Category Archives: General Grief

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.

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Hard

I cannot sleep. I cannot get comfortable. I still have pain in my right shoulder from the accident and can’t quite find a good way to lay tonight. My mind won’t calm.

My father is in the ICU. I’m going down to see him first thing in the morning. I have no idea what to expect. I have no idea how to feel right now. Expect the worst, hope for the best? I’m headed back to same hospital where I uttered the words ‘I love you’ to my mom for the last time some 22 years ago.

I just keep thinking this can’t be it. He will rally, he always does. I hope I’m right. But then I begin to wonder, what if he doesn’t? It wouldn’t be the biggest surprise, he hasn’t taken care of himself for years. And then selfishly I just keep thinking, please not now, so close to Benny’s anniversary. Please pull through. I’m not sure how much more I have in me.

Good Things

I remember thinking (rather naively) as a child that it seemed whatever my parents wanted to happen, would happen. I thought that they somehow ‘willed’ whatever they wanted and the ‘Universe’ took care of them. As a girl of 8 years of age, I thought this was how the world worked. I was priveleged. I felt deserving. Life was good.

My mom died when I was 16. It wasn’t an accident or unexpected, but cancer. She was sick, then there was surgery and chemo and radiation. Then remission. Then months of uncertainty that led to me being in a hospital room seeing the words ‘DNR’ and knowing exactly what they meant. The cancer came back and we were given months.

I was so many things during that time that it’s hard to even write about it all. I was relieved that her suffering would end. I was terriffied of losing her. I was scared of what life without her would be like. I was sad beyond anything I ever imagined possible. I was lost. I did not know what happened. What had we done to deserve this?

When Benny and I were struck by my car, I remember thinking it couldn’t be real. It was like watching something happen to someone else. Saying good bye to him and telling his sister was beyond awful. Imagining our lives without him was heartbreaking. Planning his memorial was surreal. Living the last 5 years without my son have been HARD. Again, what had we done to deserve this?

This past year has been tough. No, that’s false, this past year has been shit. Not losing-a-loved-one-shit, but shit just the same. My¬† patience has been tested time and again and Murphy’s Law seems to befall us more than most. WHY? What did we do to deserve this?

When the bad things pile up it gets harder to see the good things behind them. I know that they are there, but man I am having a hell of time finding them right now. When I go dark and really sit around and think about it, maybe I only deserve bad things. Otherwise, why would they keep happening?

I am in my new house surrounded by all of my stuff again (finally) and this is what I see. I think the road to get here has finally taken it’s toll on me. All of my attempts to brush off the last year as part of ‘the journey’ is crap. I’m tired of making lemonade, please pass the grapes so that I can make some wine instead.

I just want good things to happen. I want to be 8 again and believe that what I ‘will’ will happen. I want to feel worthy of good things again. I probably need to change my way of thinking, but for right now, pity party, table of 1 please.

 

Sounds of Silence

It has been nearly 5 years since my son’s death. Five long years filled with a flurry of activity. Five years full of hope, sorrow and gratitude. We have been constantly in motion.

After Benny’s death we felt like we needed to live life to the fullest. Nothing makes you think long and hard about life than the death of someone young. I mean, my God, I’m going to die some day. It’s inevitable. And that day can be tomorrow or 50 years from tomorrow, but it’s going to happen.

We did a lot in that first year. We renovated our home, we traveled. We went to Disney World, we went cross country. It was important for us to be able to spend time with Darcy and try to figure out our family as just the three of us. As soon as we were close to even glimpsing what that was I was pregnant.

It was a boy. Another little blonde haired, blue eyed baby to remind us of what we lost. At the same time, he was a little reminder of hope that not all was lost. Besides sleep, we lost lots of sleep. And patience and probably a bit of sanity over this very demanding and loud little person.

And by the time he was old enough, there was the hint of another baby. And we decided to take over another business, oh and sell our home. My daughter’s birth was the quiet before the storm that brewed over the last year that turned our family’s life into complete chaos.

Four moves later, a year into a new business and the baby finally sleeps (a little anyway). We are finally home for good in the middle of the woods and the silence is deafening. Things seem slower, calmer for the first time in years.

We made the choices that guided us through our grief over the last 5 years. Some would say that we’re running from it. Possibly. Maybe it’s just our process. Maybe the keeping busy is our way of living life to it’s fullest.

Right now I’m going to enjoy the quiet. I’m going to savor every chance to sit on my deck and listen to peepers. I’m going to enjoy my opportunity to shower more than a few times a week because my kids are growing older. I’m going to spend some time looking at my grief from the lens of a now veteraned bereaved woman and try to figure out what it all means.

Things finally seem to be settling down. It might be time to take that for what it is and let it be.

Sounds of Silence

 

Don’t Look

I’m scrolling through social media, just trying to unwind or kill a couple minutes. I love the pictures of my friends baby, or the cute animal videos. It’s nice to just lose myself for a few minutes amongst the chaos.

And then there it is. A video, a picture someone posted without thinking. It’s a picture of an awful car accident that they took as they were driving by, or a video of a lifeless baby. It’s been shared by countless others and I can’t blame them for sharing it to.

It still makes me cringe. I cannot look. I do not want to view someone else’s worst moment. I have enough vivid memories of my own.

I don’t know why we feel it’s ok to share these images? Have we become that apathetic? I would be horiffied if any one of the people that were there with us in the street whipped out their phone and took pictures or started filming. To my knowledge that didn’t happen, but what if it did? What if it was shared? Would it humanize it a bit more?

I’m sad that we feel so little for others that we feel it is ok to do this. Please think before you post. That is someone’s child, mother, brother, friend.

I Finished A Book

This may seem silly or trite to some, but last week I read a book. A whole entire book. From start to finish. I even read the novella that followed.

Yes, it was a book that I’ve read before and yes, I was technically on vacation. But I did it! I actually read an ENTIRE book!

This is a huge deal for me. Since Benny died four and a half years ago, I haven’t been able to finish a book. At all. Which is a big deal because I used to be an avid reader. I would stay awake until the wee hours of the morning following some characters on a journey. I have always loved to read.

It’s killed me. I have not been able to finish a book. I would start, but not be able to finish anything. My nook account has been collecting dust instead of new titles. I now troll Facebook or Pinterest until I’m sleepy.

I don’t have seem to have the focus to be able to read. I don’t have the follow through to be able to finish what I’ve started. I’m distracted. All of the time. I’m on edge.

It makes me mad when I start to think about all of the other things that I’ve lost through grief. Friends, family members, peace of mind. It’s amazing how much it has shaped my life and who I have become. I’ve lost so much of my former self.

This made me happy. Gave me a glimpse of something possible. Even if it’s the only book I read all year. I still read a book.