Today’s the day I question my answers

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

In no particular order:

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

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

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

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

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

💚Mama Bear

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

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

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

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

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

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

💚Mama Bear

Today’s the day for cupid, roses and blah

Happy Valentine’s Day….blah blah blah. Am I the only one who’s not really into this holiday? Dare I say it sucks. I’m married to such a romantic, kind-hearted man. I got a valentine from the best niece and nephew ever. And there was chocolate on my desk from my overly sweet coworker. So why would today suck?

I woke up feeling sad. Which isn’t totally uncommon but not really a norm that happens every day for me. I did my normal morning routine, running late of course, then hopped in my car (forgetting I needed gas), stopped at the gas station then again, hopped in my car and headed to work. And cried. Just a sad cry. Not angry or grief stricken. Just sad.

Let me reiterate something first. I love my husband. This whole sad/sucky feeling has absolutely nothing to do with him. When I say he is one of the most romantic people out there, it’s the truth. He will do anything he can to surprise me. I’m not one who likes to be surprised, but he does it in a way that doesn’t make me want to kill him for doing it. Little surprises or big, he’s all about surprises. When I turned 30, he was going to “take me out to dinner”. He wanted to “stop by to say hi to a friend who was grabbing a drink at the local Elks function hall” (who does that?! I should have known at that point that something was fishy, but me being as oblivious as I can be, had no idea). Turns out it was (surprise surprise) a surprise party with all of our friends and family. Not only that, but he then proposed, in front of everybody. The man is always up for a good surprise! If I ever mention wanting something, even just in passing, he always remembers and at the next holiday, if not sooner, will have it for me. He puts so much thought into every gift he gives. Even if it’s just a card. He’s that guy standing in the card aisle reading every single card until he finds the perfect one for the occasion.

My favorite Valentine’s Day so far was 4 years ago. I was newly pregnant, in that early stage of feeling bloated and gross, and I felt like nothing fit properly. Our Valentine’s Day date consisted of going to the mall and him buying me my first pair of maternity pants. They were the most comfortable things I had ever owned, so he bought two. After buying pants that I probably didn’t even need to wear for a few weeks, but don’t ever disagree with a pregnant woman, we stopped at Popeye’s for dinner (gotta love those biscuits). It was the most perfect Valentine’s Day for a newly, hormonal, mama-to-be.

He truly is the ultimate valentine and I am really quite lucky that after 10 Valentine’s Days together, our 11th will most likely still consist of getting take out, watching a movie and being 100% content doing so.

So, needless to say, this sad/sucky feeling has to do with the other love of my life. I’m lucky enough to have two: the one I chose, and the one I created. The one I chose is here by my side, but the one I created is not. On this day when love is all around, hearts are everywhere, and the words “I love you” are floating through the air, the one person I really want to say it to isn’t here.

That’s what sucks.

I know I’m not the only one missing a loved one on a day like today (and all of the other 364 days of the year). My Bumpa’s birthday was yesterday, a day spent with family and making his favorite cake (attempt #2 this year of making a cake, not quite as good as the original, but still edible). Another loved one missed so much.

So today, I say we all have a couple extra pieces of chocolate, maybe a glass of wine, and if you want to watch anything but a sappy movie, feel free. Maybe stop by a Popeye’s for a really good biscuit.

And please, say “I love you”, give an extra long hug, and don’t take for granted your loved ones. Especially those loves of your life that you created. (As I’m typing these words, it is being reported that at least 15 people have been killed in a school shooting. Please don’t take these words lightly. Extra hugs and “I love you’s” are needed on a day like today.)

💚Mama Bear

Today’s the day you’re not alone

Round one of shots…done. First egg retrieval…done. Two weeks of shooting hormones into my belly turned pin cushion are over. And hopefully not many people noticed the emotional/hormonal/one minute I love you the next minute I hate you feelings I had been expressing. Apologies if you experienced that (Bear).

It was…interesting, and if I have to do it again, I will definitely know better what to expect. It is way more mental then I thought it would be. By this I don’t mean that I hated every minute of it, but when you think you have just one more day of injecting hormones, and then you end up having a few more days because your follicles just aren’t ripe enough, it does kinda get to you. It is by far not the worst thing I’ve ever experienced, I will put that out there. And yes, I would absolutely do it again if I have to. The shots hurt way less then I imagined. And the egg retrieval itself was definitely not as nerve wracking as I was anticipating (even as the nurse in the operating room was rubbing my forehead saying “Now, she’s a bit anxious”. I clearly don’t hide my anxiety very well). But I got through it. This new adventure is no where near over, many hurdles are still to come, be cleared (and to be tripped over) but my first round of stims and egg retrieval I can now say are done (bring on the wine).

Throughout this new IVF world we’ve joined, I’ve been able to meet some new mama’s who have gone through very similar IVF journeys. In fact, similar to immersing myself into the world o’antidepressants and anxiety meds, once I put out there that I would be going through IVF, women who also went/are going through IVF started coming out of the woodwork. Some I knew had gone through it, some I had no idea. But all offered nothing but support and assurance that while it will be tough, it will be worth it. Bring it on.

Now a PSA from MB (Mama Bear). I know we’re all individuals. We all go down very different paths in life. But something I have learned from all of the experiences over the last couple years, especially this new journey recently, is something that can be truly life changing and I wanted to put it out there for all of you. Hopefully you all already know this but it sometimes helps to hear it again. You are not alone. There is someone out there who is going through something very similar or even exact to what you are going through no matter what it is.

Someone who has heard of the Brat1 mutation because their son has it – found them. Someone whose child has spent month and months in the hospital, and in fact has stayed in the same bed space as our child at one point – know them. Someone who is literally giving themselves shots in their pin cushion of a belly the same exact night you are – vented to them. Someone who likes to drink wine while waiting (because there is a lot of waiting involved with IVF) – learned from them.

And that is just a handful of those I’ve met.

Most (but not all) of the time you have to put yourself out there to find that person, but they are there. For some, I know this can be the hardest part to do. Some don’t like having their life out there for everyone to know about, read about, talk about, especially something as personal as their children. I completely understand that. Lucky (or unlucky, depending on how much you enjoy reading all about my life) for all of you, I’m pretty much an open book. I’ve never been one to hide what I’m going through or experiencing, and as a result, I’ve found a pretty great support system. One that spans from from friends and family, to women I’ve never met but have seen the words they type online. Words that I understand more then I ever thought I would. Words that I’ve needed to hear at certain times and have helped me realize I am not alone either.

So to you all who have gone through something that you never thought you would, something you thought no one else would understand, or something you haven’t felt ok sharing with others…know that you will find someone, somehow who will understand.

It’s quite a crazy, messed up world but if we know that there are others out there just as crazy and messed up as us, it helps.

PS – Remember the bulbs I received straight from Holland? I had my first beauty of a tulip pop up this morning. I’m in love!

~ Tulips, and windmills, and Rembrandts ~

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💚Mama Bear

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