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