Today’s the day that should have been

Hi. It’s me. Miss MIA. I could rattle off a list of excuses as to why I’ve totally fallen out of the blog world (summer craziness, chasing around a 9 month old, blah blah blah). Really it can all be summed up as plain old adulting. We all know what it’s like, we all understand, no excuses needed. Adulting happens whether we like it or not.

(It’s currently been an hour since I wrote the last paragraph. I guess babies like to eat occasionally, and apparently it’s up to us as parents to make it happen. Talk about “adulting”.)

Now back to blogging.

So, I’ve risen out of blog world hibernation because it’s one of those days. (Hold please, crying baby crawling over to me).

Back again…so yes, today is one of those days. One of those days not necessarily on the calendar, or a day I’ve thought much about over the last two and a half years. But a day that has snuck up on me. Quinlan should have started kindergarten today. He should have been one of those kids standing at the front door with one of those signs telling what he wants to be when he grows up, who his teacher would be, his favorite book, and all the things he SHOULD be.

And to add to all the feels of today, tomorrow he would have turned 5 years old. Five years since he made me a mom. Five years since my life changed forever. And not just forever, but FOREVER.

So, yes, it’s one of those days, one of those weeks.

With that being said, and the feels coming out in full force, I wanted to make a list of all the things as a mom that I want to do, wish I could have done, and hope others do. But mostly things I want to remind myself to do/keep doing even when we have a teenager who no longer wants to be in the same room as me. Being a bereaved parent, I think our brains work in a different way. Slightly more paranoid, yet maybe more forgiving. More anxious, yet also more freeing. It’s really quite confusing. (Full disclosure: I am not a professional and do not expect anyone to take any of my advise. But maybe something I write will be exactly what someone needs to hear one day.)

In no particular order:

  1. Give ALL the hugs – even when they just won’t go to sleep and keep reaching for you, squeeze them tight (#currentmood)
  2. Rub their backs until they fall asleep for as long as possible. Yes, I will get in my car and drive however far away I need if Baby Bear needs a mama back rub to fall asleep, even when he’s 50 years old. I’ll be really old, but I’ll try my hardest.
  3. Take the pictures – especially the milestones, the first days of school, and the selfies. There is no such thing as too many pictures. Just wait for the hundreds of “first day of school” pics Baby Bear will have taken. Sorry in advance! Unfriend me now.
  4. Laugh with them, even when you’re feeling down. They need to see it as much as you need to feel it.
  5. Let them sleep in your bedroom as long as you want – I tried to keep him under my watchful eye until he was at least 10 years old, but, that didn’t work out. (Sadly I’m only half kidding about this one). Turns out he needed his own crib and I needed to not be awake every hour making sure he was still breathing. Not good for my sanity.
  6. Sit in the backseat with them, even after they “need” you to. I used to have to sit in the backseat with Quinlan every car ride because of his medical condition. There are times now that I’ll sit in the backseat with Baby Bear just because. No reason other than I want to.
  7. When they fall, don’t always pick them up (only sometimes). Does that make me a bad mom? We are currently in the crawling, pulling himself up on EVERYTHING stage and with all my might, I try not to reach down and pick him up every time he falls. My husband will attest to the fact that I will immediately jump, ask “Is he okay?!”, and want to coddle him, but, he is fine. In fact, most of the time, he laughs afterward. My child the daredevil. However, the minute there is blood, yes, I will freak out, coddle, jump, run, pick him up, etc. etc.
  8. Go with your gut. Ask all the questions. Get every opinion you need to feel comfortable with anything going on with your child. They have a hangnail that looks funny, take them to the number one hospital in the country. You can NEVER be too overprotective of your child. You will never seem overbearing or crazy for wanting to know exactly what is going on with your child. You are your child’s best advocate.

It’s a small list, and yes there are a million other things that could be added, but these are the things right now that I wish I could have done for Quinlan, and things I hope I can continue to do for Baby Bear as long as possible.

Take nothing for granted, and take all the pictures. You will never get sick of them.

💚Mama Bear

Today’s the day for a dip in the lake

Guess what I did this weekend. I brought Baby Bear to the lake, and he went in the water!

Sounds like a pretty typical weekend for those dealing with this hot New England summer (I’m NOT complaining, bring on those beach days…at least on weekends, when I’m not sitting in an office).

For me, this is anything but typical.

My family is lucky enough to have access to a cottage on Lake Winnipesaukee during the summers. A place to sleep, a place to sit on the sand or float in the water pretty much any time we want. Nice, right? Except, in the almost five years since becoming a mom, this is the very first time I’ve brought my child to the lake. I’ve been up there with family, friends, cousins, cousins kids, nieces. I’ve been up there pregnant and not pregnant. I’ve been up there prior to being a mom and after becoming a mom. But never have I been up there with my child. Until this weekend.

Quinlan was born towards the end of lake season. By the time the following summer rolled around he was still admitted to the hospital. The following summer when he had finally been discharged, he had a trach, ventilator and g-tube. All of which make it hard (not impossible, but hard) to make the one and a half hour drive to NH, stay overnight, never mind taking a dip in the lake. Again, not an impossible task, but one that never seemed like a viable option for us.

I had often thought about what trips we could take as a family. It was a short list. Renting an RV so we could drive a good distance but still be able to keep his ventilator, battery, O2 monitor, and g-tube plugged in. And, of course, keeping track of where all the closest hospitals would be at all times. We looked into renting a house for a week. Again, an easier vacation so all of his machines could be plugged in most of the time. This would involve checking with the renter to ensure electrical outlets were up to date and could handle multiple machines being plugged in continuously. This could be doable. And yes, still mapping out exactly where the closest hospital was located. It wasn’t that we didn’t want to take him on vacations. It was far from that. It’s that being the parents of a medically complex child, especially one that requires being plugged in at all times, literally plugged in, puts a bit of a different spin on “vacationing”. No vacation is easy with kids. In fact you usually need a vacation from the vacation (from what I hear from others but am slowly learning for myself). To leave the comfort of your own home, where you know where every extra trach is, which drawer every piece of gauze or medical tape is kept, and having a nurse as another set of hands and eyes watching over your child, that’s scary. If you’re lucky, you may have a nurse or two that will come on vacation with you for a couple days. But I’m guessing having multiple nurses abandon their day to day lives to vacation with you is rare, and no one can blame them.

Packing up Baby Bear for two nights away was a bit of an ordeal for me. Not because I’m new to packing up a child, but because packing for two days when it doesn’t include a hospital stay, extra g-tube, ventilator battery and ambu bag seemed surreal. Yes, I certainly overpacked. Did he need 12 bibs for two days? No. Three days, maybe, but I still could have gotten away with far less. This new “normal”, which actually IS “normal” for many, is something I’m still getting used to. (Next time I’ll cut the number down to 8 bibs).

It’s not easy to sit here and feel fully excited about doing this “typical” activity. Something I can say I’m finally able to do, that I’ve wanted to do for years. In my mind that makes it seem like there were no firsts or “finally able to do’s” with Quinlan. Or that the activities we did do with Quinlan I wasn’t excited about. Clearly that wasn’t the case.

I guess it’s just that every new experience that I’m able to say “yes, I’ve done that” makes this new world of ours seem that much more real. Real in the sense that our “abnormal” is being replaced by “typical” and that comes with all sorts of emotions.

Sometimes I still feel like I fit in better with the “abnormal” than with the “typical”. Is that normal?

💚Mama Bear

Today’s the day to forget the wean and chill

A new realization has hit me. Something I’ve been told over the last 2.5 years and have “heard”, but haven’t really been applying to my life as I probably should be.

It started a couple weeks ago when I decided I wanted to wean off of my med (aka chill pill). I talked to my doctor about it and she was all for it, as long as I felt okay with it. My thought was “Well, yeah I’m okay with it. It’s a low dose. I’ve been feeling better in terms of major anxiety. Let’s wean!” So, I proceeded to take my chill pill every other night, instead of every night. Okay great. Here we go.

About a week later, I started noticing that I was feeling a bit more sad, breaking down more than I had been, more anxious, thinking back to more of the sad times with Quinlan, more of the angry “why” feelings instead of the proud “wow” feelings. Hmmm, okay, well this hasn’t happened in a while. I know grief comes in waves but this just seemed different.

It didn’t occur to me until a day or so later that I was having withdrawals from the meds. WTF! I did not see this coming. How did I not expect to feel a change?! It’s so obvious, yet it wasn’t on my radar. Duh!

After talking to a couple people and mentioning how I was feeling (and realizing it is withdrawals. Again, duh!), a couple things made me come to this realization (don’t worry, the actual realization is coming, I know you’re waiting in utter suspense).

First, a close friend of mine asked the simple question “why are you coming off the med?” Seems like an easy question to ask and answer. I quickly replied “Just to see if I can cause I don’t want to be on it forever”.

Okay so there’s that.

The second point that was brought to my attention is from a complete stranger. A friend of a friend I met at a bereavement conference I attend once a year. She told me she got this pep talk from a great friend of hers, and it hit me, in a good way: “You have been through a trauma that nobody should have to endure, and most cannot even fathom. It’s your reality so you’ve adjusted and somehow, on some level, come to view this as normal. It’s not fair and it’s not normal. GO EASY ON YOURSELF. If the goals you set for yourself take a little longer to reach then that is OKAY. You got up today, you did your best. You’re in the early days of this trauma of losing your child. Go easy on yourself.”

Like, woah. Realization (that I’ve “heard” a million times): GO EASY ON MYSELF.

It makes sense. It really truly does. But, how does one do that? It sounds easy, but to actually do it, consistently, every day. Do you know how hard that actually sounds to me? Probably part of the reason I’ve “heard” it for so long but actually just realizing now that it needs to happen. I’m not talking about “taking it easy” like leaving dirty dishes in the sink overnight “to soak” (as my husband likes to call it) so I can relax for a few minutes, or sitting down to watch some mindless tv when the baby has a few toys to keep him occupied. Those things I have no problem doing, as many can tell you. It’s the deep down, in the core, mindfully making myself ACTUALLY go easy thing that needs to happen.

When my friend had asked me the simple question of “why” and I replied “cause I don’t want to be on it forever”, well, that’s a silly answer. Why do I feel the need to prove that to myself right now? Two and a half years of grief after losing your child is no where close to forever. Really, it’s just beginning. If I can’t wean right now, then I can’t and that’s fine. In the words of a complete stranger, my new normal is not normal. I’ve been through a trauma that nobody should have to endure, and most cannot even fathom. If I can’t reach that goal right now and it takes a little longer, that’s OKAY.

I’ll be honest, most of the time I still can’t wrap my head around the fact that I am a bereaved parent. I lost my child. That doesn’t happen in my world. That’s not normal. But it is my normal. So, if treating myself a little easier, maybe be a bit vulnerable, well then so be it. I have to realize that’s what has to happen.

And, so yes, if I need to stay on my chill pill for now, it’s the least I can do to actually go easy on myself (and still leave the dishes in the sink, and watch Real Housewives. Don’t judge.)

💚Mama Bear

Today’s the day for my own war – PTSD

Two days home sick with Baby Bear. Multiple temp checks. Multiple doses of Tylenol given. Two appointments at the doctor. One poke of his little finger and a swab of his nose. All the cuddles.

And some PTSD triggers to boot.

Damn, this whole PTSD thing is real.

Post-Traumatic Stress Disorder.

Before living through my own experiences with PTSD, I expected it to be what I’m sure many people think. Something you are diagnosed with after something horrific, crazy, blood shedding, like war. Men and women coming home after being in the midst of battles, fighting for their lives, seeing things one should never see. You hear about these heroes coming home and not being able to function because they are mentally going back to that horrible place and that horrible time. Before going through it myself, this is what I thought of when I’d hear the term PTSD. Something that sounded incredibly difficult and life changing, but something I assumed I would never experience because I was never going to war.

Well, let’s take another look at the above:

– being in the midst of battles (medical battles) – CHECK

– fighting for their lives, seeing things one should never see (my child being poked and prodded, hooked up to machines, medically paralyzed, not breathing) – CHECK

– not being able to function because of mentally going back to a horrible place and a horrible time (needing medications for anxiety/depression, not being able to go to work, etc) – CHECK

Apparently, I’ve lived through my own version of war where PTSD is real. A war all too many experience for many more reasons than I had ever imagined.

Some PTSD symptoms I’ve dealt with have mostly been anxiety (hence the medication, my “chill pill” if you will) and trying to get certain thoughts out of my head, ones that I’m pretty good at deflecting as quickly as possible, most of the time, but it’s never easy.

A couple examples of triggers for me have been: ambulances at night, for one. First it makes me think about the red lights I saw coming up the street the night Quinlan passed, waving them down to get inside as quickly as possible. After getting passed the red lights trigger, I always question who is in the ambulance. Is it another child fighting for their life? Yuck, not a great thought.

The hospital where Quinlan was taken (and where I saw him for the last time) is another big one. This is a trigger I had to conquer head on when I was taken there, by ambulance at night (red lights) shortly after Baby Bear was born (there’s a couple triggers right there tied up nicely and handed to me with a bow). That was a jump in head first type of situation. Hormones plus triggers. Talk about a long night. All is good, thankfully, and I was able to kick that trigger in the rear (although I still hope to never go back there again).

Another trigger that I’d say sounds the oddest (if there is such thing as an odd trigger) is a particular album. Taylor Swift’s 1989 album. I would listen to the cd in the car on my way to the hospital to visit Quinlan when he was first admitted, before we knew the hell we would soon be experiencing. I hear any song from the album and I immediately go back to sitting in the car, usually on Rte 93 stuck in traffic, thinking about the early days when we thought that time was just a quick bump in the road. Clearly it was not just a bump. It sucks because I really like that album. That’s the thing with triggers, it takes away certain parts of your life that seemed so normal before. Something as simple as an album.

Now that Baby Bear has gone through his first real illness, the first illness since dealing with Quinlan’s illness, I’m trying my hardest not to assume he’ll end up in the hospital (for 10 months). Or thinking we’ll be adding a whole list of specialists that he’ll now have to see. Having him tested for RSV made me cringe. RSV is what put Quinlan back in the hospital, where he stayed for 10 months. I know it’s a completely different situation (and those words go over and over in my head) but that’s where my mind now goes. My sick child, apparently another trigger.

It’s tough. It’s real. It’s not always a physical breakdown that the world can see to know you’re dealing with it. It can be something as small as hearing a specific word that takes your breath away and puts your mind in a place you don’t want to be. It can be talking yourself out of it, knowing it’s a trigger, and remembering that it’s going to be okay. Or it can be something like taking medication every day to attempt to make it go away. All tough stuff. But unfortunately, all normal.

Figures one “normal” aspect of my life has been dealing with the “abnormal”.

💚Mama Bear

Today’s the day for a few new experiences (both normal and abnormal)

A few new things have occured with our family this past week. Things we had never experienced before. One is something that sounds so routine when you have kids. And the other is something that was routine for us for so long that when it happened this week, the way it did, it felt so foreign.

The first is the routine experience that has never been routine to us before. Baby Bear ate baby food. From a spoon. Directly into his mouth.

That’s it! It was so beyond exciting that we are practically shouting from the roof tops. That is the latest milestone that literally had Bear saying “Shit’s getting real!” and we could not be more giddy about it. So mundane, right. Yes, it’s always exciting when a milestone is hit, especially something like eating food that makes your baby seem that much older and not so “baby” anymore. It could draw a tear from nearly every parent. But to be on kid #2 and have this be a completely new experience for us, really is mind boggling in our abnormal world.

When Quinlan was born he used a bottle, as expected that a baby would do. He didn’t gain weight as hoped, but, he was eating. By the time he was 4 months old and diagnosed with having seizures, he was prescribed multiple seizure meds which in turn made him drowsy, which then lead to a feeding tube. From there it was failing numerous swallow studies and ultimately having a g-tube placed directly into his belly. This allowed for all food and meds to be given without anything going directly into his mouth. At the time, we weren’t sure if this was a permanent thing or if it would only be used until his meds became consistant and his seizures got under control. Little did we know the g-tube was going to be mandatory and the number of seizure meds would continue to grow throughout the rest of his all too short life. Never did a drop of food enter his mouth. A baby spoon was never needed. We had been gifted the obligatory set of baby utensils, kid bowl, plate, and even the handheld mesh fruit holder that babies can learn to taste the fruit without the risk of choking. All those products were kept in their packaging, in the back of the kitchen cabinet with many hopes that one day they’d be opened and used as they should.

So, while Quinlan was never able to use them, we were finally able to use a spoon to spoon feed Baby Bear the, oh so lovely, mush, and it was amazing. Sweet potato face, and all! Check it off the list of “woah, this is happening” moments.

The second new happening this week is a bit more obscure. The abbreviated version is that I brought my child to Boston Children’s Hospital, and it wasn’t through the ER or for a doctors appointment. It was purely for a friendly visit.

Baby Bear got to venture in to Boston to meet some of the extraordinary people that were such a huge part of Quinlan’s life (and all of our lives). As bittersweet as it was, it was ultimately a gift to have him be held by people who have also held Quinlan in their arms and see the same caring heart shown to both of our boys. To hear them say “he looks wonderful” was amazing.

It goes without saying that Quinlan was also a wonderful soul, but there was no hiding the fact that he had his diagnosis. And when doctors would see him in the hospital, it usually wasn’t when he was looking his best – although his handsome looks were ALWAYS very visible.

I actually had a moment when driving to the hospital this week that was somewhat bizarre to me. I was at the intersection of Brookline and Longwood, an intersection I have driven through hundreds of times, and I looked in my rear view mirror and saw Baby Bear sitting in his car seat looking around at the colors and movements outside, as he always does. My thought at that moment was “this has never happened before. I have never driven to this hospital with my healthy child in the back seat”. Every other time driving through that intersection was either driving by myself with the giddy feeling of being so close to getting to the hospital and up to the floor to see Quinlan, driving with Quinlan and another adult in the back seat (because he always needed an adult sitting with him, especially in the car), or following the ambulance with him inside it. I was driving to Children’s and not because my son was sick. Again, check it off the list!

I know we’re going to experience many new and different things with Baby Bear that, unfortunately, we weren’t able to experience with Quinlan. It couldn’t be a more happy and exciting, yet sad and disheartening set of feelings. One thing I know for certain is not a single experience will be taken for granted, not a spoon full of mush or an afternoon drive to visit some friends (who just happen to be some extraordinary humans).

💚Mama Bear

Today’s the day I’m wracking my brain

You know what sucks? I can’t remember all of Quinlans meds. It sounds so unimportant, something so not needed to be filling up space in my brain right now, because we all know that is limited these days, but it’s actually making me kind of upset.

His meds were a HUGE part of our every day lives for 2 years. Our days revolved around his meds. We had a full blown schedule of the names, times, and doses of each one hanging in our kitchen, above our make shift medication station. We got to a point, pretty quickly, of not having to look at the schedule during the multiple times during the days when he needed a medication, it came so natural to us. I would look at the clock and automatically know when it was time to get his meds ready. 8pm was a big one. Knowing he needed 4 (or 5…why can’t I remember!) medications to be prepped in syringes with the water flushes, along with two nebulizers. I could watch Jeopardy and know that as soon as the last contestant answered the final Jeopardy question, I could go prep the meds and be back in time to only miss a few minutes of whatever 8 o’clock show was on that night (and if it took a bit longer, which many times it did, thank goodness for dvr). We had it down to a science. The next meds weren’t given until 10pm but that was typically only 1 or 2 that needed to be prepped. That was nothing in our minds. If it was a night when we had an overnight nurse come “early” (10pm) we wouldn’t have to worry about giving those meds and could go to bed “early” to rest up to do it again the next day. This was just a small part of our daily night time routine every single night, and now I can’t even remember the names of the damn meds.

We had multiple trips to the ER during his time home. Each time we’d inevitably be seen by a different ER doctor than the last time. After asking why were there (most of the time they knew just by looking at us why we were there…f’n seizures) the next question was always “What meds is he on?” Without pause, I rattled off each med, how often it was given, and the dose. No paper necessary. No need to look at each bottle to check the dosage. We had those things memorized. This included 5 daily seizure meds (and an additional couple for emergencies), 2 daily nebulizers (plus a couple additional for when he was junky and needed an extra boost), a reflux med, a vitamin, probiotic, and a partridge in a pear tree (not to mention his feeds that were giving at certain time as well, all somehow stored in this big head of mine). How any other bits of knowledge had space in my brain, I’ll never know.

I know I don’t NEED to continue to remember those seemingly small parts of our life 2 years ago, but those small parts were huge to us.

In a couple months, we will officially have had Quinlan gone from our lives for just as long as he was in our lives. And that scares me. He will always be a part of us no matter what amount of time goes by, but knowing each day is getting further and further away from the last time he was with us, sucks. Those 2 years, 5 months, and 1 day we had with the amazing superhero that he was, were by far some of the hardest, yet sweetest times of our lives. I want to remember every. single. second.

And for those reasons, something as silly as not being able to remember all the meds he took every day is making me sad. Another lovely stop on the mother grieving train.

💚Mama Bear