being a parent is hard. your heart leaps, screams, sings hundreds of times a day… your heart breaks millions of times a day.
you eagerly anticipate the day you’ll hear your beloved children talk, hear their thoughts and ideas, learn more about what they think, what they feel, how they see.
you joyfully look forward to the day of baby dolls and toy trucks, of pretending to feed a stuffed bear, and have blankets tied around their shoulders like a superhero’s cape.
you wait for 2 ½ years, and those things never come. you keep waiting, waiting—“will he say ‘mama’ today? will he start showing us who he is? will we get a glimpse into his world?”—but that day keeps not coming.
it used to loom in the distance–far away, but visible.
now it wavers, it twists—a mirage in a sweltering desert.
some days, i am okay with this. i research, i study, i plan.
‘we’ll get through this. we’ll get this figured out. everything will be okay.’
other days, it is all I can do not to sink to my knees and sob.
inadequacy has never spoken so loudly. i did everything right, didn’t i? i took all of my vitamins, i exercised, i gave him his nutrients. i gave birth without medication, without intervention. i nursed him, fed him only unprocessed, organic foods. i did everything right.
and here we go again, my little girl—my breasts will not produce enough milk, will not provide for her everything that she needs.
but I did everything right.
you don’t expect this, when you start a family.
when you see that tiny blue strip, that line that says, “this is happening,” you don’t envision a future of doctor’s visits, evaluations, unrealized hope day after day after day.
it could all be worse, I know.
we could all be worse, I know.
but not getting to hear him speak, not getting to watch him play and interact and learn and grow is the most vulnerable, powerless, helpless hell that I have ever experienced, and it hurts.
not every single second of every single day. but every time i stop to breathe, every time i close my eyes, it is there: fear. helplessness. disgust with my own inability to provide for my children—unable to protect them from this, from illness, from hurt.
i keep waiting for good news. we’ve scheduled evaluations, we’ve visited doctors. so now we wait. we wait and we hope and we work on our words, our letters, our eye contact, our social habits, our gestures, our comfort with the unknown.
and a part of me—
a huge part of me—
is terrified this is all my doing.
i’m the one with a host of disorders, none of them as glamorous or entertaining as they are often made out to be. i’m the one who cares for them all day, every day. i’m the one who carried them in my womb, who should be able to care for and protect them. i’m the one they trusted. the one they relied upon.
so all i can do now is wait. wait and hope for good news. wait and hope for changes, small improvements, subtle shifts.
we pray, we beg God for intervention, for help, for miracles. we practice speech, we practice playing, we find routines and consistency and habits.
we hope, we pray, we wait. we sleep, then wake up the next day to do it all over again. and ever, still, we hope.