Ever since 2000 when our daughter Elli was born with life-threatening heart defects and nearly died three times the first three weeks of her life, I’ve experienced blindsides.
I wish I referred to the movie.
Blindsides are swift and completely unexpected emotional breakdowns, often experienced when sharing your story with a stranger or a group of strangers.
As the parent of a child with special needs, I have shared Elli’s story countless times with medical personnel, school staff, new acquaintances, and random strangers we’d meet out in the community. I have had the opportunity to share our story for some college classes for special ed teachers and therapists, and for potential donors to our hospital.
I never know how those presentations would go. Will a blindside slam me into a teary mush pile this time? Or will I be able to communicate clearly and strongly?
When Elli passed away a year and a half ago, the blindsides changed. They began striking at any time, in any place, doing anything or nothing at all.
Anything.
A wisp of a memory… her sister’s laugh that sounds exactly like hers.
A glimpse of a familiar-but-no-longer-visited place… driving past her aquatic therapy pool.
The scent of the hospital’s blanket warmer, so comforting after yet another general anesthesia.
The discovery of a long-buried personal item… her bath towel.
Anywhere.
…sitting at the piano in church on Sunday.
…driving down the highway.
…laying in bed, drifting off to sleep.
…watching a movie with my husband.
…waiting for my son’s school bus.
At first, they assailed me daily, even hourly. With time, less frequent and more unexpected… except in the fall near the anniversary of her death and in the winter near her birthday. Those are memory minefields.
At first, the pain was bitter, cutting deeply, exposing raw wounds. Now it’s more of a wistful dull ache, a pain of long separation, hidden under scar tissue and wrapped in hope of heaven one day.
Have you seen me? The random weeping girl in front of the yogurt at the grocery store? If you do, would you spare a tissue? I promise, if I run into you, eyes red, face puffy, I’ll dig one out for you.
Where’s the craziest place you’ve ever been blindsided? What helps you get through it?
[What to say when a friend loses a child is such a mystery. I was the mom at her daughter’s casket in the fall of 2008. So when a friend of mine lost her young son to a progressive fatal disease, I wrote her a letter somewhat like this. When my daughter died, I craved a letter like this.]
Oh my friend. My heart breaks that you find yourself here, where I have walked and wept. Every hour I lift you and your family in prayer, pleading with God to pour out grace and strength and rest over you.
I was so encouraged by the outpouring of support for you and your family at your child’s visitation and funeral. I well remember how exhausting that was, but how much the presence of friends both old and new holds you up in those initial days after. I pray that you drew strength from that love poured from so many who love you and loved your child.
Please consider me a willing listening ear to hear whatever you need to say, or to just sit in silence when the words won’t come. I’ve walked this dark road and would be pleased to walk it again with you, if that would help.
Even now, 21 months later, some of life’s moments still seem surreal. It’s like I step out of life and look at it in disbelief. Can this really be the life I’m living?
The day Ellie died I felt myself split in two. I remember riding in the ambulance with her and yet looking at the scene and thinking, “Is this really IT? Look at the way they are working on her. I think she is gone. Is this really happening? Is this really the way it’s going to end?”
And that numb detached feeling persisted through the funeral planning, the visitation, and the services. Whenever I’d step back into my life, I was saturated with sadness. I remember thinking that I had to figure out how to stop crying because it hurt too bad. My sinuses and eyes were swollen, throbbing, aching. Grief is a physical pain. So I would step back out when it got to be too much.
Ever so slowly, the crying slowed, though it will never stop completely.
Ever so slowly, I could move through a day a little more.
Grief is exhausting. I had no idea. I needed help with food preparation, clean-up, housework, laundry… for weeks. Every task took everything I had. Things I had done before without a thought took every ounce of concentration so that I didn’t leave water running or the stove on or milk on the counter.
At the same time, all those days I couldn’t figure out what was taking so much time and effort. Without Ellie and her needs, the days gaped empty. Again, another surreal element of that time. Those days finding your way through is so awkward. You feel the yawning emptiness in your family: Folding laundry and folding your child’s things for the last time, and then having one less pile of clothes. Their empty bed. Their silent equipment. I constantly looked for what I was forgetting, constantly counted heads because I wasn’t confident I could keep track of everyone anymore.
It took at least a month for my energy to return.
If I may offer a bit of advice? Many will say, “If there’s anything I can do…” Take them up on it. Mention the lawn that needs to be mowed, the dirty dishes, the vacuuming, the leaf-raking, the snow-shoveling, watching the kids so you can sleep, writing thank-you notes (I personally think that a grieving parent should never be expected to send thank-you notes.), doing laundry. It will give you rest and they will love to be of some small help to you.
And in the midst of crying your own tears and asking your own questions, your other children have fears and questions. They are worried for their parents. They make valiant efforts to understand death and funerals and where their brother or sister is versus where their body is.
I write in hope that knowing others have walked through this gives you hope. I hope that you can feel my arm around you as I weep with you.
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.
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.
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.
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.
I looked out at the crowd and was amazed by all the people.
After the service there was a beautiful balloon release. The wind blew right when the balloons lifted into the air.
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.
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.
