Going Through The Unimaginable

We fell the minute we first heard her speak.  She looked like she was barely five years old, she spoke like she was 82.  You know, the way your grandparents started to talk, if you were lucky enough to still have them, without a filter and giving zero fucks about what anyone thought of them.  After all, 82 years earns you the right to as much moxy and attitude as you want, but so does years of battling cancer at such a tender age.

Waiting in the playroom at Chai Lifeline we tried to encourage Aleck to introduce himself to this powerhouse of a small creature, thinking he just might be able to speak her language.  I think even he was intimidated by her presence.  And when her parents walked into the room we knew the deal was done, these were our people.  Dan and Craig had basically the same haircut and hair color, and so did Lisa and I.  In a nanosecond we had made plans to meet up with them at the upcoming Great America trip.  Not only did we find each other in a virtual sea of families but we spent the rest of the day together, Aleck and Mia side by side in strollers as we navigated the overstimulation that neither of these kiddos could have endured without their new buddies.

Over the next two years, we’d see each other every few months or so, birthdays, New Year’s at their home, playdates in the city, a beach day in HP.  We are recognized that we understood each other, we knew what it was like to carry a vomiting child through another person’s house hoping you’d make it to the toilet on time and then want to run and hide.  We understood that food was always a tough issue and if felt comforting to be with people who wouldn’t judge, lecture, or enlighten us on how they would do things if those were their children.  Sitting on our back deck, listening to the Grateful Dead, feeling like we found a family who really understood us and hoping to high holy hell that it would go on like that for years.

Aleck knew about Mia’s cancer though at the age of four he didn’t understand cancer.  He also knew not to talk about it when we were with them but every so often he’d ask, “Mia’s sick, isn’t she?  Is Mia’s cancer going to come back?”  And oh so confidently we’d tell him everything is going to be OK.  But when Mia ended up at the Shirl (Lisa’s fabulous nickname for the new RIC, the Shirley Ryan Ability Lab), it became apparent that our confidence had been shaken.  But Aleck loved to visit her before and sometimes after therapy appointments, fighting with her over the cheddar cheese Pringles, and whose turn it was on the IPad.  Crawling into her bed to give her cuddles and generally running circles around her room, he wouldn’t leave her alone until she’d open up to him and he was more successful than not.

We waited until the day before her memorial to tell Aleck about Mia’s passing, wanting to give him just enough time to process the information before going to the memorial so we could say our goodbyes.  Only days prior they had Facetimed in our living room, Craig and I holding back our tears as we watched the two of them exchange some pleasantries and talk about favorite IPad games.  But when we told Aleck the news he didn’t have anything to say, he didn’t have any questions, and he hasn’t brought it up since.  There were over 700 people at the memorial, held on what would have been Mia’s 8th birthday, a cold and rainy day in Deerfield truly fit the mood.  I brought my camera, but only subtly, since I didn’t want taking pictures to upset anyone or feel intrusive on such a heartbreaking event but the overwhelming need to document this moment in my own way was too strong to resist.

Just as we suspected we saw our old neighbors there, Anthony and Rina who had lost their son Lucas to cancer barely a year ago.  I hadn’t seen them since they moved out of Logan Square, they were our next-door neighbors, but Craig had run into Anthony the day he got Lucas’s diagnosis, in the brand new Lurie cafeteria while Aleck was recovering from hip surgery.  After we got home I spoke with Anthony on the phone and he was hopeful, they had a fight ahead of them but they were prepared to give it all they got.  And they did.  And so did Dan and Lisa.  And so did the mom who I met over a mom’s group whose daughter had just gotten out of RIC inpatient and was giving me tips on how to survive inpatient living.   And so did the Sommers who I barely know but we have our Superman Sam t-shirt and I read her blog like an addicted fiend hanging on her every word and every syllable as she documented her son’s final stages of life.

Yes, we recognized a kinship with our friends, going through medical struggles with such young children, but we can’t even compare our stories.  We have no right to compare our stories.  Because for now, we have Aleck and there is no imminent danger that we can foresee.  One day, after a particularly popular blog post I wrote the mom who had lost her daughter reached out to me “lamenting” (her fabulous word), about the lack of attention and response she’d been getting for her fundraising march for her daughter’s cancer.  I could tell the level of despair was high, the feeling that the world had somehow forgotten her horrible struggles and her horrible loss and had moved on with their lives was a painful feeling.  I wanted to help, I sent her all kinds of articles, I tried to show empathy and sympathy and compassion as my heart shattered for her.  Her daughter’s story was over, her sweet little girl was gone.

But the grief wasn’t gone, the love wasn’t gone, those battle scars never go away.  Aleck’s story keeps going (baruch hashem) so I keep writing and I feel lucky that you keep reading.  How do you hold onto your beloved child after they physically leave you?  How do you keep their energy and story going once they are no longer there? Anthony and Rina are very vocal about their grief online, they don’t want anyone forgetting for a second the hell they’ve been through, and they still need and want their community of Lucas Bear Heroes to have and hold and keep them moving forward.  Because after you lose a child the hard part is just beginning.  The grief and the guilt, the ghosts that live in your walls, your dreams, your souls, you never want to lose them, you never want to let go of them and why should you.  They will always be a part of who you are.  That mom has her daughter’s picture as her cover photo on Facebook, and so does Anthony, and Rina has it as her profile picture, and Phyllis just shared the heartbreaking moment they first found out the terrible news, and for Dan and Lisa, it’s just beginning.

This is my greatest fear in life.  Hell, this is every parent’s greatest fear in life.  Losing Aleck would destroy me, rip my guts from inside of my body and take away my identity completely.  For parents of only children losing a child would mean that I was no longer someone’s mom, and as so many moms and dads know, being someone’s parent is the greatest joy we’ve ever felt in our lives.  You basically feel like your heart is going to explode with love every single day even when you are yelling at them to turn off the god-damn television or put away the freaking IPad already. I know for me it’s why I haven’t given up hope that someone else will add to my title of parent one day soon.

But where do we go from here?  How do we continue to support our grieving friends once the dust has settled?  How do we make sure they all know that even though it might seem like we’ve moved on we haven’t?  Truly the one great thing about social media is that if we choose to we can build a community for ourselves when times are hard, a group of cheerleaders to “like” our posts, comment on our struggles, and let us know that we are inspiring almost every single day.  I know I’d be lost without our community.  So how do families continue to get that strength they need from these outside sources once the warrior child is gone from this earth?  And how do we as their cheerleaders continue to push them on since they just might need it more now than they ever did before?  I don’t know.

To view my album from Mia’ Memorial click here.

Aleck & Mia cuddling at the “Shirl”.