there was an article in the new york times a little while back - you can read it here. its beautifully written. & i cry every time i read it.our situation with isaac is a little different, obviously, than this mom, but a lot of the thoughts she has are ones that i think, too.
we are both mommies to sweet boys that have genetic disorders.
& while her sweet son's life is quite certainly not projected past three years - our timeline is much fuzzier.
we could have three years. we could have 13. we could possibly have more - especially as they're making great progress with the research being doing for Fanconi.
but at the root of it we don't know. & that makes every moment special & sweet.
there is tons of hurt & sadness in not knowing.
but great comfort that God knows.
when i was little - really little - think 3 or 4, we always had little tapes playing that we would sing along with. i feel like i remember those almost more than any i hear now. i still find myself humming them sometimes.
& i sing them all to isaac now, for him to remember someday.
this one in particular i must have learned in sunday school & i hear the line over & over in my head when i'm talking to doctors & planning surgeries, or even when we think about how long we will have isaac with us:
He's got the little bitty babies in his hands. He's got the little bitty babies in his hands.
He's got the little bitty babies in his hands. He's got the whole world in his hands.
maybe that's silly - but there's truth in the little tunes I used to sing.
not everything that happens will be things that make me glad. to be human is to feel all kinds of emotions. but I can know that God is holding our sweet boy in his hands. & He isn't going to let anything happen to Isaac that isn't supposed to & that is a comfort.
I know thats a big statement. one that brings with it a lot of questions.
but for now i think its enough to say that we know that as parents, we will do everything we can for Isaac, but at the end of the day, its not really up to us at all.
part of this being a dragon mom as daniel now calls me {from the aforementioned article} is pretty cruddy. i have to be an advocate for my son in a world of PhD's - a 23 that looks 16 year old mommy.
where my son's disease is so rare that most of his doctors haven't heard of it...
i don't like that.
i don't like being stubborn & asking questions.
i don't like to cry in front of strangers in offices & in the parking garage.
i do like to please people. i am a people pleaser.
i like to cause as little trouble as possible.
to blend in.
isaac makes me speak up when i don't want to.
to forget to be self conscious & timid.
he makes me an asker & a learner.
he makes our family different. & perfect.
everything the world told me for 22 years was that this wasn't the life i wanted.
that it would make things difficult & uncomfortable. all of those things scared me, but come to find out, all of those things i was told weren't totally true.
no one tells you that to truly enjoy laughing you have to cry. a lot. that hard things can make or break a marriage, but if you are committed to making it, you realise you love your spouse more than you thought you ever could. that hot tea & days at home are nicer. that kisses from daniel, smiles from isaac & time with family would be more special.
i am becoming a better person for being a mom of a disabled little boy.
i am four months into being a dragon mom, & this baby is more perfect for me right now than a 'perfect' baby could ever be.
i was so scared of what have a special needs child would mean - & now all i can see are the blessings.
so maybe i don't like having to be a dragon mom in a lot of ways. but maybe, just maybe, being a dragon mom was best for me. maybe i'll be able to tell isaac someday how Jesus knew what He was doing when He made me his mommy. that i wasn't just the right mom for him, but he was the perfect boy for me.
