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Waking Up To The Truth

by | Sep 6, 2010 | Baby Loss, Coping With Baby Loss, Grief, Group B Step, Help For Grief And Grieving, Loss | 6 comments

Journal entry, Wednesday, June 11, 2003

After about an hour, the nurse came to the waiting room where we were sitting, having NO idea whatsoever what was going on… thinking our baby just had a cold or something. She said ever-so-calmly but with great concern, “We have him stabilized, but you have a VERY sick little boy. He was not breathing when we got him from you.” And then we were told we could see him shortly.

***************

My baby was THAT sick? How could that be? Twenty-four hours earlier he was pink and rosy and smell-goody and perfect? Twelve hours ago he acted like he didn’t feel well, but NOT BREATHING? How did I not know that? I’m his mother. I’m supposed to know these things.

Charlie was born 20 days earlier than this-happy, healthy and alive. From the moment he was born, he was wise. People commented on that in the hospital even. He was just alert. He had big brown eyes and a look in them that would melt your heart. In hindsight, he wasn’t meant for worldly things. He was meant to be a protector… and angel.

Back to the hospital. Jason and I went to see him when we were finally allowed back into the PICU. We were gently led to the bed where part of my soul still lives. My six pound baby had ten pounds of tubes and wires and things keeping him alive. I remember vividly not being able to breathe but still not realizing the severity of the situation.

We held vigil at the hospital for the next 3 days. In that time we were told that he had contracted late-onset Group B Strep which had caused meningitis and sepsis. They did a spinal tap which showed his spinal fluid looked like Jell-O instead of water and a CT scan showed most every part of his brain had had massive strokes, including his brain stem.

At last we were taken to the “OH SH*T” room where we were told our baby wasn’t going to live. He wasn’t going to have a first birthday or a first day of kindergarten, would never play t-ball or football or get a high school diploma. He would never meet the girl of his dreams and have beautiful babies and name them after his wonderful parents. In that tiny, dark room, our hopes and dreams were shattered.

On Friday the 13th, the most unnatural day to do this, we made the decision to turn off all support to our pride and joy. But we wanted to do it on our own time. And we weren’t ready right then.

Saturday morning started with my sister coming and bringing all the hats Charlie had received for gifts. For six hours we played “hat of the hour” and changed his hat and took pictures. He was held by us, his grandparents, aunts, uncles, anyone who came by and wanted to. It was a parade of visitors that day and for most it was the one and only time they had seen him. There were enough tears to fill a bathtub from friends who had driven several hours to pay their respects to our son before he took his final breaths. I can’t tell you how much that has meant to us over the last seven years.

At 5:00 on June 14th, 2003, just one day shy of his original due date, we gathered with about 2 dozen very special people in the tiny PICU room and our preacher had a baptism for our most precious son. Charlie was in a beautiful white t-shirt, a green and blue hat, holding his silky blanket and puppy dog. Our preacher spoke a few touching words that I wish I remember and baptized him. My sweet Aunt Diane started singing “Jesus Loves Me” and I remember sounds of moaning and crying coming out of mine and Jason’s mouths that in hindsight don’t seem human.

After everyone left the room, we were left with our son. Our intensive care doctor, Dr. Clark and nurses Julie and Tina there to help with the removal of support. In the next 43 minutes there were tears, kisses, touches, words of love and more tears. We were later told by Tina who was in the room, that as the machines flat-lined, a big ray of sunshine came in through the tiny crack in the curtain. It had been raining for 4 days non-stop so the ONLY explanation was that Charlie’s soul was leaving the room. At least that’s what I’m sticking with.

Charlie was bathed, wrapped in swaddling clothes and taken to the funeral home. Jason and I retreated to our home and opened the door to our new normal. And as our world stopped, everyone else’s went on, waking up to greet their Daddy’s with breakfast and homemade cards and fun on Father’s Day.

We woke up to the truth. That our lives would never be the same.

The Blame Game

by | Sep 6, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Group B Step | 3 comments

Your baby got sick. Your baby has lasting health problems. Your baby died. What’s next? Who do I blame? Surely somebody is to blame, right?

Not always. *

Our son Charlie died from late-onset Group B Strep in June of 2003. He was 24 days old. The doctors said there was a 50/50 chance that he got it from labor (me) or that he just got it from “life”. So my husband and I made the conscious choice to not dwell on or even think about who or what was to blame.

That’s crazy, you say. We could sue somebody and get lots of money if they were found to be at fault.

OR

On the other hand, I could blame myself daily and end up sinking into an even deeper depression and spending the rest of my life beating myself up for carrying GBS and killing my child.

No amount of money would bring my baby back. If there were a specific amount, I would beg, borrow, steal, cheat and maybe even kill to get enough money to bring him back. I would sue whomever and whatever I could if they would bring me back my sweet, pink, smell-goody, bright-eyed Charlie.

But that isn’t going to happen. Ever. So I have made peace with the fact that no negligence was done, by myself or my husband or any medical staff, and have told that part of my grief to take a hike. I’m not thinking about it anymore.

*Exception: If there was gross negligence on the part of a caregiver, doctor or hospital, and you have the resources and truly believe you have a case, then going after compensation may be okay. I’m not attorney, but I do know it won’t bring your child back or make your child whole again.

The Funeral

by | Sep 6, 2010 | Anniversary Reactions, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child | 3 comments

A year ago a limousine sent by Mike’s company showed up in front of our house to take us to our daughter’s funeral.

I climbed in the back, carefully smoothing my purple dress so it wouldn’t get wrinkled, and then realizing how ridiculous that was. I stared out the window and thought, “I can’t wait to take Maddie in a limo!” And then I remembered.

I wore a set of gold bracelets that she loved to play with, even though they clanged and made lots of noise. In the pocket of my dress I had the first hat she ever wore from the day she was born.

We arrived at the church early, and looked at how the pictures and Madeline’s things had been arranged.

Maddieshrine Three

La-Z-Moozer

Maddie's Piano

We then sat in a room in the back while we waited for everyone to arrive. We walked out right before the service started. I stared at my feet as we walked to our seats in the front row.

I looked up when I heard chuckling, and I realized the laughter was at a funny picture of Maddie from the pre-service slide show.

The service started, and I listened to the celebrant, then my dad, Mike’s dad, my brother, and Mike. As it came closer to my turn to speak, I started to feel sick to my stomach. My body felt cold and my legs felt like jell-o. I clutched her Abby doll close and walked up to the podium.

Abby

Podium

I looked out at the crowd and was amazed by all the people.

Front Chapel Wide

four purple ribbons

Somehow I managed to address the crowd.

After the service there was a beautiful balloon release. The wind blew right when the balloons lifted into the air.

Gathering for Balloon Release

maddie's purple balloons.

As my balloon floated away, I wished that it could take me with it.

The reception after was a blur. So many people came, people I hadn’t seen in years, wonderful people. I didn’t eat, the food smelled both delicious and awful. There were a lot of hugs and tears. I didn’t cry. I couldn’t.

Many people told me how beautiful the reception was, and I wanted to say, “well, we don’t get to throw her a second birthday, or a sweet sixteen party, or a graduation, or a wedding. This is it.” Instead I said thank you, and gave credit to my wonderful friends that had handled everything.

We stayed until the sun was down, the cold wind blowing steadily. We stayed until the last person left, and then we got back in that limo and returned to our empty, quiet home.

all photos by the wonderful Casey

Solitary

by | Sep 6, 2010 | Anxiety, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Fear, Grief, Help For Grief And Grieving, Jealousy, Loneliness, Loss | 3 comments

I’m turning into a hermit. Not in the traditional sense, exactly. I leave my house almost every day. But I hate leaving. When I leave, I can’t wait to get back. I can’t wait to put on the same clothes I’ve worn for twelve weeks, even though they stink and have stains on them. I long to lay on my couch and stare blankly at the TV.

I’m not finding comfort in anything anymore. Flipping around on the internet, my surefire way to escape, now makes me tired. I have thousands of unopened emails, dozens of unread text messages. I want to look at them but I just don’t have the stamina.

The only things I seem to have energy for? Envy and crying.

When I was on bed rest with Madeline, the only time I was allowed to leave my house was to go to the doctor. I remember sitting in my OB’s office, seeing happy pregnant ladies with their growing bellies, and being overcome with jealousy. Or when Maddie was in the NICU, I would constantly see happy parents going home with their new babies, and my body would become hot with anger.

This is so much worse.

Everything sets me off now. Seeing a child walking down the street with a parent, or a man buying diapers, or a plastic toy in the grass turns me into an ugly, hateful shell of my former self. I say that I wouldn’t wish this on anyone, but that’s not entirely true. If it meant I could have my little girl back? If a magical genie said, “OK, pick another family and they’ll lose their child instead,” there isn’t a single person in the world that would be safe. Even the people I know.

I felt guilty about this at first, but I realized that everyone who knows me or reads this would feel the same way. And everyone who knows me or reads this has already had a similar thought. “Man, that sucks, but better them than us.” Who WOULDN’T think that way? I know that, before Maddie passed, when I heard about a family that lost a child I would be so relieved it wasn’t MY baby that was gone. It wasn’t MY family whose worst nightmare came true.

So I’m slowly becoming a hermit, because I’m afraid soon I won’t be able to keep it in. So that the next person that says something well-intentioned won’t get me screaming in their face. So that the next person who rightfully complains online about their cranky child won’t get an expletive-filled email or comment. So that the innocent man buying diapers won’t have to see me glaring at him with my swollen blood-shot eyes.

Am I protecting others, or myself? I don’t really know.

Falling

by | Aug 15, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Loss, Marriage Problems, Pregnancy, Sadness | 2 comments

again. my spirit, that is.

its one of those days where i have to consciously push against the gravitational pull of grief.

it has been a week since T left. it has been almost ten months since i was pregnant with my babies

by accident i typed ‘ten weeks,’ realized that it has been so much longer than that and just crumbled.

where did all the time go?

i have never been prepared to not realize my goals or get where i want to be in life. i am intelligent and capable. i am kind and helpful. i go over and above in almost every exchange and interaction.

but none of that means anything, and failure could be here to stay.

i feel very alone, and not because T isn’t here, i have felt this way even while in his arms.

i’m not the person i thought i would grow up to be and i’m not sure how to live as the substitution

**

by | May 3, 2010 | Baby Loss, Coping With Baby Loss, Grief, Help For Grief And Grieving, Loss, Sadness, Stillbirth | 1 comment

i don’t cry anymore.

no, that’s not quite right. i don’t let the things that used to make me cry, cry anymore. i don’t lose tears over hallmark commercials, touching moments in sitcoms, the trials and tribulations of people and their misfortunes du jour. sure, i feel for them. this life is not an easy one.

this LIFE, if you are lucky enough to be living it, is not easy at all. but i can’t feel for everyone anymore. i hurt for the helpless, for the children and the animals, for the voiceless, the homeless, the man i saw last week with sweatpants torn and fashioned into shoes. i ache for them and sometimes, i will cry for them.

but on the whole, i am selfish with my tears. my tears are for my girls. my beautiful perfect sweet little girls. my tears are for me and T and our families who waited forever for those gifts, and were rewarded by their too-soon arrival. maybe it’s because i never knew pain like this even filled our world, my old world of choking up at a sweet greeting card advertisement, of welling eyes at a sentimental tv moment. now as i sit and watch or listen to a sad story, i am sympathetic, i wish things were different, but i don’t cry.

it’s true that i didn’t have any idea what horror a life could hold. not a sliver of an idea of the opaque screen which separates the mundane from utter torment; ignorant that the passage would be so easily and unwillingly breached- that i would be forcefully thrown into the revelation of the world’s true sorrows, previously and so gratefully unbeheld. that my family would come rocketing in after me, each of us reeling and wounded.

i was naive, i was innocent and happy. bits and pieces of these affects remain. but i will never be that girl again, the one who cries for everyone, even as i understand that most do not know what i wish they will never know. what the ones of us who live and have become would do anything to forget.

i cry for families who have lost their children, i cry for the sick, for the old and unloved. but mainly i cry for them, and for their mother. selfish, hot tears for the lost innocence of not only the three of us, but too many more that i love and care for. we lost so much more than our babies that day. we lost our wide eyed view of the world, our trust in what should be. the belief that life is fair.