hi. if you’re reading this, you probably just became the mom* of a child with considerable medical needs and/or disabilities and you’ve been thrust into the waters of confusing medical terminology and convoluted answers regarding your child’s future well-being. doctors are hurling may-not-learn and may-not-talk and may-not-walk and may-not-live at your face. your mind is racing with whys and hows and i can’ts. you cling to your precious child as you’re tossed in these waves of confusion, anger, disbelief and a deep-seeded feeling of “someone’s made a terrible mistake here” but you won’t dare put that into audible words. you are desperate to swim to shore, but where is the shore? wait, is there a shore?! you want to scream out “SOMEONE PLEASE HELP ME!” but you look around and sense that you are all alone. everyone else, it seems, is partying it up on a distant beach – drinking mai tais and soaking in rays. you pant and heave and try to calm yourself down; decide your best bet is to just stay afloat.
is that you? are you that mom? yes? good! i’ve been longing to talk to you. i dream (literally) of the things i would say; ask God to sand and polish my words – make them a salve for your raw wounds.
i have to tell you upfront that i can’t take you to shore. you’ll have to find that yourself. but, i want more than anything to show you that staying afloat is good, but it’s not good enough. i want to show you where you can find a raft and even a sail boat for your journey! more than anything, i want to give you a great big hug (even if it’s virtual) and whisper this in your ear:
you are not alone.
that may be hard to believe at this particular moment as you float there in the dark cold ocean, but it’s the truth. i ask God, from this moment forward, to shine a light so you can see the circle of love and hope that surrounds you.
my beautiful lucia, my second daughter, has been diagnosed with mitochondrial disease. she has weakness in her muscles, she’s delayed in most areas of development, she has a feeding tube, she has leg braces and, very soon, a walker, and to top it all off the progress of her disease and her prognosis are completely unknown. we may have a full lifetime with lucia or we may not. because of this, i find myself unintentionally qualified enough to speak to you just as you find yourself unintentionally a member of a sisterhood of which you’ve never heard or ever hoped to join.
by writing this post along with the next ten, i hope to, in the very least, draw you a rough sketch of where you might find your life raft. i don’t claim to know all that your journey entails nor do i have it at all figured out for myself. i still break down sobbing on my bedroom floor every now and then. but i do relate to how you feel. i’ve been in and still am in your shoes. i hope you find the portion i’ve experienced and learned to be a source of encouragement for you.
at best, i hope you’ll find me to be a friend. but not the kind of friend who is too uncomfortable to tell you that you’ve got spinach between your teeth or that your muffin top is hanging out over your jeans…but the kind of friend who will have an open, honest and understanding dialogue about the complexities currently being woven in your heart.
*if you are reading this, you may also be a friend or a family member of child with significant medical needs and/or disabilities. if so, i’m glad you are here too! i hope to offer you a small glimpse into the painful yet beautiful reality of a “special needs” mom.