Sunday, January 17, 2016

Something Ordinary


So, life goes on.

We go back to work, do the laundry, slowly realize that there’s no longer a reason to panic when the telephone rings.

One day, Jesse’s mom points out to me that he’s been gone longer than he was here.
The timelines don’t make sense. He was only here for a moment. He was here as far back as I can remember.

I know this confusion is only a tiny fraction of the trauma and disorientation his parents are experiencing.

I’d like to end this post with some sudden sighting of a ray of sunshine, with a symbol or a moment or a morning of new hope. But, I don’t think it works that way in real life. I think the path to recovery is jagged, whether the injury has been small or large.

Ordinary things happen, whether you’re ready for them or not, and so I thought it was time to talk about some of mine, if for no other reason than that I don’t know how else to transition what I’m writing here.

I haven’t the heart to take down the Christmas tree because one of the dogs is so happy sleeping under it. I’m actually considering some sort of year-round indoor tree.

There’s a potentially exciting new client in the works.

Last night was a friend’s birthday, and the food was good and there was a lot of laughter.

I keep thinking Tori is all grown up and then she shows me something new. I begin to think it will always be that way. Maybe everything is. Maybe everything is just a little different from one day to the next, even when we don’t see the subtle shifting.

Saturday, January 9, 2016

After the Ceremony

When I posted yesterday, I said that I hoped to circle back to the ceremony. But then, last night, my 19-year-old daughter, Tori, showed me what she'd written. I think she's said it all, and she agreed to let me share it here.

It's Thursday evening. I'm sitting on the floor at my aunt's feet. She sighs. "This really sucks," she says. "Yes" is all I can say in return. 

What else do you say to someone whose son is in the wooden box on the mantle?

By now you've probably heard all about Jesse, the premature baby boy who popped into our lives one December and hung out just long enough to change everything forever. But unlike the stories you've heard, this one isn't really about Jesse. It's about me. It's about his moms. It's about his aunts and uncles and close friends he never got to know. It's about family. Real family.

It's 9 o'clock on Thursday morning and I'm watching my aunt pace around the church. The memorial service doesn't start until 11. There's a table with framed pictures of Jesse and his moms, a guest book is laid out in front of it. The church is being filled with flowers. At 10, other family members start to arrive. They all follow the same strange pattern, entering the room, beginning to cry, hugging the nearest person and then, somehow, coming away laughing. We sit down in a full church at 11 on a Thursday morning. No one is surprised except my aunt.

While my aunts sit together, wrapped in their son's blanket, I look around. I shouldn't be surprised to see that most of their "family" has no actual blood relation to them. After all, I have no blood relation to them. But that doesn't matter now. I am standing behind them in a church pew watching them cry, holding another of their nieces in my arms. Where else would I be?

"What happened at the service?" my aunt keeps asking later. She was too overwhelmed to know what happened during most of it. We tell her the most simple things, the core things that get filed away and for some reason never forgotten. People spoke, sang songs. Your niece talked the whole time. Your mother cried. Everyone compiles their scattered memories and start to form a whole picture. It's full of little things. Specific details that stand out to certain people and not others become mixed with perceptions. The conversations vary. Stories are shared about the baby, about hospital stays, about lives. Jokes about kids, jokes between siblings and old friends. There's chocolate cake and costume changes. 

Before I leave for the night, I sit down next to one of my aunts. As she wraps her arms around me and kisses my cheek, I hear my boyfriend's words in my head. "They want to be your family," he said, "I see it. You just have to let them."

As I looked around at the crowd of people, I saw proof of that. They all came from different places, different worlds, backgrounds, struggles, and yet, they were all here to mourn a child they'd never even known. All because of my aunts. Because of what they had built. Because they let us in.

Friday, January 8, 2016

Saying Goodbye

Yesterday was Jesse's memorial service, I don't have a lot to say about it yet, because the defense system my mind and body opts for in the worst of times can best be described as "total collapse," so I have no clear thoughts and no inclination to get off of my couch today. I will very likely circle back.

For those too far away to have been with us yesterday, I thought that I would share what I wrote about Jesse for the service. I also want to thank everyone who was following Jesse's journey for the overwhelming show of support, words of encouragement, prayers, offers of practical help and more. There is much beauty in the world, even in the worst of times.

A few nights ago, I was driving alone at night thinking about Jesse and I saw a shooting star. That seemed appropriate, because a shooting star is so beautiful and vibrant and active, and then it's gone too soon. But then you smile. Even though it was fleeting, seeing it somehow made you better.

Usually, when someone stands up to speak under these circumstances, it's to pay tribute to someone they've known for years. Jesse was only with us for 13 days, and I only knew him in glimpses through a window and the stories JoAnn and Julie shared. But, like many of you, I loved him with my whole heart during those 13 days. 

It's surprising how much you can learn about a person under those limited circumstances. The first time I saw him, I expected him to be tiny and fragile. He was tiny. But, Jesse had a powerful spirit from the beginning. Though he weighed less than two pounds, there was strength in the way he waved his tiny hands and kicked his little feet. At 12 1/2 inches tall, he thought he was ready to take charge. He made a valiant effort to remove his equipment, push away the pads over his eyes with the tiniest hand I’d ever seen, and even kick the occasional nurse if he didn’t like what she was doing.

He knew his moms, and responded to their presence, their voices, and their touches. And, in his short life, he brought out aspects of them I'd never seen before. They loved him, and he loved them, and for 13 days that circle of love was all that existed for the three of them.

13 days, it turns out, is enough to change the people around you, enough to start ripples that will keep moving outward forever.


Of course, we would all have preferred to keep him with us longer, to watch him grow and see where that fighting spirit would have taken him. But, if heaven is the perfection of love and community, then Jesse couldn't have had a better bridge. The outpouring of love, support, and prayers sent his way was vast and unceasing, steady and certain in a way that comes to pass all too infrequently in this world. He couldn't be better prepared for the next, where we'll see him again one day, his powerful spirit free of the struggles he faced in that tiny body, but just as loved.

Tuesday, January 5, 2016

The 13th Day

Most of you who have been following Jesse's story know that he slipped away from us on December 26, at 13 days.

Services will be Thursday morning at his mothers' church.

You can see Jesse's obituary and access the guest book here.

Wednesday, December 23, 2015

Day 11 for Jesse

Many of you have seen brief Facebook posts about Jesse having a rough couple of days this week.

Jesse has had some irregularity in his breathing and oxygen saturation has been unstable. Of course, this is hard to watch. But, it's not unusual for his stage of development, and it's stabilized quickly each time--often without intervention. 

The real scare came in the middle of the night Monday night/Tuesday morning. Just after 2 a.m., JoAnn received a call letting her know that Jesse had perforated his bowel and the pediatric surgeon was on his way to put in a drain. The surgeon was able to clean out much of the contamination from the spilled bowel and put in the drain, and Jesse tolerated the procedure well. He's been on antibiotics for about 36 hours at this point, and we're just waiting and watching.

It's been a stressful few days, but, on a positive note, he's back up to his birth weight--that's a gain of 3 ounces. That may not sound like much, but it's about 10% of his body weight, so it's not insignificant.

And, as always, he's kicking, waving his arms around and trying to take charge. His spirit has not been diminished by these obstacles.

I truly believe that all of the love, prayers and positive energy you are all sending his way are strengthening him. Please keep them coming!

Here's a bonus picture of his foot, just because it's so tiny and cute.


If you missed the beginning of Jesse's journey and want to read the whole story, start here.

Saturday, December 19, 2015

It's Day 7!

I thought I'd lead with a picture today, because really you just wanted to look at him, didn't you? Though he theoretically can't see yet, he's opening his eyes and turning his head toward his moms.

It's day 7, which is very exciting. Of course, it's exciting simply because it means that Jesse has been holding his own for a week, but it's also an important landmark: 90% of brain bleeds in premature infants occur in the first seven days. Jesse was scanned last night and he's all clear. So, that's one major sigh of relief we can all breathe.

There are still some complications, which are to be expected. He has two small holes in his heart, which are not unusual at this stage and often close up on their own as the baby grows. We're hopeful that they'll resolve themselves, but if not, we have good treatment options.

He's also spilling a little salt in his kidneys, so his sodium levels are low. Again, this is to be expected at this stage and is being treated.

On the upside, he's started to gain a little bit of weight, and he's as feisty as ever. Kicking and waving his arms and making a valiant little effort to remove his equipment. That fighting spirit (and your good thoughts and prayers) have brought him this far--please keep them coming!

On the home front, mom has had a rough week. She had to make a trip to the emergency room two nights ago and was diagnosed with pregnancy-induced hypertension (though I'm pretty sure stress is playing a role in that, too). She's on medication now and doing okay, but I wouldn't mind a bit if you added her to your prayer list, too.

Read the next update here

If you missed the first installment, you can see Jesse's introduction to the world here. We'll keep you posted.



Wednesday, December 16, 2015

Would You Like to See a Miracle?

When I let too much time pass without posting on a blog, I start to feel like I need something really momentous to break my silence--and, that often means that I don't post for months. Or, in this case, a little over a year.

Fortunately, something momentous happened.

My fake nephew, Jesse, was born early Sunday morning.

I'm going to show him to you in a minute--he's incredibly beautiful--but first I want to tell you a little about Jesse's arrival.

He wasn't due until March 28.

That means he was only 24 weeks in the making when he made his very unexpected arrival into the world at 4:25 a.m. on December 13. He weighed 1 pound, 15 ounces. His mom, who has been one of my closest friends for years, went straight into surgery after his birth.

If this all sounds terrifying to you, you're not alone. It's been a very intense few days. He's in an incubator, on a ventilator and getting blood transfusions.

Don't worry. There's a lot of good news, too. But first, take a look at him.

See how he has all those tiny, perfect features? Aren't you a little in love with him already? No? Just me? (I don't even believe you.)

So, here's some of the good news:

His mom is fine and home already.

He's in day four as I write this. Four days! That means he made it through the trauma of being born unexpectedly AND through the transition where he lost mom's hormones and immunities and had to fend for himself...and he's still kicking.

He IS kicking. And waving his arms. He may look like a sparrow, but this kid has SPIRIT. Maybe it's not entirely good news that he's trying to pull out his breathing tube and push the protective pads off of his eyes, but...it kind of is, isn't it? He's putting up a fight. We need that.

Of course, there are a lot of challenges ahead, and a lot of unanswered questions right now. So, if you're the praying type, please consider adding Jesse to your intentions. If you happen to have a prayer circle or Bible study or just a group of friends or family you can ask to do the same, please do. If you're not religious and you have some positive energy or intentions to the universe or any type of good vibrations at all, we'd welcome them, and so would his moms.

The kid is putting in a valiant effort, but you can't do it all on your own when you weigh less than two pounds...or when you've just given birth to someone who does.

Read the next update here.