Wednesday, March 18, 2015

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


  1. I know you are writing for Trisomy 18, but the things you describe are the very same in my world of tetrasomy 9 (I'm sure it's the same for many chromosome abnormalities. The last paragraph paints the picture perfectly. Feelings are so close to the surface after recent events. I'm sorry you gave to go through these emotions and feelings but I'm so grateful for your example

  2. I lost my identical twin girls at 15 weeks due trisomy 18 I was only able to hold them for a moment. Not a day goes by that I don't think of them and what might have been. God bless

  3. Beautifully said. I got to hold my baby girl for about 15 minutes before the funeral home came to take her away. It seemed however like only 15 seconds.

  4. What a heart wrenching story. Thank you for that. I lost my baby boy at 20 weeks after having to decide to terminate. He would have never made it and was far behind. Hardest day of my life

  5. Your words bring tears to my eyes even after thirty-six years. My lovely little Theresa lived for 15 precious days. When she looked into my eyes she gave ME the strength to pull through that horrible time in my life. I miss her every day.

  6. Thanks for your post. I lost my nephew last year when he was 5 months old. He was a very stronger baby!!!! He was never incompatible with life.

    A big hug!

  7. My granddaughter was diagnosed with Trisomy 18. She is our very own little miracle. I am so grateful to God for choosing our family to love and care for her. I am trying to do everything I possibly can to help care for her and her siblings. Your words touched my heart. I can only imagine the pain her parents are going through. But they don't show it...they have inspired me and given me the strength to LIVE FOR TODAY and TREASURE EACH MOMENT that I have with her. God bless you and all babies, and their families, born with chromosome abnormalties.

  8. I just lost my son to trisomy 18 and Ifeel exactly the same way you do I'm so mad sad my son didn't get to come home or wear any of his clothes he lives for six weeks in a nicu stuck to a ventilator over all I am greatful that i got to bond with him but it juat wasnt enough i was constantly pressured by Dr telling me to let him go I couldn't even really enjoy my time with him without hearing the Dr telllung me nothing is going to change his outcome I want to see him hug him love him i never really had the chanceto kiss him because he always had the tape on his face holding the ventilator my sons name was Elijah Ventura passed away on April 20 2017