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?

đź’šMama 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.)

đź’šMama 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”.

đź’šMama 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).

đź’šMama Bear

Today’s the day for a little ode to Bumpa

Two years ago today we lost my grandfather. He was more than just a grandfather though, he was Bumpa. Someone I was lucky enough to have in my life for over 35 years. Someone who not only taught me how to drive, check my oil and keep a clean car (which I swear one day I will actually be able to do) but someone who I always knew was behind me 100%.

He was there for my drivers test when I was 16. He was helping me pick out my first car when I was 18. He was there watching as Bear got down on one knee when I got engaged, shared a dance with me at my wedding, and held my hand when I told my family I was pregnant.

We spent most Sunday’s with my grandparents growing up (and are still known to spend a Sunday afternoon in the living room of my grandmother’s house). Bumpa was known to be cleaning his car (he clearly had a thing for cleaning and cars), going for long walks, watching the Patriots (and doing lots of swearing if they weren’t playing as they should) or running around in the backyard with his grandchildren. If it was a hot, sunny day in the summer, you always knew where Bumpa was most likely to be found. As soon as you walked into the house, you could hear the announcers of the Red Sox game coming through the speakers of his small, portable, red radio propped up next to him on the deck while he laid on his lounge chair soaking up every bit of sun he possibly could. This was most likely after a morning of mowing perfectly straight lines into the yard on his ride on mower.

His hair was always perfectly combed. Pants (including jeans) had a perfect crease down the middle. And you would never find a dollar bill in his pocket that wasn’t also perfectly crisp (he had been known to iron his dollar bills as well).

Charming, handsome, kind, supportive, classy, and fun. There’s a reason my brother was named after him, and my father and Quinlan both have his name as their middle names. I like to think that the reason him and Quinlan were so connected is because they were both such kind souls. Quinlan always has a place on Bumpa’s lap, even when he could no longer fit. They adored each other. I can only imagine them continuing their connection wherever they are now, with nothing but laughter and hugs.

It’s beyond special to have a grandfather to grow up with, and even more special to know your child also got to have that, even if for too short of a time.

So, while this is a sad time, remembering the days leading up to his passing, which weren’t easy, it’s also another day to remember how lucky we all are for having had a husband, dad, uncle, Bumpa and G-Bumpa like him for as long as we did. And although it was not long enough, it’s filled with some unforgettable memories.

Your Lindsay May Bananas misses you, but don’t worry, I’ll eat some extra Oreos just for you! (And maybe I’ll even clean my car!)

đź’šMama 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.

đź’šMama Bear

Today’s the day for a journey of irony

You want to know what’s ironic? Getting pregnant was not an issue for us. We were married in September and pregnant in December. I was feeling nauseous and thought for sure I had the stomach bug that my husband had the week before. Until a friend of mine suggested I take a test just to be sure, pregnancy was not what I was expecting. It was something we were certainly hoping for, but not thinking about at that moment. One little test with one simple word “pregnant” and I knew my life was about to change (just how much it would change was still to come). At the time, a fertility clinic was the last place I thought I’d be visiting in the future. I got pregnant, awesome! When this baby is around 2/3 years old, we’ll try again and have another one. Boom. Done. Easy peasy.

Let me also make something clear because reading this back to myself, I’m actually wondering if I should even share that part of our journey. I’m not saying it to pat myself on the back. I’m also not saying it to piss anyone off. I know there are so many women out there who want nothing more than to have this non-issue and this is the last thing they’ll want to hear (keep reading, I swear). I’m saying this because the subject of women and fertility, women and pregnancy can be such a taboo subject. An outsider can assume what women go through to have a baby, but no one really knows exactly what each woman goes through in their own journey. And I am the perfect example.

You grow up thinking (or at least I did) “I’m going to get married around 25. I’ll have my first baby around 26/27. By the time I’m 30 I’ll have at least two kids, and then probably one or two after that, ya know, depending on how big of a house my husband and I have. I’ll be able to stay at home with the kids because that’s what my mom did, and what her mom did. It’ll be great.” A very “Leave It To Beaver” style life. The funny part is, this is somewhat how our marriage/pregnancy journey began (pushed back a few years). Engaged at 30, married at 31, baby at 32. I thought for sure by the time I was 35/36 we’d have another baby, because 40 is the new 30 so we’d be right on track. And then maybe we’d stop after two, but keep our options open because you never know, three kids could be a possibility.

Over the last couple years, and especially since having to go through the IVF process myself (cue the ironic part), I have met so many women whose journey to become a mom are not at all what they had “planned” (“planned” being in quotation marks because really, can you plan anything involving children? Family planning, birth plan, etc. Not in my book. Hence the reason for this post.) I’ve met women who have had to take the long and windy road, dealing with detours, traffic jams, pot holes and bumps along the way to get to the place they want to be more than anywhere else in the world…motherhood. Women who have had miscarriage after miscarriage, rounds and rounds of IVF, adopting eggs, purchasing sperm. Women who wanted a baby by themselves and made it happen. Others, like myself, who have gotten pregnant with no issues and then because of a health issue needed who needed fertility help to know for sure their future child would not also be affected, even though there is never a 100% guarantee. Wondering, hoping, and praying every day that the process will work because the pain you’ve already endured in your life, and in your child’s life, is something you can not bear to think about going through again. Getting stuck by needles day after day, hormonal outbursts daily, getting your damn period when you thought for sure this was going to be the month. Just a few of the disappointments and hardships that come with this process, whatever process it is you’re going through. A process you grew up thinking will just happen when you’re 27 years old. Easy peasy.

Bear and I can’t just have another baby. There can’t be an “I’m late, I wonder if I’m pregnant” moment. When people ask if we’ll have another baby, most of them don’t realize it’s not as simple as just having another baby. And that’s not their fault for not knowing. Unless you know our story, why would you know that in order to have another baby I’d have to go through another round of shots, waiting, thousands of dollars, more waiting, egg retrievals, transfers, ultrasounds, and prayers that it would all work in the first round because let’s be real, it’s expensive and mentally exhausting. And that’s where it’s so ironic, because if we were like “normal” couples, who didn’t carry around a rare genetic disease in our bodies, then we could answer that question with “maybe, we’ll see what happens”. Nope, there is no easy peasy for us. Not anymore. And no easy peasy for way too many couples.

I would never say not to ask couples why they haven’t had a baby after being married for years. Or asking when they’ll have another because their oldest is getting old and you don’t want them too far apart. Because babies and motherhood are such exciting topics to talk about and honestly, people are nosey and want to know (myself included). But to know that it’s not always as cut and dry as some people think or assume is something to consider. It doesn’t have to be a taboo subject, but it is reality for many.

So, while I do feel extremely lucky to have been able to carry both of my boys, having healthy pregnancies, and having a shorter IVF journey than others, I also know it’s not an easy road for many, many, many women out there. Be aware and try not to assume because you never know what their journey has been.

đź’šMama Bear

Today’s the day I made it to Wednesday

Happy Wednesday, all! Or, if you’re as lucky as me, your husband calls it “Hump Daaaay!” And if you’re name is Mike, you know he’s going to start it off with “Mike, Mike, Mike!” <insert eye roll>

Today, however, is more then just a “mid-week, woohoo we are one day closer to Friday” Wednesday. I am officially more then half way through my first week back to work after 14 weeks of maternity leave. Yes people, I have made it through and can see the light at the end of the tunnel.

I’ve been going back and forth on how I feel about going back to work. Not that it changes the fact that I have to go back, it just adds on more emotions. Because who doesn’t want to feel new emotions after having a child. I mean, it’s not like having a kid, period, doesn’t give you enough feelings. Or having lost a child doesn’t fulfill your “feelings” tank for life. Why not keep adding emotions, on top of emotions, on top of emotions. Well, because that is life. And more specifically, that is parent life.

So, back to these feelings. On one hand I obviously feel very lucky to have had 14 weeks off. That isn’t something that happens very often these days (and clearly needs to change). I was able to spend those exhausting first months at home snuggling with this new life we created. Spending many days in sweatpants and an oversized Patriots sweatshirt that ultimately ended up smelling like spit up, while trying to remember to pee became my new routine. Up 5 times a night? No problem, at least I can hibernate in the house and not care that my hair is in knots (not a cute top knot either, like a full on rats nest knot) and my teeth are not brushed. Just a sneak peek into maternity leave for those wondering. And also a reason why having maternity leave in general in this new motherhood world is so dang important. Would I say 14 weeks is “enough”? I can’t actually say how long is enough, but for me, it’s appreciated.

Continuing with the feelings of luck, our daycare situation would also fall under this category. We have an amazing village helping to make sure baby bear is well taken care of. People we have known for many years (one I can say that I’ve known her entire life) are the ones helping to take care of the little guy while Bear and I work. This definitely helps in transitioning from the maternity leave world to the working world. Add to the fortunate column.

Now for the “needless to say” column of not so fortunate feelings of returning to work:

Not getting to spend more time with your growing, ever changing baby every day. Having to use my brain and actually think about things other than changing diapers and making a bottle (I may still be working on this part. It has only been 3 days, give me some time). Hoping to not miss any “firsts” (words, steps, rolls, crawls – I need to stop before I start tearing up thinking about this part). And most importantly, the feeling of working mom guilt because being at work is a necessity. This time the guilt is felt a bit more. Now knowing first hand how precious every second is with your child, part of me wants to spend every second possible with baby bear. While the other part of me knows that would not be healthy for either of us. My sanity would turn the corner to insanity quite quickly. So for me, it’s going to be finding a balance. A balance of wanting to keep him wrapped up in a snuggle for the rest of my life, and also knowing he needs to see other faces and be the social (3 month old) little man he needs to be in this crazy world. How it’s going to go, I’m not too sure, check back with me in a couple years.

So, now to get through the next 30 years and I’ll be good. Retirement, here I come!

đź’šMama Bear

Today’s the day to admit

“I have to admit” something you say often, I’m sure. “I have to admit…I did not like that dress on her!” “I have to admit…I totally cried watching that commercial!” “I have to admit…I did not want to do that, but I’m so glad I did!”

Some “admits” are easier to admit than others. Some are judgmental. Some are embarrassing. Some give a sense of relief.

I have something to admit. It’s something I didn’t think I’d ever actually admit to myself. “Myself” being the hardest person to admit something to, if I want to be completely honest. You can say things to other people, and they’ll believe you, even if it’s not 100% the truth, they don’t know that. But to actually admit the truth to yourself, that’s when it gets tough. There’s no bs’ing yourself unfortunately.

This “admit” is not easy to come out with because I feel like I will judge myself. Yet at the same time it may feel almost freeing to finally be able to get it out there.

I have often said that what we went through with Quinlan “wasn’t easy, but you do what you have to do as a parent” which is true. But what I have to admit is this: what we went through with Quinlan was really f’ing hard.

There is it. It doesn’t sound like something so crazy to put out there that I’m worrying about judgement but for some reason it is. I’m sure for many of you it’s quite anti-climactic. You could be thinking “Yeah, parenting is hard, what’s your point?” which is 100% true no matter what you journey is with parenthood, it’s not easy. But this is different.

Maybe you thought I’d admit that I had plastic surgery or that I’m finally admitting to being some sort of super human (ha yeah right). But to admit that raising my own child was beyond hard, isn’t easy to have everyone reading this know. It may make me seem weak, or unprepared as a parent. It is so difficult to be a parent of a medically fragile child. It wasn’t just “not easy”, that’s sugar coating it. Yes, we did it because we had to and we would do anything and everything for Quinlan. But it was the hardest thing I’ve ever had to do in my life.

I don’t want this to come across as a “patting myself on the back because this was the journey we were given so I deserve praise” type of post. Not even a little bit. Every single parent out there deserves a pat on the back regardless of their journey. What I’m saying is that before becoming a mother to a medically fragile, special needs child, I will be honest and say I never really thought about what it must be like for those raising special needs children. I had never stepped foot in Children’s Hospital and saw all of the beautiful children who’s parents need that little extra boost to arrange for the extra doctors appointments, medications, therapists, and extra attention that comes with the role. Those parents who could really benefit from a few extra hours in the day to not only get their day to day stuff accomplished, but also the extras that their children need finalized before their day is over (only to have to repeat it again the next day, and the next, and so on). Not to mention the stares from strangers who see your child and give the inquisitive look of “what is wrong with him?” The feeling of wanting to scream because you yourself don’t know what is wrong with him, so how can you judge someone else for looking and wondering the same thing.

It’s f’ing hard.

To all of my friends and fellow special needs parents, those who have a few (or many) extra doctors appointments to go to, or therapy appointments to set up. Those who could really benefit from those extra hours in the day to make sure their child’s medications are prepared or the nursing schedule is finalized, I’m thinking of you, I appreciate you, and I’m still in awe of you.

It’s the hardest, yet most rewarding job there is and nothing will ever stop you from doing all you can for your child. But it’s ok to admit that it’s f’ing hard.

đź’šMama Bear

Today’s the day to celebrate…and that’s okay

I began writing this particular blog post one year ago today and was never able to publish it for whatever reason. Maybe at the time I didn’t feel like celebrating, understandably. Or maybe I had something else I wanted to get off of my chest. Either way, it’s something I wanted to post about today, on the two year anniversary of the celebration of life we had for Quinlan.

It’s something I know I’ve talked about it before but it was such a special day. People from every corner of our world were there, more than at our wedding. Friends, family, co-workers, friends of family, family of friends, doctors, therapists, nurses. Everyone came together to share in the celebration of the amazing, all too short, life of our little superhero.

I suppose it has been questioned by many: why would one, when your child passes away, want to have a celebration? Who would think that you’d be having a conversation with caterer’s and function halls, getting balloons and decorations a week after your child passed away? Who would know what music to play? Who would grab fun activities for all of the kids who will be running around? This all sounds more like a birthday party than a memorial for a toddler. Talk about abnormal. Shouldn’t we be contacting funeral parlors, arranging a burial plot, picking out a black dress to go with the black suit my husband would wear? Maybe it was the journey of the previous 2 years. Maybe it was the spirit of the happy little boy we wanted to memorialize. Or maybe it was the need to smile that lead us to celebrate instead of mourn for one afternoon on a sunny February day.

We had asked people not to wear black because it was a day to shine for everyone. We wanted bright colors, and even Superman logos to be worn if people had them. It was an exceptionally warm February day. I remember that part distinctly when needing to go out for air a few times and being so grateful that it wasn’t 20 degrees and snowing. Yes, it was a celebration but, damn, it was completely overwhelming. A memorial for a 2 year old typically isn’t something that is a joyous occasion, but we did our best to bring light to what can be very dark. You would think all of this is not okay to do. Or it SHOULDN’T be okay to do, and I wouldn’t blame you. But in our case, and I can only speak for our own personal situation, we felt that it was okay, and even more importantly, it was necessary. It was necessary to bring all of these people who supported us, helped us, and saved us in more ways than one together, not only to thank them, but to let them share in the memories of Quinlan.

So many pictures were shared, laughs were had, and tears were shed. It was exactly what we wanted.

I will admit one thing. In the midst of everything going on (aka grief, shock, anxiety, the loss of my son, just to name a few), I don’t think I was able to fully take in the exceptional experience of what was going on in that room on that day. If I could go back and relive it, I would. I would stand back and take it all in. The love, support, and hope we were given can only be experienced on a day like that.

So, to everyone who was there that day, we continue to thank you. We hope you were able to feel the same light that Bear and I felt on that day, a day we celebrated the life of our Super Q.

đź’šMama Bear