there's a little boy who holds my heart :)

Knocked Up, Knocked Down

I should have had a 4 month old yesterday. I often wonder when I'll stop counting. 
My normal is not normal. My normal is heavy. It's exhausting. It hurts. 
I don't fit in where I used to. 
I'm angry. How does everything manage to go on, when my son does not? 
How come there is no book like What to Expect When You Didn't Get What You Were Expecting? Where are the instructions for people that don't know how to just be? 
When does it hurt the most? Finally, a question with an easy answer. In the car, all alone. Music makes me think. Silence makes me think more. When I see babies, especially boys. When I see the For Sale sign in my yard, and realize I will have to take his name off of the nursery wall... and it won't be put back up. When people ask "What's wrong?" or "How are you?" and I answer with "nothing" or "fine". The short answer: always.
It drives me crazy that people don't know or care that he existed. The little boy that is the biggest part of my life, to others means nothing. I see him as my son, others see him as a painful trigger. 
My mind is tormented, every day brings a different thought on what to do next. Even if I could have another baby, can you imagine that pregnancy? I don't see how I would make it through. The constant anxiety and fear that something could be going terribly wrong... 
All innocence in that sense has totally been lost. 

"Don't let anyone stop you from being exactly who and how you need to be.  Do not stop.  Do not stop.  Get up, stand up, throw those fucking hands up.  Push out the night.  Hide from the daylight.  Embrace your endless, enraging tears for your child, your daughter, your son, your big sticky stinky shitting fucking life.

It's true, it really does suck this much, and it always will.  Always always always.  It will always suck exactly this much that you and me and my wife and your grandparents and our siblings lost a life that was going to be amazing." - glow in the woods

Gavin. It means Little Hawk. Or Battle Hawk, in the Welsh meaning. I didn't look this up until after his life, but it fits. His main NICU nurse told me that before he died she thought he looked like he was ready to fly away, and fly away my little hawk did. 

Most of the time when I'm bored at work, I find myself surfing the internet. I'm usually reading about one of two topics. EMS or baby loss. While sometimes it is totally depressing to make myself think about things, other times it is also therapeutic. I don't think I know anybody in my personal life that truly understands where I'm at right now. The fact that I really have nobody that "gets it" leads to a lot of small meltdowns. But on the internet... I fit in. I'm sadly welcomed in. There are stories similar to mine and some far more heartbreaking. But they know my words. They speak them even before I do. It's a horrible bond, but a comforting one. I know some of them read here, and I read there, and I'm so very thankful for them.

One site, faces of loss, shows such normal women and shares their stories. Some are so incredibly close to mine. Another shares stories just through words. I found words tonight from an unnamed mother that are so incredibly dead-on for me that I need to post it here so I don't lose it. I don't see it as profound or sentimental as some seem to be, this one is just real. These are the words I can't find to explain to people. These are almost the exact words I said to my Gavin the night before he died, when I had to tell him that everything would be okay and I accepted why he needed to leave me. 

I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in her life.
~Mom of an Angel

I'll take pain and suffering a million times over when it means that he doesn't have to. 

~K

Sadly?!

Somebody posted on facebook this morning, "Sadly had to watch my son turn 1 this week".
I realize life is not all about me, and people generally don't care about what I think but seriously?! Could you not find a different way to phrase that? If you're reading here, let me teach you something I learned from being a mother for just 12 days. Your child's birthday is not sad. Sad is watching your son die. Sad is knowing your son will never turn 1. Or any other number for that matter.
I realize the poster just worded it poorly and I hope was not actually sad about it, but I generally think before I post on facebook, and wonder if my post is going to hurt anyone or offend someone when I didn't mean for that to happen. If you're going to post stupid shit like that, just remove me from your friends list. I work pretty hard at being normal and when I fail it's usually my own fault, so I don't really need anybody else causing the bad moments for me.

Truth.

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died -- you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift."
--Elizabeth Edwards

Gavin's Life! Part 3: Hard Days

The first two parts were so easy for me to write... it was very raw and open. It's never been hard for me to talk about Gavin, but writing about his death just hurts. Hurts like freaking hell. Some days have just been hard lately. I think I was very numb for awhile and reality finally decided to settle in, and it's a reality that just down right sucks. There are still some details that I (we) just aren't going to share, but I'll do my best.
I don't want to admit this, but the day they told us about his diagnosis, I had a pretty hardcore breakdown. I left as soon as our meeting ended, and I'm completely ashamed of that. I could have stayed all day, but I chose not to. I gave up precious moments because I was weak. I couldn't handle looking at Gavin without breaking down and crying, and I didn't want that to be how our moments with him went. I can't even type that without crying! Ugh. So we went home, as I badly needed to compose myself and digest some of what we had been bulldozed with. My eyes were so puffy it hurt to open them!
The next morning, I went back. I had a lot of people asking if they could come meet Gavin, but I really wanted some alone time to just be with my baby so I spent the day ignoring people. My parents and sister did end up coming, which was good because I ended up getting to hold Gavin for the first time so I had some photographers! It was quite a setup to get to hold him, having to set all his lines and vent just right so nothing was pulling... I almost felt bad that the nurses had to do it! But I desperately needed that connection, and I think they knew that. That was the first moment of happy I'd felt in a few days at least!
The next day (Monday) we had another care conference. All of Gavin's doctors and nurses and neurologists and social workers were there, which was incredibly overwhelming, and they wanted decisions (like we had any!). He was breathing on his own, always was, and he was ready to be extubated. There were many what-if scenarios, and many questions we did not have answers for. Did we want to be discharged and set up hospice in our home? I said if he reached the preemie milestones and was big enough to take home then hell yes we would- but if not, the care he needed was at the hospital. We could be there 24 hours a day- his doctors couldn't do that at our home. And seriously, he was less than 3 pounds! I'm convinced they asked this question in a moment of insanity. Did we want all cares and feedings stopped to allow natural death? I think this answer may have startled them, no way in hell will my son not be fed when he's hungry! Looking back, that was the one time I raised my voice. In that moment, and many to come, I fully understood the "mama bear" instinct. The entire situation was out of my control, but I felt a fierce need to protect him as much as I could. Then I cried. Big ugly tears. I didn't know what the right answers were, but we did the best we could.
*Side note: Anybody who saw the Grey's Anatomy episode about Morgan's premature baby that ended up dying that aired within a week or two of this, I could seriously hurt somebody for not warning me. That shit should come with a disclaimer.
Anyways. We decided to have a Meet Gavin day before he was extubated... just in case it didn't go well. We wanted to get it out of the way so we could spend our time just focusing on Gavin and not worrying about coordinating times for people to come and having to put on happy faces.. that sounds awful, but I just wanted to be alone. So Tuesday was the big day, and meet Gavin they did! It was a constant parade of visitors, and I'm sure he was just as worn out as we were by the end of the day, if not more. It was so so great to have so many people that care about us and our son, but it was an incredibly hard day because I knew as they were meeting him they were also having to say goodbye to him in case they didn't see him again. I know it was a hard thing for every single person, and I will always admire and love them for that. We were all able to keep it pretty light, "Yes, he sure is cute!" "Yep, that's definitely my nose!" "Definitely got daddy's feet!" but you could hear the pain in everybodys voices. I think the hardest was Nate's grandma. She was so incredibly heartbroken, but unlike the rest of us she was not trying to hide it. If you've never seen a grandma cry, let me tell you, it hurts. She asked if she could touch him so I opened up the isolette for her and she grabbed on for dear life. She held his arm and just cried. She kept saying "he's so perfect, just so perfect." I agree, Grandma. Our baby couldn't have been more perfect.

Break

Part 3 is coming soon, I promise. Life has been handing me a few more hurdles and I'm having a tough time. I'll be back!