All posts by sheriroaf

Sheri Roaf is the mother of four wonderful children who turned to blogging after her 17 month old son Bennett passed away unexpectedly. Through her writing she has found a way to help herself and her family move forward in the face of tragedy.

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.

Advertisements

Christmas Cards

A month and a half after Benny died it was Christmas. Instead of sending Christmas cards, I was sending thank you cards to amazingly generous people that had helped us out. The second year, I decided there was no way that I could ever send a Christmas card again. It felt weird without my entire family being involved. five years later, not much has changed for me.

My sister sent this to me today and man does this author speak to me. Maybe some day I will be ready to send out cards again, maybe not. That’s the funny thing about grief, everyone’s path is different.

Send the cards. Or dont. Just do whatever makes this season survivable. Sending love.

Sending Holiday Cards after Loss

Signs, Signs, Everywhere are Signs…

I just the other day said to a friend that I was waiting for Benny to show up. I hadn’t really felt him since we moved. Over the past year it’s felt like it’s taken some time for the little guy to find us as we lived our gypsy lifestyle.

Well, after the day we had, I’m feeling like I was heard, in a BIG way! We had Darcy’s 10th birthday party at a local bakery/restaurant. She’s huge into baking this year and on a whim I booked a cupcake decorating party for her and her friends.

At one point in the party Darcy walked back from the bathroom with someone behind her. One of Darcy’s girlfriend’s had a sweatshirt with her school name on it and someone asked her if she knew Darcy Roaf. Darcy looked at her and said ‘that’s me.’ The woman asked Darcy for her parents and came over to us. It was Benny’s nurse. From the hospital. From the night he died. The first person to give us a glimpse of hope that losing a child is survivable.

We hadn’t seen her in years and caught up after the party with lots of hugs. It was totally random that she had stopped at the restaurant this afternoon. Totally random that we happened to be there having Darcy’s party. Even more random that today is 11/17. Benny’s half birthday. He would be 6.5 today.

We got home tonight and were trying to pick a movie to watch with Darcy and decided on the Sandlot. I haven’t watched this movie in years and I was shocked to discover that Parker had never EVER seen it! Five minutes in, we all look at each other when one of the main characters names is Benny. He’s the hero of the storyline. This characters initials happen to be the exact same as Benny’s, BFR.

Benny has a dream in which Babe Ruth (again initials BR) gives Benny a speech…’Heroes get remembered, but legends never die.’ In the next scene Benny puts on some PF Flyers (Perry, Fletcher?) to try to save the day.

Bah, maybe I’m reaching here. But I FEEL it!!  Today certainly feels a little like kismet. Thanks Buddy. I don’t know why I ever doubt you. XOXO

 

5 Years ‘AA’ (after accident)

I woke up this morning like any other morning. A flurry of activity trying to get everyone ready. Just another day.

Just like it was just another day 5 years ago.  Except it wasn’t. November 8th changed us forever. I look back on that day now and I hardly recognize myself. Things have changed. I have changed.

I’m not entirely certain I could ever imagine the path my life has taken since we lost Benny. I’m not sure I really thought much into the future during those first bleak days. Hope seemed like something reserved for someone else.

So here I am 5 years out and I can tell you that my life is almost unrecognizable. I never imagined feeling fulfilled again. I never thought that I would be able to laugh again or allow myself to feel vulnerable.

My heart will always ache. Even in my most joyous of times a part of me will be sad. I will never hold my son again. My children will never all be together in one place. I never thought this would be my story.

I certainly didn’t think that I would be waking up to try and organize the post move chaos that is my life while nursing two sick kiddos. This was not my plan for the day. I wanted to breathe, soak it all in. But my plans are as steadfast as they were on this day 5 years ago. I must remember how little control I actually have.

There are times when I look in the mirror and I wonder how different I must look. Older, sadder, perhaps wiser. Definitely content.

I’m reminded of the Velveteen Rabbit in these moments. We read a passage from the book at Benny’s Memorial and my goodness is it fitting for today.

‘You become, it takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But those things don’t matter at all because once you are Real you can’t be ugly, except to people who don’t understand.’

Maybe in all of this grief and this heartache, I’ve ”become.’ I don’t think this is a final step or the end of anything. I think this is just where I am today.

I love you, my Benny bear. Thank you for every laugh, every snuggle and every smile that you brought into our lives. I love and miss you every single day.

IMG_5223

Got To Go Through It

It’s been a week. A week of stress. A week of unknowns. A week of chaos. I’m Type A so naturally I hate this lack of control.

My oldest daughter is on a field trip to Maine with her classmates. I have not seen nor spoken to her in nearly 4 days. I am losing my mind missing her face, her voice, her eyerolls and her attitude.

Yes she goes on sleepovers to her friends, but I have never spent this much time apart from her. As much as I would love to sometimes hop in the car and head West until I run into water, I know I never could. I’m losing my mind without her over just 4 days!

The worst part of it was that I thought she was going to home to very bad news. She always seems to be away when tragedy strikes in our family, something I’m grateful for. My dad is sick and in the ICU. He rallied a bit today and I have no idea what’s ahead for him, but I really thought she was going to come home to another death.

I’ve spent years researching the best and safest products for my children. I looked into carseats, organic foods, read parenting books. I tried to limit screen time, used sunblock outdoors and tried so hard to keep her healthy. I thought I had this parenting gig down. I was armed with band aids for boo boos and hugs and kisses for owies.

Here’s the problem though, even though I felt prepared, even though I read the books and did the research, I was not prepared for when someone she loved died. I couldn’t prevent that from scarring her so deeply. I couldn’t kiss that pain away.

Five years later I feel that we are headed back in that direction. I’m sad as I realize that there is literally nothing that we can do to prepare our little ones for one of life’s most horrible fates. I can’t make death any easier or better for her and it kills me.

Grieving is hard work. Grieving with little kids sucks. Suddenly you have to learn to balance your grief. Are you crying too much? Are you crying too little? How much emotion do you share with your littles?

The hardest part is making the space to grieve yourself while you watch them go through it. You cannot take their pain away, which is heartbreaking.

Here’s what I learned along the way though, you have to take the time for you in order for you to be able to be there for them. You cannot bury that emotion inside. It’s a tough dance that’s not easy to choreograph. It takes time. It takes love. Love for yourself and love for your child. It’s composed of failure and lessons to figure out what works best for you.

There is no magic wand or simple solution. Grief is like the children’s song Going on a Bear Hunt.

‘Can’t go over it, can’t go under it, cant go around it, got to go through it.’

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.