I read this last night and it was probably the BEST description of grief that I have ever read. It is beautifully written, would love to see it as a Children’s Book with pictures.
So I was scrolling through the Facebook tonight and reading about a celebrity who had a mishap and their child was hurt as a result. I was impressed said celebrity kept it real and was willing to share that accidents happen. I was scrolling through the comments because let’s face it, the content there is usually better than the story. Then I ran into this little gem.
If you can’t tell, I’m feeling a little unsettled and snarky about this comment. On one hand I get that it’s a joke and said in jest. It was not said towards me or anyone in particular. Hell, I would have said something similar six years ago. Before I knew.
It turns my stomach a bit that she’s repeating what her doctor told her. What an awful thing for anyone that practices medicine to ever say. How absolutely horrified would I be if those words were spoken to me? The implication in them is that if your child isn’t still alive, than you as the parent are to blame.
It’s not funny anymore and I’m horrified that I ever joked in such a manner. Unfortunately we joke about it because we think it can never happen to us, it’s a way of distancing ourselves from that reality that death can happen. To anyone. At anytime. Even our children.
Know better, do better. That’s all that I can do.
Growing up I had a cousin who was crossing the street by the school bus and was hit by a car and died. This happened roughly 15 years before I was born, so I never knew him. I remember seeing his picture in one of those collage frames from the 80’s at my grandmother’s house. I knew his name and how he had died but that was about it. I was a lot younger and it was a different time.
I now have 2 children that were born following the death of their older brother We (thankfully) live in the age where mental health is discussed openly and grief (for the most part) is acceptable. I can talk about how my husband, daughter and I were in therapy and how we’re dealing with PTSD and anxiety. And never ending grief.
The term rainbow baby is fairly new and for those of you that don’t know what it means it is the phrase for a child that is born following a loss or a miscarriage. It’s supposed to signify your ‘rainbow after the storm.’ While the term is not a favorite for everyone, it works for me better than describing my children as the ‘before and afters.’
Rainbows are new. We are living in a time where you acknowledge the loss of a child, even a young one. Their death is no longer swept under the carpet never to be spoken of again. I am raising 2 rainbows right now that will grow up knowing their deceased brother.
We go to the cemetery where there are toys. There are trucks and balls and buses and even Captain America. My rainbow son who is nearly 4 loves being there. He never knew his brother.
Death to him was a foreign concept. He has grown up knowing that his big brother is in heaven. He accepted that because that is all that he knows. Death was not sad to him, just a part of life. Until our dog died. Then death became real. I think it made him realize that his brother was here in the physical sense and is now gone. It made it real and it made it sad.
We drive by the cemetery several times a week and he says hi to his big brother and blows him kisses. Once the dog died the questions started. Is the dog with Benny? Why won’t Benny bring him back? He talks about how he misses the dog and also his brother and he just wants them to come home to play with him.
I never saw this coming. This is all so new and there is nothing in place on how to raise a rainbow baby. I am out of my depth here. Most days I’m just trying to make it through raising my children to be good humans and then bam! The questions start and the grief truck reels in and hits me square in the heart.
I try to answer him as honestly as I can. One of the best pieces of advice I was given by a therapist was to only answer the question being asked. As adults we analyze and obsess over some of our kids questions, but sometimes we just need to remember they are simple questions that only need simple answers. Kids don’t think with the complexity that we do. And my favorite answer sometimes is simply, ‘I don’t know.’ I don’t have all of the answers, even though as parents we feel that we should.
We talk about my son that died and we look at pictures with our kids. We celebrate his birthday because we want to remember that he was here and even though they didn’t know him, he was still their big brother.
Several times a week we go by the cemetery where Bennett is. Parker and I started saying hi as we drive by and now Fletch says hi and blows him kisses. He’s a pretty great little brother.
There’s a space in my heart. It’s where I go to find you. It’s where I keep all of your things. Sometimes it’s your nursery in the old house. Other times it’s Daddy’s shop where you spent so many hours ‘fixing cars.’
When you were first gone, forgive me, I couldn’t go there often. It hurt too much to open the door and spend time in that space. I honestly don’t remember much about that first year, but I do know that I would just poke my head in, or dip a toe in and I would be hysterical. It was too hard to recognize that you were gone from this world.
As the years passed I found I could open the door and stay in that heart shaped space a little longer. It was hard and I was a wreck, but after awhile I felt it oddly comforting. It was where you were. The memories didn’t hurt as much as they brought me relief. They were a reminder that you existed.
I’m amazed at how my life has grown around this space, how I have been able to function. You have given me such a will to not only live, but thrive. Your memory pushes me every day to find some sort of peace in this messed up situation.
You would be seven this May, such a long way away from the chubby 18 month old that I remember. I need this space now. I need to know you after the five long years that you have been gone. I need to say your name and be surrounded by your things. I want to wrap this space around me like a warm, crocheted blanket. It is my solace now and has become a part of who I am. Thank you for letting me love you my Benny Bear.
On February 1st Perry, my youngest rainbow baby officially became older than her brother Benny who passed. Now both of my rainbows have outlived their brother.
I’d be lying if I said it wasn’t tough. Part of me sighs in relief that Perry has made it past 18 months and the other part of me is sobbing inside. That perfect little boy will forever be frozen in time at a year and a half. It nearly breaks me.
Time makes no sense and just keeps moving forward, further away from my Benny. His two younger siblings will never hear his laugh, pull on his curls or touch his dimples. They will know him in memory only.
I am trying to understand what that looks like to them. Benny will forever be this idea, something that existed way before them. I only hope that we can show them how real he was.
As the years have passed, Darcy has forgotten. She was so young when Benny died and the memories seem to be fewer and further between. It’s heartbreaking. A lot of the time it’s as if we are reintroducing her to him as well.
Time is the enemy and the hero all at once. As cliche as it sounds, it can heal. It can breathe joy back into a broken heart. We’ve been lucky to have the other three. We’ve been lucky to have each other. I just wish we could have it all
Your mama is missing you tonight buddy. XOXO
I don’t know where to begin as it seems that at least one of us has been sick at any given moment since the middle of December. You name it, we’ve had it. And we’ve been sure to share with each other. It’s been like a game of Dominoes over here, each day a different family member will fall ill.
We very narrowly slid into Christmas morning somewhat healthy. We had all come down with the dreaded stomach bug the week prior and it seemed all of our cheer leading up to Christmas was instead directed into doing extra laundry and hoping that we would be healthy.
My littlest Rainbow, Perry seemed to be getting a cold, a fever and a stomach bug all rolled into one. She was miserable and just not herself. About two days after Christmas I noticed she was belly breathing, which of course freaked me out. As a mom whose lost a child, any sickness freaks me out. Well, to be true, most anything concerning any of my babies freaks me out.
So there I was trying to decide what to do. I spoke to the nurse practitioner because our pediatrician was out of town. I was scared and I didn’t know what to do. I hate the idea of going to the hospital. The best pediatric ER in the area is where our Benny died. I have avoided that place like the plague for the last five years. Something about Perry seems to make me confront things that I don’t want to because my first time back at that hospital was when she had the flu at 6 months old last February. It was awful. I hated every moment of being on the hospital campus. I did everything I could think of to keep myself distracted and my thoughts away from that day in 2013.
I try not to let my grief make decisions for me, but I’d be lying if I didn’t say that every fiber of my being did NOT want to go back to that hospital again. And then I felt guilty. Would I deny my child care because I didn’t want to bring her? So of course I go around and around, thoughts swirling as I try to decide what to do. Perry’s health and my fear for her won out.
They listened to her, gave her some Tylenol, took a chest X Ray and sent us home with a virus. It didn’t feel right. She was lethargic and coughing so much and couldn’t keep anything down. But we went home and I felt a little better. Things just had to run their course.
The next day of course her older brother starts to complain about his ear hurting – after the doctor’s office is closed. So we load into the car and head to Urgent Care and I figure they should probably check out Perry because she still isn’t any better. A double ear infection for brother and Brochilitis for Perry. We finally have some medication and I breathe a sigh of relief hoping this will work.
It doesn’t. The next two days she fights to keep her meds down. I’ve spoken to the Urgent Care doctor and our nurse again. Perry’s sleeping even more and we’re growing increasingly concerned. My mind is like a pin ball machine, pinging through all the different options – Am I overreacting? Should I take her back to the hospital? Will whatever this is just run its course? If I bring her back to the hospital will they just send us home again? Won’t she be exposed to even more germs in the hospital?
Parenting is hard. Parenting after child loss is like walking on a tightrope blindfolded on your tiptoes with your arms tied behind your back. You cannot keep your balance. Up is down. Right is left. Making decisions is near impossible because you are so damn scared to make a wrong one. And when you think that one of your babies isn’t ok, it’s even more terrifying.
This was one of those times when instincts kicked in. Even though I didn’t want to go back to THAT hospital, even though it was Sunday night and even though I figured they would send me home, I packed her up and off we went again to get checked out. God damnit, I was going to be THAT mom, paranoid and obnoxious, but at least I would be able to sleep at night knowing my baby was ok.
When you get to the ER and they tell you they will get you a room immeadiately, it’s not usually a good sign. Especially when the waiting room is full. Perry didn’t even fight them as they hooked her up for pulse ox readings. She took a breathing treatment and had oxygen blowing on her face. The doctor listened and said she sounded good, just Bronchitilitis. We would probably stay the night and could go home in the morning. I was so thankful, the kids would never even have to know we were gone and wouldn’t worry. Things we’re finally looking up.
Then the beeping started. Perry was having a coughing fit. I assumed it was our room, but no one reacted at first and I was on a bed with a toddler strapped to a whole bunch of monitors on top of me. There wasn’t much I could do. Someone came running into the room. Then another person and another. It became a flurry of activity. Perry had set off the heart monitor. I tried to stay calm. I was hearing words like ‘high flow oxygen’ and ‘pedi ICU.’ I called my husband and told him to get to the hospital. Something was wrong.
I sat there helpless and terrified while doctors and equipment were flashes in my peripherals. This felt all too familiar. I was even in the same damn building. I didn’t know what to do. The nurses and doctors were tending to Perry as I sat there holding her frozen.
I remembered the ambulance ride to the hospital after the accident. I remember the paramedic looking at me while I was shaking in shock. He told me I had to hold it together. He told me that if I lost it they would take me away from Benny when we got to the hospital. I just kept remembering his words over and over as I clung to Perry trying to wrap my head around what was happening.
They did X Ray’s and an EKG. At this point they really had no information for me, they weren’t sure what had happened, just that we were headed to the ICU and that she had to be on oxygen now. They put in an IV and hooked her up to several other monitors. It seemed like an eternity sitting there and waiting. Hoping for some answers.
They wheeled us up to the ICU where my husband was waiting, thank goodness. We moved Perry into a crib and they did chest PT because they needed to loosen the mucous in her lungs. The poor thing was so worn out at this point, she let them do whatever they wanted. This was not normal Perry behavior.
It was jarring to see this little girl hooked up to machines and monitors just laying there. This little girl who is so in spirit like her late brother. This little girl who was almost the exact same age that he was when he passed. It was a lot for us to take in.
I didn’t sleep that first night. Firstly because we were cramped on a mini couch and secondly because every beep of the monitor set me off. My adrenaline from earlier was still pulsing through my veins. My baby wasn’t out of the woods yet. I tried very hard to focus on the fact that she was in the best place possible and had amazing caregivers looking out for her. I just couldn’t forget that we had left that hospital 5 years ago without our son.
Finally, the next day she was diagnosed with pneumonia as well as a slew of other viruses. They were able to give her some medication to help out a bit. I rang in the New Year in a hospital bed snuggling Perry. This was not exactly what we had planned.
We spent 3 nights in the ICU before we could head home. We had to tell the kids and of course they came to see Perry too. It’s been hard on all of us. But the best smiles from Perry were when they visited. She lit right up (clearly not in this picture).
For 4 days I lived inside of the building where I said good bye to my son. There were so many emotions, so much anxiety and so much stress that I can’t even begin to articulate. But there were signs too.
Signs that our Benny was watching over us.
Every moment we were there. Thanks buddy.