A little over a week ago, my sister gave birth to what we all thought was a healthy baby boy named Drew. He was very cute and soon, I saw pictures of friends and family members taking their turns holding him over my Facebook newsfeed, which you expect with a Facebook friend has a new baby.

speakofthedeadI had scheduled a workshop for this weekend in my hometown (where my sister and her family live), thinking I’d get to see the baby and write off the mileage.

Within 24 hours of Drew’s birth though, something was wrong. He was sleeping… a lot. And while babies do sleep a lot, this seemed abnormal so the hospital released my sister and kept him for observations.

After all tests the local hospital could do were exhausted, it was decided Drew needed transport to a regional hospital so he went, by special baby ambulance setup, to a big regional hospital. Derrick and I were close enough to visit, if only to show our support and try to distract my 3 year old niece with novelty for a little while.

A few days later, he was flown to Boston Children’s Hospital where he saw specialists, had even more tests, and got a life threatening diagnosis. He passed away in his parents arms on Friday night of a rare metabolic disorder affecting 1 out of every 60,000 people. (This disease was so pervasive organ donation was only possible with his heart valves. That my sister and brother-in-law thought of organ donation at a time like this should just show you the kind of people they are.)

So I’ve been super distracted at work last week as I get news via phone calls and text messages. Derrick and I also dropped everything and headed to Boston on Friday to be with my family to spend time and say goodbye to Drew. We are both back at work today, trying to pretend everything is normal. And so far I’m not doing a great job with it.

If I was a stranger, I might wonder why the aunt of a brand new baby was so upset when he died.

I am upset because, for this pregnancy in particular, my sister and I have been a lot more in touch, via morning text messaging and getting to see her a lot more than usual in person the last six months than I normally do.

I am upset because I know how much this child was loved and wanted before he even was born.

I am upset because it was a roller coaster week of good news and bad news, with a final terrible diagnosis. (I won’t lie, there was some relief with knowing what it was.)

I am upset because I wish I could be there with Michelle and Justin during the coming days but I know being there wouldn’t necessarily help anything.

I am upset because I am facing project deadlines at work and, while people have been relatively understanding this past week, that understanding will wear out at a certain point.

So I’m sitting here, doing what I can at my computer workwise and ready to head to my hometown for a memorial service. Not entirely here, not exactly there.

Who knew having a family member with a sick child was so stressful and hard? I didn’t. And I certainly hope if you’re reading this, you never have the opportunity to find out firsthand what it is like to lose someone who should have gotten to be around a lot longer.

If you do know someone with a sick child, or something that has just lost a child, I urge you to reach out to them. And in case you don’t know what to say, here’s some ideas.

To those who have reached out to me with phone calls, text messages, social media messages, emails, and cards, thank you. Despite having been through several major losses the last few years, this one feels very unique.

And to act like it didn’t happen seems disrespectful, and honestly kind of weird.

So thanks to Baby Drew for teaching me this week a lot about love and life.

Thanks to those who dedicate themselves to the medical field for everything from entertaining my three year old niece while her parents meet with doctors to specializing in obscure disorders enough to give answers to puzzling diagnoses.

And thanks to my family for being strong, loving, and supportive of one another.

Hug your loved ones close. Some of us don’t get much time here on earth so making them feel love while they are here is that much more valuable.

Update: If you want to read a very moving obituary: http://bangordailynews.com/2014/01/20/obituaries/drew-isaac-dubois/

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