Signs – Sunshine, Angels and Rainbows

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.

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

Connecting the Dots

Today I had a doctor’s appointment and I was talking to the nurse who taking my blood pressure, weight, etc. She was talking about how she lived near me and how awful our hill is in the winter. Of course at this point in the conversation I’m wondering if she knows ‘our story,’ but this is a fleeting thought as we continue to talk.

I have to admit that she looked familiar, but I figured that I had just seen here there before. We’re chatting away when she stops and looks at me says that she doesn’t really know how to say this, but she was there, in the road with me the day of the accident. She was one of the nurses that gave Bennett CPR. I didn’t know what to say, I was completely caught off guard. I had known that there were 3 people to do CPR on Benny, but it was all such a blur. The police had no information for us on who was involved and we found the others on our own.

About a month after the accident, my sister found an article from the T&G that interviewed this nurse that had been on the scene of the accident. Quite honestly, I had no idea that she had been involved at all until after the fact and I had contacted her to thank her. She was the only person that I had still not met. Until today. I got to hug her and tell her how thankful we were that she stopped to help us, to help Bennett. She said she would do it all over again in a heartbeat.

Just another amazing stranger. A hero among many that showed up for us that day. How amazing for her to cross my path over a year later. I have to think that this is the work of a little blue eyed angel.

I Said It

A week or so ago I had a doctors appointment. I was sitting down with the nurse and an intern to go through the normal ‘stuff’ and she and I were chatting. I had seen her at the doctor’s several times and we had always exchanged pleasantries.

She asked me how many children I had. My normal answer is to say that I have a daughter. This time I said that I have two and I held my breath to see where the conversation would go. She asked how old and I told her that Darcy had just turned six. I then took a deep breath and said that I had a son and that he had passed.

The intern kept doing what she was doing, completely unfazed, but the nurse stopped and looked at me. She asked if I had just said that my son had passed and I told her yes, he had. She looked at me and said she was sorry and I kept waiting for ‘the look.’ What happened next took me by complete surprise. She told me that she had lost one of her daughters 2 years ago. She was one of ‘us’, she got it. She talked about her daughter and I talked about Benny.

I wanted to give this woman a hug, she had just made the first time that I really told a stranger about Benny pretty damn easy. I was sad for her too though. Here was this woman that I had talked to several times, never knowing that she knew all too well my pain. We’re everywhere, moving forward through life, even though we don’t want to.

This moment brought me up short. Suddenly, I didn’t feel so alone. It was like the hospital all over again. Another stranger reaching out and making it ok for us. I truly believe that Benny was all over this too.

Day 8 – Resource

Today I’m to focus on resource, what has helped me along the way in my grief journey. Goodness, where to even begin with this one…

People. Many, many people have done amazing things for us. I can write lists and lists of names, we would be here forever.

My friends, I do not know what I would do without your love and support (TARA!!!!). Those of you that have stood by us and put us first, there are no words besides thank you. After the accident it was like they swept in and took control of everything. They took care of us. You, that still read everything that I write, you’re the ones. You amaze me with your patience with us and your love.

My family, there are some members that have just gone above and beyond. You were there when I lost my mom and you have been there for me again. I know this hasn’t been an easy journey, so thank you.

My co workers came in out in droves and spoiled the crap out of Darcy after the accident. I really work with an incredible crew of people that truly care. It’s a large, dysfunctional family.

Strangers, these people that are neighbors, or live across the state. We didn’t know you before November 8th and now I cannot imagine my life without you. You have stood by us, while others have walked away. You have taken a stranger’s little boy into your heart. Your love is so healing to us.

My fellow grieving moms, where would I be without them? My Donna’s and my Sue’s that were strategically placed into our lives because of the accident. How amazing is it that our sons brought us together when I needed it most. Thank you Brian and Ryan.

Blogging has been a major resource for me. What started as a very personal journal turned into something so much more. I’m now part of a community of grieving mothers. I’m connected with people that ‘get it,’ that speak the words that I often cannot. There is so much kindness in this community, so much love, so much understanding and NO judgement. I have met the strongest group of women. I’m so thankful for their love and support. I don’t know what else I would be doing at 1 AM without them.

The Greg Hill Foundation has had a major impact on our healing. They may not be a grief resource necessarily, but being involved in an organization that gives so much back to the local community has helped us tremendously.

Our counselors, Kate and Annie. Kate has worked with both Parker and I over the last 11 months. She gets us, she’s our cheerleader. She’s helped us to hold it together and work through our grief together (as much as we can). She helps to be my voice of reason and is always quick to point out my accomplishments. Annie has worked with Darcy since January and has been so instrumental at helping her to deal with her grief and be able to move forward. She has worked closely with me and now Darcy is to a point where we see her only once a month! This is a huge deal (not that Darcy is happy to lose her ‘Annie time.’).

We’ve been blessed in so many ways. I do get very angry at the Universe, I feel that it’s taken a lot from my life. When I’m able to take a step back though, it’s brought a lot of wonderful things into my life too. This isn’t tit for tat, by any means, but it truly helps to be able to look at the positive every once in awhile and appreciate just a little all of the beautiful people that are a part of our lives.

Consequently, I just noticed that my bib number for the Benny’s Bunch walk contained his birthday, out of order…5-17

Garden Update

Kisses

Darcy and I went to the library yesterday. When I walked in, there were tons of toddlers in the kids area, running around, making noise, and I couldn’t help but smile. We didn’t go there often with Benny, but had been in the fall right before the accident. It’s hard for me to be there.

There was a little man there, maybe 16-18 months. I was looking at him and smiled, then went to search the computer for books that Darcy wanted. I wasn’t really paying attention to what the kids were doing until one of the mother’s called out the name Bennett. I couldn’t believe it. I had never met another Bennett when the dude was alive, I couldn’t believe that there was one in the library. His mom asked him to put the bus away because they were leaving. Our Benny had a yellow bus, it was his favorite. It was the only toy I ever let him bring to Sandy’s and he would vroom it all over her house.

I’ve been seeing his name everywhere since I’ve been home. Most recently in a book I read (couldn’t tell you what it was about because my focus is all screwed up again) the characters last name was Bennett and she had PTSD, how appropriate. Parker’s Aunt once told me she considers this ‘a kiss’ from our children. It’s a beautiful way to think about it.

While in Canada, I had a Benny dream, the first in a long time. He was older, maybe 4 or 5 and dressed in a tux or suit and I think he was going to be in someone’s wedding (bizarre). He looked at me, all handsome and grown up and told me that he loved me. It was a surreal experience, because even in my dream I realized just how significant this was. Some part of me knew that he was gone, this wasn’t one of those dreams where you wake up and think he’s still alive. I knew in my dream what a gift this was. Tara dreamed about him a few days later. Keep it coming bud. We’re used to being on our toes where you’re concerned.

Some Perspective

So, as I’ve said before, my heart wasn’t really in the walk this year. Believe me, I’m not proud to admit it, but it is what it is. All of a sudden losing my mom at the age of 49 didn’t seem like the greatest tragedy anymore.

Sure, I trained, but I think more to get me up and out of the house. It gave me something to focus on other than the tragedy that has become my life. Sure I raised the money (and then some) because we are blessed to have some amazing people in our lives. I couldn’t believe that after all of the support that we received following the accident, people still donated to my 3 Day walk.

So, if I’m being honest, I wasn’t really excited to walk. It felt weird to be there to try to raise money for cancer when someone can die in a car accident just as easily and there’s not a thing that you can do. I was very conflicted this year. How do I honor my mother and grieve my son simultaneously?

Opening Ceremonies hurt. I stood there amongst survivors and those who had lost their mothers just like me and I felt horrible. How can I grieve for a woman who lived 49 years (which now seems long to me, amazing what a little perspective can do), when my son didn’t even get 18 months? How can I even begin to wrap my head around it? I really wanted to leave. I was ready to admit defeat and walk away. It no longer felt like my battle. There was so much sadness and all that I could feel was everything that I had lost.

What kept me there was all of those donations, all of those people that I felt that I had made a promise to. So I walked. Day 1 was rough to say the least. I blame it on the fact that Tara is now 30 and this has caused both of our bodies to age. Truthfully, I think we both had a shit year and probably weren’t ready to deal with the walk not only physically, but mentally, but we forged on.

I didn’t expect Bennett to be there, I should know better by now. I had noticed as we were walking several different banners with sunflowers. I smiled and took it for the sign it was. As we were crossing the street, I went to look closer and stopped dead in my tracks as I noticed the dates on the banner-the day he was born and the day he died. Tara had to yell at me to hurry up and take the picture because the light had changed and I was still in the middle of the intersection gaping at what was in front of me.

Mind blown, once again, but it was yet another sign from the little guy that I was where I was supposed to be. We then passed by the Bennett Arboretum. Sign number 2. Our tent number, just happened to be B-88, there was that number again, this time preceded by the letter B. Never mind all of the coke cans that read ‘Mom’ or the fact that the only song that I heard at the last pit stop on Day 3 was ‘Carry on.’

We walked through crowds of people, all cheering us on. People were on the side of the road handing out tylenol, water, soda, jello shots (!), you name it. They came out in droves to support us walkers. I’ve walked Boston for 9 years and I have never seen anything like the community support that showed up in Michigan (sorry Boston!). The crew was phenomenal and so encouraging. It made those first 22 miles bearable.

When we made it camp that first night I felt relieved. I was beginning to remember the joy that comes out of being involved in an event like the 3 Day. We sat down to dinner and watched the different entertainment that was on the stage. Up walked a woman that was 32 and stage IV – perspective. She was diagnosed at the age of 29 with Metastatic Breast Cancer – perspective. She was emotional, she was scared, she was inspiring. The light bulb dinged and suddenly I remembered why. I remembered that I did this walk to heal from my mother’s death, but it has become so much more to me. I remembered that this wasn’t about me or my son, but something so much bigger (that was a hard pill to swallow, not sure how long it will last). I remembered why I walk, why this is so important to me. I had to look outside my own grief, which wasn’t easy once it’s become a part of your every day life.

Then I looked at my life. What if I had been diagnosed at 29? How would Darcy’s life be? Would there even be a Benny? For the first time in a longtime, I actually felt grateful – perspective. Now I’m not going to tell you that Days 2 & 3 were a breeze, but remembering why I was there, feeling it in my bones that I was 100%, absolutely where I needed to be made it easier to carry on.

It was a good weekend. It was a good reminder to me that there is life outside of my grief. Sometimes we’re just so blinded by it, that we can’t see. It was a glimpse. Now that I am home again and on the other side, it sucks. But I will hold onto everything that that 32 year old woman said to remind me why I walk. In this instance, I was not powerless or helpless. I could fight back, I could walk. I don’t know yet how to ‘fight back’ after what happened with Benny, I’m not sure if I ever will. I think that’s going to be one of my biggest obstacles, feeling powerless. At least for one weekend, I had a little perspective, a little breather from the endless grief. Thank you 3 Day. Thank you mom and Benny for keeping us moving.

Benny’s Garden

After the accident, Parker had these grand ideas about creating a garden/zen like space somewhere in our yard. If you don’t know my yard, it’s the kind where wild things grow, where nature takes over and landscaping is a battle. When we bought our house some ten years ago, the yard was so overgrown you could barely see the front of the house. I remember walking through the backyard and feeling like I was in the book ‘The Secret Garden.’

For years we’ve tried our best to tame our wild things. For years we’ve also tried our hand at a vegetable garden to no avail. We tried to grow them in pots from seeds, than seedlings with no success. This year I figured that if my soil could produce such beautiful flowers and an abundance of weeds, logically it would be the best place to grow our vegetables.

Parker borrowed a rototiller and built raised beds. Darcy and I had planted seeds back in March and some of those we were able to transplant, but most of them didn’t make it. We had tried sunflowers, but they also were sun fried and wilted. So while Parker was on the Great Race we planted cucumbers, peppers, tomatoes, sweet potatoes, strawberries, squash, corn, pumpkin and beans from seedlings. I really had no clue if this would work or what would grow, so Darcy and I planted a little bit of everything. We put up some netting, watered nightly and sat back and watched the garden bloom! It finally worked!

Darcy and I began calling this our ‘Benny Garden.’ I hung my wind chimes out on a tree nearby and bought a large metal sunflower and hung it on the fence. We moved our ‘Benny light’ that was given to us by a stranger from the roadside memorial and put a little picket fence complete with pinwheels, Benny’s favorite.

At the same time we bought the seedlings, we bought more sunflowers and tried again to grow them in pots. I eventually moved the pots over to the vegetable garden and was excited when the sunflowers actually began to grow! What was even more exciting were the sunflowers that were mysteriously growing in both raised beds. The only ones that we had planted were in the pots and now 10+ sunflowers have started to sprout up everywhere in the beds inexplicably. Perhaps inexplicably isn’t the right word. Once again, my little man’s work.

Just when I feel like I haven’t gotten a sign in awhile, something so concrete happens. People say that it’s happening because we are open to it, but I would say it would be hard to miss what’s happened in the last 9 months.

Storyland

Last weekend we escaped to New Hampshire. I say ‘escaped’ because Parker and I had 2 blissful days alone. We could actually start AND finish a conversation uninterrupted, stay up late, and go to a restaurant without a kids menu. I love Darcy and try very hard not to take a moment of my time with her for granted, but it was a nice break.

Tara and Chris met us with the kids on Friday and we ventured to Storyland. We already did Disney, so I was unprepared for my reaction in Storyland. Maybe it was because Darcy was around the same age as Benny the first time we took her, maybe it was because there were a million little blond eyed angels with curly blonde locks, or maybe the numbness is starting to give way to reality. Whatever the case, it was tough.

You can’t really dwell on it when you’re running around with three very energetic kiddos, so once the moment happened, something would distract me and I would be on my way. We had a really great time and it was so nice to see Darcy really break out of her comfort zone and exhibit some confidence. We had a blast.

When we were sitting in the condo I noticed that Chris’ bag had the number 88 on it, the bag that we took around to the park and hiking. We were also lucky enough to hear Benny and the Jets on the way to our Sunday hike to the river. Darcy and I always sang that song to the dude, and it’s probably how his nickname came about. There’s those signs again. It was comforthing to know that he was there with us, I just rather it be in person…