Today’s the day for friendships

One of my nephews FAVORITE songs is “With A Little Help From My Friends”. He will proudly sing “I get by with a little help from my friends”. (You will now all be singing that song for the rest of the day. You’re welcome!) I was thinking about the song the other day and realizing just how true it is. Where would I be today without my friends? I really couldn’t even begin to imagine.

There are those friends you’ve known for a long time that you catch up with on occasion. Those friends you’ve reconnected with on social media who you first met when you were practically a baby. New friends who have been brought into your life by others (your husband, child, co-workers, etc etc). And then there’s those friends who you can literally, to this day, say “remember that time 20 years ago when ______ did ______!” and we all know exactly what we’re talking about. That doesn’t happen often, yet I’m lucky enough to have a group who I can say that sentence to (filling in a million combinations of blanks) and we’ll all remember. All kinds of friends are so important and each bring something unique into my life. But this group really has changed my life in many ways. Throw in a child with a special situation and these friends become life savers.

I’m in the middle of reading a book called “The Girls from Ames” about a group of 11 girls who have grown up together in a small Iowa town, are now in their forties, and still have quite the friendship. They’ve gone through a lot but they have all remained close after forty years. So far, I’ve learned some interesting facts from the book. For example, it says that one study showed that close friendships help prolong women’s lives. So ladies, let’s start saving now, we can all be in the same nursing home with our rocking chairs lined up next to each other. I’ll bring the wine.

It also says that women who want to be healthier and more physically fit are better off having even one close friend then half-a-dozen grandchildren (hence the reason I don’t go to the gym). This just proves that not only is having a group of good friends good for your mind and sanity, it’s good for you physically as well. Research doesn’t lie!

It’s needless to say (although I’ve said it many times) that my friends have done more for me and my family during the last 3+ years then I could ever thank them for. They practically spent the entire 10 months in the hospital with us. Bringing baked goods for the nurses. Celebrating even the smallest milestones with us. Shedding many a tear with us. And most of all just being there, telling us how amazing we are doing, not being afraid to sit with Quinlan when he was paralyzed or had tubes and wires coming out of everywhere. They were even willing to learn how to suction his snot and drool (Too graphic? Sorry, but that’s a true friend to be comfortable with doing that!) They dropped everything on January 30, literally everything (they’re jobs, families, etc) to come be with us as soon as they could that day. It was not even a question. They have all just been there.

Being there for each other has been happening way before just 3 years ago. All of these girls were a part of my wedding. Helping to plan, set up, provide me with a beverage when necessary, try on many dresses, pick out my jewelry, provide a reading, and looking amazing while standing with me on that day.

All of us have known one of more of each other since elementary school (thick glasses, scrunchies, bus rides, and musical mornings with Mr. Pearl). Most of us went to the same middle school (whether you sat in the front of the cafeteria, or the back, we’re all sitting together now and that’s all the matters). And we all joined forces in high school (proms, football games, car rides, sleepovers, Billy Blanks, and maybe a crush or two). At one point or another more then one of us has worked together, lived together, and/or gone to college together. Really, we can’t get away from each other.

As the years have gone on, the friendships have gotten closer. We’re experiencing real life shit now and none of us have gone anywhere. There have been the “normal”: marriages, babies, break ups, buying houses, many fur babies, even moving out of the country for a year. These are the things you expect your friends to be there for. But the abnormal instances can cause anyone to run. But they didn’t. Who expects to have to be a crutch for a friend after losing their child. It’s not what anyone has signed up for, but they’re all doing it. Through good times and bad times, that’s what friends are for. (Just another song to have stuck in your head the rest of the day. Again, you’re welcome).

So, to anyone who is a friend, I’ve ever considered a friend, whether we still talk daily, only once in a while, or maybe just a “like” on social media, you’ve all been there for me in one way or another. And to those who know my good days, bad days, favorite desserts, or when I just need some good cheese and wine…I owe you.

They say that friends are the family we choose. It’s nice to know that there are those out there who aren’t blood related, they’re not stuck with me, yet they stick around anyway.

💚Mama Bear

Today’s the day for being thankful

So, yesterday I wrote a blog post that took me a long time to actually get through. There was a lot of tears shed while writing it. When it came time to post it this morning I couldn’t/didn’t want to. I’ve been going off of feelings a lot lately and it just didn’t feel right to post it today. So instead, today I’m making a list of all I’m thankful for (given the holiday week that it is).

Sometimes it isn’t easy to feel thankful but we are.

So in no particular order, here is my list of many things I’m thankful for this year and always:

  • Pumpkin everything (cliche but so true)
  • Receiving a phone call from the nephew saying “Auntie, will you come over?” (It’s a ‘yes’ every time!)
  • Puzzles
  • My friends…who I have known for almost 25 years (which is weird since we’re all only 21 yrs old…so odd)
  • Weekends away
  • Crazy family
  • The “pickle bite” of a McDonald’s cheeseburger
  • A husband who likes to cook
  • The Hamilton soundtrack
  • A sister who was willing to learn anything and everything medical related to help when Quinlan was home (and who introduced me to the Hamilton soundtrack)
  • Reading a good book
  • Knowing that there are others out there who understand what we have been through
  • Being able to reminisce about something that happened 20 years ago with a group who knows each other all too well
  • Still being able to go into the woods that I’ve been exploring for as long as I can remember…as long as I can see the barn I won’t get lost
  • Grilled cheese
  • Grammy Judy’s kitchen table (that still smells like Grammys house)
  • The smell of Thanksgiving
  • Christmas stockings
  • Macaroni pie
  • Nights sitting on the couch with Bear watching our shows
  • Sunday’s with the family
  • FaceTime/Facebook Messanger video/Skype
  • Growing families that start off as “step” or “in law” but have become great friends
  • Chill pills
  • Being able to talk to someone who is unbiased
  • Mani/pedi’s
  • Random nights involving fireball and 45’s
  • Memories of an amazing pregnancy
  • Understanding co-workers
  • A niece who can change everything with a smile
  • IVF w/PGD, giving us hope for another child who won’t have the Brat1 mutation
  • Beach days
  • Wine
  • Get togethers with new friends
  • Still being able to smile
  • Football
  • The feeling of knowing others miss Quinlan, too
  • Knowing no matter what, I always have someone I can turn to
  • Oreo’s
  • Target
  • Friends (Chandler, Monica, Joey, Phoebe, Rachel and Ross)
  • Making dinner and having it actually taste good
  • Bare feet
  • Meme’s bloody Mary’s
  • A short commute to work every day
  • The letter Q – and the little girls who recognized that letter before any others
  • Going to the salon (and even for the grey hair gene coming from both parents, which in turn “forces” me to HAVE to go every 4 weeks…thanks, Mom and Dad!)
  • Cheese…all the cheese
  • A brother who works to take bad guys off the street every day and a brother training in the National Guard
  • Tulips
  • Autumn
  • Being told you’re a good parent
  • Memories of driving home with Bumpa, counting the houses with Christmas lights
  • Pictures…so many pictures (and the amazing professional that takes them)
  • Having the strength to get out of bed
  • Falling asleep to the sound of rain
  • Libraries
  • Cupcakes
  • Being Bear’s wife
  • Being Quinlan’s mom

💚Mama Bear

Today’s the day for Holland

Welcome to Holland. Welcome to a world you never knew existed. Welcome to a place that will change your life forever.

“Welcome to Holland” is one of the most relatable writings I’ve read since being thrown into the world of being a parent of a child with a disability. It was introduced to me at a time when I didn’t know what my life was going to throw at me day to day. When pneumonia, breathing tubes, feeding tubes, seizures and ICU were a bigger part of our vocabulary then diapers, wipes, bottles, naps and rattles. It was a time when it was becoming very apparent that nothing about our life was “normal” and never would be again.

Quinlan was 3 months into his ICU stay when a special person, one of the many that had come into our life specifically because of Quinlan, introduced me to this poem. I remember thinking that the author, Emily Perl Kingsley, must be a mind reader. She has to be some sort of psychic who was able to get into my brain, find all the thoughts that were jumbled in there with no where to go, and put them on a piece of paper in a way that made more sense then I ever could have. A beautiful, realistic, relatable description for all of us in this unique situation. But also made it understandable for those who are not as familiar.

Instead of explaining what the poem is about, I’ll let you all read it. These are words I feel everyone should read. 

 Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The colliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plan lands. The stewardess comes in and says “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I dreamed of going to Italy.”

But there’s been a change in the flight plans. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It’s just a different place. It’s slower then Italy, less flashy then Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, that you may never be free to enjoy the very special, the very lovely things…about Holland.

Yes, we ended up in Holland. Holland is amazing. Fields of tulips, Rembrandts, canals, and wooden clogs. But there are many days that I dream about Italy. I would have no idea what it would be like in Italy. From the moment Quinlan was born, we knew we were on a very different trip that was not planned, and it certainly was not to Italy. 

So, while our trip to Holland did unfortunately end with more loss then we could ever have imagined, heartbreak, and a lifetime of grief, I could never say that I don’t feel appreciative and, in a way, lucky that we arrived in the land that we did. One of my closest friends got the opportunity to live in Holland for a year. While I never made the trip over myself, I was able to reap some benefits by the special gifts brought directly from the amazing country (stroopwafels, dutch cheese, clog slippers, and actual Dutch tulip bulbs – that I’m hoping grow to look like the ones from the fields…we’ll have to wait until the spring to see if that happens). Holland has been part of our lives in more ways then one. 

Maybe we’ll get that trip to Italy someday. We’ll get to share stories with everyone else who vacations amongst the gondolas and Michaelangelo David. I don’t regret our change in destination, but as Kingsley states, it’s a pain that will never, ever, ever, ever go away. 

Lucky for us, we had the most handsome, amazing Holland tour guide to show us the way.

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 💚Mama Bear

Today’s the day for updates

Well, today may be the day I just write. I have nothing specific on my mind (or maybe I have a lot on my mind) so let’s see where this goes.

Update from last week –  First of all, “It” wasn’t as scary as I thought. Who knew the movie was over 3 hours long though! I’ll admit, I really only watched about 1.5 hours of it, so maybe I just slept through the scary parts (or maybe I’m just a big baby and psyched myself up for a silly clown who kills people – at least I think that’s what the movie is about. Again, I slept through it. Oops!)

Update from a few weeks ago – The IVF w/PGD process has started. Well, kinda. We have done the initial blood work, etc. Turns out we are both fertile myrtle’s (Bear’s little guys scored an A++ according to the doctor. High five!) If only that was all that mattered we would be all set. However, the whole reason for the IVF is the PGD part (preimplantation genetic diagnosis, aka testing to ensure our baby will not have the Brat1 mutation, that Bear and I are both carriers of and that Quinlan had). We are still going through the insurance nonsense before actually starting the physical IVF w/PGD stuff (aka shots, retrievals, genetic testing of the embryo’s, transfers, etc etc). So, for the moment it is in a “stalled” status. I have such a love/hate relationship with insurance. I love them when they approve what they should, however, I hate when they deny another part causing the whole process to stop for the time being. So, in the meantime, I am becoming a familiar voice to my friends at the insurance company, and will continue to make sure they are getting all the necessary information to approve what we need. This Mama Bear is not backing down when it comes to having another little bear cub. Hopefully more on that in the near future.

Update from this past weekend – We spread Quinlan’s ashes. A little background on my family (which will make sense in regards to Quinlan’s ashes). My mom grew up in a small town not far from where we all live now (small, like, no traffic lights small). The house her and her four siblings grew up in (aka Grammy Judy’s house) had been in our family since the early 1900’s. And next door to Grammy Judy’s house is my great-grandparents house (aka Grammy Bette and Grampa Joe’s house, aka Grammy Judy’s parents). Both houses shared a dirt driveway, a large field, and were both surrounded by acres of woods that the Perkins kids all considered their playground for generations. Grammy Judy’s house was sold a few years ago after the passing of Grammy Judy, and then my grandfather Clyde. Luckily for our family, Grammy Bette and Grampa Joe’s house was purchased by a cousin and has remained in our family. Many acres of the woods behind the houses have since been donated to the town as preservation land and (hopefully) will remain untouched for years to come. Back in the 90’s our family started our own little cemetery of sorts (how creepy sounding) just inside the wooded area and since then there has been many o’ashes spread (no actual human bodies are known to have been buried there, I don’t think…). When Quinlan passed, I knew that’s where I wanted him to be, with the family in the woods. So that’s where we spread some of his ashes. It’s nice to have a place for anyone to go if they want to talk to him, sit with him, or just want to hang. The woods are one of the most relaxing, peaceful places on earth. I invite you all to inhale the wooded air, listen to the birds sing (one of Quinlan’s favorite sounds), and get yourself lost among the trees and you’ll know what I mean. There’s nothing like it.

I guess that’s all the updates for now. Bear brought home the makings for margaritas, so I’m now going to sit back and enjoy the CMA’s with a marg in hand. (And Bear is sitting here watching it with me. I may have even seen him tapping his foot along to the music! Who is this man and what did he do with my husband? Do I dare say he’s converting to the country music side? We shall see! <cue the eye roll>…he just told me “absolutely not but Brad Paisley and Carrie Underwood are hilarious together”. So you’re saying there’s a chance.)

💚Mama Bear

Today’s the day for tricks…or treats

Happy Halloween! Or just Halloween if you’re like me and didn’t dress up, didn’t hand out a single piece of candy or have any little ones to dress up. Quinlan was always such a good sport about whatever we put him in for a costume, and he always rocked whatever he was wearing!

Q’s 1st Halloween he was the cutest lobster you ever did see! (Please excuse the “Candy Corn” mom and “Nerd” dad. Clearly we were still very sleep deprived and GOOD costumes that year for ourselves were not on the top of our priority list).

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For his 2nd Halloween, he was a little gnome…because honestly, the only thing cuter then a gnome is a Quinlan gnome!

And then last year, he wanted to finally come out as his true identity:

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Yes, he was truly a real life Superman (although the obvious flip of the finger seems to indicate he wasn’t happy with his true identity being revealed. Sorry, Super Q! We all knew you were Superman a long time ago, way before the costume!)

So, those were past Halloweens. According to Bear, this years Halloween night will consist of “It”, yes the creepy movie that I have never seen because I was deathly afraid of clowns as a child and now my loving, lover of scary movies, husband really wants me to watch! So, yeah, this ought to go well!

Now back to reality.

A few weeks ago I received an invite in the mail to a conference at Boston Children’s Hospital called Keeping Connections. It’s an all day event for parents, and siblings, of those who have passed away that were patients at the hospital. It was this past weekend and it was a doozy! It started at 8:30am on Saturday, and of course I woke up with nervous belly (that butterflies in your stomach feeling because of the unknown). Well, I drove in, down the oh so familiar roads of Boston to the area that was home for so long. Driving down those roads I realized just how much I actually missed going to Children’s. How weird and perplexing is that. Somewhere that we experienced so much loss (the loss of knowing our child was “normal”, the loss of knowing our child was healthy, the loss of our child’s independence from machines), was a place that I missed. Well, that makes me sound crazy. Or so I thought.

When walking into the building, the first face I saw at the check-in was our social worker from the ICU, someone who I still keep in touch with and who has helped in this process so much. She immediately told me how happy she was that I decided to come. I went downstairs, got my name tag and went inside. I was one of the first there and found my green table (we were each assigned a color) and met the first of some pretty amazing people that day.

There was a lot of small group discussions and in my group there were 4 families. Everyone’s story was so different, yet we all nodded along to each other’s expressions of feelings and heartaches. While it is understandable that there would be a lot (like A LOT) of crying at an event like this, there was also a lot of laughter. What a bunch of weirdo’s we are talking about our children who are gone, and yet laughing. But I’m sorry, we have all gone through way too much to not laugh. And it felt so comforting to know that we were all feeling the same way.

I learned a lot at this conference. I experienced a lot of emotions. And I realized Bear and I really are not all that unique. What I mean by that is, there are way too many of us out there that have lost a child. And it doesn’t matter if your child is 10 days old or 10,000 days old, the loss of a child feels very much the same for everyone. And sometimes it takes being in a room full of people to realize that.

I also realized something at this conference, and over this weekend, that I haven’t been as cognizant of as much as I feel like I should. I sometimes forget that other people are mourning Quinlan’s loss, too. Obviously I know that he touched so many people and was such a big part of so many peoples lives. But sometimes I forget that each of our close family and friends, and even some who just know our story, are dealing with his loss along with us. They all do such an amazing job being there for us, that to think that they may be crying and getting angry about losing Quinlan in their lives isn’t something I think about as much as I should. So, I do want to say I’m sorry. I want to be there for people just as much as they are there for me. I learned that it can’t be easy to deal with us (and by “us” I mean parents who have lost their child). We had a lengthy discussion about how we just want to be treated like everyone else and have regular conversations, yet at the same time all we want to do is yell out “but my child is gone”, which then makes us not like everyone else. Honestly, I don’t know how you all deal with us, but you do and we are grateful. So, please know that we want to be there, we try to be there, but if there’s ever a moment that we can’t, just know that’s it’s not you. It’s the situation. Also know that I don’t want to be tip-toed around, so talk to me. Talk about Quinlan. And please, tell me that you are having a hard time with his loss, too. Because that is what we should all be there for.

So, now that more tears have been shed (thank goodness this is not a video blog), I think it’s time to find “It” (dreadfully) and maybe partake in some sort of Halloween tradition (and by that I mean eating candy!)

Oh, and every parent I spoke to at the conference all said they miss being at Children’s Hospital as well. Turns out I’m not THAT crazy!

💚Mama Bear

P.S. I got a new shirt and had to share! (Thanks, Fotter’s!)

Today’s the day for simplicity

When something happens in your life that changes everything, literally EVERYTHING, I feel like eventually you get to a point of wanting to reevaluate. Reevaluate not just your life, but feelings, hopes, things that make you upset or angry. Just reevaluate things. At least that’s how I’ve been lately. I don’t know if everyone does, but I can assume I’m not alone in feeling this.

I’m not talking about reevaluating myself, like changing my name and moving across the country or anything. But trying to figure out what is really important. Important enough to actually consider changing, and one word that keeps popping into my head as a way to start this reevaluation of life is simplicity.

I don’t think of myself as a complex person. I’m a pretty open book. I’ll tell my story to anyone. Not just my Quinlan story, but my life story. I wouldn’t say my family is too complex, even though we have some alcoholics, divorces, many with anxiety, depression, and, unfortunately, Quinlan not being the only one with medical issues. I’d say for the most part, we’re not too complicated. But if you’d like to know more, feel free to ask.

What I’ve really been trying to change, to reevaluate, are the things that can make life more simple. There’s something to be said for simplicity, whatever definition of simplicity works for you. There’s “simplicity: the quality or condition of being easy to understand or do”. That’s not my definition. I don’t need things to be easy to do. In fact, I’m not sure I’d know how to handle “easy”. I grew up with divorced parents, close family members who dealt with alcoholism, and not a whole lot of money in a town that was known for being pretty wealthy. I even had fake Birkenstocks…how did I survive?! <sarcasm> However, we were loved by many, lucky enough to spend overnights at the grandparents, had great friends who didn’t care where we lived, always had Christmas presents under the tree, and had pizza every Saturday night. I’d say we did ok with what we were given.

“Simplicity: the quality or condition of being plain or natural”. This is what I’m talking about. At this moment, there is a pot of chili simmering on the stove, Wheel of Fortune on the TV, Bear downstairs playing a video game while I write, my tush planted on the couch typing away on my lap top, and a blanket draped over my lap. This is becoming a typical night for us and I like it. Of course, this is not every night. Bear coaches two nights a week, I have therapy every couple weeks after work, and I can often be found at my brother and SIL’s house hanging out with my niece and nephew (although over there, I’m usually hanging out on their couch with a blanket as well). But this is becoming natural. Not having to make plans every night of the week. Not feeling like I need to be doing something all the time. I can sit and relax, read a book or listen to music. I’ve even taken up sewing (what?!) Maybe this is a way of preparing ourselves for (hopefully) bringing another little one into our world in the future, knowing routine is important in those times (although video games, reading, and sewing may once again become a thing of the past with a newborn). Or maybe it’s a way of slowing down and taking a breath. Something everyone needs to do every once in a while. Whatever the purpose, it feels right.

At the same time that I’m enjoying this simplicity, I obviously think of how it was before. It wasn’t uncommon to have something cooking on the stove and Wheel of Fortune on the TV (Jeopardy if it was 7:30), but there wasn’t much time to play video games, or write a blog. There was an amazing little boy that needed our full attention. And if you were home alone with him, it was nearly impossible to even go to the bathroom for fear of something happening that needed immediate attention. That’s not my definition of simplicity. There’s nothing more UNnatural than having to pee as fast as you possibly can with the door wide open so you could hear if any alarms went off. It was a different world, but it was our world. Anything but simple, yet amazing.

So while I sit here watching live TV (not dvr’d so I’m forced to, dare I say, watch commercials) and consider getting rid of cable all together (how much more simple could a world be than with no cable), I’m hoping this slowed pace of living can continue for us. Stopping to “smell the roses” (I’d prefer tulips but that’s for another blog) can only help all of us in this rushed, fast forwarded, hustle and bustle of life.

Now let’s all take a deep breath….IN…1…2…3…4….and OUT….1…2…3…4…

💚Mama Bear

Today’s the day for reading a new book (and crying)

Ok so I’ve been soooo emotional lately. And not in the obvious way of thinking about the last 3 years of my abnormal life, but because of TV shows and a book! First I watched Dancing With The Stars most memorable year episode…cried. Then that same night I watched This Is Us…shed a few tears. And now I just finished a new (to me) book, like JUST finished, as in the salt from the tears are still dried on my cheeks. It was recommended to me months ago but I was told it was too soon after Quinlan’s passing to read then (which I now most definitely agree with). However, after being told by a couple more people that it’s time, I was ready, so I read it (Whoosh!)

The book is called “The Shack”. If you’ve heard of it and want to read it/watch the movie then I will warn you that there are some things from the book discussed below, however, not enough to give anything away. I will say that I HIGHLY recommend this book to anyone who has lost someone, anyone who is the least bit spiritual, anyone who is looking for some sort of peace, or anyone who enjoys crying while reading. So, just about everyone. (I have not watched the movie yet, but have heard it’s just as good as the book. I will be watching soon!)

Disclaimer: I have never been a very religious person. I feel spiritual, I believe there is a higher power, but I have never been one to go to church consistently. Until Bear and I started dating, I never once prayed over a meal, and God was not something that was discussed very often at home. My friends and family are a beautiful mix of catholic, Christian, Episcopalian, Jewish and many others. Some go to church regularly, some used to, some never have. I will say that prayer has become a bigger part of my life over the last couple years, and faith is something I’m finding more important then I ever have before. Of course, this is all just how I feel and I know everyone is different. This is a judgment free blog.

Now, with all that being said, let’s talk about this book that is all about God, Jesus, and the Holy Spirit.

It’s amazing. It’s amazing yet it’s about death. And not just any death, but the murder of a young girl (this is revealed in the beginning of the book so it’s not giving anything away). The rest of the book is about the father having a spiritual weekend with God, Jesus and the Holy Spirit and coming to terms with all that has happened. I can’t tell you how many feelings, words, and experiences this father had that I found myself nodding along to.  I thought it would be harder to read then it was. It was actually quite comforting in a way I didn’t think possible, considering it’s about the loss of a child. But really, continue reading.

Mack, the father in the story, has many questions for God (who wouldn’t!). Many of the same questions I have. How could this happen? Why would you let this happen? What did I do wrong to deserve this for my child? There really aren’t any answers, none that I could explain in a blog, at least. But the way the book handled these questions brought peace to the horrible situation that is the death of a child (is that even possible?)

In the most emotional chapter (well, one of the few most emotional chapters), Mack was in a cavern when all of a sudden the walls disappeared and standing right before him was his daughter. She was playing by the lake with his other four children. She came close and although she couldn’t see him, she knew he was there, but he could see her. He longed for her. The feeling any parent who has lost a child has. That one more time to hug them and hold them. To memorize every inch of their face to keep in your memory forever. It was only in their dreams, that the other children would remember playing by a lake with their departed sister. How amazing would that be if every dream with your lost loved one, was an actually moment that they were having with you. You remember it only as a dream, but really it’s a gift. A gift of more time to be with your loved one, even if it’s just moments.

This book depicts that world to be a beautiful, colorful, place of peace. I can only hope that this is true. To know that Quinlan could be in a place of pure joy, with others who are reflecting nothing but positive energy and happiness is something I can only hope for. If the God, Jesus and Holy Spirit that are depicted in this book are even just a sliver of what spirituality in the afterlife is actually like, I have faith that Quinlan and all of our other friends and family members who have left us too soon are doing ok.

Needless to say, Mack changed as a result of this journey. He was an ordinary man who had a love/hate relationship with God, and an unfortunate family history. Living with what he called the “Great Sadness” after losing his daughter, he had many dark years, not unexpected. After finding peace and forgiveness through the lessons he learned that weekend, the “Great Sadness” had lifted. This is something I pray will happen in my life for everyone that I love, because I know there are many of us living with a “Great Sadness” at this very moment. By the end of the story, Mack was able to be emotional without being ashamed, as he once was. “Don’t ever discount the wonder of your tears. They can be healing waters and a stream of joy. Sometimes they are the best words the heart can speak”. I’m in love with this quote. Sometimes tears are all you need, whether they are sad tears or happy tears, they are healers.

I hope this did not come across as a book review (I dreaded book reports growing up!) But instead words about a story that has touched me as I hope it does for others. It’s made me open my eyes to ideas, dreams, and spiritual aspects that I had never thought of before. It’s given me a perspective that can help in some moments of doubt, anger, and sadness. But, with that being said, the world of grief still sucks and it’s still hard. It will never be easy. However, to have the thought that this colorful world is now where our loved ones are existing is a thought I can live with.

💚Mama Bear

Today’s the day for wondering

Every day I am so beyond proud to be Quinlan’s mom. I smile with joy knowing that he’s a part of me forever and he’s mine. But then there are days that I am completely heartbroken. The pride is still there but the pain takes over. I can’t lie and say I don’t wonder “Why me? Why us? Why Quinlan?”. But there has to be a reason, right? Is there always a reason?

Sometimes I wonder what would Quinlan have been like in 5 years, 10 years, 20 years. But then I think, and this might sound terrible, I’m not sure Quinlan was put on this earth to become an adult. That sounds so weird, and maybe not sounding how I meant it to sound, so before you call me an awful person, let me try to explain what I mean. Quinlan was so amazing at only 2.5 years old, that he would have been off the charts, ultra-amazing as an adult. He would have been king status and needed his own castle because of his amazingness. He taught so much to so many people, that he would have been qualified as a genius by the age of 10 for the amount of knowledge he’d give to the world (Could the world handle two Doogie Howser’s?). He was so beyond handsome that by 18 years old, he would have been TOO good looking, even for GQ. It just seems like maybe Quinlan gave us all so much in such a small amount of time because that was what his journey was meant for. (Or maybe it’s something I’m telling myself to get by.) I see other kids his age running around and talking, like the mini adults that they are, and get sad because Quinlan should be there running around with them. But then on the other hand, that wasn’t him. He couldn’t run. And then the guilt shows up and I feel like a horrible parent for thinking that. But I can’t. Because I truly believe that Quinlan was given to us not to do certain things, but to show us that there are amazing qualities in all of us no matter if you have a voice or the ability to run, or neither.

I look back now and it seems to hurt more then it did before to think about the times he was laying sedated in a hospital bed, or having seizures, or blood draws. How much pain was he in? He didn’t cry, his heart rate wasn’t always super high but how bad was he suffering? During that time I was in such a “go go go” state of mind. “What needs to be done?” “What will fix him?” “Let’s get him better fast”. I didn’t have time to really think about what was going on and see what was actually in front of me. Of course I saw the bandages, the probes, the tubes, but I didn’t actually SEE them like I do now thinking back (does that make sense?)  Looking back and seeing what I see now, I’m not sure how I didn’t lose it every minute of every day he was in the hospital. I suppose the reason is the defense mechanisms your body gives you to make it through those traumatic times. Because if not, I could not have been there for him as his mom.

And, of course, I think of the day Quinlan passed. That morning still feels unreal. The yelling, the beeping, the lights from the emergency vehicles. Going to the hospital knowing what words were about to come out of a doctors mouth to us. A surreal feeling if there ever is one. Yet through all of those horrifying, unreal, blurred moments, friends and family dropped everything to come be with us. Doctors and nurses called and came to check on us. Dare I say the day that Quinlan passed I felt more love then I thought possible. We never felt alone. And there are no words for that. Quinlan brought everyone together for us on that day. The day of his celebration of life was much of the same. Even more family and friends came to support us and support the amazing life of our little man. The love and support in that room was the most amazing gift anyone could have given us. Every single person who was in that room that day gave us something that we could never thank them enough for (here’s another THANK YOU for you all!)

So, we may continue to wonder why this happened to us. We will never know what Quinlan’s life would have been like in 5 years, 10 years, 20 years from now. I do know that one reason I’m still able to write about it, still get up in the morning, can still smile when thinking about Quinlan, is that we won’t have to wonder alone. Maybe there are reasons for everything that happen in our lives, maybe there aren’t. But I do know with everything that has happened, it has brought people together, it has created new friendships, and it has taught us to not sweat the small stuff. And for now, I’ll take that.

💚Mama Bear

 

 

 

 

Today’s the day of no regrets

So I’ve been thinking about regret. You hear people say, quite often in fact, that life is too short…blah blah blah. But guess what…it is! Death makes you think about all sorts of things. Am I working the right job? Am I working too much? Should I put more money aside to save for the future? Should I live in the moment and buy those crazy expensive shoes because they’re SO cute? Should I wait to have another baby? Should I travel more? Is that grudge really worth holding on to? (The list goes on).

In my opinion, it comes down to which of the options would we regret less in the future. Sounds a little “lesser of two evils” but that’s not necessarily what I mean, although sometimes it does come down to that. Bear and I had always said we would have another baby when Quinlan was around 3 yrs old. Well, throw a rare genetic mutation, vents, trachs, g-tubes, and seizures into the mix and you start to question some things. We had started talking about it and it was always something we wanted, a sibling for Quinlan. All of our medical family told us from the beginning that a sibling would be amazing for him. Kids with special needs thrive with other kids around. I hate to admit it, but it was a scary thought. What if we don’t have a nurse the day I go into labor? What if the baby is crying and Quinlan is desating? Would Bear and I ever get a date night again? It hurts to think about those questions now because unfortunately it’s another, less medical, world we’re living in. But, if things were different, which would I regret less in the future? Not having another baby, yet wondering what it would have been like, or having another baby and bringing more craziness (and love) into our home (PS – I would absolutely have regretted not trying to have another baby, just putting that out there).

There’s a lot that people can regret, but then it “wouldn’t make them the person they are today” if they didn’t go through with all of their regrettable actions. Isn’t that what people say? So is regret something we SHOULD have in life? Because it helps mold us? Regret for buying a white carpet then spilling red wine on it, sure, you can live with that regret. But I can’t think that living with regret actually helps make us who we are.

Looking back on what has happened in life, knowing what is happening in the present, I suppose you can wish that you did things different. But is that regret? If I had known what would happen on January 30, 2017, I would have spent every waking hour with Quinlan. I would have called in sick to work every day to absorb every moment. But if I say I regret not spending more time with him, I think I would be driven to insanity from guilt and sadness. Should I wish that we had kept Quinlan in the hospital for his entire life, knowing he could get on the spot care if he got sick or had a seizure? I can’t say I regret that because then we wouldn’t have had him home with us, for over a year, getting to wake up and see him every morning.

Now I’m going to be a hypocrite and say that there is one thing I do regret. I regret that it takes losing someone, to not want to live with anymore regret. We should all live a life of doing what makes us happy, and not living a life of what we think we “should” be doing (e.g., working too many hours a week, saving money for the future and depriving yourself of those shoes, waiting for the “right” time to take that vacation or have another baby). However, I’m the first to admit that it’s way easier said then done. Can we all cut back our work hours? No. Can we all go out and splurge on $100 shoes right now? Probably not. But maybe we could all learn from those whose lives were cut way too short. Perhaps we could all do something every once in a while that we wouldn’t have done before.

Will we ever really regret taking that vacation? I can’t imagine so.

💚Mama Bear

 

Today’s the day I write to you

Dear ____________ ,

I want to start by stating that there really are no words that can be said at a time like this that will change the way you are feeling. I am by NO means a “grief” expert (“grief”, another word I’m starting to despise, by the way, for no real reason other then I’m sick of it, sick of feeling it, and sick of knowing that it exists for wayyyyy too many of us who now have to live on this earth without the love of our lives), so you may read this and think “What is this girl talking about. This is not how I feel. She knows nothing.” And that’s totally fair, and I completely understand. Sometimes you don’t want to hear anything that’s going to “help” because it seems like nothing ever will.

However, what IS fair to say in all this is that it sucks. It’s unjust. It’s shitty. It blows. It’s heartbreaking, completely and utterly heartbreaking. You lost your person. You want to scream, yet never talk again. You want to hide in your bed, yet surround yourself with others. You may throw things (make sure they are soft things). You may hit things (again, make sure it’s something soft…couch cushions work great). You may swear, cry, yell, cry some more, yell some more, swear while yelling and crying, and then sit there wondering if you have any tears left. Yep, there they are. Crying resumes.

You’re going to wonder how you can go on without the person who means the most to you. You’re going to be sad, very, very sad. You will miss the person so much it literally hurts, an ache deep in your gut. There will likely be moments when you “forget” what has happened and a smile may appear across your face, or you’ll laugh at something funny that happened the other day…then realize, wait a minute, my person is gone. The smile is gone and you’re devastated.

There may be days when you feel like you should be crying but the tears just won’t come out. Instead you find yourself lost in an emptiness. You might be watching a tv show and the main character has a _____ (fill in the blank, mine would be “son”) and they’re so happy and healthy and ew. So, of course, you flip them off, then turn the tv off and go _____ (fill in the blank, mine would be “cry/clean/pour a glass of wine/yell” etc etc).

Now here’s the kicker, and don’t hate me for saying it, but, you will feel better again.

It doesn’t seem possible right now.

But it is.

A friend, who also lost her son, listens to me quite often explain every feeling I have (the happy and the sad) and continues to reassure me that these feelings are ok (and who knows better then someone who has ridden the same roller coaster of emotions). So I want to do that for you. These feelings are ok. All the crying, yelling, swearing, sadness, devastation, it’s all ok. But so are the smiles, laughs, and happy thoughts. Those are ok, too. The person you lost would NOT want you to never smile or laugh again. 

Another thing you may not like to hear right now is that the thing that  will help the most is going to be time. Dreaded time. I’m not saying it will make it easier. But it will help. You may notice you’ll eventually smile more and feel less guilty for it. You may start remembering the good times more often then remembering what happened on that stupid date on the calendar that forever changed your life. 

It might not be today, tomorrow or the next day, or maybe it will be tomorrow but then not again for 5 days, but things will change. 

We can all remind each other of this. But in the meantime, THIS SUCKS, I’m more then happy to say it with you.

But, it will get better. 

💚Mama Bear