February 19, 2017

One of the hardest days of my life, yet also one of the best. While I was there physically, mentally and emotionally I was in an anxiety, grief ridden fog.

The love felt on that day was immeasurable. The different worlds of people who came together is something I will cherish every single day. I can look at pictures from that day and see my parents and cousins standing next to my work colleagues, Quinlan’s neurologist from Boston Children’s Hospital next to my grandparents and their close friends, parents and siblings of my best friends conversing with Quinlan’s nurses, therapists, and doctors, my brothers friends standing next to Bears family, friends, and work colleagues. Friends and family coming from all over.

Worlds united

It is still one of the most surreal moments in my life. Every one of those people came together for us, because of Quinlan.

In so many ways I wish I could relive that day over and over again, to feel the support and love of everyone together in one room. At the same time, the reason behind that day is something I wish had never happened.

So many pictures of the sweetest boy

We celebrated the life of Quinlan. We wore bright colors and Superman attire because he was a true superhero. It may not be how others would choose to honor their child, but it felt right for us.

We cried and hugged. We said “thank you for coming”. We didn’t know how to act or what else to say because how are you supposed to know the proper etiquette for your two year old child’s memorial service.

After it was over, we went to a place we’ve frequented often. We played pool, played cards, drank beers, and we had a good time. How is it that bringing people together to celebrate a life that is no longer with us, can also bring some happy and unforgettable times? I was finally able to breath a little that day. I had my people with me, not the entire 200 that were with us earlier, but a handful of my people who I could let down my guard with, let the anxiety lift a bit, and slowly step out of the fog (although I’m not sure you could convince me it will ever fully lift).

A day with so many emotions, ups, downs, and everything in between. A day I will never forget and yet wish never had to happen. A day that was all for Quinlan and his amazing, magical life.

💚Mama Bear

Today’s the day for extra emotion and an extra pill

I had a panic attack at 4am Christmas morning. August was awake with a cough and wasn’t falling back to sleep. I started thinking about Christmas and if this pure exhaustion the three of us inevitably were going to have was going to ruin it. I was thinking about the covid world we’re living in and how it was affecting so many plans for what is supposed to be such a magically day for so many. Then I started thinking about the month of January and the approaching 5-year anniversary (something I can’t seem to wrap my head around, but that’s for another post). All this while worrying about my empathetic three-year-old seeing me in this state of uncontrollable emotion. My chest started to get heavy, and I realized what was about to show its ugly head. This quickly became one of those panic attacks that made me slightly question if it was in fact a panic attack or if there was something physically happening to me. I couldn’t shake it. I kept asking Bear if I should go to the doctor. My heart was racing, and I couldn’t sit still. For anyone who has ever been in that state, you know just how awful, scary, and out of body this experience is. I needed to find my peace.

In the midst of the panic, I’m also realizing just how hard of a time I’m having with these negative emotions, when feeling like being optimistic isn’t an option. You may be saying “but how could you NOT have negative emotions” (something I’ve also had to remind myself of on numerous occasions). I’ve been told how well I cope with what I’ve gone through. I tend to hold my crying for showers or car rides alone. I like to see the positive more than the negative, but that hasn’t been happening lately (see reasons above). When I’m positive, it’s genuine. We’ve gone through hell, but I do feel proud, thankful, and genuinely happy often. So, when the negative feelings take over for long periods of time, and I’m not as optimistic as I genuinely like to be, I don’t like it and it’s not a comfortable place for me to be in. This was one of those places.

After about an hour of trying to talk myself out of it, doing deep breathing exercises, sitting in the dark, talking to Bear, and watching tv, I gave myself the okay to take an additional anti-anxiety medication. It sounds strange to say “I gave myself the okay” but it’s how that conversation went in my head. I had to give myself permission. Even though I had been prescribed this medication, I had not touched it in over three years and I wanted to do everything I could to continue this streak. But why did I feel like I was in a competition with myself to stay away from something I knew would help? Why did I feel I had to “give myself permission”?

I take a small dose of an anti-anxiety medication every day that has been just enough to help my daily life. My child died and this medication helps my brain get through some of the trauma. This additional anti-anxiety medication that I’m now feeling I have to give myself permission to take, is something I have taken in the past and it is something that has helped me. Feeling the way I felt, at 4am on Christmas morning, I needed to give myself allowance to go outside of my own head and do what I felt was right at that moment.

The trauma that comes with experiencing the death of a loved one, especially the death of your child, has been proven to change your brain. It’s not visible like a broken bone, but it is in fact broken. With a broken bone, you often need therapies to fix it, and medications to help the pain. But when it’s your brain that is ultimately broken, therapies to fix it and medications to help with the pain are not looked at in the same way.

Medications for mental health can be such a controversial subject in today’s society. It takes a lot of convincing to give myself the okay to take a pill that is prescribed, safe to take, and has been proven to help me. And that stigma that goes with taking these medications, often times lingers in the minds of those that could benefit from them, including mine.

As bereaved parents, we need to be selfish and do all that we can to help ourselves. Whether it’s therapy, crying, laughing, knowing that getting through a day like Christmas is a win or taking a medication to help with the serotonin in your brain, it’s what we have to do, and what we deserve to do for ourselves.

Taking that pill early Christmas morning made me feel slightly defeated, but at the same time, it also gave me the confidence in knowing that I could read my body enough to know what was needed to help. Of course, I would like to be someone who doesn’t need a prescription for these instances. I’d like to be someone who doesn’t know the pain of child loss. I’d like to be someone who has both of my children to cuddle up with in bed on Christmas morning. There’s a lot of things I’d like to be but ultimately, being someone who can share my experiences and let others know that it’s okay to accept the help, is something I can be.

I choose to be open about my journey as a bereaved parent, a vilomah, and the trauma that inevitably comes with it. I wasn’t sure I wanted to share the experience I had on Christmas morning, it’s scary and hard. But I also don’t want to hide about myself, what others may also be experiencing. I don’t want to have to talk myself into taking a pill that will help fix my brain in a moment when it is really hurting. Maybe talking about it will help change that way of thinking, not just for others, but also for myself.

And yes, taking the medication did help. I was asleep within an hour. I had a panic attack “hangover” the next day, was exhausted and still slightly anxious, and nervous that it would happen again the next night and the next night. So far, it hasn’t, but, if (or when) it does, I know what I can do to help myself if needed.

💚Mama Bear

Today’s the day for a new decade.

Tomorrow I turn 40. Surprisingly I’m not even freaking out about the age (sorta, maybe just a little). I know it’s just a number, and truthfully, I don’t feel 40 (whatever 40 is supposed to feel like) but I do have some feels.

“40 is the new 20” or so they say. Well, to me, 20 was innocence, naivety, fun, late nights, and way less bills to pay. I think about how my biggest concern was which shifts to pick up at my waitressing job, and which bar we’d be going to that Friday night. I would meet the man I would eventually marry, and start a job that would turn into a 15 year career.

And then my 30’s happened. Ten years ago right now I was thinking about how to spend the last night in my 20’s. No idea that the next day I would be getting engaged in front of my friends and family, starting off what was supposed to be the best decade of my life. I was getting married, we’d buy a house, have kids, live happily ever after. Getting engaged at 30 (check), married at 31 (check), first baby at 32 (check), second baby at 35 (instead I was burying my first baby). You know the rest. I literally began the first moments of my 30’s the happiest I had ever been. I was so innocent and unknowing of the world I was about to live in. So naive to the emotions and feelings I was about to experience.

That is what brings all the feels to this whole turning 40 thing. It’s making me realize just how different of a person I was exactly a decade ago. How different the journey of the last 10 years has made not only me, but everyone in my life who has been a part of this life with us. They are the same people who were with me 10 years ago, watching Bear get down on one knee when our journey began. It’s making me feel ignorant to how clueless I was as I embraced my 30’s, because why would I have a child who would be diagnosed with a super rare disease, and die at the age of 2 years old. I can honestly say that was never a thought that crossed my mind as I was saying “yes” to marrying Bear.

This last decade has changed me, but I don’t want to think it was for the worse. I’ve had the most amazing times in my life over the last decade. As much as I’ve gone through heartache and pain, I also experienced the most amazing feelings I could ever imagine. Feelings that go way beyond what my expectations were on that day 10 years ago. I not only married the love of my life, but created two additional loves of my life to share my world with.

So, yeah, I’m turning 40. I’m not necessarily excited about it (it just sounds old, no offense to anyone reading this over the age of 40) but I’m more okay with it than I thought I would be. I’m entering this new decade in a different mindset than the previous one. I’m no longer innocent and naive to the world, but I also know when to allow myself to feel grateful and hopeful.

That’s what this last decade has gifted to me, a confusing mix of emotions I never thought could go together, but have learned to carry at the same time.

Well, that plus more anxiety, a little PTSD, an extra chin, and a few extra pounds. Happy 40th to me.

💚Mama Bear

Today’s the day that clothes make me cry.

I got another punch to the gut tonight. Another one of those triggers I didn’t know was a trigger that pops up out of nowhere and leaves tear marks on my glasses. Can’t grief give us some sort of warning when these things are about to happen?

Our two-going-on twelve year old has recently started growing out of his 3T clothes. Tonight I had a few free minutes before dinner so I decided to start clearing out some of his winter 3T clothes to make room for summer 4T. As I’m pulling things out of his closet, I’m realizing that a majority of these clothes are ones that Quinlan had worn. I am picturing him in so many of the shirts I’m now packing away because August has now outgrown them.

Then it hits me that 3T was the size Quinlan wore when he died. These were the last clothes he ever wore. These were the shirts he wore for his last Christmas (the green plaid button down), and coming home from his last hospital stay (the red long sleeve with the fire truck). The clothes we saw him in more than any others because he was home with us for most of the last year of his life. We could dress him like any other parents would do for their two year old. One of the “normal” tasks we could do with Quinlan. This realization means we are quickly running out of clothes for August to wear of his big brothers. Only a few more times to have side by side pictures of “who wore it best”, a limited number of times we can say “I remember when Quinlan wore this” as we dress August in the morning. Isn’t that supposed to be one of the perks of having two boys, the younger will always have a full wardrobe courtesy of the older. August’s hand me down wardrobe ends at 3T.

It sucks. It sucks and it’s stupid and it’s not supposed to be this way.

This sends me into a ugly cry that is so necessary in this world of grief, but is so hard when your two year old has the purest of hearts and is asking over and over “you ok, mama?”

“Yes, buddy, I’m okay. It’s okay to cry sometimes” is all I can manage to get out to ensure him that I am ok, if that’s what you can call my present state.

After telling Bear why I went upstairs fine and came downstairs a blubbery mess, him, August, and I had a much needed family hug and all I could think about was the obvious, Quinlan should be here to complete this four person family hug. Again I say, this sucks.

A specific date is creeping up that is really weighing heavy on my heart, and not making these moments any easier. In the beginning of May, August will be alive for 2 years, 5 months, and 2 days. He will be 886 days old. He will officially be older than his older brother.

I’m not ready to dive into the emotions I’m feeling about that day, as I’m still reeling from the 3T clothes situation, but I will say this is a day I have been dreading. As Bear reminded me, when it rains, it pours, but I can only handle one storm at a time.

If you see August wearing clothes that may be a bit too small on him in the near future, don’t judge. Just know it’s because his mama can’t handle the fact that the hand me downs from his big brother are coming to an end and I’m not ready for it.

💚Mama Bear

Today’s the day for another gift from grief

I’m not sure many people know exactly where they were six years ago from a particular day, outside of a birthday, death anniversary, those obvious dates. Sure you may see a memory pop up on your social media page from years past that may remind you, but these dates I’m talking about don’t need reminding.

Six years ago today I was in the ICU with Quinlan, a day after being admitted to the hospital for the second time in about a month. This time, instead of seizures, he contracted RSV and was put in the ICU with new machines we hadn’t seen before on the neuro floor. This time, he had a mask on his face, oxygen 24 hours a day, and the diagnosis of “this typically gets worse before it gets better”. This time, we had a nurse tell us that she most likely wouldn’t see us when she returns to work in a week because typically RSV patients aren’t there for too long (needless to say, we saw her again, and again, and again, etc). This time we were in a bed space on precautions, meaning anytime someone other than Bear or I entered the room, they had to put on a mask, gown, and gloves.

February 16, 2015 was the day that Quinlan was having a hard time breathing. We brought him to the pediatrician and after checking his oxygen levels we got admitted to Boston Children’s Hospital. I even took a picture of the Emergency Department sign, sent it to a friend, and remember saying I wasn’t going to say anything to anyone else because it would probably just be a quick trip (apparently I jinxed it). We spent a good amount of time in the ED before they decided the ICU was the best place for him to be. This was the first time we were welcomed into the ICU world. Surely this would be a quicker stay than our previous four week stay on the neuro floor just the month before (we all know this was not the case).

Shared this picture with a friend, thinking this would be a quick trip to the ED.

Being admitted to the ICU is quite a whirlwind for newcomers, although something that becomes quite routine after having the experience numerous times. By the time we got to the ICU that night, it was after midnight, and for any of you lucky enough to not have experienced it before, let me tell you, it is a circus. Every light in the bed space is on, spot light directly on the baby, numerous doctors asking questions, nurses hooking him up to the monitors plus getting an IV in for medications, as well as hooking him up to any other machines needed. As parents, we’re trying to answer all the questions as efficiently as possible, while still keeping an eye on our baby now laying in a crib that’s not his own, at home where we should be.

This being our first trip to the ICU, I remember us both being so concerned being surrounded by all these doctors and nurses in gowns, masks, and gloves taking care of our child. It was like a scene in a movie. One that you know is being made to be more dramatic than in the real life situations they are trying to portray. Except this was now our real life. Our nurse could see this fear in our eyes, came and sat with us, and told us that the precautions were for the protection of everyone to help prevent the spread of the RSV, not because Quinlan was some sort of dramatic movie character.

Six years ago today was the first morning waking up in the ICU with our baby. The first of many mornings spent in those halls. The first of many meals eaten in the family room sitting next to other families with the same fear in their eyes. If you ever want to feel actual existing fear in the air, sit in that family room for a couple hours with families not knowing what the next minute will bring for their child.

The first of many machines to help with his breathing after getting RSV.

This is what grief gives you. Grief gifts you dates that you would never otherwise think twice about. Dates that bring you back to a place that seem like a scary, dramatic movie. Ones that surely aren’t anything like that in real life but, in actuality, are worse. And don’t think these gifts are wanted. I would gladly give them back.

💚Mama Bear

Today’s the day to accept anxiety, but not welcome it

There’s a lot of talk lately about mental health, anxiety, depression and all that goes along with it. ALL that goes along with it because nothing about mental health issues is simple. Times of change can be a huge trigger for anxiety, depressing, and/or PTSD (Aka this global pandemic we are currently living through). I started having anxiety after 9/11. I was an almost 20 year old, living at home, taking classes at the local community college, and working odd jobs. The world has just changed in the heaviest way anyone in my generation had ever seen, and the way of dealing with this change was not something I, nor a lot of people, had ever dealt with.

I remember my first anxiety attack. I was sitting in one of my science classes in my third year of college, still within the first month or so of the school year because 9/11 had just happened. It was my first semester at this particular college (as you may know, I went to three) and the professor was talking about pressure. He was talking about the way it was applied to all things on Earth yada yada, although clearly described in a much more scientific explanation than the one I just gave. It was in that moment I started feeling a way I had never felt. I started hearing his words and, uncontrollably, feeling like the pressure was on me and wouldn’t let up. My breathing got weird and I had to get out of there. I excused myself from class and wandered around outside until I found someone who could tell me where the nurses office was. I was convinced something was happening to me. I couldn’t focus, couldn’t stop fidgeting, and needed someone to tell me I was okay. I found out the nurses office was on the other side of campus. At that point I wasn’t sure I’d make it that far so I found a bench and sat. I’m not sure how I figured out what to do, or what was going on, but I know I ended up back in class just in time to be dismissed (thank goodness!). I went home and after talking about it, realized I was now a panicky, anxious individual who had just experienced the first of MANY anxiety attacks I’d have in my life.

I had a handful of these attacks over the next few years, all feeling relatively the same. Feeling like I was crawling out of my own skin, needing someone to sit with me and tell me I’d be okay, the “typical” panic/anxiety attacks for me at the time. They were never triggered by anything in particular, but they were this new part of my life happening every so often.

And then my son died.

You’d think living through 2 years, 5 months, and 1 day of the life that the Brat1 mutation gave us would cause even more anxiety attacks for me, but it didn’t. My anxiety came full force after he died. I was no longer in the “go go go” mentality of hoping for a cure, hoping for a miracle, doctors appointments, nursing schedules, driving to and from the hospital daily when he was inpatient for over 300 days, suctioning, alarms, feeding schedules, medication refills, administering medicines every couple hours, and trying to keep my son as content as we could while living with this essentially unknown disease. My brain was way too occupied to have any major anxiety be let in. For me, this life I was so consumed by came to a screeching halt and my brain had time to think again. A brain with time to think can be scary.

The rest of my anxiety story kinda goes like this: put off taking meds, saw a counselor, anxiety got worse, finally took meds, realized it helped my anxiety and was nothing to be afraid of, all to bring me here, three and a half years later, still taking my chill pill.

Please don’t get me wrong in thinking that because I take anxiety medication that I’m cured of all anxiety. That will never happen, because, my son died. My brain will always be a bit shaken up after going through something like that (to put it mildly). But, I can say it can be easier to control now and I can feel it coming on, know more of the symptoms, and I’ve allowed it to become a known part of my life. Although it will never be welcome, I’m more accepting that it lives here.

All of that to say, we’re approaching January, my anxiety inducing month of the year. In a year like no other, I’m not too sure how this January will be (and again, that thought of not knowing gives me even more anxiety P.S. grief sucks). But, I know I have my chill pill, a little CBD oil, an amazing support system, and a two year old who’s as good a distraction as any.

So, as much as I’m happy to see 2020 go, as many, many people are, I’m just as anxious to see another January roll around.

💚Mama Bear

Today’s the day for a four year old memory

This picture came up today in my “memories”. I check these “memories” every day because it’s one of the ways I still connect with Quinlan. What were we doing together 6 years ago today? 5 years ago? What about 4 years ago? And then to check the memories from 3 years ago. Those memories no longer exist with him. Every year gets another year further away. I long for those “memories” that pop up.

When I saw this picture from 4 years ago, it was one of the <gasp> reactions, as opposed to an <aww> reaction (you know, the cute ones of him and I snuggling or him looking so handsome). This picture, once again, shows just how different my two mom lives have been. It’s something I’m having a hard time with. I want my mom life to feel like one, but instead it feels very much like two. And I’ll be honest in saying I don’t like it. It doesn’t feel right. But I’m working on accepting it.

Now to explain this picture. For those lucky enough to not know what it is, it’s a trach. It allowed Quinlan to breath properly. The funny balloon shaped piece to the left is supposed to be attached to the little skinny tube piece on the right. When the trach is inserted into the throat, there needs to be something there to keep the trach from sliding in and out easily. That’s where these two pieces, that are supposed to be attached, come in. Once the trach is inserted, the funny balloon shaped piece, that should be connected to the little skinny tube, is used to push a small amount of water into the skinny tube and fills up a little balloon on the trach in the throat. This applies just enough pressure to prevent the trach from coming out unnecessarily, as well as preventing leaks, or air sneaking out on either side. Obviously because Quinlan was on a ventilator attached to the trach, keeping the trach securely where it is supposed to be was very important. The tubing on the ventilator can sometimes pull at the trach if it’s moving around too much. We had a clip on the vent tube that we would clip to his clothes to keep in place. (This is important to the story. Dang clip.)

So, why are these two pieces that are supposed to be attached NOT attached, you ask? Let me explain.

On this day, our day nurse had just left and it was just Quinlan and I, hanging out for a few hours until Bear got home from work. We were doing our usual, I was keeping an eye on his sats, making sure the tubing wasn’t pulling, and that all looked good. I unclipped the vent tubing to adjust it. That’s where the separation of these two pieces happened. I clipped the dang little skinny tube instead of just his clothes and it completely cut through! The pressure was being released from the trach and this wasn’t what was supposed to be happening. I needed to do an emergency trach change, by myself.

This is when I started talking to myself. “Okay, Lindsay, you know how to do this. Quinlan, we’re good, we got this”. This was my first emergency trach change.

I walked over to all of our supplies, still talking to myself “Okay, okay, we can do this”, pulled out the trach and all supplies needed (syringe, tape, trach ties, Mepilex AG) and headed over to Quinlan for my first solo trach change. This whole time, Quinlan was just chillen on the couch, acting like his mom wasn’t freaking out. I got him positioned and did it. I removed the trach, put the new one in, attached the trach ties, filled the balloon, put on the Mepilex and done (not sure that was the exact order of events but it was something like that). My first emergency solo trach change, because I clipped the dang little skinny tube.

Four years ago today, that was something I had to do as a mom for Quinlan.

Today, as August’s mom, I made him breakfast and listened as he sang along to his favorite songs.

My two worlds.

💚Mama Bear

Today’s the day he would have been 6 years old!

Today’s the day my forever 2 year old should be my 6 year old.

Today’s the day I picked up a blow up birthday cake for a decoration my forever 2 year old will never see.

Today’s the day I stood in front of the ice cream section in the super market buying ice cream to go with the cupcakes he will never eat (and started crying – today’s the day I’m thankful for having to wear masks).

Today’s the day we release butterflies into the sky to surround us in comfort because we don’t have you here to hug.

Today’s the day I celebrate becoming a mom and also mourn the only mom life I knew with the one who made me a mom.

Today’s the day I cry because you’re not here.

Today’s the day I smile because you’re mine.

Today’s the day for all of the what if’s and would’ves.

💚Mama Bear

Today’s the day for more guilt

The guilt is real, folks. And it’s rearing it’s ugly head at this very inconvenient time.

We all struggle, in one way or another, especially now. This weird Covid-19, “rona” thing happening is affecting us all. We’re all on high anxiety, antsy, when is this going to end mode and it’s manifesting in each of us in such different ways.

Some of us feel the anxiety part more than anything else. I’m raising my hand. I’ve learned over the last few years that my anxiety likes to show in more physical ways. Sometimes I feel like I want to take deep breaths, sometimes I can’t sit still, sometimes I feel like I need to take a break from wearing my glasses (this one is weird, but it happens. Why does it happen? I have no idea). Sometimes my anxiey is a result of feeling like I need to cry, a way to release the anxiety. So I’ll have a good cry and my anxiety slowly settles down. The unknown of this new covid life combined with having anxiety to begin with, is making for some interesting times.

For others, and I’ll raise my hand for this one as well, the antsy bugs are at an all time high. I never realized how much driving to and from work, or being able to shop at Target whenever I wanted was such a stress reliever. Freedom at it’s finest.

So here is where the guilt comes in, at this very inconvenient time.

I am a mother who has lost a child, I think we all know this by now. My first born child who was, and still is, my world. He is a part of my every day life, whether it’s thoughts, stories, or tears. I would do ANYTHING to have the situation changed, to have him growing up with his brother, to have him with me. I yearn to be stuck in this quarantine life with both of my boys, four of us with nowhere to go, nowhere to be except with each other.

That will never happen.

So, when the moments come (the MANY moments throughout these “new normal” days) when I am working on my computer, now at home on my kitchen table, and Quinlan’s little brother comes up to me, blabbering away in his baby talk with a “mama” thrown in for cuteness, and I have to say “I love you, but please go play” the guilt I feel is REAL. I should be squeezing him and kissing him every second of every day because the fear of losing another child is also real. And when I can’t because of work, or chores, or whatever else comes with being and adult, it breaks my heart.

*Please know that I fully understand this comes with being a mom to any and all children, I am not minimizing that fact. I only know this type of guilt so it’s what I’m able to speak about.*

I was talking to a new friend about this issue, a friend who was brought into my life because she also lost her child, and she brought up a very relevant point. She said that it’s almost like we are expected to love our living children even more because we have experienced the loss of another child. But then in thinking about that, who is saying that we are “expected” to be doing this? Society, friends, family, other’s in the loss community? Nope. It is us, the loss mom’s who are putting extreme pressure on ourselves. We feel like we have to devote every single second of our lives to our living children, and more importantly, not complain because we are so incredibly lucky to have children that we can kiss and hug whenever we want. And yes, I do feel beyond lucky, and feel like I have been saved by our youngest child. But damn, that’s a lot of pressure to put on ourselves.

So, while it’s easier said than done, we need to not feel that guilt. We have to know that we are going to have the frustrations just like every mom, the moments (many, many moments) where saying “I love you, but leave me alone” is necessary. No guilt!

Maybe it’s because we have the love for our living child combined with the love for our child who has passed built up inside of us. Yet our day to day lives only allow us to be able to share that love with our living children, to hug, kiss and squeeze as much as entirely possible. As a result, they get it all when that love was designed to be shared with all of your children. That is one of the incredibly messed up parts of having lost a child.

Or maybe it’s because this is such an unnatural situation to be in, that no one really knows how we are supposed to live our day to day lives. So there is guilt, there are kisses, there is lots of pressure, and lots and lots of love.

💚Mama Bear

Today’s the day to remember that was me

So, there have been moments lately where I have read about a mom who lost her child and think “that is so unimaginable”. Or hear about a child who has been in the hospital for a prolonged period of time and say to myself “that poor baby, and his poor parents”.

But then I remember, that was me. That is me. My husband and I are those parents.

It’s a seriously surreal feeling. It’s a completely different world I once lived in. I can’t say that I’m too sure I was actually fully present during that time in my life. I was so focused on taking care of Quinlan that I’m not sure I actually soaked it all in (nor do I believe it’s humanly possible to do so in such a traumatic situation). I was so concentrated on learning all I could from the doctors, nurses and therapists in order for Quinlan to survive. Hearing about these families going through the same thing as we went through sometimes seems so foreign to me, while also seems so incredibly familiar. I could see a child laying in an ICU bed space and know (or at least have an idea) what that tube is for, what those machines do, and how he or she is doing based on the numbers on the monitors. I could still hear the alarm and automatically jump up to check what their numbers show. I still know the fear the parents feel every moment. Maybe this feeling of disconnect is my body’s way of protecting myself because if I truly did feel it all, all the time, I would not be able to continue on and live the rest of my life.

I recently realized that August is the same age now that Quinlan was when he was finally diagnosed with having the Brat1 mutation. These last 15 months with August have gone by so fast, it’s almost impossible to think that in this same exact time frame, we went through all we did with Q. Again, such a different world that was.

When Quinlan was August’s age, he had spent 300 days admitted to the hospital. August has spent zero.

Three years ago this weekend, Bear and I spent two nights away at a hotel in Kennebunkport to “get away” from the fact that our two year old son had just passed away (there’s no getting away from that, as you know or can imagine). This weekend was spent chasing after August at the playground and watching him giggle as he went down the slide.

Could these two weekends be any different? It’s like two different peoples lives.

And saying all this now brings on the guilt. The guilt of wondering if I was a different mom to Quinlan than I am now to August. Does feeling as though that life is so foreign take away all that we went through? Am I more or less a mom to one over the other because these journeys have been so incredibly different?

I feel like I’ve lived such an out-of-body experience, yet that same experience has changed me, so how out-of-body could it really have been?

That was me then and this is me now. I’m still working on introducing them to each other.

💚Mama Bear