Our Journey With Child Loss Posts

Someone told me recently that year two after losing someone is the hardest. I guess in some cases that’s true. When the meal trains, texts and letters stop, you’re still left there with the hole in your life that they didn’t really help to fill anyways.

On Gabriel’s second birthday, we were in Tennessee on vacation with my hubby’s childhood friend and his awesome family. It’s embarrassing to admit, but when we booked it last summer it didn’t even cross my mind that we would be there on his birthday. Sometimes I really have to think hard about what day his birthday is and that makes me a little sad. On the other hand, I think that maybe it’s a subconscious adaptation to the reality that we have a little boy that sits on our dresser instead of in our arms.

To say this year has been tough would be the understatement of the century. Global pandemic, virtual homeschool, grad school, being an ER nurse, lockdowns, and medical hyper vigilance with my healthy children have me convinced that having an extraordinarily medically fragile child would have really rocked our world. Of course, given the choice I’d have preferred him to have a heart that was perfect and not broken, but I digress.

Year two has been difficult, but not only because of Gabriel’s death. I don’t know if grief really fits to a continuum where in 20 or 30 or 40 years it won’t be there. I think it’s really defined by the little moments where your kiddo crosses your mind. Sometimes those fleeting memories are happy. Sometimes they’re sad. Sometimes you cry. Sometimes you smile. And sometimes, if you close your eyes and try really hard, you can still smell them, feel them, hear them and see them. As long as Gabriel continues to cross my mind and make me remember, I’m okay with sometimes forgetting his birthday.

Every so often as I lie down to go to bed, Gabriel crosses my mind. In that moment, I am flooded with the memories I have of him. There are not many. Some nights, I can picture him in my arms and can smell his new baby smell. Some nights, all I can see is his agonal breathing as his tiny imperfect heart began to fail. Other nights, I can hear the nurse’s voice saying “he’s a feisty one!”. My Gabriel, feisty, even as he was dying. I am overwhelmed with a deep sadness, knowing that he never had the opportunity to grow and to show us the big personality he would undoubtedly have had. I wonder if I could have pushed harder for intervention at 17 weeks in Boston, fully knowing that feelings and patient desires don’t dictate medical care. It isn’t often that I allow the “what if’s” to cross my mind because I know that they’re of no consequence now.

But, what if. What if I had three running, screaming, and wild kids in my house instead of two? More chaos, bigger grocery and childcare bills, a bigger vehicle. More stress, more frustration, more juggling all of the things I’m already not handling very well as it is. Even if Gabriel were here, his heart would still be sick, and this global pandemic we’re currently navigating would have had the potential to take him from us. So, I’m not sure which is worse. Saying goodbye so soon after meeting him, or having him with us for weeks, months, or years and having him ripped away.

Maxwell still talks about him quite frequently. He tells me that he wishes Gabriel were here. He wishes we had “another baby in the house”. He told me that it makes him sad knowing that when he grows up he will only have one sister and that he wishes Gabriel’s heart wasn’t sick so he could be here with us. He sees butterflies and ladybugs and tells me that it’s Gabriel visiting us to say hi. I am soaking up all this childhood innocence because it is in those moments that I realize I have healed and coped through my children. Adults can be awkward, and it feels forced to talk about Gabriel to people who are not our family. But Maxwell… he just causally brings G up in conversation and it is so refreshing when he does. But then, I inevitably start to think about the what if’s knowing how perfectly he would have fit into our family.

Today is Gabriel’s birthday. It’s been one year since we met him and since we said goodbye. It feels like the shortest but also the longest year of my life. I still remember holding him, touching his perfect nose, and kissing his forehead. I hope I never forget what it felt like to hold him. Unfortunately I also remember the tears and the heartache we felt for the months leading up to his birth and for the days after his death. I know I won’t ever forget that.

This morning I told Maxwell that today was Gabriel’s birthday. He looked at me and said “Mom, I wish he was here with us”. Our great friend Diana brought over a wind chime after Gabriel died that she wrote “For Gabriel” on, and that chimes “Amazing Grace”. After he told me he misses Gabriel and wishes he was here, he said “but we have that music thing that sings in the wind and it makes me think of him every day when I hear it”. Isn’t that amazing? I admire the ability of kids that can say things that are so comforting to those around them, despite being so innocent and green about the world around them.

One of my biggest fears in losing Gabriel was how Maxwell was going to handle it. He was almost 5 and it weighed so heavily on me. I didn’t know how to explain the situation so that he could understand and I didn’t want him to feel the same emptiness that I knew we would inevitably feel after Gabriel died. But, when Max walked in to meet Gabriel a year ago today, his smile lit up a room that was dark and devastating. He just wanted to hug and hold his brother. He knew that Gabriel was sick and that he wouldn’t be coming home with us, but in that moment he didn’t care. His eagerness to love and find joy in a moment where Barry and I couldn’t was an experience and feeling I won’t ever forget. All of our kids have taught us valuable lessons and I think that having them has made me a better human.

Happy Birthday, Gabriel. XOXO

When Gabriel died, people kept telling me to look for the signs of him here on Earth. I wasn’t even sure I believed in the kind of signs that people wanted me to find. Those who have lost children shared stories of butterflies visiting more often after their kids passed. For some it was dragonflies. Butterflies are kind of the “symbol” used a lot of places for child death and I wanted so badly those first few months to believe that every butterfly I saw was Gabriel. But I realized that I was just trying to force myself to believe in something that didn’t feel genuine. I’ve spent much of the last year thinking that the whole idea of “signs” was just a way for people who have lost loved ones to cope. Maybe it’s something they make up in order to feel better about their loss. And maybe I won’t ever be the recipient of one.

And then, a few weeks ago, I started to see Gabriel’s name. Now, I now it’s not the most uncommon name but it’s also not super common, either. I signed Lauren up for a mommy & me music class on Thursday mornings. We went for the first time last week and had an absolute blast. Afterwards, a few of the parents meet in the playroom and let the kids play and they extended the invite to Lauren and me. Lauren was playing with some toys and I was making small talk with some other moms when I looked up at the chalkboard in the room and noticed “Gabriel” written on it. It took me by surprise and I had a moment of pause to think about it, and think about him. It was strangely comforting and felt much different than all those times I tried to make myself believe that every butterfly that fluttered by was him.

Then, this weekend we were driving to a fall fair/cornmaze/pumpkin patch with the kids and drove by a baseball field where some teenagers were playing. Max pointed and said “hey, look, those kids are playing baseball!. As we got closer, Barry and I turned to each other after simultaneously reading that they field was named “Gabriel Memorial Field”. I mentioned that I had been seeing his name pretty often the past few weeks, and Barry said he had as well. Obviously, the field was there long before Gabriel was born and died, and it’s purely coincidental, but maybe it’s not coincidental that we drove by it that day. As we approach his birthday, the importance of keeping him with us and keeping his memory alive keeps growing. The feeling of peace when I see his name makes me wonder if that’s his way of saying hello to us. I don’t see his name and get sad, surprisingly, but instead it makes me smile. And maybe now I’m the person who is making stuff up in my head to make myself feel better. Maybe it’s all a coincidence. Or maybe it’s my sweet baby saying hello and making sure we know he is here with us.

• 

I’ve been meaning to write for a while now but it’s been hard to find the words. We’ve settled into our new-to-us-new-jersey-life and it’s been busy. It’s our first move with Lauren, our toddler, who has some special needs and requires several hours of therapy per week. I’ve started a new job, Max has started a new school (well, actually two schools since our town doesn’t have full day Kindergarten), and Barry is navigating his new role at work. It’s been a good distraction as we approach November 14th. It has been almost a year since we met, held, kissed, and said goodbye to Gabriel.

I have struggled for the last few weeks knowing that with the changing season and the holidays, his birthday will come. Do we celebrate it? Should we have cake? Or should we be sad knowing that instead of picking out an Elmo smash cake, putting up decorations, and celebrating his first year of life, we are reminded that it’s been a year since we held him.

Maybe we will do both. I can’t shake the feeling that 1 year is going to turn into 10 and his memory and life will become more and more distant. Sometimes I catch myself having to look in my phone for pictures to remember which day he was born. No one should forget their child’s birthday. But sometimes, I do. I don’t think it’s some sort of dysfunctional coping mechanism or anything, but in the days leading up to my induction, I likely didn’t know or care about the date. My sole focus was on meeting him, loving him, and preparing myself to say goodbye to him. And now, I don’t have the luxury of planning a first birthday party for my last baby. Instead, I am reminded every day that my kids are growing up and the bitter sweetness of this serves as a constant reminder that there is one who is missing.

Max still talks about Gabriel, “the baby we had that died”, and still doesn’t seem to fully understand it. But why would he? He was 4 years old and he met Gabriel for about 20 minutes. We still talk about him, but it’s become sort of awkward for me to talk to people about it. It’s almost like it’s a passing subject in a conversation about something else.

“How many kids do you have?”… “Two *sucker punch*”

“Are these your only kids?” … “Yup *sucker punch*”

“Do you think you’ll have more kids?” … “No, we’re done. *sucker punch*”

Because bringing him up in conversation makes me feel like a sad pathetic person who hasn’t gotten “over it” yet. That doesn’t mean it doesn’t happen. Sometimes I talk about him and it feels good, and sometimes I talk about him and I immediately regret it. I guess that’s just part of this journey, because as much as you want to talk about your child who died, there aren’t a ton of people who want to hear about it. But, he is part of our family and we will continue to keep his life and memory relevant. Because, he is.

Life is overwhelming with Maxwell and Lauren and the daily demands that we have rarely afford us an opportunity to relax. Life would be infinitely busier, more expensive, and more tiring with a soon-to-be-one-year-old. But man, would it be sweeter.

It’s been about two months since we picked up and moved our family from Florida to New Jersey.

The other day, I was sitting at the table with Lauren next to me in her high chair. Maxwell was outside on the patio riding his tricycle. Barry was grilling dinner. Ella was meandering in the backyard. I was sitting there in awe of how amazing our life is; when all of a sudden I got a strong urge to look at pictures of Gabriel.

I have about a dozen photos on my phone that I’ve looked at on a few occasions. I need to get the courage to look at the professional photos that were done at the hospital because the photo of Barry, Gabriel and myself is one I look at with regret. The look on our faces is so somber and depressing. Of course, it was moments after he was born and had begun to die. There wasn’t any real joy for us in that moment. But, looking back at it now I wish that we’d have mustered up at least a small smile.

So there I sat at the table, stuck between being grateful for my amazing life and feeling sorry for myself. I felt sorry that I wouldn’t watch Gabriel learn to ride a tricycle. I felt sorry that Lauren wouldn’t be sandwiched between two brothers to fight for and protect her. I felt sorry that we moved away from the only place Gabriel ever lived. I felt sorry that my heart bursts with love for these two little humans and that I have to keep that same love for Gabriel to myself. I want him to be here with us. I want him to be growing older, to be learning to walk and to talk and to be making messes and crying and doing all of those things that drive every parent crazy.

I struggle these days with trying to keep Gabriel important, relevant, recent. Every day that goes by is a day longer since he was here. And I know that he is important and always will be. I think about him often, especially right before I go to sleep. I talk to him, and so wish that he could somehow talk back. I hear so many stories about loved ones coming back to visit their families. Stories that have absolutely made me believe that it’s not only possible, but probable. It’s hard to know if Gabriel will come back to see us. We knew him (and he us) for such a short period it’s hard to know if we’d even recognize it if it happened.

Maybe someday he will, though. I’ll continue to hope. Time will keep marching on. Our life is really quite amazing and I will always be grateful that we have more than most. It would just be so much better with Gabriel here.

I had no idea this was a thing, but I guess there is a “holiday” for everything these days. Most people are observing today with tacos and margaritas but I’ve been reflecting on my still-new-to-me-identity as a bereaved mother since I realized the world had set aside a day for those of us in this crap club that no one wants to be in.

I think about Gabriel every day. In one capacity or another. Some days I long to hold him again. Some days I close my eyes and try to remember exactly what he looked like, smelt like, felt like. I try to imagine I’m stroking his tiny perfect nose one more time. But today, I keep thinking about what our life would be like if he was here.

In a lot of ways, it would be way harder. Lauren still isn’t walking, so it’d be getting three kids (two of whom need to be carried) out of the car. It’d be less sleep. Double the diapers.

He’d be almost 6 months old now. He’d likely be rolling around. Maybe close to crawling. Experimenting with the same food that Lauren is now eating. He’d be smiling, laughing, soaking in all the crazy love that Max and Lauren have for each other and that they’d have for him, too.

Some days, my sadness comes not because he died, but because he’s not here. I know that the quality of life with his condition had he survived would not have been like I daydream about. I know he did not experience pain or suffering in his short life, and there is peace that comes with that. But he was still a person. He had ten perfect fingers and ten adorable toes. He had a cute button nose. He had curly blonde hair. He would have grown into his own little boy, with his own thoughts, feelings, dreams, aspirations. With his own personality. Maybe he would have been good at math. Or maybe he wouldn’t have. We don’t know. And that’s what kills me some days. We didn’t get to know him, raise him and watch him grow into his own little person.

I spent the first 17 weeks of my pregnancy planning to add another tiny human into our family and the remaining time planning for his death. Some bereaved parents don’t have any time to “plan”. Sometimes they never get to meet their child while they’re alive. Sometimes they get to raise them for years or decades just to have to say goodbye. There is no one-size-fits-all to bereaved mothers. We all cope and heal differently.

But we all want the same things. We want to talk about our children. We want people to acknowledge that they existed. We want people to realize that for the rest of our lives, there is a void where our child should be. Or was. Or could have been. Some days are better than others. Some days we’re okay, and some days we’re not. Some days it kills us to go on Facebook and see all the new babies. Or the kids graduating college, getting married, having babies of their own. Some days, those things remind us that our child’s story ended too soon.

So next Sunday, on Mother’s Day, don’t forget those who are bereaved. Some of us have other children. But some of us don’t. We are still mothers and the acknowledgement that our children were here, that we created life however short, is important.

I’m a libra. I don’t know if I really believe in the zodiac, but I will subscribe to the theme of balance and it’s importance for harmony in life. I doubt there are many people who really think their life is balanced, and for those of us in the trenches of having and raising babies, building a career, sustaining (and hopefully enhancing and nurturing) a marriage, the idea of a balanced life is kind of a joke. I’m not great at math, but my ability to give 100% to all of those things and still have it add up to 100% is, well, impossible. But in the past few weeks, I’ve really felt my intrinsic scales shift a little bit. Since Barry and I got married in 2011, I’ve been focused on everything but me. We moved in 2011. I started nursing school in 2013. Max was born in 2014. We moved in 2016. Lauren was born in 2017. Gabriel was born and died in 2018. And now it’s 2019, and I’m preparing for our family to move again. But, I also feel like I’m doing okay in the mom department. My kids are happy, healthy, and thriving. We’re busy with appointments and therapies, but Lauren is making tremendous progress and I finally feel as though I can sit back and really find the joy in parenthood. It’s really kind of amazing. I created, grew and birthed these tiny humans and now I get to raise them into smaller, then bigger, then adult humans. I get to impart all my wisdom (ha!), knowledge, love and lessons onto them and I get to watch them grow up. I watch Max run around on the soccer field, and Lauren learn to pull herself up to stand, and every day I wish that Gabriel was here, too. I know I could have absolutely rocked the mom-of-three thing. And I know he would have fit like a puzzle piece into our life. But, it’s okay. I’m okay. And I’m finally comfortable saying that. And beyond saying it out loud, I can say it feels good to finally be in a place where I’m thrilled to be focusing on me. The last few years, and especially the months after Gabriel’s diagnosis, I was giving almost all of myself to him. On top of still working full time myself, my world revolved around doctors, second opinions, research, ultrasounds, echocardiograms and preparing our family for what was to come. I knew there was no semblance of balance in my life. And sometimes, that’s just how it is and you learn to adapt and manage it. I’m finally closing a difficult and deeply painful chapter in our lives and I’m moving onto the next. I’m devoted to losing some stubborn baby weight, to eating healthier, getting into shape, paying off some debt, nurturing my marriage, and raising my babies in the best way I know how. It’s nice that we are also picking up and physically moving to a place where we don’t know anyone. To most that seems scary, but I think it’s a blessing. We can really start over. I know that moving away isn’t going to erase what happened to us while we lived here, and I would never want it to. But there is really something to be said for fresh starts. So, right now, I will enjoy this feeling of balance and the “I got this!” attitude because it’s been a long time coming.

As someone who really loves science, it’s hard for me to admit that I MAY be just slightly superstitious. I don’t know that I really believe in fate, magic, or astrology (though I did get a tarot card reading in P-town as a semi-joke in high school… all I remember is that she said I’d end up with an older man. I laughed as a 17 year old because “whatever”, but I ended up marrying Barry who is 10 years my senior. So..). Anyways. I am slightly superstitious and I will admit it. I wore a rally cap in 2004 during the ALCS championship. I cross my fingers. I wholeheartedly believe that bad luck comes in threes (and incidentally, patients seem to die/code in threes too…). Full moons wreck havoc on healthcare professionals everywhere- you would be hard pressed to find a doctor or nurse who wouldn’t agree.

So, as we get down to our last few months in Florida I’ve been really reflecting on our time here. I remember the day Barry called me when we were still living in Rhode Island to tell me that his new duty station was going to be in St. Petersburg, FL. At that time, we just had Max and he had just turned 2. I was working full time, we were in a really good place financially, in our marriage and we had kinda-sorta figured out this parenting thing. We were so excited to move south away from winter and snow and experience a part of the country neither of us had lived.

We decided after careful consideration that we would purchase a home. It was a good time to buy and we knew our mortgage would be less than rent would be- by hundreds of dollars a month. It was so exciting as neither of us had owned a home before. Fast forward a few months to our closing date:

6/6/16

Yeah. I never really put it all together until recently. We closed on our home on 6/6/16. 666. It has been filled with some of the worst life circumstances imaginable. Health issues for Barry and for me, miscarriages, really scary and uncertain diagnoses for Lauren, hospitalizations, sketchy childcare situations, and the loss of a baby. Professionally, this has been a really rough tour for Barry, too. One of those “Murphys Law” kind of tours where hiccup after hiccup caused unanticipated setbacks.

I think when we first nailed down a closing date for our home, one of us may have mentioned that it was 666. We laughed and joked “I hope that’s not an omen about how this station is going to be!”

HA! Jokes on us. Maybe there is something to be said about superstitions after all. I think going forward, I’ll be more aware of them because clearly thats the reason for all of our bad luck.

Man. If I had a dollar for every time I’ve heard that, I’d be rich. Like, really rich.

First of all, I will shamelessly admit that part of my life is sponsored by Zoloft and I credit it for allowing me to get out of bed in the morning (and no, I’m not getting paid to say that). Secondly, I do NOT have it all together, nor can I do it all. I try. Man, do I try. I have spent the last three years working full time, taking care of two children with a husband gone half the year, 1500 miles away from any family, struggling with medical issues for myself, Lauren, and of course everything that went along with Gabriel and his heart. While I take pride in the fact that it may appear my life is not a giant perpetual dumpster fire, I can assure you that in any given moment I am one diagnosis, car wreck, unexpected expense, and phone call away from losing it. I am riding the struggle bus right along with every one of you. Sometimes I feel like I’m driving it.

The fact is, no one can do it all. There is only one of me. Just like there is only one of you. I’ve spent the last three years trying to give 100% of me to 100% of the people who rely on me. And y’all, take it from me, it.is.not.sustainable. I cannot prioritize my career without jeopardizing my family life and my own sanity. I cannot be with and give myself to my children 24/7 without jeopardizing…. well, also my own sanity. And even if I could, then I’m not being a very good wife, friend, sister, daughter…you get the point.

It’s been hard, but I have started to realize that I am only one person. There are a finite number of hours in the day, and days in the week. I also realize that the greatest expectations are the ones we set for ourselves. And I am no different. I told Barry a couple of weeks ago that I was thinking of giving notice at my job. Our childcare situation was not reliable, we have several projects for the house before we move, and I began to feel, really feel, how thin I was spreading myself. “Of course, babe. You need to do what’s best for you, everything else will fall into place”. I’m blessed to have the unwavering support from him, but I still wasn’t able to shake the guilt I had about it. I won’t be bringing in money, I will be leaving the hospital during a period of critical need, and will be leaving a work family that I adore. But there I go again, trying to give away more of myself than I currently have.

So starting now, I am going to make a conscious effort to give myself a little bit of grace. I’m going to try to set realistic goals for myself, realizing that some days that might just be that I set aside 10 minutes for a shower. I’m going to allow myself to fail and not let it define me. I will not give into the negative self talk when I do not live up to someone’s (read: my own) expectations. I cannot be everything to everyone, all of the time. And maybe if I stop trying to be, I’ll find that I can actually accomplish more. And hopefully if you’ve ever thought I had my life together more than you, I’ve set the record straight, because I definitely don’t. Not even a little bit.