Dan’s Note: This post is incredibly personal. In the past, I’ve usually kept very personal matters off this blog. This, however, is a time when writing will not only help me, personally, but I think may possibly help others as well. Due to the subject matter, this will be a multi-post series. Not to boost readership or stats, but because I don’t think I could handle sitting down to write it all out at once.

Writing is a bittersweet thing. It’s easy to write when things are fine and your mind is clear and focused.
But what happens when your mind is foggy and your heart and soul is devastated? When you become dependent upon writing to help you sort out your feelings and help make sense of life, being unable to focus and write pours salt on the open wound.
Some of you who know me, know how close my sister and I have always been. My sister and I have been there for each other when life has thrown massive curve balls at us: from her first troubled marriage and divorce, to my many mistakes as a young father and husband with my own family. We’ve been there to pick the other up, dust them off, and help them get back on track. We’ve been there to talk each other off the proverbial ledge several times.
My sister told me months ago that she was pregnant with her 4th child. Everything was going fine and there were jokes that with this new baby they’d have a big enough family to have their own sports team. On July 7th, when my sister and her husband went for a routine ultrasound, at five and a half months into the pregnancy, to find out the gender of their baby.
That’s when the dark came swirling in.
If I leave here tomorrow
Would you still remember me?
For I must be traveling on, now,
cause there’s too many places I’ve got to see.
But, if I stayed here with you, girl,
Things just couldn’t be the same.
cause I’m as free as a bird now,
And this bird you can not change.
Lord knows, I can’t change.
They were told that something wasn’t right. After what I’m sure felt like an eternity, doctors and nurses consulted and many phone calls were made, and they found out that their baby had a massive infection, which caused so much swelling that they weren’t sure if the baby was still alive.
I was at work, on that Monday, when my sister called me. I could tell immediately that she had been crying and had bad news. She told me that the doctors and nurses found that the baby had so much swelling, that its heart was slowly being pinched, which was causing the reduced heart rate. They also found that the baby’s head was twice the size it should normally be, and that the baby’s lungs were not developing past the extremely early stages. An appointment was set up for later that week for them to go in and do some more in-depth testing to find out exactly what the prognosis was.
After the additional tests later that week, my sister called me with more bad news: The swelling was much worse than they had originally thought. The baby’s lungs would never develop, the swelling had increased and the heartbeat was barely registering, and the only part of the baby’s body that was not marred by infection and swelling was its fingers. Through DNA testing of the placenta, they were able to determine that the baby was, indeed, a boy, but that his fragile little body was besieged by Downs Syndrome, hydrops fetalist, and tubal sclerosis.
Through this testing they were able to tell my sister and brother-in-law that this was not something anybody could have prevented, as several ultrasounds and routine exams did not find it, and was not anything they caused. This was one of those “rare situations” where “it just wasn’t meant to be.” They were also assured that they could try again to have another pregnancy in the future and that the odds of this nightmare repeating were virtually impossible.
Some people I’ve talked to about this have looked at me in an almost dumbfounded manner, as if to say “what’s the big deal? The baby wasn’t even born yet…” The big deal, to us all, was that this baby was a part of our lives even while it was in utero. The baby was kicking and moving. They had gone to hear their unborn baby’s heartbeats in previous appointments. I’ve always tried to be an involved uncle and would do anything for any one of my three nephews and to know that there was nothing I could do to help save this little baby, was more than I could take.
When my wife was pregnant with our first child, if the baby turned out to be a boy, we agreed to name him “Ethan Daniel”. In what turned out to be for the best, our first child was a girl. Then our second baby arrived, a boy, and we decided to name something different than “Ethan” - much to my dismay. If my sister’s new baby turned out to be a boy, she had asked if they could use the name “Ethan Daniel”. Needless to say, I was ecstatic to not only have the honor of them giving the baby my name, but also that there would still be an Ethan in the family.
So, as I was saying, even though this child was not born yet, it had already meant so much to all of us.
That week seemed as if it would never end for any of us. While I was at work I talked with my sister over instant messaging during the day, as I used all my energy to focus on not breaking down. After work, on the way home, inevitably our mother would call because she needed to talk to someone. When I’d get home, then, I’d have to update my wife on the latest.
One afternoon, we were talking online, and my sister asked me what I thought of the name “Ethan Samuel” for the baby. Half joking, I asked her “What, my name isn’t good enough for the baby anymore?!” She went on to tell me that she hoped I would still allow them to give my name to the boy, but that under the circumstances, they didn’t know if I would want to give my name to a nephew I’d never get to know. I told her that, unless they had changed their minds, I would still be just as honored.
Ethan Daniel. My baby nephew that I’ll never get to hold or hug, see smile or hear giggle, chase through the house or cheer on in a Little League game.
More To Come…
Related:
Cause I’m As Free As a Bird Now… Part Two
One of the hardest things of being your online friend is that I am not there to give you a hug and more support during this difficult time.
Some people do not understand the complexity of the situation, it sometimes seems like the only people that can truly understand are those that are going through it… I know you are not asking for this, but I am proud that you have been there for your sister to help her through this, along with supporting the rest of your family. That is a task that not everyone is equipped to do.
You and your family will continue to be in my prayers, and I will make sure to give you a good hug for being such a kick ass brother when I get to meet you in person.
[...] Words Are Not Enough Posted by Dugzor Few things are more difficult than seeing a friend going through something so heart-breaking. [...]
Daniel, I’ve been so absorbed in my life this week, I didn’t take the time to read your entry. I am sorry for that, but even more sorry for your family’s loss.
Those who claim it isn’t such a big deal because the baby wasn’t even born yet are utterly mistaken. Your sense of family will kick in as soon as you know there is a new life coming in to join. And now the void is just as big as the one left by a person you actually get to meet.
For you and your family, all my love. And with a knot in my throat, I can tell you that maybe Ethan Daniel won’t play in the little league, but he will be cheering for everyone from where I think he is now.
[...] sometimes wish I could do more to help my friends. Watching Daniel go through so much lately has made a big impact on me, because when everything is going wrong we need to remember that life [...]
I found your site through Logtar. I am very sorry for your loss. I know all to well of the emotions you are feeling and will always feel about your family’s circumstance. I wish I had words of comfort but I know all too well, there simply aren’t any.
Daniel - I’m so sorry to hear about this experience for your sister and your entire family. I think you know that I can relate on many levels, and it is not easy to talk about or deal with on a personal level. Stay strong for others, and it will be returned to you, which is what I’m sure you did.
[...] De Guia presents Cause I’m As Free As a Bird Now… posted at deguia.net. This is an extremely touching and personal article by Daniel. Anyone [...]
I found your site through the Manival, and I’m so glad I did.
I’m so sorry for you and your family’s loss of this precious child. It amazes me still how some people do not understand such loss and dismiss it as if it’s nothing, including those who lose a child through miscarriage.
My heart goes out to you and your family.
Your blog is interesting!
Keep up the good work!