Today’s the day to retrain the brain

Oh hello. It’s been a while.

I have been all over the place (mentally, not physically, I can barely walk a block never mind actually travel anywhere). This pregnancy has been SO different then my first. I’m bigger, sorer (not a word), tireder (again not a word), and my brain just hasn’t been fully functioning (prego brain for the win). I come up with a thought to write about but then it just disappears once I go to actually put pen to paper (fingers to keyboard). And then once the thought disappears, my brain shuts down and you can most likely find me laying down and falling asleep. Add in hourly nausea the first few months, aches and pains the next few months, and now peeing every hour because this kid is a kicker/puncher/stretch Armstrong wannabe and that’s pretty much how this pregnancy has been going.

But…I wouldn’t change it for anything. We have been so lucky to have this little guy growing as he should and looking great. Not a whole lot longer now, and I can’t believe it’s gone by as fast as it has. (Now I’ve probably jinxed it and these last couple months will drag, ugh!)

Speaking of the next couple months, I’d like to just vent for a bit. While we are for sure the lucky ones who still have our house, we unfortunately are part of the large group in our area that are unlucky and have lost our gas due to the explosions in the Merrimack Valley last month. No heat, hot water, stove, or dryer. Now again, how lucky are we that we have a roof over our head, electricity to watch tv, cook (in our microwave, crock pot, and toaster), keep food in our fridge, and lights to turn on. I can’t say there aren’t others much worse off then we are right now, I do want to put that out there.

This whole situation, however, has got me thinking about a couple things. The usuals like “what if the baby comes while our gas is still out? What if the pipes freeze? etc, etc. But there is one big “what if” question that I really shouldn’t be thinking about right now but it’s me and it’s how my brain works, so it’s always going to be a question in my mind.

Here it is: how would we be dealing with this if Quinlan was still here?

To answer: I have no idea, we would have just done it. At least we have electricity so he would have had his ventilator, feeding tube set up, oxygen, and suction machine. That’s a plus. But for a child who had no control over his body temperature do to his diagnosis, staying in a house with no heat would have been a huge obstacle for us. Sure we always had heating blankets around, but it scares me to think what we would have done on the 40 degree nights. He would have gotten colder then normal, his body temperature could easily have gone down to 94/95 degrees (which had happened a few times), his heart rate would then dive down and it would have not been a fun experience for anyone.

I will say we have had the option of staying in a hotel, which we have been doing. However, the hotel is about 25 miles away, so for Bear and I it’s not the worst thing in the world for a hot shower and heat every day. But with Quinlan, we had nurses come take care of him while we went to work every day, would they have made the commute for us? If not, that’s more time off for me and Bear. Maybe lost wages. Who knows. Another obstacle.

I know many of you are probably saying “Why are you even thinking about this?” And really, I admit that I shouldn’t be. But being a mom of a special needs child, I don’t think the thoughts ever go away. The “what if’s” are always there. There are parents going through very similar situations right now, being displaced from their homes with medically fragile kids and what do they do? They do it, they make it work, but it’s a lot. Tragedies are happening all over. All I can do is think about those parents whose houses has been flooded or destroyed by a hurricane. Did they grab all of their child’s meds? Did they get out in time before their ventilators or oxygen machines floated away? There are so many questions they need to answer for themselves, I can’t help but think the questions for them as well. I don’t think there will ever be a situation where I don’t think about Quinlan and what would we have done.

For now, my brain is still hard wired to think like a special needs parent. I can only hope that I can retrain my brain to think otherwise in the future.

đź’šMama Bear

Today’s the day to accept grief

So, I had an interesting conversation the other day (yes, it was with a licensed professional, but it could have been with anyone I suppose). It was about grief and it got brought up in a way that I hadn’t really thought deep enough about over the last 1 year, 6 months, and 13 days.

“Grief – deep sorrow, especially that caused by someone’s death”.

Ok sure, yes, that is a basic definition of grief. There is so much more behind “grief” so I, of course, started googling definitions of grief.

“Grief is the conflicting feelings caused by the end of or change in the familiar pattern of behavior”.

This is getting closer to my idea of the overall general definition of grief. So many feelings. You’re sad, you’re angry, you’re frustrated, yet you’re relieved that your loved one is no longer suffering. Talk about conflicting emotions! Sadness and relief aren’t typically feelings you would hold under the same umbrella. Hence why grief is not easy, in more ways then one.

I will admit I have been feeling a bit more sad lately (which I know will never go away). Whether it’s different triggers. Or whether it’s because Quinlan’s little brother is becoming more and more real to me, and so is the fact that they will never meet. Maybe it’s the hormones. Maybe it’s the month we are in. Or quite possibly it’s all of the above. I know sadness is a large part of grief that will never go away, and in fact I don’t mind getting sad at all. In some ways it makes me feel closer to the whole situation.

“Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All of that unspent love gathers in the corners of your eyes, the lump in your throat, and in the hallow part of your chest. Grief is just love with no place to go”.

One of my favorite quotes about grief! It is more then true. And I think this is a great explanation of why I can say I actually enjoy being sad and crying about the grief I feel about losing Quinlan. As corny as it sounds, it’s the love being given and not having the actual person to receive it physically. It’s all the kisses and squeezes and hand holding that can no longer happen so it explodes out the eyes in tears, and bottles up as the lump in your throat. Grief is not something you would feel without first feeling the insurmountable love for the person. The crying is somewhat relieving.

So, now with all that being said, why is grief something that our culture really does not embrace? Someone is sad because they lost they’re loved one, they’ll get over it. Give it time. Move on. Oh, let’s talk about the new gadget coming out or the new show on Netflix that everyone is watching. Our society almost seems afraid of grief. Afraid of bringing up a loved one because they don’t want to upset anyone. But why? Celebrations are for new babies, and marriages, and celebrating another year of getting older. All things that absolutely should be celebrated. But shouldn’t a life be celebrated as well. We made it a point to specifically say “Please wear bright colors as this is a celebration of Quinlan’s life” when we had his memorial service.

Now let me also say that our situation may not be exactly like others. We had in the back of our minds that this day would be coming at some point, and we saw Quinlan go through things that no parent should ever see, so we may be in a different mindset. I don’t want it to seem like we wanted to celebrate his death. We wanted to celebrate his life. It did not take away from the grief at all, but it personally gave us some healing to have a celebration instead of a mourning.

Everyone deals with grief differently. But grief should not be something that is pushed to the side in this culture. It’s not scary. It’s real. In fact one of the biggest headlines lately is the orca whale who has been swimming while carrying her calf who passed away over two weeks ago. She couldn’t let go. Who would have thought that this story would resonate with so many mothers and fathers, grandmothers and grandfathers, aunt and uncles who have lost a little one in their life. The mother is going through her own grieving process and the other whales, her pod mates are letting her be. They’re giving her space and time. They’re not forcing her to move on, to let go. They are feeling for her, are sympathetic for her, are letting her do what she needs to do in this traumatic, sad, unimaginable time.

This is what all of us who are grieving need. We don’t all need to be left alone, yet at the same point we don’t all need to be comforted all the time. We just need to be what we’re going to be. But don’t be afraid of us. Don’t shy away from the grief. You may not understand it, but as a society we all need to accept it.

Until very recently I hadn’t thought about it like that. I didn’t see the overall world of grief and how people react to it. I saw how my husband, family, friends and I have been dealing with it but after talking about it, it’s true. Our society bottles it up and puts it out of reach. And some people don’t mind that, I suppose. They want it bottled up and put as far out of reach as possible. But to me, it’s a big part of my world now. It isn’t scary. It’s not my entire world. But it’s a part of my world that will now always be there.

Maybe the mother orca will show us all that grief exists all around, can be headline news, but it’s ok.

đź’šMama Bear

Today’s the day to give back and help a family worry a little less

It’s happening again! It’s time to raise money for one of the best causes around (in my biased opinion) to help families with a sick child have one less thing to worry about: parking passes! We had such an amazing response back in December (raising almost $2000 in just over a week!) that I wanted to do it again in honor of Quinlan’s birthday!

People may wonder what the significance of raising money for parking passes is. Aren’t there other things more important than parking passes when your child is in the ICU? The answer is: absolutely. And that is why we’re doing this. The average family spends 5-6 days in the ICU. Some less, many for more. My family spent over 100 days just in the ICU at Children’s Hospital with Quinlan. Parking is $10/day. In total we spent over $3000 just on parking when Quinlan was inpatient, and outpatient for any appointments we had (keep in mind valet is $15 which is what we did when we had appointments). Some may say “well, aren’t there foundations that help to pay for parking?”. And again I would say, yes. However, you need to fit into a very specific diagnosis to be considered for passes. By that I mean, an actual diagnosis. For us, and many others like us, we did not fit into a specific diagnosis. And even when he was diagnosed (9 months into his hospital stay), there was no foundation for the Brat1 mutation, just like there are no foundations for many of the over 7000 rare diseases and disorders that children can be diagnosed with. So, while $10/day may seem insignificant, to a parent who’s watching their child in pain, that $10 means one less thing to worry about.

Starting today, July 29, and going through to August 29 (does that date sound familiar to anyone?!) you can donate any denomination to go towards parking passes for the families in the ICU at Boston Children’s Hospital. My goal is to honor what would be Quinlan’s 4th birthday on August 29, by raising $4000. That’s 400 parking passes! 400 days that a parent does not have to worry about paying the $10/day to park. We are going to keep the donations open for one month to see if we can reach this goal. It’ll give us all something exciting to look forward to when otherwise it’s just another one of “those dates” on the calendar. I want another reason to celebrate August 29th this year. It will not only be the day I became a mom to the most courageous little boy, but also a day we can help families going through what my family and I went through, and for them to have one less thing to think about for at least a day.

I’ve included the link to a site set up for donations. Please understand that this is something so close to our hearts and means more then you all could know. So, here is a BIG thank you in advance!

https://www.gofundme.com/help-a-family-with-one-less-worry

Thank you again and please consider donating to help a family with one less worry!

đź’šMama Bear

Today’s the day for an announcement

So, I’ve kinda been lying for a bit. Yes, I’ve taken a little blog hiatus for the most part. Yes, we moved and boxes have been spread around the house, pictures are not hung up like I want them to be yet (pet peeve of mine), and I’ve been feeling a bit scatter brained lately. But I haven’t exactly been sharing the truth, the whole truth, and nothing but the truth.

As many of you may already know, the IVF worked! The science and technology we have surrounding us these days has made it possible for us to be expecting later this year!

I’M PREGNANT!

So, now you know why my brain has barely been able to put two words together, never mind a few paragraphs. Why the new place is not as put together as I would like it to be. And if you have spoken to me in the last couple months, why I may be bitchier/more emotional/wider in the midsection then I have been in the past.

This past week is the first time in 10 weeks (that’s over 3 months, people) that I have not been nauseous every. single. day. And while my husband keeps reminding me that this is what we want, and it is, it’s been tough.

I won’t go into the nitty gritty but let’s just say Quinlan was much nicer to me in the womb then this child has been. But, I wouldn’t change it for anything! All looks good and I’m moving forward (without as much nausea, finally! Thank the heavens above!)

Now with this new, very exciting, stage in our life, also comes new people, new emotions, and new aggravation’s (mainly from the hormones but nonetheless).

I have met some of the most amazing women through this journey. All with a different story to tell, but all with the same desire: to be a mom to a “healthy” baby. I put quotes around “healthy” because to me (and I know we all have different opinions about this), having a child who doesn’t have a trach is healthy. A child who doesn’t have seizures is healthy. A child who can sit on their own is healthy. A child who can get a cough or a cold and not need to have the doctor on speed dial in case a trip to the ER is needed is healthy. Of course I want nothing more then to have all of the above and more, but to have a child who can merely look at me and say “mama” would be the greatest gift I could ever imagine. And I think it’s safe to say after meeting so many moms, that I’m not the only mom out there who desires just that.

Along with the new found bump I’m so proudly showing these days, I’m also feeling the not-so-unexplained-all-over-emotions that usually come with the bump. I find myself not crying when I feel like I should be (i.e., the movie “Coco” which was amazing and filled with so much emotion, and yet I didn’t shed a tear. I’m pretty sure my sister cried enough for the both of us). I have had a couple of those moments where you maybe lash out at those around you, for no particular reason, but they’re there so they have to face the brunt of it (sorry, Bear!) and then feel guilty afterwards because it really was a hormonal outburst. Oops. And then, of course, the usual breakdowns that happen because 1) I’m pregnant, 2) pregnant with my second child who I have dreamed about for as long as I can remember. But 3) this second child will never know their older brother. And that’s where the most emotion comes in. It’s heartbreaking that I will never have a picture of my two children together. Or that picture that everyone gets in the hospital where the older sibling comes in and sits on the bed, then gets the new baby places in their arms. And that picture of the older sibling kissing your pregnant belly. Such a photo op moment that will never come with this pregnancy. I will instead know that my second born will always have their older brother looking down on them. They will carry on a part of him in their name. And they will ALWAYS be told about how amazing their older brother was (and how he has even changed medicine. Plus, they’ll be able to read about him in medical journals, not many people can say that!)

It’s not going to be easy. But I have to keep reminding myself that because something isn’t easy, it doesn’t mean it can’t have wonderful moments. We have had plenty over the last four years, and expecting many more to come (this, in turn, brings me to a whole other topic: how the hell do you raise a “normal” child? More to come on this later).

So, while in the hormonal outbursts I know I will have again and again over the next few months, if you could all just bear with me and know that I will most likely be apologizing momentarily. I’m growing a human here!

đź’šMama Bear

Today’s the day for talking

So, I’ve been on a little blog hiatus. It wasn’t intentional but we moved and it turned into the longest move in history. I should probably add that it wasn’t actually a long distance move (really it was a few miles) but it took weeks to actually get all of our crap out of the old place and into the new. We had a whole plan of “going through everything and purging. We’re going to become minimalists!” And while there was definitely purging involved (I finally threw away the candle from my 1999 high school prom. I’m Lindsay, and I’m a hoarder), it got to the point of “just throw it in the car, we’ll take care of it later” instead of “let’s do what’s right and just get rid of it”. That all took over 2 weeks of time. TOO long! But, we are finally all in and now the organizing/where the hell does this thing go phase (which inevitably will take another too long period of time, but hey, at least we’re moved!) begins.

Obviously what comes with the actual moving of boxes and crap when you move, also comes the new surroundings, the new people, and the new routine. We have already met some super friendly neighbors who have made the new surroundings/new people part of the move feel more comfortable. We know the area so that helps. We know the restaurants, stores, and schools in the area. Figured out our new commute to work, the quickest short cuts to avoid the lights and traffic. And obviously we’ve already got the local Dominos on speed dial. On the sunny days we’ve had, there have been kids riding their bikes, running around the street, there’s even a playground right down the road. Very similar to where I grew up, which is also adding to the comfort factor. Many of the new neighbors have come to introduce themselves, told us they will invite us over once we’re settled in, showed us who lives where, and let us know it’s a great street for kids.

Then the inevitable “Do you have kids?” question happens.

“We have a son but he passed away a little over a year ago.” Cue the “Oh, I’m so sorry” reaction that I’ve mentioned before. Now we are obviously getting more used to this question (although it’s never going to be a question I’m going to WANT to be asked) but Bear told me what he told a new neighbor the other day, and I’m most definitely going to be stealing his response for the future. He was telling me how one of our new neighbors asked if we had any children and he told him our situation. The neighbor gave the obligatory response, because honestly, what else is anyone supposed to say (me included when I find myself on the other side of the question/response of a parent telling you their child has passed away).

Bear’s response was “Thank you, but it’s ok, we like to talk about him!” Mind blown! I don’t know why this hasn’t been my answer every time! I may have said something similar in the past to someone who’s asked, but for some reason when he told me what he said, it made so much sense to me and here’s why.

I’ll be honest and say that I feel like people may be nervous to approach us or talk to us or know what to say after finding out about Quinlan. I don’t blame them! It will never NOT be an awkward situation to meet someone and ask what is typically a pretty “normal” question when meeting two married, 30-something year olds “Do you have kids?” You expect a simple “No, we don’t” or “We do. We have a crazy 2 and a half year old who keeps us on our toes!” But then upon finding out their only child has passed away, you feel nothing but awkward. Adding to that, what if you know/recognize someone from school, work, friend of a friend, etc. You know their child has passed away and you randomly see them out some day. Would you A) avoid them at all costs – because there are certain situations that this just might be me B) approach them but not know what to say and walk away dwelling on the fact that you may have said something that didn’t come out the way you planned and now feel horrible – again, this could absolutely be me or C) know exactly what to say to someone you know/recognize but haven’t seen since their child passed away, and have all the exact right words, not feel awkward at all because talking about that subject is totally “normal” and walk away feeling great about yourself – this would NEVER be me!

So, if people could know that we enjoy talking about Quinlan, maybe it would make it less awkward. I personally don’t believe you will ever have a situation like option C, but maybe something in between B and C would make it a little less uncomfortable for both of us. I don’t want people to feel awkward around me. I guess that is my biggest sentiment to put out there.

Bringing up Quinlan should not be bringing up his passing. It should be about his amazing life. His contribution to the medical world. His really soft hair, and his smile that spoke volumes.

So yes, I have a son. He was amazing. And let’s talk about him.

đź’šMama Bear

Today’s the day for all the Mother’s

Today’s that day. Another one of those days, I should say. There’s many. And like the others, I wasn’t sure how I would feel.

For some reason, the anticipation of this day was worse then it actually has been today, so far. I’ve learned that sometimes that will happen. And sometimes it’ll be worse after the fact, whatever “the fact” might be. So, like everything else, I just go with it.

A year ago this weekend we were celebrating the life of my grandfather who had passed away a month before. His memorial service was on Mother’s Day, and it being the first without Quinlan, I welcomed the distraction. This year I’m no longer in the shock period that I was deeply in last year at this time. I had such anxiety combined with PTSD of what had happened. In fact, the day after Mother’s Day last year was the first time I took an anti-anxiety med. Hence the “worse after the fact”.

So, this year I was just going with it. I told my husband that I wasn’t sure what I wanted to do today, something he’s used to hearing me say. In turn, we planned nothing and wanted to treat it like every other Sunday. Then on Friday night, I had one of my “moments” (what Bear and I call it when we break down, feel the feels, and allow ourselves to just be). I had ALL the feels. Sad, angry, f-this and f-that were flying around in my head. I was pissed and I was feeling sorry for myself. I started planning an “anti-mother’s day” for myself and anyone else who wanted to join. The tears were flowing and it felt good to let all out. I’ve met some moms who have lost their children and they said they cry every day. That’s never been me. I used to feel guilty if I didn’t cry every day at the begining. I’ve come to realize that crying isn’t the only way to grieve and it’s ok if I have a day when crying isn’t involved. But nights like Friday night do happen and it is a release and it’s necessary every once in a while. So, I go with it.

In the middle of my “moment” a friend, ironically, a nurse turned friend that we met through Quinlan, texted me to ask if I received anything in the mail. The one day I hadn’t checked the mail. So, of course I go to the front door and received a package from her. A package that made me stop for a minute and have happy tears because yes, I am a mom, and yes, I should be celebrated, damn it. I told her she caught me in the middle of a “feeling bad for myself” cry and because, not only are nurse’s ones who take care of your sick children, they are also social workers/therapists/friends, they know what to say. She reminded me that I am entitled to feel any way I want to feel this weekend. I miss Quinlan, the one who allows me to be able to celebrate Mother’s Day every year and it’s ok if I want to say f-this day.

So, that’s kinda where I am now. I’ve spent my Sunday like any other Sunday. I’m not necessarily “anti-mother’s day”, but I’m also not embracing it as much as I would be doing if the situation were different. Whether you’re a mom who’s lucky enough to have your children with you today to squeeze, you’re a mom who’s still working on bringing your babies into the world, a mom who’s memories and pictures are all you have left of your babies, a mom who’s currently growing a little one or a mom who’s mom isn’t here to wish you a happy Mother’s Day, we all deserve to be acknowledged. Even if just for a small moment of the day (and even if after the acknowledgement you throw out a “f-that” under your breath, that’s ok, too).

So for now, I am going to feel the feels, take in the moments, and try to remember whatever this journey is that I’m on, there is always a little something good that could come from a day like today. Even if it’s a good cry and a couple f-bombs.

đź’šMama Bear

Today’s the day to talk about Father Time

Time. Time after time. If I could turn back time. Sign of the times. Take your time.

We sing about it. Stress over it. Dwell on it. They say “time heals all wounds” (yeah right). We reminisce about “that time when”. We learn how to say “what time is it” in multiple languages. How many times a day do we say “time”. It’s a magazine. It’s in the headlines of newspapers and names of tv shows. It’s everywhere. Our lives revolve around it. Literally.

It’s a savior and an enemy.

As I sit and get a pedicure (a girl absolutely needs 45 min to get pampered every once in a while), I wish I could slow down time just a smidge to make this pampering last a while longer. And then, of course, on the opposite end of that, at a time when you’re waiting for results, waiting for a visitor, waiting for 4pm on a Friday you want time to speed up so you don’t have to wait longer then desired. How can the same thing bring so many different emotions? Something that has existed since the beginning of…time…bring happiness, relaxation, comfort, joy but also worry, anxiety, fear, and sadness.

Time is such a strange thing. It’s seconds, hours, days, weeks, months, and years. And when you’re dealing with grief, those measurements often times don’t matter. One second without your loved one can feel like one year. But at the same time, one year can sometimes feel like only one day.

I have an app on my phone that pulls your photos and any social media posts you have from that exact date one, two, three, etc years prior. I love opening the app and seeing what I was doing on that day in the past. Who I was with. Where I was. Recently it’s become more and more real that no pictures of Quinlan will ever come up again from one year ago (and inevitably, the future will continue to widen that timeline).  It doesn’t seem right in so many ways. It’ll take me a few seconds after not seeing a picture of Quinlan from one year ago and not think “oh weird, I didn’t take any pics of him a year ago today” (because let’s be real, most days for those 2 years 5 months and 1 day there was at least one picture taken of him). And then I realize it’s because one year ago, he wasn’t here. Damn time. There it goes flying by again. Cher got it right “If I could turn back time”.

Time when you have a child, nevermind a sick child, and throw in a medically fragile sick child is counted in more ways than one. How much time will it take to get to the hospital? How much time will this appointment take? And the dreaded, how much time do I have left with my son? We still have his schedule hanging up in our kitchen.”A Day In The Life Of Quinlan” is still the headline. It’s an hour by hour breakdown of what we needed to do for him. 8am – meds (4 to be exact), 11am – stop feeds, 2 pm – 4 more meds, 3pm – start feeds (just to give you a few hours of the day). I remember constantly looking at the clock and basing the time on what meds would need to be given next, how much time I had until his formula needed to be turned off or refilled. The time aspect of our abnormal life was huge. There are still days I look at the clock at 7:50pm and think to myself that in about 5 minutes I need to go get his two nebulizer treatments ready and fill his two syringes with Keppra and Trileptal. And then we would have a two-hour window that we could relax on the couch with him before having to do it again at 10pm. But that’s not our life anymore. That time has been shortened. Something that will undeniably happen with every chapter of our lives. Time gets shortened and time gets taken.

So, Father Time, while there are many issues I have with your creation, I would also like to thank you. For the moments at 2am when everyone else was asleep and I could sit for hours alone with Quinlan and soak up the time with him. For those times after work when the front door would open and Quinlan would stop for a split second, knowing that Bear was coming up the stairs. For the years of research, classes, and studying that scientists, doctors, nurses, and therapists spent making the time we had with Quinlan a little bit better than it could have been before. For all the time we continue to feel loved, supported, protected, and far from alone in our unique situation.

Now, is it time for wine yet?

đź’šMama Bear

Today’s the day to experience, I think

Sometimes I wonder if the past 3.5 years really did exist. Did we really just go through the birth AND the loss of our child? Of all places, did two of the best pediatric hospitals around really become our homes away from home? Did we actually join the club that no one wants to join?

Damn straight we did. (I think…it did happen right?)

These are actual thoughts that go through my mind every now and then. Starting with how the hell am I even old enough to be married, never mind have been pregnant and have a child! Aren’t I still an immature 20-something year old, leaving my house at 10pm to start my night, driving to Boston to spend way too much money on drinks and dancing (and maybe some sort of meat on a stick on the way out of the club)? I mean, I was able to sleep until noon the next day. And really my only responsibilities were to make sure I made it to work on time Monday morning and not forget to pay my cell phone bill. My good old flip phone. Those were the days. Those oh so long ago days.

I always saw women who were pregnant and could only imagine what that must be like. Such an amazing time in your life. You’re growing a human! Like an actual human with arms and legs and a head. Then you get pregnant and you can’t wait to actually be showing so you can flaunt it to the world that, yes, I’m going to be a mom. But then you get so big that you can’t wait until you no longer have this protrusion sticking out of your stomach. This alien life form that is poking and prodding your insides day and night. You want it out! Not just because you don’t know how much longer your ribs can take the kicking and punching, but you want to see this creature you are creating. Will it have your eyes, your husband’s nose? What color hair will he or she have? All the questions. Oh but wait, the only way that this alien life form is going to get out of you is to go through….labor! It’s intense and painful, you’ll cry, maybe throw up, but it’s also the best day of your life.

I’ve really experienced that? Yup.

I’ve also experienced seeing my baby, who I didn’t even get a chance to look over and inspect from head to toe be placed in an incubator with IV’s and wires coming out of him. So helpless, taking his first ambulance ride at 24 hours old. Not knowing what they will find in the MRI on his teeny little head. Sleeping the first 3 full nights in the parents room of the NICU, after having just given birth. Oh my, the emotions.

On the other hand, I’ve lived through a 6 week old who actual was sleeping through the night. Crying only when hungry. Being the most patient, cuddly and loving little human you can imagine. With the cutest laugh and laughable yawn. He was damn near perfect.

And then I ask myself, did I really experience a 10 month hospital stay for my little human? Seeing what no parent should have to see. Making decisions no parent should have to make. Becoming so comfortable at the number one pediatric hospital in the country that I almost felt more at home there than at my actual house. You always hear about Boston Children’s Hospital and how amazing they are, but to actually be a part of that community, to know more than you actually thought possible about that hospital (to actually miss being there sometimes), it’s surreal.

These aren’t even thoughts I’m writing down just for the sake of creating a blog post. These are all legitimate thoughts that have been going over and over in my head since that world ended on January 30, 2017 and this different world began.

It’s sometimes hard to comprehend that those times were the basis of our life. Did we really live with nurses in our house a majority of the day? Did we really have to monitor our son’s oxygen levels, heart rate, and formula intake 24 hours a day? Did our outings with Quinlan really consist of packing up a suction machine, oxygen tank, ventilator and food pump (among many other things)? Referring back to a previous post, how the hell did we do it?

At the same time I am also pondering, why are we the ones who are so blessed to have been given this child to learn from, to become so in love with that it hurts this bad to not have him with us anymore? One that was so perfect in his own way. That is also something I sometimes can’t wrap my mind around. Why were we chosen to be the lucky ones to call Quinlan ours?

As you can tell, it truly does not seem real sometimes. Which sounds crazy since I talk about it so much. But I have had to occasionally sit back and take in the fact that for 2 years 5 months and 1 day, my life was so much different then it is today.

Today I can go to the store without thinking twice about who can stay with Quinlan if Bear isn’t home from work yet, or if my sister isn’t around to help. Today I can leave the living room and not have to make sure the volumes on the alarms are turned up in case his oxygen was dipping and his ventilator was alarming. Today I can go home to an empty, quiet house with no machines taking over the living room.

But I would experience it all again, one thousand times over. I don’t like the quiet anyways.

đź’šMama Bear

Today’s the day I question my answers

Ok, so let’s say we do have another baby (as you all know this is something we are very hopeful for). That baby will always have a big brother. We will always have 2 kids (god willing this IVF process works!). But it leads to so many questions that I know how to answer for myself, or at least I think I do. However, they all seem to carry many underlying thoughts and internal questions inside these questions that seem so simple. These questions aren’t ones I would have ever thought to ask myself without having lost our first child. Another “perk” to being in this shitty club.

In no particular order:

Question 1 – how would we sign Christmas cards from our family? This may seem like a silly question but it’s something I’ve recently thought about. Do we just write my name and my husbands name (and hopefully our future child’s name)? That doesn’t seem right. Quinlan is still part of our family and it’s a family Christmas card. I once heard a mom who lost her daughter in the Newtown shooting say that she would sign cards with her and her husbands name, her living children’s names, and then include “and the spirit of” her daughter that passed. Is that what we would do? Do we come up with some sort of an abbreviation to include after our names so those receiving the card know that Quinlan is always a part of our Christmas story? Or do we just write “Quinlan”? Something I think about. Something as simple as how to sign a Christmas card. I guess I’ll let you know come Christmas time.

Question 2 – how do I respond when people ask if I have any children? I will never say “no, I do not have any children” or after another baby “I have one child”. That response, to me, is cringeworthy. However, I know the response of “I have a son, but he passed away” comes with the facial expression, the apologies, the sadness, all from total strangers. Lately I’ve been finding myself replying with the above response, and then as quickly as possible say “but we are really excited to hopefully expand our family very soon”. Cue the sad, contorted facial expression turned jovial with an added “oh! That is exciting”. But not wanting to show TOO much of the obligatory pep that people have when talking about hope for a future baby, because they also now know my first born is no longer with us. And then if we do have another one, my response will still be “I have two children” but then knowing there will most likely be a follow up question of “Oh how old are they?” I will again have to get the “Oh I’m so sorry” face. How easy would it be to just say “We’re hoping to have one in the future”. Yes, it would be easier, but we’ve never been a family to take the easy way out.

Question 3 – don’t we want two more kids so we don’t have an “only child”? This one is a tough one. And it’s one I’ve kinda had a hard time with. My future child will never be an only child. Yet he or she would be raised as an only child. How do you define that? How do you raise a child by him or herself, but make sure they know and understand that Mom and Dad have two children? “Don’t you want two children to grow up together?” My answer to that is: Yes, more then anything in this entire world would I want my children to grow up together. But that will not happen. I will never have a picture of all of our children together. I will never know what it’s like to have my son holding his little brother or sister in his lap. I would do anything for that to happen. How lucky for a little boy or girl to grow up with Quinlan by their side. Of all those on the “shitty parts of losing a child” list, this is absolutely right at the top. But in spite of all that, I can’t say I want two children just so they can grow up with a sibling. If we are lucky enough to have one more, then yes, we will have two children. And they will always know they are not an only child. This question sounds so confusing, but at the same time, it’s obvious to me. Even though, it’s not an obvious scenario. I’m continuing to confuse myself.

What it ultimately comes down to, the biggest question of all, is how do we ensure that Quinlan is never forgotten? How do we make sure he is never “replaced” by another child? How can we engrave in all our hearts and minds that he is and will continue to be a huge part of our family? He is our first born, he will be the big brother, he will always be our son, even if he’s not here. I don’t want any of that to be forgotten.

In the meantime, I suppose questions will be asked, answers will be given, and cards will be signed.

đź’šMama Bear

Today’s the day no one wants to join this club

So, I have to say this. Along with every other mother, father, sibling, teacher, student, decent human being, I am so incredibly sad about the latest school shooting. Every school shooting makes us all sad, angry, scared, and the list goes on. But today I am sad, and I am angry and I need to vent.

I’m angry because 17 more lives were lost. 15 more children who are 18 years old or younger are gone. 17 more sets of parents will never, ever see their child again (yes, I understand some of those killed were older and not just students, but they are still someone’s child. Whether 2 or 42, it’s still the loss of your child for any parent regardless of their age). I am so sad for those parents, the newest members of this “club” Bear and I joined 392 days ago, (but who’s counting). There is no welcoming committee for this club because no one wants to join it. It sucks. “Hey, one day I’ll join that club. No, not the country club or the swim club, but that other club. You know, the one that only allows members to join whose hearts have been ripped out and the person you created, your blood, your life, you can never see again. Ever. No more holidays with them. No more family pictures with them. No more snuggles with them. Ya, I look forward to joining that club someday” said no one ever. These parents in Florida had no clue they would be a part of this particular club by the afternoon on that day in February. That day that will forever be known as “that day” every year for the rest of their lives. A day that is supposed to be about love turned into a day that showed such hate. Maybe some were planning to go to the swim club or golf club that afternoon. The club they actually want to be a part of. The one they paid for so they could socialize with friends. The club they joined that afternoon, though, it’s free. Monetarily. The cost of joining this club is in fact a payment of tears, anger, grief, yelling, swearing, and dark moments.

When we joined the club, we didn’t know we would be joining when we did. I always had a feeling there would be a chance the paperwork for us to join was in the works for the near future, even though I didn’t want to believe it. It doesn’t make it easier. It doesn’t change the dreaded membership you gain. It sucks.

The hardest part of now being a member of this club, for me, is this: I miss being a mom. I know I’m still a mom, nothing will ever change that. From the moment Quinlan was put in my arms, I’ve been a mom. But my reward in becoming a mom, the first born who gave me that crown to wear, the title I was so proud of is gone. It obviously does not make it any harder or easier then those that have other children (hopefully that’s the next club I join) it just makes it different. I want that crown back. And joining this stupid club has taken it from me.

Can you sense the anger? Knowing that 17 additional sets of parents now have to feel these feelings. They have to live this life that no parent should have to live. I feel for you, I cry for you, I want to hug you and I certainly will not welcome you to the club because no one wants this membership. It sucks.

đź’šMama Bear