Rainbow baby – Sunshine, Angels and Rainbows

Holiday Presents

Every year we lay out all of the kids gifts to make sure that the piles look as even as possible. We’re dealing with some crazy age ranges, but I try really hard. My son’s pile looked meh.

He’s 6 years old and I worry so much about him being overindulged. He’s our rainbow son following his brothers death. It’s kind of hard not to spoil him. I’m lying. It’s kind of hard not to spoil all of the kids. But the last thing that I want to do is create another entitled male in this world.

I really tried to reign in Christmas a bit this year. We went crazy last year because of Covid and experience gifts were not going to happen. My kids already have SO MANY TOYS. I didn’t want to add to that. I do a pretty good job of finding deals or buying second hand, so cost wasn’t really a factor. I just didn’t want all the stuff.

Until I looked at the piles. Mostly smaller items. And I got really sad. We tend to buy our kids more stuff because we don’t have much family. My kids miss out on so much with my parents gone. I grew up in a HUGE family with lots of cousins and Aunts and Uncles. So many traditions lost and so much time they never got to spend with my family. They never had the grandparents to spoil them. And it sucks.

We have a stocking hanging on our fireplace that we fill every year with notes. There will always be an empty seat at our table for 6. They are missing their brother. I have one less child to enjoy the excitement of the holidays with. And that sucks.

So here I sit feeling really shitty and really sad. I’m trying to compensate for something that my children probably don’t even realize they are missing. But I know what it’s like to look forward to big family gatherings. I know what it’s like to play with my cousins and grow up enjoying the holidays with them. Obviously, Covid complicates that too this year.

So I may have added a few things to my cart tonight. And I’m begging myself to not feel bad about it. I’m trying really hard to not spin out about if I’m ruining my kids by giving them too much. I’m choosing to look at it that they are only little once. And if I’m being over the top, so be it. I’m still trying to figure out this whole grief/life balance stuff. But I’m tired of feeling guilty about it.

Back To One

I have been struggling this week. Sending the two older kids to school after having them home for over 18 months, has been really, really hard. Having them home was really, really hard too, but this is a different kind of hard.

I cried for days leading up to that first day of school. I knew I was going to miss the kids, even though they do make me absolutely crazy sometimes. I don’t want to paint a rosy picture of a perfect quarantine. Our time at home was anything but. There were plenty of fights, screaming, hitting, biting, normal sibling stuff, just amplified. But they were home and safe, so it wasn’t all terrible.

When Fletcher first climbed up onto the school bus on Tuesday, Perry’s face fell. And she cried. And then I cried. We met him at the school (even though he didn’t want us) and when we left I was crying all over again. I figured it was just normal ‘letting go’ grief. Watching your kids need you less sucks.

With both of the older kids in school, it’s been just Perry and I. We’ve played games, baked a ton, had some dance parties and just tried to figure out the silence. She has a very special bond with Fletcher and this has been extremely tough on her. Perry may be a fighter, but she loves BIG.

I’m feeling so overwhelmed by the silence. And I’ve been at work and in and of the vet with a sick cat, so I haven’t even been home exclusively. But something just feels wrong. And familiar. So as I was pulling the Zucchini muffins out of the oven today, I had a realization. I’m back to one. One child at home. Just like after Benny died and it was Darcy and I.

I’m not sure if I feel better or worse now. Being able to recognize why this all feels so awful makes it a little easier. I feel a little less crazy. But man if it still doesn’t sting. It brings me right back to the days after losing Benny and trying to navigate that awfulness.

It’s also really hard to watch your rainbow babies outgrow their brother. He never got to any of these milestones that my kids seem to be flying through. And as excited as I am for them, there’s a part of me that will always be really sad for the ‘what if.’

Rainbow Guilt

I don’t know how to write this without it sounding horrible. Or totally confusing. Or just completely fucked up (excuse my French). It’s a rabbit hole I try to stay out of because once it starts, it’s hard to stop. And it’s laced with so much guilt.

Once Benny was born, Parker was done having children. I had had always wanted 3, but I was pretty set with being pregnant again and was happy with our little family. So I began to get rid of the baby gear, my way of acknowledging that the baby factory was closed. I had always wanted to be younger when I had my kids because I had lost my own mom so early on in life. It was feeling like a good decision for us.

And then Benny died. Suddenly our little family became too small. Everything felt wrong. It is really hard to wrap your head around someone dying in an instant. I watched my Mom suffer from cancer for 2 years. As awful as that was, it made the end a tiny bit easier. What happened with Benny is completely illogical. I will never understand why he had to die. I will never try to find meaning in it. It just is.

I remember being in my room with Parker the night that Benny died. I remember looking at him and saying I wanted more kids. This was never to replace Benny. I just knew in that instant that I wasn’t done. I wanted Darcy to have more siblings. And Parker felt the same way. We were numb and terrified. The worst had just happened.

We waited almost a year. Then I miscarried. And I was angry. I stupidly believed (again) that more awful things couldn’t happen to me. How completely naive I was.

By some small miracle we had Fletcher and Perry. I know how very lucky we are to have them. Rainbows aren’t promised.

So here in lies he rabbit hole. If Benny hadn’t died, would Perry and Fletcher cease to exist? It’s pretty awful, right? I’d give anything for Benny to still be here and make it all just a horrible nightmare. But how do P and F factor into that?

It’s kind of like, what came first, the chicken or the egg? I can circle the drain a bit if I think too hard about it. But honestly, none of it was ever my choice, it’s just how things happened. I guess there’s a romantic notion in thinking we can change the past.

I used to think about this constantly after Fletcher was born. And then I would feel guilty. Guilty because I would do anything to have Benny back. And then guilty because I would do anything to protect my new baby. It was this awful dance of guilt between the deceased and the living.

As Benny’s birthday comes closer, these are the things I think about. This is the ‘stuff’ it brings up. The missing just gets so hard sometimes.

1,000 Years

My heart hurts so much after reading that singer/songwriter Christina Perri’s daughter was born sleeping. This after she suffered a miscarriage.

Her song, a Thousand Years, has been Fletchie’s and mine since he was born. I would sing it to him at bed every night and every naptime. Now when it comes on the radio he immediately seeks me out. And then falls into my arms in a blubbering mess. Because this kids loves more than anyone I’ve ever known. And he feels more than most people.

Some part of him recognizes how shattered my mama heart is. I swear he understands. So he holds me and I hold him. And we sob. Every. Single. Time.

And my heart is broken knowing that another mama is struggling. Her words have had such a huge impact on my healing and now she knows this pain. It makes me very sad. Sending her family so much love.❤️

‘And all along I believed, I would find you
Time has brought your heart to me, I have loved you for a thousand years
I’ll love you for a thousand more.’

My Miscarriage

In a perfect world, I would have 5 children. I cringe every time that I go to the doctor and they ask how many times I’ve been pregnant. I then have to tell them that I have 3 children at home, one that has died and I miscarried.

Im not sure I ever really processed my miscarriage beyond anger. We had just finally decided to start trying to get pregnant again after Benny died. It had been nearly a year and we were emerging from our grief fog and felt ready.

We were shocked when we were pregnant on our first shot. It took us four months with the previous two. It really made no sense, we were getting older, but alas, here we were. I saw the two pink lines on our eighth wedding anniversary. It felt like kismet.

I was excited and nervous. Still a little shocked it happened so quickly. We were due on May 8th, which happened to be exactly 6 months from when Benny died. It would have been a year after we buried Benny’s ashes.

I wasn’t really sure how I felt about all of that, but I decided it was life’s way of turning lemons into lemonade. Parker and I were truly excited. It was that hope that we had been looking for.

Then I got the call from the doctors office, my numbers weren’t increasing, my hormones weren’t going up enough to sustain a pregnancy. I started bleeding and as soon as it had started it all came crashing down. We barely made it 6 weeks.

I was beyond angry. How could this be happening after all that we had already gone through? It all felt very unfair and I was livid. It felt like we were in a better place with our lives and then this was a slap in the face. I felt cheated.

And I was alone. This loss was so completely different from losing my son. Few people tell people before 12 weeks. I now had to quietly grieve by myself. This was a different kind of hard.

I began to panic. What if I couldn’t get pregnant again or sustain a pregnancy? What if we weren’t able to have more children? I began to imagine the worst and try to figure out what our options were. We knew we wanted more children and that was the hope that propelled us forward.

Then one night about a month later I had a dream. It was about 2 little boys playing in the sand at the beach. One was Benny. I woke up and took a pregnancy test and was pregnant again. Before I could really even process my miscarriage, here I was again.

This time was different. I was anxious about miscarrying again and every other possible thing that could go wrong. I was really scared. I didn’t sleep because anxiety and pregnancy do not get along. I was a nervous wreck.

Something about that dream though took a little bit of the edge off. I felt like it was sign for me to breathe and know it would be ok. And it was Benny introducing me to his little brother Fletcher.

And here we are 5 years after that loss on May 8th. That babies due date. I’m the only one that grieves this day. Carrying this silent grief is tough. If you’ve lost a pregnancy I see you and I’m so sorry for your pain.

When Your Rainbow Baby Asks Questions About Death

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.

Brothers

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.

We’ve Crossed the Line

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

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.