Trisomy 18 Awareness Day

I've tried for days to come up with something "important" or "profound" to say about today, and it just hasn't happened.

I'm afraid I'm a jumbled up mess of thoughts.  There's an explanation of what Trisomy 18 (or any trisomy) is over on the right-hand side of this blog, but that only skims the surface.

It can't possibly touch on the grief and pain that comes with being told that your child won't/can't live.  It can't hold a candle to the joy when you see that little heartbeat on the ultrasound, after fearing that the lack of movement signaled his journey was already over.

Definitions don't show the fear when your baby "forgets" to breathe, or a doctor refuses care.  They can't light up the room like a smile or a giggle from that same silly child who has fought more battles than most people can even imagine.

Words can't convey the sorrow we feel when a child passes on, even if we haven't met them in person, the grief that rips at our soul, or the niggling of guilt that somehow, we've been passed over, and what did we possible "do" to deserve to keep our little one.  Yes, survivors guilt is very, very real in this world I now live in.

It's sitting on the porch on a warm summer's evening four years ago, holding my frail, tiny baby, hooked up to a 50 foot oxygen cord, wanting so badly to be able to walk out carrying him and hang out with friends in the street as kids race by on bikes and scooters.  And being angry that it's not possible, while feeling guilty for feeling angry because so many other moms don't have babies to hold anymore.

It's learning a whole new language, and new skills, and gaining confidence that you really can do the hard things.

It's joy that can't be described, not with mere words.  Imagine the pure love, the eternal optimism of someone who KNOWS who he is, knows his value, and loves everyone around him.  There is no pick-me-up like being in the presence of someone like that.   How many of us actually get to experience true, unconditional love, nothing held back, no judgement, no recrimination, no disappointment?  Just love.

We often say that the 18th Chromosome must hold the "LOVE" gene, because there is just so much packed into his little body.

Trisomy 18 is life packed into a microcosm.  It's cramming as much living into as many moments as possible, because someday, those moments are going to run out.  And tasting the joy and the pain all the more because of the knowledge that it will be brief.  Because no matter how long we get, minutes with our baby who is born sleeping, hours, days, weeks, years, it will be too short.  It is never enough time.

And so while the moments last, we cherish them.  We know we've been given a precious gift, and we are grateful for it.  And that, my friends, is what living is all about anyway.  Because when that day, that someday comes, we don't want to be left with regrets.

When you live in a world where someone has told you your child is dying, you start preparing for someday. Someday, you'll have to decide that even though a surgery is needed, it is just too dangerous to go through with. Someday you'll have to decide when to stop trying to fix problems and to just provide as much comfort as you can. Someday you'll have to decide when treatments aren't working anymore anyway, so it is time to go ahead and stop them. Someday you'll have to decide when to sign papers that give medical staff permission to let your child stop breathing and their heart stop beating. Someday you'll have to make funeral plans for your baby. Someday you'll have to say goodbye.

Someday is never actually supposed to happen. - Carolyn Marie