Tag Archives: death of toddler

Loving & Losing

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Take Time

This is so very true. As a mom I put a whole ton of pressure on myself to do ‘all the things.’ All the time. It’s exhausting.

My brain is constantly swirling with my to do’s for work, for home, for my kids and sometimes even myself. I often joke that my brain looks like an internet browser with 30+ tabs open. Because, well, life. And that is a lot. All of the time.

Sometimes when you’re running like that all of the time you forget that you can stop. The Earth will not stop spinning and fall off its axis. Your to do list will still be there tomorrow.

When Benny died, the world paused for me. Those to do’s suddenly disappeared. Everything just stopped, it was almost as if time stood still. All of a sudden I wasn’t running, hell I was barely crawling.

Me, who always had a plan always knew the next step, had nothing in my sights. I was injured so I figured I’d be home for a few weeks from work. Well, a few weeks turned into a few months and then a year, and then a decision to leave my career. I walked away from a job I loved with people I adored. And it took me a year to come to that conclusion.

I didn’t drive for about four months after the accident. I couldn’t handle the responsibility of being in control of a motor vehicle, even though we were hit outside of my car. It all seemed like too much. It took me about 18 months before I would drive longer than a half hour. I still won’t go longer than an hour or two by myself in the car. And I used to sit in my car from 3-5 hours a day at my old job.

What’s my point? Be kind to yourself. Grief takes time, so take time for grief. You do not have to figure it all out today. One of the best pieces of advice we were given was to not make any big decisions / life changes during that first year. It may not work for all but it worked for us. It gave me a chance to get my footing back and decide what was next for us so that we could start walking towards what the future held.

My Grief Process – May Madness

I remember wondering after Benny passed how I would navigate through my grief. How would I handle all of the holidays without him? Could I survive his birthday?

Benny was born in May, a big month for birthdays in mine and my husband’s families. We start with Mother’s Day, which I had just finally stopped grieving once Darcy was born, throw a whole bunch of birthdays in there, including my father’s and Benny’s, and wrap it all up with the day my mom died. All of this happens within a span of 13 days or so. It. Is. A. Lot.

Every year around Benny’s birthday in May, we do a gathering at the cemetery and then something small for the kids back at the house. We sing happy birthday and share memories. I want to celebrate the fact that my son lived, not focus on his death. I have one child who barely remembers him and two children that have never met him. It’s complex and confusing and we muddle through this new world as best as we possibly can.

Every May I am sent into a tail spin. I will add as many projects to my ‘to do list’ as possible. I spend hours on Facebook Marketplace and Craigslist looking for bargains that I can transform into something.

I need to keep my hands busy. I need to keep my mind clear. I just need to get through the next 13 or so days. I am in survival mode.

It’s as if I begin to notice everything around me that needs to be fixed. Oh, the cats destroyed the couch?

I got this! I just noticed that the kitchen looked very blah, looks too much like every other new house. Time to add a backsplash!

I’m desperately trying to fix my surroundings in an attempt to fix myself. It’s not possible. I cannot fix this.

No matter how much planning I do, no matter how much I think I have done, I will always add something to Benny’s celebration of life. In part it has become my way of still planning a party for my son, even though he is not here.

I try to find the perfect book to be read at the cemetery. I look for a creative craft for the kids to do in Benny’s memory. I am constantly looking for new ways to celebrate his life. Which is hard because it was so short.

Is all of this crazy? Sure. Do I need to put more pressure on myself to what is already a month heaped with emotional grief? Nope. But here’s the thing. This stuff, this trying to fix things, this need to plan a celebration of my son’s life, it helps. It helps me feel the tiniest bit like I can have control over something, anything in my chaotic life. I like keeping my hands busy and my mind focused. It’s like meditation to me. It gives me a chance to be truly present in the moment.

This is my process. This is how I have learned to make it through an emotionally charged month of ups and downs. My husband and kids have learned to take it all in stride and just accept that this is what I do. This is what I need. And for now it works. Maybe some day it won’t and that’s ok too.

There is no guidebook friends. There is nothing to make it all better. But if you can find something constructive to make it tolerable, you do you. Do what feels right.

A Space in My Heart

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.

When Your Rainbow Baby Gets Very, Very Sick

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.