Today is Trisomy 18 Awareness Day.  I am aware. And it sucks.  And here are a few other things I’m aware of:

I am aware there’s not a damn thing you can do about it.  It’s not a preventable condition.  No vitamin will help.  No vaccine will prevent it.  No amount of fruit or vegetables or exercise will have any impact on the outcome.

I am aware that some care providers will recommend to moms and dads that they should terminate their pregnancies.  I am aware that some people will make this choice.  But I am aware this is not the only option.

I am aware that people make different choices for the care of their child after their birth.  Some pursue surgeries.  Some babies stay in the NICU.  It forces parents to make difficult decisions that they have to live with and that they will question for the rest of their lives.

I am aware that it is not my place to judge them for their choices.  And it isn’t yours either.  I am aware that every child is different.  Every family is different.  And every decision is made with love.

I am aware that although in my heart I know we made the right decisions for Zoey, my mind will still cast doubt.  And I am aware that wondering “why” and “if only” is not the path to stay on for long.

I am aware I will never really understand in this lifetime.  But that when I see her again, I will not need to understand.

I am aware that T18 can cause many birth “defects”.

But I am aware that Zoey had the sweetest little in-turned feet.  And they were the softest things I’ve touched.  And that now I think other babies feet look strange– hers were all I knew.

I’m aware that T18 can cause cleft lips and pallets.  And that people can be insensitive– that they’ll hold your child weeks after her birth and say “she’s pretty even with the cleft lip”.  And I am aware that my daughter is beautiful.  PERIOD.

I am aware that T18 causes issues that can take their lives.  Like heart defects.  And I’m aware that sometimes a mom will hold her baby girl as that heart beats for the last time.

I’m aware that I held my daughter, bathed her, changed her diaper, fed her, read to her, danced with her.  I watched her raise her eyebrows when curious and scrunch her forehead when mad.  I would see her bright blue eyes light up with wonder.

I am aware I would do it all again just for those moments.

I am aware that she made me a mother.  And that I will always be her mother.  And that I will always search for ways to mother her.

I am aware of never ending, all consuming love.

I am aware of T18.  I am aware it took my daughter’s life.  But I am also aware that it gave me the chance to cherish every moment. To experience love in it’s purest form.

holding zoey

Courageous Mama

andrea family

My friend is participating in a project for the Pregnancy After Loss Support group.  Similar to what we did in October, there’s a prompt for a daily topic this week.  It’s meant to express the joy and fear of having another child after losing so much.  She’s expecting her third child this month.  Nineteen months after losing her daughter.

Today’s topic: Courageous Mama.  And I know she doesn’t think that’s true.  But it is. For so very many reasons.  And not just because she’s chosen to have another child, although I think that takes a hell of a lot of courage after losing your daughter.  Other moms read too much in the books and are afraid of what can happen.  But for us it happened.  It’s a rational, real fear.  Choosing to find joy in life while forever grieving the loss of your child is not easy task.  And she went back into the fire to hold my hand through our journey.  It takes a tremendous amount of courage to open yourself to another mom who is in so much pain.  You rip open wounds.  You relive the worst moments of your life.  But she sees the beauty–the purpose– in that pain.  And she does it over and over again.

But it’s more than that.  It takes courage to jump in without hesitation to loving a child you know you’ll lose.  It takes strength to carry a child knowing at any moment their heart could cease to beat.  Walking into the hospital to deliver your child—not knowing if they will take a breath in this world or not.  And loving, without any reservation, knowing your heart will inevitably be ripped apart.  And I know she did this, the same as we did for Zoey.

Sure there are things we wish we could have done with our daughters—a lifetime full of missing them.  But that’s not the same as regret.  And my bet is there are people that will someday look back and regret reserving any of the love they could have shared for our little ones.  But I do not.  It is a choice. You can choose to love completely–to dive head first, all in or you can choose to reserve your heart.

Fear can hold you back from so many things.  It could have kept us from loving our daughters completely.  But it didn’t.  Loving without hesitation.  Loving her every single moment with every fiber of your being.  Preparing ourselves to love instead of to lose. No regrets.  Courage.

Disney Princess Half Marathon


I made it through 13.1 miles once again.  In some ways, it was the hardest, but in many the easiest half marathon I’ve completed.  It was interesting to me: I’ve completed half marathons before so I knew what to expect physically, but this one was different.  I was running it for Zoey.  And for her friends whose names I wore that day too.  So the emotional aspect was more charged than usual.  Here’s my recap of the race and days surrounding it.

I was in Jupiter, Florida for work in the days leading up to the race weekend.  I flew into Orlando and drove there so I was able to stop at a beach on return trip. Since I had no timeline on Thursday, I took my time returning to Orlando.  I randomly selected a state park to stop.  Around 10am, I pulled into the drive—greeted by a sea turtle sculpture—just another nod to my little girl.  I was the first one to arrive that day—it was windy and cold so I’m not surprised.  But this also meant I had the beach to myself.  I stopped in the restroom on the way to the beach.  And when I was exiting the stall, a sand covered, weathered penny fell to the floor. I can’t explain where it came from. I didn’t have anything with me but my cell phone and camera and I hadn’t been to the beach yet. I wandered to the beach to say hello to Zoey.  And while it was windy, it was peaceful being there alone.  I collected a few sea shells, took a few pictures and spent a few moments alone. It was what I needed to refocus before heading to the run.

I was excited to pick up my bib number and take in the experience of the race expo (and don’t tell Joe, but I might have done a little shopping while there as well).  It is the biggest expo I’ve ever seen—spanning two buildings with isles and isles of sparkles, shoes and tutus.

Friday morning I attended a breakfast at Epcot for the Children’s Miracle Network runners.  I met other runners, watched a video that made me cry, told the people at the table Zoey’s story which made them cry and met a few princesses who then made me cry again.  I told the story of going to Disney last year and meeting Cinderella and Aurora and telling them Zoey’s story.  The progression of pictures taken while meeting them was priceless.  They got their revenge this year.  Snow White and Ariel decided to ask about my “Zoey’s Crew” shirt which in turn led to them telling me how they’d think of her every time they dance and sing.  I’d call them a not nice name, but it was very sweet.

snow white

Joe and my mom arrived Friday afternoon and we ended up back in the same room where I’d had breakfast for the Pasta in the Park party.  We ate, met a few characters and took in the fireworks show.

pasta pasta 2

We spent Saturday taking it easy. I didn’t want to wear out my legs too much before the run!  Sunday morning was chaos.  I was up around 3am and in line for the bus before 4am.  I stood talking to a girl dressed as Ana who wanted to tell me all about her paleo eating while I was dreaming of the cinnamon rolls at Gaston’s tavern.  The bus got stuck in traffic, caused in part by a stalled car.  I missed the actual start of the race. I heard it over the loudspeaker and saw the fireworks go off, but I was still walking toward the start line.  Luckily I arrived to my corral before it took off.  In hindsight this may have been for the best.  While I was certainly anxious about getting to the start, I didn’t have time to stand around and be nervous.  And then it was time to cross the start line.  And endure more than three hours of running.  Alone.  With only my thoughts.  Disney did a great job of distracting me—there were thousands of people around me at all times, bands, cheerleaders, characters and of course a little castle to run through.  The first few miles passed quickly because I was excited about getting to the castle.  The course winds around Magic Kingdom so you run through the castle and out to the front.  I definitely stopped for pictures and I was able to spot my mom and Joe.  And then the course returns to roads.  With little to really look forward to until you reach Epcot (sure I spotted Mary Poppins and Genie among others but chose not to stop—I really wanted to get done and not get picked up by the bus!).  There were a few moments I nearly cried—not from the pain of running, but because I’d think of Zoey and all the little ones listed on my armband and their moms and dads.  I’d pass a dad holding his little baby with a sign that said “hurry up mommy, I’m hungry”.  I’d wish she was there.  Or I’d just remember those short months that I got to hold her.  And I’d miss her.  But I held it together.  I wanted to finish and be strong for her.  I knew I was slow, but knew that after what I’ve been through it didn’t matter as long as I finished standing up.  When I knew I was close to the finish line, I pulled Zoey’s picture from the pouch where I’d carried it (along with the beach penny). And this is where I had the hardest time keeping it together.  I had to focus on breathing and calm myself.  I know it’s just a half marathon—but it meant so much more to me.  Running it for Zoey.  Getting out of bed to run on days when I just wanted to hide from the world.  Pushing myself and surviving the last year.  I stopped for a quick selfie with Mickey Mouse and crossed the finish.  And that was it.  I’d done it. I’d trained for months, raised money, recruited members of Zoey’s crew and told Zoey’s story as often as I could.

246637_185920296_XLarge selfiecastle

Thank you all for your words of encouragement, the photos you sent, your donations and for being a part of  Zoey’s Crew.  I want to send special thanks to my beautiful friends Jamie and Jeanette who were there for me for all those training runs and trail therapy.  For me, race day has never been the hard part—it’s getting out there over and over and over in the weeks leading up to the run.  They made it easier.  They made it happen.  And they made sure that the physical part of running 13.1 miles was not an issue that day.  I can’t repay anyone for the all the sweet gestures and kindness they’ve shown.  It means the world to me to have people remember me and my beautiful daughter.  And having my mom and Joe at the finish was priceless.   I needed the two people that are my biggest supporters and who gave themselves to loving that little princess unconditionally there at the finish.



Our children deserve a voice.  They deserve to have their names said aloud: Hattie, Evey, Natalie, Allison, Connor, Charlotte, Kupyer, Thomas, Jackson, Baby Light, Caleb, Baby Heinle, Margo, Stan, David, Todd Jr. Charlie, Robert and all the others.  They deserve to have their stories told and their lives matter.  I’ll continue to tell her story.  I’ll continue to remember her in everything I do.  In everything I am.

with medal

mickey minnie