Hard News

BACKGROUND

In May, soon after he went to bed one night, Aaron threw up a few times. I thought, Ugh! Here we go: stomach bug. But miraculously, no one else got it! (fist pump)

In June, soon after breakfast, Aaron turned white as a sheet, said his head was hurting, and then threw up a few times and slept all day. I thought, another stomach bug? And I cleaned liked crazy. Again, no one got it! (fist pump)

In July, same song, different month.

So while we were at his annual physical, I mentioned it to our pediatrician: How is it no one else is getting sick? Could this be migraines? He prescribed some meds and said, Probably, but let’s do an MRI just to be safe.

Happened again in early August, but nada in September. By October, it had been 6 weeks, so I was about to cancel the MRI when it struck again October 3rd. So we went ahead with the MRI on the morning of Friday, October 7^th. I hardly mentioned it to anyone since it was just a formality. Josh was out-of-town.

I woke up from a nap at 4:15pm that afternoon to a call from our pediatrician. The MRI results were back. Already?? And there was hard news. There was news?? There was news.

DIAGNOSIS

And it’s complicated. Too complicated for this blog. But all I really heard that night through all the reading and conversations was “tumors.” That word was slowly sending shock waves through me, turning me inside out.

It wasn’t until we spent the following Wednesday at the Children’s Hospital that I felt like we were finally getting a handle on what his diagnoses were.

Like I said, it’s complicated, but the headliner seems to be: Aaron has a non-contagious genetic condition called NF1 that causes mostly-benign tumors to develop, mostly in childhood/adolescence. Cases of NF are unpredictable and seem to fall in a very broad spectrum, depending on where the tumors appear and what they affect. 

Two things I have found especially difficult about this:

• Tumors. I hate that word. Even the doctors have all sorts of ways around it: gliomas, hamartomas, lesions, bright spots, etc. But when the fundraising nonprofit for your condition is called the Children’s Tumor Foundation, you know it’s unavoidable. We still don’t know their severity in Aaron’s case – so we wait for future tests and symptoms to bring clarity. And we pray that he doesn’t get any plexiform tumors, because those are the untreatable monsters that keep me up at night.
• Trying to reconcile in my head my beautiful, healthy, happy, intelligent little boy with these terrible realities and possibilities. It feels like a monster is threatening my child, and there’s nothing we can do to stop it. It may not show up in all its ferocity. But I can’t assume that anymore now that I’ve seen its picture and know its name. 

Needless to say, it has been a really hard couple weeks. I almost feel like a wimp saying that, since no tragedy has actually occurred. There was no terrible accident or major surgery. Except for another migraine (post-diagnosis so this time it freaked me out to see him looking sick), Aaron is still as smart and healthy and happy as he was last week or the week before. Nothing has physically changed. So why does it feel like there’s been an earthquake and nothing is quite the same? How could these pictures (from the MRI) and words (from the doctors) have so much power that even writing this now, I have a physical reaction to it? But I do. I just do.

There is much more to say, about the shock we have felt, the ways God has shown grace, and the long road ahead, but I’ll save those for another day. Because this subject doesn’t have a nice little storybook ending. And I think that’s where part of my grief comes from -- the open-endedness of it. So I’m not going to wrap it in a bow here either. There is time for the bright side. Another day.

GOING PUBLIC

One more thing: I have really wrestled with whether to share this diagnosis so publicly. So if you’re concerned, it might help you to know…

Why am I telling you this? Because...

• I am finding the effort to hide what we are experiencing more trouble than it is worth. There’s no better way to become isolated than to hide the biggest thing that’s happening to you. And a wise friend warned me that secrets gain power from being secret.
• I’ve found there is no middle ground between “I’m fine” and “My son has brain tumors.” I’ve tried “It’s been a rough week” or “We’re dealing with some medical issues,” but they just make it obvious to the other person that I’m hiding something from them, they could actually imagine something worse than the reality, and I hate pushing people away. You might think, Who cares if you’re not close anyway? But what if I know her daughter has sickle cell anemia and we could bond over shared experiences in hematology? Or this other acquaintance has good advice on how to talk with the kids about it? But suddenly she knows more than our closer friends? It is remarkably difficult to know where the boundaries fall, who needs to know what. So we’re just doing the best we can.
• I believe that some people are called to live privately; that’s what they value and prefer. I totally respect that. I also believe some people are called to communication, and for better or worse, I am one of them. It kills me not to. Jen Hatmaker gives me hope that this will maybe not have dire consequences on my children. After all, God made me their mother. #blessthem #prayforthem
• I am hoping and praying that sharing this news will not hurt my kids but rather help provide the community and support we all need. I am optimistic that people will not think less of my son because he has this condition, and I am hopeful that it will not limit his future in the least.
• This FB group and my blog only reach people we know pretty well anyway, and I’m getting worn out trying to remember who all to call or email with updates. I considered CaringBridge, but that just creates a whole other thing to check, so why not use the platform I’m already on?
• I am learning and feeling SO much already that I really want to record and share, and I don’t see that letting up for a while. See #3.
• The kids know (out of necessity) and once they know, the cat’s pretty much out of the bag.

So rest easy, knowing that I’m already worrying about it for you, and we can both hope God’s still in control and He (or Josh) won’t let me do anything too dumb.

Next update: Now What?