the options quite so quickly. i would have at least entertained the thought for a few minutes, instead of snapping at the cardio. i would still have chosen the hybrid. i honestly would not change a single thing that i have done over the last nearly 4 years. but i would have given more thought to the impact of my decision on the other kids. again, i'm not saying that i would have chosen comfort care. i wouldn't have. it's not mine to decide how long another person lives, so i wouldn't have chosen that. i would still have chosen the hybrid, too, even though a couple complications along the way were directly because of that surgery.
and then there's the other unanswerable questions...
how will this life impact blithe and bram as they grow up? what kind of adults will they become? what kind of parents will they be? or will they even have children at all, too afraid to risk having a child like their brother? will they hate me and resent the life i chose for us? will they hate God for giving us this life? or will they grow up to love God? will they find comfort and refuge in Him and His promises? will they be compassionate toward other people? will they have learned to embrace today instead of fearing tomorrow or regretting yesterday? will they see God and Beauty and Light where others see darkness? or will they be consumed by fear and anxiety and mental illness?
if i'd had a crystal ball back in the day, even before asher came onto the scene, i think i would have made pretty much all the same decisions i've made anyway. and in the meantime, "all" i can do is to do my best, love them unconditionally and completely, and trust that God has plans for them, plans to prosper them and not to harm them, plans to give them hope and a future. it's just...
sometimes it would be nice to know ahead of time...
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1 comment:
Hug.
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