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

Today’s the day for sunsets and mountains

Today I’m tired. You would think after having a week long vacation from work I’d be refreshed and recharged. I think I need a vacation from my vacation. I stayed overnight in Maine, NH, Vermont (and obviously Mass) all within 10 days. It was so nice to get away, but I’m so looking forward to a weekend home…with nothing planned except to watch the Patriots game with some friends and eat chili.

My vacation started two weeks ago with a day at the beach, relaxing. The next day was the celebration for Quinlan, which as I said before, was such a beautiful day celebrating him with family and friends. Wednesday and Thursday I spent in Maine with my brother and sister-in-law, niece and nephew. Lots of sun, sand, wine, maybe some Fireball and again relaxing. Spent the day at home Friday, then went up to Lake Winnipesauke for the night Saturday. It rained so what else would we do but a 1000 piece puzzle. Need I repeat, it was relaxing. Luckily for me it was a long weekend, with it being Labor day, so I got an extra day to do what? Relax. A 4-day work week broke up my traveling for a few days, then it was up to Vermont for a celebration for my grandfather. Lots of family time, admiring the amazing views that you can only find in northern New England, of course food, and…..relaxing.

Do you see a pattern here? If all I did for the last 2 weeks is relax then why am I tired?

My therapist asked me today how I was doing. A pretty typical question I get asked often, not just by my therapist but also from friends, family, co-workers, etc etc. I told her the answer that I’m actually feeling. I’m feeling better. Is that weird? Today is the 16th anniversary of 9/11, and I’m feeling better? People are being flooded out of their homes, being evacuated (including my family), living in extreme heat with no power…and I’m feeling better? Someone close to me just found out that someone very close to her has cancer, but I’m feeling better? I’m confusing myself. Is this why I’m so tired? Because my feelings aren’t matching up to how I “should” be feeling, my brain and my heart are battling each other?

Maybe I’m feeling better because I’m finally feeling hopeful. I was told today that I appear to be moving forward, and not looking backward…as much. This is how I want to feel. I’ve waited a long time to get to a point where I can feel this way, even half the time. Maybe this isn’t the right time to be feeling hopeful, and maybe the feeling won’t last, but as I’ve said before, I’m going with it because who knows how I’ll feel tomorrow.

I’m hopeful for Bear and I’s future as parents. I’m hopeful that in the midst of mother nature striking hard, people are coming together to help each other out. I’m hopeful that no matter what happens with the people you love, you can be there to support them in any way possible. (I’m hopeful that the Patriots will learn from their mistakes Thursday night). And I’m hopeful that the good will always outshine the bad.

While driving down one of the many dirt roads this weekend, in the boondocks of Vermont, we saw the most amazing sunset behind the mountains. It was pink and purple, and could not have been painted more perfect. My grandmother asked “How can there be so much bad in this world, with something as beautiful as that?” That’s a great question, considering at the same moment we were talking about how beautiful mother nature can be, Florida was getting pelted by Irma. Maybe this is how we have to consider all situations: when something is horrible in one place at one time, it’s near perfect in another. Because we know there will come a time again soon when Florida will be the beautiful Sunshine State we all know and love, with beaches as flawless as ever, and Vermont will be freezing with snow piled higher then cars.

Mother nature is weird, feelings are weird. They both appear in happy, beautiful ways, yet both can strike in harsh and hurtful ways. I suppose we all have to remember that times will change and even in the darkest of times, the pinks and purples will eventually appear, even if it’s just for a few brief moments.

💚Mama Bear

Today’s the day I strive for happiness

Thank you, thank you, thank you for all the happy birthday messages for Quinlan last week! It was such a nice day celebrating him. We released balloons with messages written on them and the clouds were the perfect background to see them soar high in the sky. It was obviously tough with him not being here with us physically, but I feel that he was definitely here with us in a special way. Thank you all for being a part of that!

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So, random, but I’ve been on a Grey’s Anatomy binge lately. I stopped watching a couple years ago when watching anything hospital related was too close to home, since the hospital had essentially become our home, and I was able to read the monitors probably better then the actors portraying the doctors on the show. (Also, spoiler alert, Dr. Derek Shepard died and that was too much…how could they kill McDreamy?! I mean after all, he survived a plane crash and being shot, then he dies in a car accident, typical Grey’s.) I’ve slowly been getting back into watching anything medical related and figured I’d see what was happening with the doctors at Grey Sloan Memorial Hospital.

While watching an episode about Meredith (Derek’s wife, for all you silly people who never watched Grey’s), it sorta hits her out of the blue that she is, in fact, a widow. A widow with three kids (because obviously she found out she was pregnant with their third child soon after Derek passed away. It wouldn’t be a great show without that story line). In the same moment she comes to terms with this, she also says “I’m happy, and I never thought I would be again. But I am, and that’s all I need”. Happy – feeling or showing pleasure or contentment. This got me thinking. Will I ever feel like that again? I want to. I definitely have moments of feeling happy and laughing, but then I remember what’s happened. Are you allowed to be happy when you’ve had such a huge loss in life? The point in our journey we’re at right now seems to be the “I’m feeling happy…but, crap, now I feel guilty for feeling happy”. I’m not sure if this will ever go away. Or maybe it will get worse the more that time goes on. I wonder if this is enough to count as “being happy”.

Sometimes I don’t even want to “be happy”. It doesn’t seem possible to be able to have that kind of feeling after seeing your child with tubes coming out of his little body, having electrodes glued to his head more times then you can count, having him poked and prodded and x-rayed his entire short life. How can any parent in their right mind feel anything remotely joyful after that? 

But then I remember the things that do bring me moments of happiness: reminiscing about Quinlan with family and friends, thinking about the amazing people who have been brought into our life because of Quinlan, knowing that Quinlan was my son who taught me something new every day, his smile, his curly hair and strong grip, and being able to share our story with whoever will listen.

So, yes. I do think I’m allowed to be happy. We’re all allowed to be happy. We’re allowed to laugh and smile. It doesn’t take away from the loss. It doesn’t take away from the love we have for Quinlan. And more importantly, I can’t imagine a boy with such a positive and happy demeanor about himself wanting us to feel any other way. I’m not going to stop crying, I’m not going to stop feeling sad, and I certainly won’t stop thinking about him every minute of every day. But I’m going to have moments of being happy and be ok with it, even if it’s followed by feelings of guilt, at least I know there’s still happiness in there somewhere. I may need to remind myself of all this on some days, but I’m allowed.

💚Mama Bear 

 

Today is Quinlan’s birthday!

 

August 29, 2017…Quinlan’s 3rd birthday, or what would have been his 3rd birthday. What’s the proper way to address it? I have no idea…but I know it’s a day I want to celebrate him. We’ll be releasing balloons later on this afternoon with some family and friends, and of course having cupcakes, because what’s a birthday without cupcakes! So far I’m feeling ok, remembering exactly where I was 3 years ago right now (epidural was in, life was good…for the moment, until the pushing…that part sucks! But anyways!). It was such a crazy exciting day. Holding this little baby for the first time, after feeling him for 9 months. There is nothing like it. I still can not believe it was 3 years ago. I wonder what things would be like if he was still here with us. He’d be starting preschool in a couple days and I’d be posting the obligatory “First Day of Pre-school” picture. But I can’t consider the “what ifs”, not today. Today is about balloons and cupcakes!

I wasn’t sure what I wanted to write about today, not knowing how I would feel. But I know I wanted to share some of my favorite moments with him (apologies if these same pictures get posted again in the future, but really, can you get enough pics of Quinlan? I don’t think so!)

So, if you have a free moment today, wish the little Superman a Happy Birthday! I have no doubt there’s a party going on up there with more celebrating then we could imagine, and hopefully Quinlan is experiencing his first sugar high from all the cake and ice cream he can eat.

Our first picture as a family of 3! Two weeks early, 6 lbs 12 oz, such a peanut.

His first birthday, celebrated at Franciscan Hospital, with his sidekick Grover.

One of his 3 birthday parties for his 2nd birthday, he’s very popular! Are you noticing a trend…”it’s my party and I’ll sleep if I want to”.

Quinlan and his best friend from day one, his cousin Tripp. 5 months apart and Q definitely looked up to T. #QT 

Me and some of my good friends from way back were all lucky enough to have boys, all pretty close in age, and Quinlan loved his visits with all of them, Jack, Harrison and Thomas!

And now some of my favorite pictures throughout the last couple years to make you smile!

Happy 3rd birthday, Super Q! We all love you so much!

💚Mama Bear

Today’s the day we sing

First off, I want to wish my hubby a happy birthday (a few days late…oopsie). I didn’t wish him a “happy birthday” on Facebook, which could be grounds for divorce for some these days…however…I did put lots of love, sweat, and tears into a home made sweet bread (that somehow I under baked for the second year in a row), but it’s his favorite…and it’s the thought and effort that counts, right (??). I’m also making a big deal about his birthday on this blog (a few sentences should suffice). So if you know Bear, and haven’t already, wish him a big Happy Birthday! He’s the greatest and absolutely deserves it! And, if you have a good sweet bread recipe, feel free to send him a loaf that is properly baked 🙂

I’ve been going back and forth this week on what to write about. I had a whole post written out about our IVF appointment we had on Friday (which went great! More to come on that later), but changed my mind, at least for this week. Then I was listening to my favorite song of the moment (you know that song that comes on the radio that you blast and belt out to the point that people look at you funny when you’re at red light) and realized there’s a few lines that stood out. Substitute a couple pronouns here and there and it makes me think of Quinlan. The song is appropriately called “Legends”.

The song is of course a love song, but not in a romantic kind of way. To me, it’s a love song for any kind relationship that makes you feel the ups and downs, the bittersweet moments, but knowing it’s all meant to be no matter the outcome. Knowing from day one that there was something going on with Quinlan that didn’t seem “normal”, never took away from us wanting to experience every little thing that comes with being a parent. Every moment we went through was bittersweet. I can’t necessarily sit here and say that we expected to lose Quinlan as soon as we did, but there was always a thought that nothing was promised. Every late night feeding, every time he peed all over whoever was changing him, every laugh we were lucky enough to hear from him for his first few months, every time he grabbed our hand and held on tight, they were all moments that were meant to be and we would never take them for granted, good or bad (aaaand here come the tears again – whoosh).

What everyone wondered we never question –  one of the most frequently asked questions to Bear and I was “how do you do it?”. Our answer was always “we just do it”. There was never a question of how or why. We met up with some of Quinlan’s nurses (turned friends) this weekend and they mentioned how amazing it was that Bear and I always did whatever we had to, to get Quinlan home. There was never another possible option for us. We never questioned it.

We were crazy Tragic and epic and so amazing – this has been our life for the last 3 years. We were crazy, we ARE crazy, crazy in love with the little man who stole the hearts of so many. “Tragic – causing or characterized by extreme distress or sorrow” (I don’t think this needs any explanation as related to our life). “Epic and so amazing” – how Quinlan made us feel every day of the 2 years 5 months and 1 day of his life. Yes, it was crazy and tragic and epic, but it was amazing.

We wrote our own story – this line in particular stays with me. We all write our own story. It would be so easy to give up, but I don’t want to. I want to write the story of Quinlan. Share his story for as many people to hear as possible, make him the legend he is.

While reading through the lyrics, I realized I could analyze pretty much every line, but I will spare you. I’ve included the lyrics below for your own analyzing enjoyment. It’s a great song, and yes it’s country (to the displeasure of many of my friends), but it’s good, I promise. Listen to it, love it, think of the relationships in your life that mean the most, and appreciate every moment of them.

Legends by Kelsea Ballerini

We were golden, we were fire, we were magic
Yeah, and they all knew our names all over town
We had it made in the middle of the madness
We were neon in a grey crowd
Yeah, we wrote our own story
Full of blood sweat and heartbeats
We didn’t do it for the fame or the glory
And but we went down in history

Yeah, we were legends
Loving you, baby, it was heaven
What everyone wondered, we’d never question
Close our eyes and took on the world together
Do you remember?
We were crazy
Tragic and epic and so amazing
I’ll always wear the crown that you gave me
We will always stay lost in forever
And they’ll remember
We were legends

Like we were written down in permanent marker
Not even the brightest sun could ever fade
Come whichever hell or high water
It was always me and you either way
Hey, we wrote our own story
Full of blood sweat and heartbeats
We didn’t do it for the fame or the glory
We just did it for you and me

And that’s why we were legends
Loving you, baby, it was heaven
What everyone wondered, we’d never question
Close our eyes and took on the world together
Do you remember?
We were crazy
Tragic and epic and so amazing
I’ll always wear the crown that you gave me
We will always stay lost in forever
And they’ll remember
We were legends

We were legends
Loving you, baby, it was heaven
What everyone wondered, we’d never question
Close our eyes and took on the world together
Do you remember, baby?
We were crazy
Tragic and epic and so amazing
I’ll always wear the crown that you gave me
We will always stay lost in forever
And they’ll remember
We were legends
We were, yeah, we were legends
Yeah, we wrote our own story 

💚Mama Bear

Today’s the day I ask questions

It’s funny that I’m writing a blog post about questions, considering a majority of my 10 year relationship with my husband he’s been telling me I ask too many questions. Who would have thought that asking questions would turn out to be beneficial in understanding our situation with Quinlan. You’re welcome, Bear!

I wanted to share some questions that I’ve had to ask in the last 3 years. Questions I never thought I would ever have to ask in my life. Some are good. Some are bad. Some we would not have understood if it wasn’t for our situation. Some make sense. Some don’t. This is a peek into “Lindsay’s World of Questions” from the last 3 years.

What is tense muscle tone?

Why is my 24 hour old son getting an MRI?

What do these machines do?

What are all these beeping sounds?

What did the MRI show?

When can my son leave the NICU?

Why is his body temperature so cold?

Why is his mouth blue?

Why is he having seizures?

Will the spinal tap hurt him?

Will the EEG hurt him?

Will these medications have any side effects?

Will he ever walk?

Will he ever talk?

How many more EEG’s will he need to have?

How do we use this feeding pump?

Will the breathing tube hurt him?

Why is he on a paralytic?

How many seizures did he have today?

How many more days will he need to be on this antibiotic?

When can we hold him again?

Will the trach be beneficial in the long run?

How often do I change his trach?

Why can’t he sit up?

Who’s the nurse working with him tonight?

Was he awake enough for therapy today?

How do his lungs sound today?

When can he come home?

How many hours of nursing will we get a week?

How do you suction?

Why is his heart rate so high?

Why is he only SATing at 80%?

Why is Quinlan on precautions?

How many liters of oxygen is he on?

What is Brat1?

What are the chances another child of ours will have the same genetic mutation?

Are we emotionally ready to have more children?

When will the ambulance be here to bring him home?

How do I set up all these machines in the house?

Who is the nurse (aka stranger) coming to stay at our house tonight so we can attempt to sleep?

Why did the nurse call out tonight?

How am I supposed to stay awake all night after working all day to make sure he doesn’t have a seizure or miss any of his medications?

Did he have to go on any oxygen today?

What is his PEEP set to now?

How are the granulmonas around his stoma looking?

Do I trust this person to change his trach in the case of an emergency?

How many ketones showed up on his test?

Will the keppra cause any issues with the trileptal which will cause issues with the topamax which could cause issue with the onfi which could cause issues with the Dilantin and could cause issues with the phenobarbital?

Who is the doctor on call when we bring him into the ER again?

Should I pack another overnight bag?

Can I take more time off of work while Quinlan is still in the hospital?

How do I say goodbye to him?

How do we go about donating his brain to research so this won’t happen to any other family?

Which anti-depression drug should I go on?

When should we start the IVF with PGD process?

What happened to our son?

Well, that was harder to write then I thought. I haven’t had to think about a majority of these questions for quite a while and it definitely put me back to how life used to be. There’s the “now” and the “how it used to be”. I’m still getting used to the “now”.

💚Mama Bear

 

 

 

Today’s the day I have support

Needless to say, when going through any kind of abnormal/unexpected experience in life (good or bad), support is huge. If you know me, you know that support from my friends and family is undeniable. My sister, for example, spent hours training in all the medical mumbo jumbo along side Bear and I to help when Quinlan came home, my dad has flown up from Florida numerous times just to be with us, my friends are there to take me away on a long weekend to NYC (a trip we’ve been wanting to take for years!) and are a calming voice during an anxiety attack, my brother (and then pregnant) sister-in-law allowed us and any visitors who were kind enough to stop by to take over their house for the week when Quinlan passed (and if you ever need comic relief, I will offer up my 3 year old nephew….he will make anyone smile!), my job has been beyond understanding on the days when I just can’t adult or just need to be home on my couch….text messages, cards, Facebook messages, food, prayers, homemade blankets, toys…the list goes on and on. This was not just after Quinlan passed, but also during the 2 and a half years of hospital stays and stress that comes with having a medically complex child.

The other types of support I’m talking about are not what I would have ever guessed to become so important and necessary during these times. Yet they have kept us afloat.

First I want to talk about the support from the medical world. Obviously you would have hope that the doctors, nurses, and therapists that are taking care of your child or loved one would be supportive, but not to the degree that we have experienced. It’s quite bittersweet to walk into any hospital, nevermind the greatest children’s hospital in the country (I’m going to say in the world, but that’s just my opinion) and have the front desk receptionist know you’re name and what floor Quinlan is on. Or to know the nurses so well that you can let them know when you’re on your way to the ER because he’s having dozens of seizures and find out who is working before even entering the hospital (and of course cross your fingers that at least one from the group of your favorites is on). One of my favorites was having the nurse practitioner from the neuro unit who you talk to regularly and knows you’re coming in, tell her husband, who is an ER nurse, to make sure we get VIP treatment. I will say there was a sense of comfort knowing all these people have your back and will do anything they can for you and your child, but does anyone really want their baby to be such a regular at the hospital that they are so well known. It’s bitter, yet sweet all mixed into one emotion.

We had nurses who worked at both Children’s Hospital and Franciscan Hospital follow us home when he was released from the hospital, picking up shifts whenever they could just to spend time with him. And if they weren’t working, there are a couple nurses who were known to come visit, just to see the little man that they had such a big part in helping to get home. His home nurses that became like family, his early intervention team who stretched him and read to him and helped him make pictures for Bear and I…they are all still a part of our lives and for all that, I am forever grateful.

Another huge support for me has been in my new friend, the “chill pill”. It took me a very long time to even consider taking any kind of medication (I’m the girl who doesn’t even drink caffeine, do you think I was really going to start taking an anxiety med!). Now, I can say it was one of the best decisions I’ve made. When Quinlan passed, I thought I was “ok”, I was getting by, going through the “steps of the grieving process”, as I’ve been told there are. Feeling “ok” was mostly due to the lovely step of grief called “shock”. I’m actually not sure if this is a step in the grieving process, but if it’s not, it should be. Sure I cried and got angry, but I was pretty numb. I didn’t realize just how numb until the shock factor started wearing off and the anxiety started kicking in. I’ve had anxiety in the past so I knew what it could be like, but it was always manageable. This was not.

After a couple months it started getting harder to get up and go to work. I spent many days working from home because I couldn’t stop crying. I couldn’t stay out in public too long without pacing, fidgeting, not being able to stand still. I didn’t think I minded talking about what was going on, but maybe deep down I was afraid of running into someone who would ask me a question and I’d break down. I’m not sure if that was exactly it, but it was something. On April 18, my grandfather passed away, the “John” of Quinlan John. Although it wasn’t out of the blue, it was another loss for my family and that sucked. The one thing that made me feel the slightest bit of comfort was knowing that Bumpa was now able to be with Quinlan. They had such an amazing connection that the thought of them being able to be together once again, did give my family a small sense of relief. Once again, I was “ok”. Until I wasn’t. Bumpa’s memorial service was on Mother’s Day, which was good for me. It was a distraction on my first Mother’s Day without Quinlan. It was a beautiful service, with lots of family and friends, a beautiful tribute to my amazing grandfather. The next day was hard. I had had moments at work before where I needed to get away from my desk, cry, go for a walk, but this day I was tired. It all hit me and I couldn’t adult anymore. I sat in my car and cried. That Friday was another day that adulting was not on my list of things to do that day. The anxiety was too much and it was affecting my daily life. That was the day I took medication for the first time. It was nice to have a doctor and a therapist who both listened to me when I told them I did not want to take medication unless I needed to, and they both understood when I needed to.

Since opening up about taking an antidepressant/anti-anxiety/PTSD medication, I’ve come to realize that not a lot of people talk about this subject. More people then I would have thought have told me that they are, or have been, on similar medication for all types of reasons. I completely respect and understand not wanting to talk about it, and I’m not saying everyone needs to, but to have been through what I’ve been through, damn it, I need the boosted support of serotonin in my life.

The third I’ll mention is my own support for myself. That might sound weird but one of the most important things I’ve been able to do is listen to myself and support what I’m feeling. If I wake up and feel good, go to work and have a good day, then I go with it. If I wake up, get ready for work and feel like I just can’t, then I don’t. It’s taken a while to understand that but I have to. I will break down (and have broken down…see above) if I don’t listen to myself. I’ve had many pamphlets and books and papers given to me over the last 6 months on grief and how to handle it, cope with it, live with it, etc. For some reason, one situation that stood out to me on one of those papers was something called a “grief burst”. You’re feeling ok and going on about your day when out of nowhere the grief hits you and you’re taken aback. The fact that this was an actual thing made me feel like I was grieving “normally” (still hate that word) because it says this is what’s going to happen by the professionals. And you know what it says to do when you have a grief burst….you go with it. So I do. It’s not easy, and I still need to be reminded by others that it’s ok to do. It’s necessary.

A few months back, I went to a support group for bereaved mothers. It was nice to be around other mother’s who felt what I was feeling. But I will say, it was harder then I thought after the fact. I left feeling like I couldn’t wait to go to the next monthly meeting with these amazing women. But the next day I crashed. I was the youngest mother there. It had only been 10 weeks since I lost Quinlan. There were mothers there who had lost their child over 10 years ago and they were still feeling how I was feeling. It was a bit overwhelming, a reality that this feeling will never go away and in 10 years, it will still be here. So at the time, that was not the right support for me. That’s not to say it will not help in the future, but again, I need to support myself and what’s right at the time.

Now, I can’t talk about support without at least mentioning Bear, the yin to my yang. When I’m having a hard day, he completely understands and steps up for me. And when he’s having a rough time, I’m there for him. It’s not easy and trust me when I say it’s not always roses and rainbows but we do pretty well balancing each other out when it comes to support.

While the amazing support for Bear, myself, my family and friends will not make the pain go away for any of us, it helps and sometimes that can be enough to get through the day. There are times when being there for others helps me as well. I like knowing that I can also help others during this craziness. So for anyone who has provided any kind of support to myself, Bear, our parents, grandparents, family, friends….our supporters, I thank you.

💚Mama Bear 

Today’s the day I start a blog 

So, I’m not quite sure what my plan is for this blog…how often I’ll blog, what I’ll blog about, how I’ll feel about this blog, how to edit a blog, and half the time how to spell “blog”….but I feel like I want to share the story of our little man and our continued journey.

To start off, please note: I’m not normal, I hate the word normal. My family isn’t normal, my husband certainly isn’t normal, and we somehow created the most perfect not normal Brat imaginable. (You’ll soon find out why the word Brat is valid, I promise, I’m not just calling my son a brat for no reason).

The best description I ever heard about Quinlan is that he taught people more about life in his own too short of a life then anyone you’ve ever met. And he did it all without ever having said a word. (If you Google him ‘Quinlan Weekes’ you’ll get some pretty cool info). He was a soul like no other…and pretty damn cute if I do say so myself. I miss him every minute of every day. (Great, here come the tears…this will happen now and then, just ignore, or join in…whichever).

A lot has happened in the last 3 years and 10 months. We got married. We got pregnant. We had a baby. We spent a good amount of time in the hospital with the little man (over 300 days to be exact). We came home and had nurses practically living with us, machines taking over our living room, doctors appointments and hospital visits up the wazoo…..but we also had the most amazing little boy who was OURS. And I wouldn’t change that for anything.

I should say that one thing I know I DO NOT want from this blog is all sadness and tears and whining. We’ve gone through a lot. We have had our share of ups and downs (and sideways and backwards)….but we’ve always had hope (so cheesy I know) but to be honest, it’s gotten me through some pretty horrible times. I have hope that because of Quinlan, no other child will have to endure hundreds of seizures an hour….I have hope that no other parents will have to see their child face what ours has….I have hope that nurses will get the praise they deserve to go through what they go through daily….and most importantly I have hope that another set of brown eyes just like Quinlan’s will be looking up at me again (hopefully sooner then later).

Now, back to the Brat thing….from the moment Quinlan was born, we knew something was going on in his little body. He was born with tense muscle tone. It was a bit tough changing his diaper, he needed lots of stretching (this is where the greatest group of our Early Intervention family comes into play). He didn’t track objects like a newborn would. He had microcephaly (a small head). And eventually we discovered he was having seizures. Fast forward to little over a year later (after respiratory issues, a feeding tube, a tracheostomy, and 10 months in the hospital), Quinlan was diagnosed with a very rare genetic disorder. We discovered he had a mutation on the Brat1 gene (which my husband, Bear, and I are both carriers of….more on that later in the “holy crap I’m really ready to be pregnant again?!” post…which will include IVF with PGD…OMG, WTF!). Mr. Q was the 7th known to be diagnosed, and at the time no other child with his severity of the disorder has made it to their 1st Birthday. Go Q!

A month or so later (November 2015), with much help from the social workers at the hospital and nurses that we didn’t know at the time, but soon became like family, we were able to bring him home.

We endured a few short hospital stays here and there but mostly he was home with us. Everyone loved visiting Quinlan. Sometimes he’d open his eyes for you, sometimes he wouldn’t. If you changed his diaper you were almost guaranteed to get peed on (that was his way of telling you he liked you). But you would always feel something so innocent, non judgmental and pure coming from him. He was amazing!

It’s been 6 months since I’ve been able to get a squeeze on the finger from him, or an excited smile. It’s hard, it’s sad, it’s frustrating and exhausting, it’s surreal, it’s different. Anyone that has lost a child knows….there is a day on the calendar that your life changed forever. We may have started the grieving process, in a way, from the moment we knew there was something going on with Quinlan, but nothing prepares you for never being able to see your child again. It hurts.

I’ve learned you have to put one foot in front of the other and move. It doesn’t matter where but you have to move. People say they don’t know how I do it, and to be honest, I have no fucking clue. Hope, maybe? I’m not sure.

So, here it is. My first attempt at a blog post. Just like everything else in life, let’s see where this takes me. I just hope I spelled “blog” right!

💚Mama Bear