There isn't a manual

You could say it about a lot of things, but it's true...there isn't a manual for this stuff.  No one prepares for living with the death of their child.  I have spent plenty of time fussing over what other people say (and should NOT say), but I've been struck with the fact that, often, I don't know what to say.

How many children do you have?  Is Makayla your only child?

I've been asked these questions many times - it's just polite banter.  The grocery clerk, the mom at the park, the server at a restaurant, even strangers just passing by - I never noticed how often people asked these kinds of questions until I realized I wasn't really sure how to respond.

Do I awkwardly avoid the question and redirect the conversation?  Outright lying minimizes Annabelle's rightful place in our family and breaks my heart so I'd never do that.  Do I tell the truth?  Of course.  Why would I lie? I have 2 daughters.  Makayla is a big sister.

Oh, is the little one home with Grandma? or How old are they?

No one means a thing - just normal chit-chat.  I can't lie...so do I enter the uncomfortable realm of the truth?  It kills the atmosphere, no matter what.  (For the record, I'm not the least bit afraid to share about my beautiful Annabelle, and I will discuss just about anything in the right time and right place...but these passing conversations with acquaintances are tricky to navigate.)

No, she passed away in October.  or Makayla is almost 3 and Annabelle was 2 months old when she passed away.

There are a few ways people respond.  Some people aren't really listening.  It's true - I've gotten the strangest follow-up questions that make it abundantly clear my words have fallen on deaf, or perhaps just distracted ears.  Just layering on the awkward...Some seem appalled by their own ignorance and apologize profusely for asking...ugh, now I feel guilty.  Others launch into 2nd, 3rd, 4th-hand stories about friends (I've yet to encounter another stranger who has a similar story...perhaps we just know not to ask those innocent questions).  On more than one occasion, I've been subjected to long stories about late pets...can I just say that this tests the limits of my composure?  No.  No.  No.  I don't care how long Brixie was in your family, it isn't the same.

Most of the time, it's awkward.  One or the other becomes overly apologetic (can you picture that pity face?) or overly dismissive just to get through a few minutes of meaningless conversation, and both are relieved when it's over.  I don't blame these people and I hope they don't blame me either - there just aren't 5 simple steps to follow.  But - and it's a really big but - there are some out there who can handle such interactions with incredible grace.  They can quietly share their condolences, and I can thank them for their kindness and experience relief in being able to share the truth.

I had one such interaction just last week.  Let me just say that being able to talk with someone in passing (not the open heart conversations you have with your closest friends), but also honestly without destroying the day...that was such a huge gift.  She wasn't appalled by my honesty.  She was sorry, truly sorry, but also respectfully interested.  It's ok to ask what happened.  Do I want to pour out the details at the grocery store?  No.  However, if you want to know, it's ok to ask.  I promise, I have the short version, too.  It's not going to make me sadder.  It's not going to re-open wounds.  They're already open.  And, frankly, if they've truly healed, then poking them won't hurt any more than usual.  Tears are ok.  They're not necessary, but they're ok.  Sobbing in public - weird.  Probably need to deal with something if there's weeping going on at random (this is why church is often SO hard for me).  And the best way to respond when you don't know what to say is to say nothing at all.

The long and the short of it is, I don't expect anyone to know how to do it all.  I just realized that I've learned quite a lot along the way and, rather than writing a scathing book about the ridiculous ways people do respond, it would be more productive to share the good examples.  (I'm not saying I'm above writing that book though...) At the same time, maybe it would help the world to know that we don't know how to do it either.

Not your average 5k

On Saturday I ran my first 5k.  It wasn't glamorous.  It wasn't impressive.  But I ran the whole way, and I finished.

A couple months ago, Annabelle's nurse e-mailed me a flyer for a 5k event benefiting Trinity Kids Care.  Considering that, while pregnant with Annabelle, I had declared my goal to run a 5k in her first year (and the fact that months had come and gone with no commitment to prove it), it seemed perfect.  I began talking it up to family members and composing a support letter.  I didn't give it that much thought, but I assumed I could raise a few hundred dollars for a great cause and complete a personal goal at the same time.

It wasn't long before I had doubts.  I had never asked for monetary support for anything like this before.  Even scarier was asking people to join our team - and I blasted the support/invite to anyone and everyone.  It is remarkably nerve-wracking to send out requests with no idea if there will be any response - I wavered between excitement and self-doubt.  However, I didn't have to wonder long before I got a message from a dear friend...a message that turned into the donation of 65 custom shirts for our team and supporters.  

I have to stop here and publicly thank Briana for coordinating the t-shirt project, Nate who donated his time and talents to design the shirt, SolidT who did the printing and gave us 15 extra shirts to make up for a slight delay, and the generous donor of the money for the shirts which meant 100% of the sales went to Trinity Kids.

Then I had new doubts - how was I supposed to sell so many shirts?  Would people want the shirt even if they weren't going to participate?  About the same time, we began getting donations...I had no idea how many would wish to give.  Perhaps it gave people a tangible way to help.  Whatever the reason, and in spite of my nerves, I knew from personal experience that this was a worthy organization - if any deserved me stepping out of my comfort zone, it was Trinity Kids.  

While we're on the subject of comfort zone...can I list the things that required me to LEAP outside of mine in preparation for this event?

1. Running 

2. Asking for money

3. Asking for people's time 

4. Gathering people together from all areas of my life, and even some I hardly knew

5. Inviting people in to something very personal

6. Did I mention running?

I could probably think of more...the point is, it wasn't easy, but it was good.

The day we announced the shirt sales, I was floored by the response.  The first 50 shirts were spoken for within 36 hours and we had requests for more.  When the printing was delayed and SolidT offered us 15 extras, there were only 3 left by the next day.  Wow.

On the morning of the race, Team Annabelle was unmistakable.  I will treasure this memory.

There were plenty of reasons NOT to participate in this event.  Our grief is fresh - no one would expect us to do this.  It's hard to balance the hooplah of an event with the tragic reality of why we know about children's hospice in the first place.  It was emotionally and physically exhausting to coordinate, prepare, worry...just look back at that first picture of us crossing the finish line - I'm not beaming triumphantly, glowing with pride.  I'm beet red and dripping with sweat.  We didn't raise money to find a cure for SMA.  We didn't provide hope for another family fighting SMA.

So why did I do it?

Just because there isn't a cure, doesn't mean there isn't healing.

In the group pictures above, there are family members, close friends, acquaintances.  And they all came to show us that Annabelle is loved.  We are loved.  This event did not take away the pain of Annabelle's death.  But it's ok to smile sometimes; to rally together and remember that she has left a significant impact on the world.

Look at that dreadful picture at the top again.  See Gay in the background, cheering us on?  She and her team give tirelessly to those who have nothing to offer.  So we'll be back again next year...because this is part of our story.