Today’s the day for remembering…364 days later

WARNING: This post took me a while to actually get through. I started it a couple months ago and had to leave it for a while before finishing it up tonight. The tears are flowing. I’m not saying they will for you, but I thought it might be fair to throw out the warning just incase.

I think about the day Quinlan passed away a lot. I thought maybe getting it down on (figuratively speaking) paper, may give me a sense of peace in a way to see the emotions and descriptions in front of me. Or not. I dunno but I guess we’ll see.

I think about it on random days, not just anniversaries or holidays. I don’t think about it every day all day, but I think about it often. Not always in depth, but enough that it sometimes makes me stop what I’m doing and take a deep breath.

January 30, 2017 – I remember the night nurse yelling my name. He had done that a couple times before this day. We had even called 911 before. But this time was different. It was 5:30am, Bear had gotten up to use the bathroom and said he remembers hearing some of the alarms going off (which wasn’t an uncommon sound in our house at the time). But when the alarms are going off and the nurse is yelling “Lindsay, Lindsay!” you know something is wrong. I jumped out of bed and ran downstairs to see Quinlan unresponsive. I remember the nurse saying “Call 911”. Bear called 911 and I just remember yelling Quinlan’s name over and over. I was shaking him. I remember thinking “is this really it?” It felt like forever before the first responders came. They laid him on the living room floor and I couldn’t watch. I remember him looking so old for some reason. He looked older then my baby had ever looked before. Bear and I sat downstairs trying to figure out what was going on. Crying, pacing, shaking. My sister, who was most definitely a nurse in a previous life, was in the midst of it all. I kept yelling up to her asking if anything had changed and she would look down at us and shake her head. I remember saying I had to call someone. I didn’t know who but I needed to tell someone what was going on. I called my brother to come pick us up and drive us to the hospital because, how could we drive. I remember the paramedics carrying Quinlan down the stairs to put him in the ambulance and all I could think was that it was cold out, make sure he had the blanket on him so he wouldn’t get cold.

They took him away in the ambulance, we were left with the police and our nurse. Our poor nurse who was so traumatized and all he wanted to do was go home to his family, understandably. I remember trying to clean up the mess left in the living room but were told immediately to leave it incase a further investigation needed to take place. I remember sitting on our front step when my brother pulled up, giving me a hug, and taking us to the hospital. I remember texting my boss to say that something happened to Quinlan and I wouldn’t be in work today. I remember saying that I don’t want to go if the words that the doctor was inevitably going to say were actually going to come out of his mouth. We walked into the ER, told them who we were, and they immediately took us into the dreaded room off to the side. Bear, my sister, my brother and I were sitting there when the doctor came in and said the words that no parent should ever have to hear.  I remember screaming, crying, not knowing what to do, wanting to again call someone, wanting to throw up.

I called friends. Every one of them dropped everything and came to the hospital. I called nurses who we had grown close to. Our social worker. She came. I remember having my brother and sister call family members. I remember my brother telling us that detectives were going to come ask us some questions but that it is very routine in cases involving a child. I remember the doctor telling us that we can go in to see him but I wasn’t ready. I don’t remember how long we were at the hospital. But I remember people kept coming and it felt so nice to be surrounded by them. I remember finally being able to walk into the room to see him for the last time. I remember I kept telling him that’s he’s ok. We said a prayer, I asked if we could take some locks of his hair (he had the most amazing hair), and that was it. It wasn’t Quinlan in there. It was his shell and I didn’t feel the need to be in there any longer. I remember saying that I didn’t want to be at the hospital anymore and so I left. My brother drove me to his house and I remember saying something to the affect of “this sucks” and him telling me that nothing would ever be the same again. I remember needing to hear that.

We got to his house and people kept showing up. It was what we needed. I know I’ve said it a million times before but the amount of people that came to be with us that day was everything. Knowing how much every one of them loved Quinlan felt so comforting.

Doctors calling us. Nurses coming to visit us. Family and friends from all over bringing food and whatever else we needed. The rest of the day is somewhat a blur. I remember people reminding me to eat. I remember feeling so thirsty.

There was a lot of tears that day. But also A LOT of love. I remember I kept getting what I can only describe as signs throughout the next couple days. They seemed to be nods from above that he was in fact ok.

The days and weeks after that were not better, nor were they worse. They just were.

It’s been a year that I could never have imagined. A year that has changed my life forever. A year that has taught me almost as much as Quinlan did.

💚Mama Bear

Today’s the day I’m a contradiction

I need to be honest. There is one phrase that has been hitting a nerve with me lately. Not a bad nerve, or a “I want to punch you in the face” nerve. But a little twinge of a nerve. Let me first say that if you have ever said this to me (and/or Bear) PLEASE don’t think “oh crap that was me!”. I’m obviously not upset or hurt by any means (and you’ll find out a few paragraphs down why you should not feel even the least bit guilty for being one of those people). The phrase is…”I don’t know how you do it”.

This is something I know MANY people have heard before. Whether you’re a special needs parent, a parent in general, a single parent, you work two jobs, you’ve rescued a person from a burning building, whatever the case is, most of us have heard it. So why has it struck a nerve with me?

I brought it up in my last counseling session and we tried to figure out why it has been added to my “list of least favorite words/phrases”. And really there is no answer. No detailed, psychological answer at least. But we attempted to delve into the phrase itself and how I’ve responded to it in the past.

I’ve learned over the last couple years that I am apparently the type of person to completely immerse myself into whatever situation I am in at the moment (especially when it came to Quinlan and his medical needs, whatever they happened to be at the time). When we were in the hospital I was making sure I asked all the questions I had on my many lists of questions to the doctors, nurses, whoever I needed to get answers from. When Quinlan was home and sick, it was making sure I was on the phone with the doctors giving them all the details he or she needed to in order to get him better. When we were home and he wasn’t sick, it was making sure Bear, nurses, any visitors, and myself took all the necessary precautions to make sure he wouldn’t get sick. During any of those times when people said to me “I don’t know how you do it” I would say “I just do it”. At the time, I wasn’t thinking about how I was doing it. I was just moving through the motions of this crazy life.

Today when people say “I don’t know how you did it”, my gut reaction is to say (maybe in a bit louder tone then necessary) “What were our other options? Should we have left him in the hospital for others to take care of? Should we have not learned all that we did to take care of him? Should we have sat in the corner and cried and just given up?” It seems so obvious to me that it’s what needed to be done so it was done.

So, now here is the kicker. While talking to my counselor about this phrase, she asked me how I felt about doing everything I did for Quinlan last year, the year before, etc. And do you know what I said? Yea, I said it. My answer… “I don’t know how I did it”. And yes, right after the words came out I may have blushed or put my hand up to my mouth, something along those lines. Because there is it, I am one of THOSE PEOPLE! How can I get unnerved when other people say it to me, when I am saying it and thinking it myself?

I still feel like I have lived two lives in a way. A life that stopped just as quickly as it started. And this life I’m in now. Yet, I still question how this other life of mine was lived every day and how we managed to stay sane. How did we have someone in our house, sometimes a complete stranger, pretty close to 24 hours a day most days? How did we stay up all hours of the night when needed to make sure he was taken care of? How did we transport him, the ventilator, the suction machine, his oxygen tank, his feeding pump, his backpack with extra supplies, his kid cart, his meds, his formula, and at least two people with him, one driving and one in the back seat to suction him/start feeds/stop feeds/give meds/make sure his trach didn’t come out?

The only reason that I know for sure of how and why we did it, was because it was Quinlan and he was our world. Any parent knows that you do anything and everything for your child no matter the situation. If we had to spend weeks living in the hospital, we did it. If we had to drive to and from Boston every day for over 300 days, we did it. If knowing his future was not promised yet making the best of every day just loving him was what was needed, we did it.

So yes, it’s a little bit “ugh” being asked how we did it. Because the “why” of why we did it is so obvious. Even though I still don’t know myself, how we did it.

I really am a walking contradiction.

💚Mama Bear

Today’s the day for anew

Happy “goodbye to 2017, hello 2018” day! As much as I’m more then happy to kick 2017 out the door and welcome 2018 in with the hope of more positivity and good health, I can’t say I’m not feeling bittersweet about kicking 2017 to the curb. 2017 was the last time I held Quinlan in my arms. The last time I could kiss his cheeks. The year he was supposed to start preschool. The last time I could walk into my grandparents house and say “Hey Bump!”. The last time we could take a family picture with our entire family present. It was a year that took a lot from many people I love.

It should go without saying that I want nothing more than to have a better 2018. But what would make a “better” year for us. One without loss and sadness? One where we get rich, pay off debt, buy a house, and take a vacation? Or maybe a year that I feel more contentment, and less disappointment? Is any of that possible?

Maybe in this new world we live in, a “better” 2018 means that we know that loss is going to happen and yet we will get through it, someway, somehow. Loss is never easy, it’s not supposed to be easy. It’s a part of you that is gone, missing. You will never be the same. However, just knowing you will somehow get through the emotions caused by whatever has been taken or lost can help. Using the people and support system around you, can make things feel just a bit better in the long run. So, let’s all use each other and know we can all get through whatever is thrown at us.

Maybe a “better” 2018 means that I can feel sad. We can all feel sad. And we can know it’s okay. It seems that the pull of different emotions back and forth is what can cause more stress and anxiety than is necessary, at least in my new world. It helps to know (and to be reassured by others) that whatever emotion I’m feeling, is the right emotion at that time. No one should feel down on themselves for feeling sad during what should be a happy time, nor should anyone feel that a happy emotion doesn’t belong on a sad day. I, myself, continue to have multiple days in a row of feeling ok, or dare I say, I feel good. Then in the midst of these positive feelings, what seems out of no where (even though there is no “out of no where” after losing a child. Memories, feelings, emotions are everywhere, all the time), I break. Emotions galore. Ugly crying. There’s no holding back. But it’s okay, and it feels good. So, let’s all be sad, and be proud (and if you want to be happy, damn it, be happy).

After all the sadness and heartbreak brought to us by the lovely 2017, it’s not possible to say that nothing good came from last year. New babies have been brought into our lives (including my boo of all boo’s, my niece Bella). New pregnancies have been announced. Relationships have blossomed. And hope has become stronger. Maybe using all of the good, it will allow for more contentment to be able to ooze into our lives more naturally. Unfortunately I don’t think disappointment can go away completely, but maybe with a new way of thinking, more feelings of peace, knowing that the feelings we feel are real and we are all here for each other through the tough times, the disappointment will lessen in general.

So, now I guess I can say cheers to 2018. I don’t want to say to “new beginnings”. That makes me think something had to end in order to allow for the new beginning. Nothing for me has ended. Things are continuing, differently then before, harder then before, and not exactly expected, but they are continuing. So, instead of a cheers to new beginnings, I say cheers to new milestones in 2018! (And hopefully more babies! Oh, and if I do happen to get rich, pay off debt, buy a house, and take a vacation, I’d totally be okay  with that too!)

💚Mama Bear

Today’s the day for a Merry Christmas

I hope all is merry and/or bright for everyone today. Even if just for a moment. If nothing else, at least it was a white Christmas for many of us (if you’re into that sort of thing).

Today being one of “those” days on the calendar for those of us who have lost someone, knowing that we actually don’t know how we will feel on days like today, I have to say my heart is actually quite full, for a couple reasons. Bear and I had a talk/vent session last night before bed about the suckiness of days like today and we ended our convo telling ourselves that we will try to enjoy these moments and be hopeful for what is (hopefully) to come this next year. I will say, we had a good weekend overall. Lots of family, lots of food, and maybe a couple glasses of bubbles were enjoyed over the last couple days.

When I was younger, I remember hearing adults say that giving gifts is better then receiving. As a kid, I thought there was definitely nothing better then waking up Christmas morning to a full stocking, and presents galore under the tree to tear open. Well, now that I’m officially an adult (not sure what age that actually happens but apparently it’s happened), I TOTALLY get what they mean. I received a used sewing machine a few months ago, and decided I’d try my hand at making memory pillows for my family this year for Christmas. I used a few of my grandfather’s old shirts, and some blankets and shirts of Quinlan’s. For being very new to this whole sewing thing, I’m quite proud of how they all turned out. The best part of giving these gifts, I got tears! Sorry to throw you all under the bus, family, but when you make something, not knowing how it’s going to turn out and you get tears as a reaction, I give myself a pat on the back. So, that was a definite “pro” for today.

But, by far, the biggest “pro” for this weekend is something that I have many of you to thank for. Last week I mentioned giving back to a local hospital, like Boston Children’s Hospital, and purchasing parking passes for parents, as one less thing for them to worry about this time of year. Our expectations were exceeded. Like way far beyond what we thought. I am SO very excited to tell you all, that I was able to write a check to Boston Children’s Hospital’s ICU for $1910!! WHAT?! Bear and I drove into the hospital on Friday and very happily presented the check to the social worker for the ICU. Her mouth literally dropped. She was so thankful and excited, and said she was already thinking of all the families she would be handing the parking passes out to who would be “thrilled” by this donation. While we were there, we were able to say a quick hello to some of our friends from Children’s and they couldn’t believe we were able to raise that money, in ONE WEEK! So, to all of you who made a donation, I thank you, Children’s Hospital thanks you, and especially the parents thank you. The social worker let me know that she would be keeping a log of who she was able to help, and how many, etc. I will definitely be passing that info along to you all once I receive it. This may not be the last time I do something like this. So, if you are interested in helping in the future, I will also keep you all informed on that as well. You all made this week a lot brighter.

(Bear and I at our old home away from home)img_4199

So, there is my brief Christmas blog for the night. It’s been another roller coaster of emotions, but the positives seem to have been very bright. Now on to 2018.

Many wishes for a happy and healthy new year to you all!

💚Mama Bear

Today’s the day for giving back

How is it already the holiday season? Wasn’t I JUST at the beach on vacation? And now there’s snow on the ground and “Elf” on tv. Bring on the eggnog!

Obviously this time of year, many of us are thinking about gifts and what we’re getting everyone on our lists, who wants what, etc etc. It’s supposed to be “the most wonderful time of the year”. And for many it is. But for others it’s not. It’s time spent away from members of your family because one of you is in the hospital. It’s parents being pulled in different directions because one has to spend the day next to their sick child’s bed in the ICU. It’s thinking about your child who is no longer with you.

Is it weird that this year I’m actually more in the holiday spirit then I thought I would be? Stats show that if you decorate your house for the holidays, you will feel more positive all around (or at least that’s what I think I heard). So, this year I decorated early and maybe it has helped. I see Quinlan’s stocking hung every day. I see his baby’s first Christmas ornament hung on the tree. It reminds me that he is here, just in a different way then last year (and hopefully in a more peaceful place with lots of candy canes, presents, and laughter – especially while watching National Lampoon’s Christmas Vacation).

I always think about the families in the hospital, especially around this time of the year. With all of Quinlan’s trips to and from the hospital, we never had to spend a single Thanksgiving or Christmas away from home. And for that we have always been so thankful. Last year we were in the hospital a week or so before Christmas and Quinlan received a special visit from Santa, who brought him a new toy. He was also lucky enough to receive a homemade blanket from a group who began making blankets for the little ones at Children’s Hospital years ago. It’s so heartwarming to know that there are so many out there thinking about our little ones laying in hospital beds while others get to build gingerbread houses, decorate the tree, and just be kids.

There is a special group that I still think about often. The parents living in the ICU/NICU with their children. Whether for one day or one year, it is hard. There is little to no sleep involved. The “beds” in the ICU are not the most comfortable thing. And if both parents stay, one gets the reclining chair. While you’re “sleeping”, there are monitors beeping, nurses and doctors coming in and out throughout the night. And god forbid there is an emergency, all the lights come on, you’re heart is racing because you don’t know what has happened to your child, and you can only sit in the back of the room to stay out of the way. If you’re lucky, your child is ok and you’re able to “go back to sleep”. But really your heart is still racing, there’s no sleep in your near future, so you decide you need a walk. A walk through the hospital at 2am. Luckily Au Bon Pain is open 24 hours so maybe you’ll get some tea to try to calm down. You get some tea, sit next to the fish tank, and cry. But then it’s back to your home away from home, your “comfy” bed near your sick child. When you finally get up for the day, it’s either to go to work after having little to no sleep or to spend the day sitting with your child hoping to hear positive news during morning rounds. But first, back to Au Bon Pain for some breakfast to TRY to get some energy for all that the day will bring. Maybe it’s a x-ray, a MRI, an EEG. Possibly surgery. Either way you’re there with your child. And that night, you’ll do it all again, hopefully with no emergencies this time.

With all of this going on, parents still have to think about two things that are necessary, yet seem so far down on the list of priorities during a time like this. They are both essential for living in a hospital and, unfortunately, both cost money: eating and parking. And not just for you, but for any visitors wanting to support you and your family during a time when support is huge. For us, and others at Children’s, parking alone is $10/day. That is per car. If both parents are there and each have their car because one stays over, one has to work or one can only visit during the day, one only at night, that is $20/day. Bear and I spent approximately 200 days coming and going to Children’s Hospital (some nights staying over, some days driving in for a long visits, and some for outpatient appointments Quinlan had in Boston while he was home). That is a lot of money just on parking. We are so fortunate to have so many generous people in our lives that donated throughout this time to help with this cost. But it can still a burden for everyone.

This year my family and friends are putting together some money to purchase parking passes for the families in the ICU where Quinlan spent so much of his time. Paying for parking should be the last thing a parent needs to worry about, especially this time of year.

Please consider taking the time to think about these families this holiday season. And if you can, I encourage you to do something as small as purchasing a parking pass at your local hospital for a family who is currently spending the holidays with their child. Or a $5 gift card to the nearest coffee shop to the hospital. It will make a huge difference.

If you are local, and want to make a donation, I will be going into Boston next Friday 12/22 to purchase parking passes to hand directly to the social worker to distribute as needed to the families on 7South. I would be happy to take your donation and purchase one for you. Please feel free to message me or send me an email.

Something as simple as a parking pass or a coffee can put a smile on a parents face, even if just for a moment.

💚Mama Bear

Today’s the day for a brief IVF update

So, we received some exciting news this week (no, I’m not pregnant!). However, we FINALLY got the IVF with genetics testing approved! Yay! After getting denied, starting an appeal, then having the appeal denied, my amazing IVF doctor worked her magic and allowed the insurance company to realize they were not making the correct decision. Denial reversed! SO….we’re going to be officially starting the IVF process! Keep in mind, this process takes a while. A brief (estimated) timeline could go something like this:

  1. The creation of the probe (the test they will use to test the embryo’s for the mutation) – this can take anywhere from a couple weeks to a few months.
  2. Once the probe is complete, I will begin the shots to get the eggs nice and ripe – this will most likely take a few weeks.
  3. Then the retrieval of eggs…hopefully a whole lot o’eggs.
  4. The creation of the embryo’s.
  5. Embryo’s get watched for about a week.
  6. Embryo’s get sent to the lab for the genetic testing.
  7. All hope is that we have at least one “normal” embryo –  we should know after another couple weeks.
  8. Then the first attempt at a transfer happens.
  9. If all works out, I’m then pregnant (although the chances of it happening on the first try are not always guaranteed…repeat steps 8 and 9).

So, as you can see, between insurance and the steps involved, there’s a lot to this process. I knew it would be a lot, but until I was fully immersed in it, did I realize what a lot is. I’ve had my share of “WTF” moments (and plan to have many, many more), scared to death that it won’t work. We are so ready to bring another little cub into the world that the thought of it not happening is devastating. BUT, we’ve crossed the first hurdle of getting approved. Here’s to more hurdles being jumped over/crossed/knocked down, whatever you do to a hurdle, on our way to bringing a new little one into our lives.

AND this weekend is my birthday. Another year to add to my “advanced maternal age”…happy birthday to me!

💚Mama Bear

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