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 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 is one of the days I actually look forward to. I get to go back to Boston Children’s Hospital and give them a donation that I know means SO much to the families in the ICU. A small gift to let them know they are being thought about.

It may seem strange to many that I actually look forward to going back to one of the hospitals that Quinlan lived at, that he was his sickest at, where we almost lost him, where you see things that you no one should ever have to see. Something that shouldn’t even exist in this world. Sick children.

I was driving in to 300 Longwood ave, something I could still do with my eyes closed, almost 5 years since his last hospital stay, knowing exactly which lane on Storrow drive to switch to at which point, and which light I should be in the right lane to avoid all the cars turning in the left. Feeling like it was 2015 and Quinlan was being his perfect self, hanging out with the nurses and doctors who had become his second family.

Approaching the turn from Brookline ave to Longwood ave, transforming myself back to the feelings of great anticipation, being SO close to Quinlan, yet knowing I still had to make the left-hand turn at the light (often times having to wait through 2 or 3 sets of lights), then making the second turn to get into the parking garage, finding a parking spot, crossing the street to enter the hospital, sign in, and finally be where I needed to be. Each level of that parking garage knowing I was getting closer and closer to going in to see him. Sometimes it had been hours, sometimes it had been a day but the giddiness of knowing I was moments from seeing him and kissing him, holding his hand and running my fingers through his hair never wavered.

Today (and every visit since his death) that feeling is a mirage. The same emotions showed up, purely from muscle memory, but Quinlan wasn’t there to ease the frustrations of traffic and long car rides. He wasn’t there to make any other worry I had completely disappear. This time I crossed the bridge that was not yet finished when Quinlan died. This time I was bringing small acts of kindness to other parents who had the same anticipation when they approached the hospital where their child was fighting for their life. And this time it was 5 years later and I was there for a completely different reason. A good reason, but a reason that only exists because Quinlan was born with a mutation of the Brat1 gene.

If there are so many emotions involved, why is it something I look forward to? Knowing I’ll most likely have a grief hangover the next day? That I’ll most likely break down and have a good ugly cry at some point in the day? Today the break down happened before leaving for the hospital while getting ready. I went through all stages of grief in about 15 minutes. All while wondering why I’m the one who had to lose a child in order to have this passion for helping others, never again being naive to the fact that this world of sick children exists. At the same time feeling grateful that the most incredible people have been introduced into our world purely because we are the ones who have lost a child in order to have a passion for helping others.

I look forward to being at a place where Quinlan was always alive. Quinlan always left the hospital to come home. The people there saw what Bear and I went through every single day. They heard our questions, knew our concerns, and lived it right alongside us. There was no having to explain how Quinlan was doing. They knew just as well as us. There was no questioning the torment we went through with daily decision making that no parent should ever have to make. They saw it and were a part of it.

All that to say, this is why I look forward to this day. It’s a connection to Quinlan I will never have anywhere else. A connection not many can say they have but one I’m thankful for every day.

💚Mama Bear

Today’s the day that unhealthy is beautiful

You often hear pregnant couples say they don’t care if their baby is a boy or girl as long as they’re healthy. I used to be one of those people. Then I had Quinlan.

Don’t get me wrong, no one would ever say “I’m happy with a boy or girl, as long as they can spend months in a hospital” but honestly, having Quinlan healthy or unhealthy, boy or girl, he was our baby and it is literally impossible to love him any more.

Of course, I would give anything to have him still here with us physically, growing up next to his little brother, watching him get excited over the sound of our voices, and feeling his mighty grip around our fingers. But that desperate longing doesn’t take away from the joy, happiness, laughs, and smiles that his “unhealthy” life brought us. It’s a tough life, but it’s a beautiful one. It’s full of so many dark times, but also little milestones that bring so much light and joy.

Quinlan wasn’t our “sick” child, he was, and still is, our child. And honestly, I could never picture him any other way. People have said they can now see him running and jumping, doing all the things he could never do. I’m not sure I can see him as that person. Quinlan was always our quiet observer, content to be snuggled and held, and I can’t imagine that has changed.

He was always meant to be exactly who he was.

Parenting any child is never easy. They could be as healthy as they come and you are still going to have frustrations, worries, and a need for bedtime to come hours sooner than it actually does. Parenting a child with a disease, syndrome or illness brings feelings you never knew existed, both good and bad. It makes you realize what should be a top priority, and what you can truly live without. It makes you look at life through a different set of eyes. As much as it takes away, it can also provide you with things you’d never know otherwise.

So, while it feels like it should go without saying, we all want the healthiest baby, everyone knows that. But just know that if your child isn’t born with the cleanest bill of health, while it is nothing short of scary and life changing, it is also just as beautiful and as full of love as you could have with any child.

💚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, four years later.

It’s been four years since the last day I have touched Quinlan. It’s been four years living with this grief that I never thought possible. It’s been four years since Quinlan died.

I wish I could say it has gotten easier, but it hasn’t. It’s different, but it’s not easier. In some ways it’s getting harder as time goes on. I didn’t think that was supposed to happen. Isn’t “time supposed to heal all wounds”? Nope, it’s bullshit. Try imagining never seeing your child again, and tell me how much time you think it would take for you to be healed from that.

Yesterday I was good. Then last night when I had time to be alone (granted it wasn’t long, just enough time to drive to pick up take out) I wasn’t good. I broke down and felt like I wouldn’t be able to stop. But then I did and I was ok again. If you had asked me last night, my idea was to stay in bed all day today because that’s how I was feeling then. But now, I’m out of bed, took a shower and even got dressed.

That’s the thing with grief. Who knows how I’m going to be in a minute, an hour, tomorrow. I’d say “even after four years” I have no clue how I’m going to feel but I’m still a rookie in this vilomah world. I’ve been told even after 10 and 20 years I’m still going to be living these days with no direction. And I certainly believe it.

Today just feels icky. I want it to be tomorrow. There are times when I want to sit in the pain, but today I don’t, although I feel like because it’s January 30th I have to.

January 30, a day forever and ever tattooed on my brain. From the 5:30am alarms and nurse screaming my name, to being told by the doctor in that tiny room that my child “didn’t make it”, to the fogginess of the day, feeling so thirsty, never haven’t felt so much love surrounding us, to running my fingers through Quinlan’s hair that one last time. It’s a day that will never be the same again.

💚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