This is what nightmares are made of

Working titles include: Hell on Earth, Every Parents' Fear, Why I hate Christmas and New Year's,Why I have PTSD,or If this doesn't make you cry, you're dead inside

NOTE: DON"T let the kids read this.
Don't read it alone.
Know where your kids and parents are when you do.
Have the kleenex handy.

I'm hoping that if I write this out and put it out there in cyberspace that it will stop cluttering my head and I can sleep better at night. And function better in general. It's like moving a memory to storage space, a pensieve, if you will. I appologize in advance for: Typos, bad grammer, choppy thought pattern, swearing, or insulting people. The emotions surrounding that day are very raw and painful. Don't take anything personally.

So here we go...
December 29th, 2008. A Monday.

Ed woke up and went to work, the plan was to see a half day worth of patients. He left me home alone with the 2 boys, my first time alone with the 2 of them. Slightly scary prospect but I met it with gusto, or at least only a modicum of anxiety. There was a lot of snow and our car choices were Yukon or Sentra. He took the truck, leaving me w/o a car seat for Mike.

I woke up at about 7:30 to Mike fussing, crying, probably wanting his water. He was at an age (20mths) where I could happily, easily get him down for another ~2hrs after that first waking. After I put him down, I saw Will fussing in his bassinett (the pack-n-play) in our room. I picked him up, hopped into bed, latched him on and did what I usually did at 7am when I nursed: I fell back asleep.

Shortly thereafter I jolted awake, the kind of jolt where you sit up. Will didn't move a muscle. Most people, esp babies would have woken up to this movement and he did nothing but lay limp in my arms. I set him on the bed where I looked at his little body, his little face and saw a little blood coming out of the right side of his mouth. My right arm reached around and dialed 911.

My son is unresponsive. Help me.
You need to do CPR.
Walk me through it. I know what I'm doing but I need you here with me. (I started CPR)
I moved to the front hall and kept doing CPR
I unlocked the front door.
Odin, the dog, sat right by me as I screamed at the top of my lungs for him to wake up, to cough, to twitch, to do something.
As I kept blowing air into him, blood mixed with milk kept coming back up into my mouth
He lay on the oriental rug in the hall in his little Carter's striped sleeping gown with jungle animals appliqued to the chest, lifeless.
I had faith that the paramedics and then the ER would make it all better, this was just a fluke, they'd bring him around. When they arrived, four minutes later, I stepped into the kitchen with the Lake County Sheriff, who I might add, was the biggest MORON to walk the planet. Seriously, STUPID cop.
I now know what the response time for 911 is to my house: 4 Minutes.
I crated the dog.
I gave him the wrong kid's name.
I asked him to go to the Clark's next door and shoo'd him out the garage. He couldn't find their house, per his mouth when he came back alone. I called them. They came. I called my dad ...

Get over here now. Run every red light, drive 100 miles an hour, come NOW.

He came.

The cop called Ed and told him that Will was going to Northwestern Hospital. I had to correct him: Northwest Community. Ed called back, asking me what happened, if he was blue. I said no, yellowish. He headed to the ER after we hung up.

I went up to get Mike, change his diaper after the EMT's left for the hospital. As I was changing him, one of the firemen came up to say that Will's color was coming back. Thanks for the false hope, asshole. I changed my clothes.

The cop said he needed my shirt that I was wearing so I sent him up to my closet, telling him it was on the floor in the middle of the room. He came back downstairs, asking which was my closet. My words to him I actually remember, "Shot in the dark there buddy, it's the closet with the WOMEN'S clothing!" I said this guy was an idiot, didn't I?

The cop asked a bunch more questions which I don't remember.

Tom Clark took me to the hospital, Renee sat with Mike. Tom drives really slowly. REALLY SLOWLY. I realized on the way there, while talking with him, that the year I was diagnosed with lupus, that fall, my mom had both her baby and her dad very very sick. My grandfather died the Feb after I was dx'd. Talk about stress and hell. Oh, wait, I think I can trump that...

Tom sat in the waiting room for 3hours, I think, waiting there incase we needed something. He drives slowly, obeys the speed limit, but is a wonderful soul who I'm thankful is my neighbor. Very thankful.

I walked into the ER and ran to the desk. I think they knew who I was. Someone took me back and to the right where I saw Ed sticking his head out of a bay... I could tell a trauma bay. I saw lots of people, one was bagging Will, one was doing compressions, one was trying to tube him. His little sleeping gown was on the floor. I screamed as Ed said, sitting me down, "These things sometimes happen. Take his hand. (looking at the dr's...) Stop. You can stop now."

And he was gone. They'd done everything they could. My baby was dead.

People who I don't know who they are came in and out. A nurse from L&D came down to see how I was and if I needed anything. Brought me a breast pump. I should have used it, but I didn't. Pam Ferguson, the bearevement nurse came with a big tub of stuff. She and Ed changed his diaper and wrapped him in a blanket that was a million times too big and loosely wrapped. I held him and he was still warm... for a little while. She asked if I wanted his handprint and I said no. I wish I'd said yes. She gave him a teddy bear. I took the bear home with me and sleep with it every night. Other hospital staff came in to say they were sorry.

The theme song to ER played over and over, about every 10 minutes and really got on my nerves. It think it signals an approaching ambulance.

We were in Bay 20.

My dad came, Ed's parents came, my mom came with her friend Anne who drove her (and who, incidently has lost 2 babies through infant death), Ed's brother, wife and son (not quiet a year old) came. We jammed into the little bay, playing pass the baby, holding him as much as we could.

Ed left for a period of time that seemed an eternity. I asked a nurse where he'd gone and she said to see patients. I lost it on her. LOST IT. Screaming. Seriously? See patients? Did she just miss what went on here? He came back and had gone to the bathroom. I think he went to punch walls and cry alone; he doesn't cry. I've never seen him cry, even then. No tears. But his eyes were red. He denied but I really think he cried.

Dixie (MIL) asked the pastor (yet another of the many people who showed up) if she would baptize him so there we were, gathered around the room, as she baptized Will with water from the handwash sink. We tried and tried to get ahold of Tom Dickleman w/o luck-- he was getting a colonoscopy. (everything turned out fine on it, but bad timing for us) He called that evening, I think. She (pastor) called the funeral home and they came over at about 3pm.

I called Kim. Dad called JT and Liz and Marisa, I think. Kim emailed some people. My cell phone battery was dead and I didn't have anyone's phone number written down. I do now.

In the meantime while we waited, sometime before the funeral home guy came, not sure when, Ed went home to get Mike and I wish he'd gotten one of HIS blanets and HIS outfits but whatever. I just kept thinking, this body isn't my son. His soul has left, is in heaven or whereever, but this is just his body. This isn't my son. My son is alive. I was in huge shock.

Sometime in there the cops showed up to, of all things, question the hell out of me. There I sat in the most god-awful uncomfortable of chairs, moved up onto the gurney, holding my dead son, while they asked me things like was I on drugs, alcohol, mad at anyone in my family, feeling depressed and they wanted the whole run-down of the morning. They said they needed my bra b/c I was wearing it when I was nursing. I gave it to them. My $40 really nice (for what I'd spend on a nursing bra then) supportive, good fitting Victoria's Secret bra, that I wasn't even wearing at the time, I handed over to the cop who was wearing gloves and holding a brown paper bag. I asked if I was going to be able to go home or if it was a crime scene and if I was going to be arrested. They said no. I think the officer who interviewed me did everything he could to hold back tears. He said he had 2 little boys. Or maybe 3. Can't remember. He was bald. The other guy was tall and black and suggested I voluntarily check into the psyche ward for at least a night. I didn't.

Everyone left except Ed and I. Mikey kissed his brother good-bye.

The funeral home man came and was very very nice. He didn't bring in a body bag or anything. The pastor stayed with Will while we left, both of us saying good-bye for the last time. Wait, no. The rest of the family went out to the waiting room and ran around with Mike. Then they came in and gave us Mike when the funeral guy showed b/c Mike came home with us.

As I walked out of the ER, holding Mike, I told him that from now on, whatever he wants, he gets. A puppy, a kitten, a horse, a boat, it's his... as long as he promises not to die also. Had I not had Mike to hold onto, to keep me grounded and to remind me of what is important in life, I think I would have died right then and there. Or run away. Or run away to die. I don't think I could have handled it. Sorry Ed, but you know he kept us both from completely losing our shit.

I don't remember the drive home.

When we got home, there was a bunch of people sitting at the kitchen table. Family. I walked right upstairs and took my migraine meds which I knew would knock me out for a good 8hrs. It didn't and I don't remember anything from the rest of that day.

I only remember bits and pieces of the next 10 days leading up to the memorial service. Tom D came over to talk with us and a deer came through the yard, really close to the house. Lots of people brought lots of food, primarily lasagna. People send flowers. Peopled called to ask what they could do and I said come help me clean and no one said ok. Mary called the hospital to find out how to shut off my boobs. Cabbage and antihistamines. There's no magic pill. Liz came on the 2nd or 3rd and stayed a long time and kept me from being alone in my head. People who'd lost their babies came out of the woodwork and we learned that there are groups within the exclusive club that no one wants membership to:

• miscarriage prior to 20wks,
• miscarriage after 20wks requiring the baby to be delivered usually induced,
• loss at birth (didn't come home, usually the parents and dr knew it was coming, or it was b/c they were really premature),
• neonatal or pediatric death where they came home but they knew they/parents/drs weren't going to make it incl those kids who contracted some kind of terminal illness,
• and sudden death, both of infants and older kids,
• and then death of adult children.

We fell into the SIDS category since our son SHOULD have lived. The dr's wanted an autopsy and the county required it b/c technically Will died at home, so the county coroner did get samples which were sent to the neonatal pathologist at Evanston Hosptial b/c the OB's really wanted to know *why* he died. The report came and satisfied them for their needs, but at the time of our OB follow-up, we asked that they not tell us. We didn't want to know. It wouldn't make a difference; Will was gone. It took a long time but Ed has finally found out just what happened when we met to talk to the neonatologists before Christopher was born (the CYA meeting as I like to call it). I still don't know, and it might be years before I am strong enough to find out. I do know that what killed him will not happen again to another baby that we have, or at least has such a small chance of happening that we can say that. It was nothing to do with my lupus. I did nothing wrong. And after thorough review of medical records by the experts outside of the situation, no one missed anything.

I know all that and I still don't sleep well. I have a lot of anxiety regarding my kids' health. I keep a stethoscope in Chris' room and listen to him breathe while he sleeps. I just get up, check, and go back to bed. My pediatrician, Dr Feldman, is a godsend and so tolerant of my neuroses. My friends have been heaven sent too, especially when they deal with me calling them at random hours sobbing to them, not Ed, b/c I don't want to upset him.

It's been hard on Ed. People don't ask him how HE'S doing, they ask about me. He walked into the ER, not knowing much, to find his 11 day old son on a gurney with someone doing chest compressions and the monitors showing nothing: no rhythm at all. He was traumatized like me, but differently. He has to work in the ER (not daily, thankfully) where Will died and a few months later, had to see a patient in that same bay. He sees the dr's who couldn't save his son. He sees me a mess and deals with my anxiety and sadness and is in his own way, the greatest person for me. He keeps me going and forces me to get out of bed.

A lot has changed in *me* since then and if you know me personally, you know how I've changed and that's really for a different entry. My marriage changed, my friendships changed, my faith changed. But like I said, if you know me, you know how I'm different and that's all for a different entry.

I feel better now that I wrote that down... and the next entry will very likely be a recipe for vegetarian lasagna.