The Worst Thing

I have said before that one of the things that gave me hope and comfort in the early days of Linc’s diagnosis was frequenting a chat group for parents of kids with DS. Over time, as the need for support was replaced by the need for information, I found myself relying less on the chat group and more on the emails and resources from the Down Syndrome Association of Central Texas (DSACT). The DSACT is amazing, both for creating fun events for the DS community and for providing information to parents, schools, churches, and anyone else who will listen.

Although I read the updates from DSACT and occasionally attend the playgroups and parties (like the Buddy Walk and big Christmas party), I am not as involved as I could and probably should be. Still, I see the names of the same handful of people sending out emails, newsletters, evites. I get to know their names and become familiar with them as the unseen good guys. I know my kids have played with their kids at playgroups and I have smiled at them in passing at events. I know they are the modern day giants whose shoulders I am standing on when I am able to succeed in joining the DS community or advocating for Lincoln’s needs.

So, this summer, when I read in one of the emails that the recently retired president of DSACT went into the hospital for heart surgery, I was compelled to follow her story. I read her blog and became very emotionally involved in her story and her fight, though as far as I knew I had never met her. In a shocking turn of events, she did not recover from what should have been a fairly routine surgery. The 39 year old otherwise healthy woman simply did not wake up. Her heart just refused to restart, and her husband and mother, who had volunteered to take over her blog while she was recuperating, were suddenly faced with making the terrible decision to take her off life support and write about the whole thing to an online community who had been relying on the blog to follow Lori’s progress.

I’m sure when they agreed to keep up the blog, they were expecting to write the story of Lori’s triumphant return to health. Instead, they had to write about her too still body and how the children reacted when they were told that their mother would not ever wake up. I’m not sure I can explain how affected by this I was, and I’m not altogether sure why it hit me so hard. I mean, I really only knew Lori‘s reputation, not the warmth and light of her personality that others praised. I knew her as a fighter for children with special needs, but I never sat on a committee with her or saw her in action as a lawyer, advocate, or even as a mother. But, in the days after her surgery, I found myself crying over and over again throughout the day, thinking of her motherless children, thinking of the new leadership of DSACT feeling rudderless without her, thinking of her husband and mother sitting down at the keyboard to write out the details of her last few moments when likely all they wanted to do was fold into a ball and weep themselves.

One of the things that was going through my mind constantly was the phrase the worst thing. It sounds morbid to say, but I think often how having a less than “perfect” child seems like the worst thing that could happen to you when you are pregnant. And then, when you have a child who is exactly what you feared in those worst case scenarios, all you can think is how lucky you are to have that child. Because, of course, the real worst thing is something far different. The real worst thing would be to lose that child, and suddenly you know it so keenly it hurts.

When Linc went into the hospital this winter, I tried not to let myself think of the worst thing, tried not to think of the stories I had read too often on that first online community I visited of children who, like Lori, had checked into the hospital for some seemingly routine procedure and never come home. I’m a worrier at heart anyway, and with Linc sometimes my worrying goes into overdrive. I think that one of the big reasons I stopped checking in on that online group was because I couldn’t handle those unexpected tragedies. And then we were there, like so many posts I had read, standing in the emergency room with our tiny son, terrified of what it all meant.

And at that moment, when all the what if’s started flooding my mind, my phone rang. Looking back, I’m not sure why I answered; maybe I thought it was a doctor or hospital billing question. But no, it was our pastor’s wife from church, calling because she was thinking of Lincoln and just felt led to call and check on us. When I told her where we were and what was happening, she just said that she understood then why she had felt compelled to call – because she just needed to pray with me for a moment. She prayed and I cried, standing in the hospital corridor, and when she was done I was ready to face the moment head on.

I mentioned before that I would get into the kindnesses that kept us afloat when Linc was hospitalized in a future post. For some reason, I knew I wanted to write about Lori’s death and those kindnesses together, though I’m not sure why the two are combined in my mind. Now I realize that it is because, in my mind, the worst thing feels so much closer since Linc was born, like we dodged a bullet when he was born healthy and happy and beautiful, and now that I know how lucky we are I am always a bit jumpier around the threat of the worst thing catching up to us somehow. Those days in the hospital were like being dunked back into the early days, when medical fears filled our thoughts and fueled fears we had never even imagined facing. And because of that, the support that came to us was so inexplicably linked to our existing sense of gratitude, our love for our son, and our need to believe that we won’t have to face the worst thing for many, many years. In short, it was a lifeline in deep waters with a heavy current that was already tugging at our pant legs.

Both sets of grandparents offered to fly in and help. An aunt and uncle watched Nico until the grandparents arrived. People we hardly ever get a chance to see offered to bring us food, friends came over to let the dog out, people all over the country were praying for us. Nurses I knew from work who taught university students during the day cared for us and got us released from quarantine so that we could take Lincoln to an ice cream party in the hospital cafeteria. A Sunday School class in my parents church took up an offering for us. Twice.

Lori’s family had the same encircling of love and support. It’s fairly common practice when someone goes into the hospital, really, but at the same time, it’s proof to me that Lincoln’s life matters. Not just to us, who know that losing him would be the worst thing, but to everyone who knows him, either just by reputation or because they have held his little body in their arms and seen his crooked-toothed smile. It all makes me realize, with tremendous joy, that there are so many people in the world, the callous perfect-tooth-loving world, that agree that losing someone like Lincoln would be the worst thing for them, too. It makes me realize that he is loved broadly and deeply, as we all hope to be, as many “different” people fear they will never be. And yet, as we all deserve.