logic never helps. forget logic. it sucks. HLHS sucks. all of it sucks. it's ok to feel that way. and you know what? i think it's good to prepare ourselves for the worst. quite often, even now after this surgery, i often find it hard to enjoy asher and love him the way i love the other two. i'll admit, sometimes i downright resent him (though i'd deny that if you ever told anyone!). i love him so much, but i'm just tired. it's this life. this is what it does to you. we have to live in constant fear and dread and anxiety and nausea. yup, a freaxious lifestyle, this heart parenting. i have hope, and i cling to that hope, but it's hard. so it's ok to be scared. that's part of this life. if you weren't scared, you wouldn't care. you're scared because you love your baby. i wish i had some words of wisdom for you tonight, i really do. but i don't. my only relief came when dr caldarone told me asher was alive at the end of the glenn, and once we made it up to 4D after the glenn. even now, i'm consumed by anxiety most days, and i've needed so much more help than i have ever wanted in my life. (i'm far too independent and stubborn for my own good). i guess the only thing we have to help us through is each other, other heart parents who know what it's like. unfortunately, most of the other parents i've talked to, they don't fully understand, because their kids aren't as severe as asher, and don't have nearly as many other issues as he has. and they don't know what it's like to have actually friendships with emerg nurses and inside jokes with cardiologists - they just aren't there that often!
i am usually really positive, too. a long time ago, i think asher was a couple months old, i came across a quote, and i like it. "Oughtn't we to be prepared for the best, too? it's just as likely to happen as the worst." (LM Montgomery). it's a good thought, although it doesn't always help. not when you're choosing charities ahead of time for people to give to in the event that....
i think the worst part of all of this for me was that i gave up so much that i believed in. my other 2 were both still nursing when asher was born. i haven't been able to nurse him since he was 3 weeks old, and even then it was a struggle. i had to give that up b/c he needed more calories, and i just couldn't pump. It turned him into a project, and i wanted a baby instead. i've given up everything about attachment parenting - he doesn't sleep with us, he hates the sling (reflux, tube-feeds, etc), i have no more boundaries. I’ve lost myself in a sea of meds and doctors and tests and hospitals and formula. I’ve lost myself in pools of antibacterial everything, due to his stupid crappy immune system. I’ve lost myself in a pile of frozen dinners and convenience foods, because i have no time to cook because of so many appointments, and no energy to cook on our days off. I have overcompensated with my other kids, buying them way too many toys and plunking them in front of the TV for too many hours. I’ve isolated myself, and not always voluntarily. Hospitals are lonely and dehumanizing, and i spend most of my time there. I’ve had to give up too much that i love, and in return i’ve gotten too much that i hate and resent.
I have nothing for you tonight except this: you’re not alone. I’ve been right where you are right now. i’m going through it again, on some levels. And i’ll leave us both with this:
Lord God, look at us. We’re scared, and we’re tired. Help us. Give us rest. And help us find it in ourselves, or in You, to enjoy these babies we have, for as long as we have them. And let us have them for a very long time, because it’s too hard to think about losing them. Amen.
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