Today‚Äôs 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.

ūüíöMama Bear

Today‚Äôs the day to celebrate…and that‚Äôs 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.

ūüíöMama Bear

Today‚Äôs the day for a thank you note to my first born

When you lose a child (or anyone close to you¬†for that matter) “those dates” on the calendar (that I’ve spoken about probably too many times) always bring up thoughts and emotions that maybe you hadn’t felt in a while. Or maybe feelings that are new to you on your personal grieving journey. Ones you never expected to have.

Last week was the two year anniversary of Quinlan’s passing (holy s***, how has it been two years? And how can it also feel like it’s been a lifetime? Questions that will never be answered). As it’s been for every anniversary/birthday so far, the lead up to the day¬†was more emotional and thought provoking then the actual day itself. I never know how I’m going to feel on the day and that gets me more anxious than anything. Will I break down? Will it just feel like any other day? Will I be angry? More sad than normal? Will it be all of the above? It leads me to wonder if there will ever be an anniversary or birthday that I will allow myself to just be and not worry about the potentials of the day. Perhaps that comes later on down the journey of grief. I’ll let you know. As for this years anniversary, we spent the day being¬†lazy, taking naps (aka feeling the emotional exhaustion that comes with anniversaries), getting some happy distractions from the new baby bear, and going out for sushi at our favorite local restaurant, because, why not. So, I’d say it was a bit of the “just another day” combined with a bit more anger and sadness than others. I still (and probably always will) find myself looking at the clock on these days and thinking “Two years ago at this time I was sitting in the hospital in complete shock”, “Two years ago at this time I was surrounded by friends and family, yet feeling like I was in a fog”. At the same time realizing that you¬†don’t need it to be an anniversary to have a day like that. Those feelings can and will¬†happen on any given day at any given time in the lovely world of grief.

This anniversary has obviously¬†brought on many feelings, but one has somewhat surprised me. It’s the¬†feeling of being thankful. Maybe it’s this renewed parent world I’m living in, but whatever it is, it’s making me feel¬†so incredibly thankful for Quinlan. Throughout the hospital stays, the heartaches, the fears and frustrations, along with everything else that comes with having a medically fragile child, and then of course¬†the loss of a child, there needs to be reminders that there can be much to be thankful for. Things that can easily get lost in the grief.

Here are just some of the things I want to thank Quinlan for:

Thank you for showing me a love that can exist without a single “I love you” ever being uttered.

Thank you for every finger squeeze, snuggle, and smirk given over 2 years 5 months and 1 day.

Thank you for all the pee fountains, poop explosions, and snot filled kisses that really made me experience the parent life.

Thank you for the strength you showed through your entire life.

Thank you for all of the incredible nurses, doctors, therapists, and social workers that came into our lives because of you.

Thank you for being exactly who you were and teaching everyone something more than they knew before meeting you.

Thank you for being the kindest soul who made it easy to surrounded you with love every minute of every day.

Thank you for choosing me as your mom.

Thank you for allowing me to see how strong I can be.

Thank you for having a hand in making your little brother look so much like you.

Thank you for showing me how amazing it is to have a son.

Thank you for the signs you give to show¬†us you’re¬†okay.

And most of all, thank you for being the one to make me a mom and knowing that fact will never change.

ūüíöMama Bear

Today’s the day for a new year

Happy New Year! Out with 2018 and in with 2019! For the first time in years, I can’t actually say that I’m glad to see the year end. Lots happened this year and for the first time in a while, it’s been mostly good happenings for our family.¬†It’s been nice bringing¬†something to look forward to¬†to those around us. Of course nothing will ever be good ALL the time, but even just SOME of the time is a win.

Here is a mini Bear family year in review:

January – started IVF. Lots of shots (not the good kind that come in a mini glass, unfortunately), meds, and hormones. The first anniversary of Q’s passing was the end of the month, but having the IVF to focus on was a helpful distraction. Hoping year two’s anniversary will also come and go the same way. It’s hard enough living with his loss every day, if I can focus on other things every January 30th I’d much rather do that. We’ll see how this year goes.

February Рcontinued the IVF process with my egg retrieval. Went as good as can be expected (minus the nerves of having anesthesia, plus hormones, plus having no idea if it will work). Needless to say, we got good results! The rest of February was spent waiting, and waiting, and waiting. IVF is one big waiting game!

March – the embryo transfer. Embryo got placed, and then more waiting.

April – I’m pregnant! It worked! Now to make sure all goes as planned and the pregnancy is healthy (more waiting). Oh and we decided to throw in a move to the mix. If I haven’t said it before, move when you’re newly pregnant because then you don’t have to lift a finger. Pregnant wife – 1, Husband – 0.

May/June/July – yup, definitely pregnant! The constant nausea/feeling of being hung-over/car sick¬†every day tells me so. But then, the baby started¬†kicking and it makes it so real. Holy moly, I’m growing another human (just make sure I was fed every hour and I was tolerable).

August – celebrated Q’s 4th birthday with lots of family and friends. For being another one of “those days” on the calendar, we really try to make it a positive one, with celebrations instead of sadness (crying is still allowed, of course). More balloons, cupcakes, and memories of Q with those who love him so much. This past August also brought lots of vacation time, hubby’s birthday, and a trip to Foxwoods (although we’re still not billionaires. Bummer).

September/October/November РI continued to expand (physically), grow more and more uncomfortable, get kicked from the inside, and feel this amazing little boy grow. Football, holidays, and more waiting ensued.

December – I had a baby! Another sweet boy with dark eyes, brown hair, and the most kissable face made his appearance. Following in his big brothers footsteps, he came about 2 weeks early and made his presence known. To say we were overwhelmed when we heard his cry for the first time is an understatement. To know that he didn’t have tight muscles or need an MRI at 24 hours old was a feeling I can’t describe. Being able to actually stay in one hospital for the allotted amount of time that we were supposed to, we fantastic. He is perfect. He looks so much like his big brother, but with his own personality and facial expressions. Many people¬†(including myself and my husband) have gone to call him “Quinlan”. The reaction, for me at least, isn’t sad or mad at how could you do that, but more of pride and happiness at doing something that “normal” siblings have happen to them.¬† My mom would call out all of our names before finally calling us by the right one.¬†That’s what you do with siblings, especially two brothers who look so similar to each other. Our new baby bear has big shoes to fill, but also his own path to create. We are just so¬†over the moon that he has chosen us as his parents and that he’s here to bring so many smiles to so many faces, and he doesn’t even know it yet.

So yes, it’s been quite a year. One that has the ebbs and flows of life. The waves of grief that will continue to come and go for the rest of our lives. But for now, I’m embracing the sleepless nights, the stinky diapers, and the cuddles that come with newborns. And if that’s what the rest of 2019 brings, I’ll gladly take it!

ūüíöMama Bear

Today‚Äôs 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.

ūüíöMama Bear

Today‚Äôs 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.

ūüíöMama 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!

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

ūüíöMama Bear

Today‚Äôs 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.

ūüíöMama 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.

ūüíöMama 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?

ūüíöMama Bear