To My Sunshine on Preschool Eve.

I can remember long days with a fussy newborn, a wandering eighteen month old, a wild two year old, and curious three year old, who was FULL of wanderlust. I can also remember counting the days until your first day of preschool started. Now, it's quickly approaching and I still haven't figure out how to slow time down.

For the better part of four years, we've been kicking it together.  Twenty-four hours a day, seven days a week. I have become your partner in crime, the one your tell your stories to, your best friend. Watching you slump out of bed and pour yourself breakfast is just as awing as the first time that I heard you laugh.  Getting to watch the same episode of your favorite show for the one hundredth time is something I am no longer growing sick of. Cuddling up on the couch on rainy afternoons and listening to your big plans has become one of my favorite pastimes.

I often worry if I set you back by keeping you with me instead of sending you to a daycare a few days a week. But I knew no one would be able to love your sweet little mind like I can, as with any child.  So when your mimi looked me in the eye and said, "if you can find a way to stay at home with that little baby... that's the most important job you can ever have."  But now, what a different routine you're going to have! It's been all you all the time & I'm hoping that won't bite us in the butt!  I hope I've done well for the last four years, even on days that I was just "okay." Even as I am writing this, I know you are going to thrive and I have no reason to worry, but a mom is a mom is a mom.

No one has probably noticed, but I haven't whispered a word of excitement about preschool in weeks. I know that the very first day is when time will speed up and we will begin to be consumed by homework, practices, after-school clubs, book reports, research papers, presentations, school dances, proms, graduation, and suddenly you will be in college! All the while I'll still be trying to catch my breath from watching you walk into your first day of preschool.  It will seem long at times, but these next years will be the shortest years of my life, but hopefully most fun for you.

There is a ginormous ball in my chest mixed of fear, joy, and hope.  I fear for your exposure to a world that is not always kind and doesn't always care to hear your dinosaur stories.  That other children will be unkind to you, or that you will be unkind to others. I am so full of joy for everything you are going to learn.  Learning new things is so exciting and to finally be able to let you go and do that is absolutely wonderful!  And the hope. The hope is what gets me. I hope that you always greet people with the same kindness and smile that you wear around your home and family.  I hope that you always overcome obstacles like that first day you figured out how to climb the kitchen chair to get those chocolate chip cookies.  I hope that you stay silly and full of wonder and excitement.  I hope and pray that you know you can tell me how scary you thought preschool was the very first day. Or that you'll tell me how great school was and you can't wait to go back. I hope that the you in seventh grade can tell me that you have failed an algebra exam, and, my heavens, in your senior year you can come to me with excitement that you are being accepted to a university on the other side of the world. I hope that your eyes can hold the same excitement over little things, even though the little things might change into bigger things.

To quote the great author, Dr. Seuss, "you have brains in your head, and feet in your shoes.   You can steer yourself in any direction you choose."  I hope that you love school and learning as much as I did, and still do! You have a beautiful opportunity in each day, and I am so, so excited to watch you grow and learn.  I know your teachers are fabulous I already know you have gym and music class in your first day.  You are going to LOVE music class. Your big little heart loves to sing. Oh, I'm ready to burst with excitement.

But for now, I am that mom that is sobbing on the inside as her little boy takes his first step to being an independent thinker, a scholar, a doer of all the things, and a wonderfully kind and compassionate human being. And for now, your little heart and mind do not realize this, but YOU are the one that I tell MY stories to; YOU are MY sidekick. YOU, my sweet boy, have wiggled your way into being my best friend.  This was by far the best twenty four hours a day, seven days a week gig I could have ever dreamed of and I am the luckiest.


xoxo.

I'd Like You To Meet My New Friend CMS

It's kind of really annoying to have all of my posts start with "I don't know where to start with this one." I obviously know where I am starting & that is with saying "I don't know where I am starting."

This is interesting.  This is real.  This is good.  

For those of you who may not know, at the end of March I went for a complete genome sequencing. Samples were taken from me, my mother, my father.   I knew that the test would lead to things, but I just didn't know what.  

Three months had to go by.  It took three whole months to get that darn gene discovered. (And 33 years.) 

Then, on an ordinary Saturday morning (well not so ordinary, it was 4th of July weekend,) I got the email from my beloved Dr. Kelley. 

I've said this many times: There are moments that change your life. I can remember being totally annoyed that we were running late.  Lennon couldn't find his shoes.  Didn't want to brush his teeth with X toothbrush & I didn't know where Y brush was, wherever we were going, we needed to go.   Then it all just froze as I checked my email instead of looking for Lennon's shoes. 

I'm happy to tell you... 

RAPSN...

CMS...

Son's wedding today... 

All I read is I belong somewhere.  Holy freaking moly.  I belong. 

I didn't say a word.  Much like the reaction I had when I found out I was pregnant with Lennon, I went over to Dann in silence + shock,  and I waited for him to notice.  They were in the bathroom. "What's wrong?"  

I handed him the phone.

He's a really smart science guy.  I waited.  

"They found it, right?  This is good, right?" 

"Blue, this is amazing."

I am not sure, but I think we both might have been crying. 

Copy entire email. 

Send to family in a dreaded group message.  

My mom is the first one to answer: 

     On his son's wedding day. Such a sweet man.  

Ma... did you read the whole message? 

Yes.  

This is how my lolly has continued to address the discovery. She tells me it is because this isn't the first, second, or third time that she has heard this before.  I try to tell her that this is the real deal & that gene sequencing (especially what one I had) cannot be wrong.  She will not get her hopes up.  I suppose as a mom of a special needs child for over 33 years, I guess I wouldn't get excited.  But I'm not the mom. I'm the kid. I am so far beyond excited and hopeful, I could explode! 

My sister-in-law was in the drive-thru when she got the message. She immediately started to cry.  She's a science gal.  She knew this was good.  

What IS it? 

I have no damn clue.  Hell, if I'll ever understand all of it, but I'll do my best to explain it to you (and I'll link you to some useful information.) 

It starts out that the gene mutation is on the RAPSYN (RAPSN) gene.  This is causing a disease called Congenital Myasthenic Syndrome (CMS) and another issue that still isn't figured out yet, but he knows its mitochondrial. 

I'm going to try so hard to make sense (I'm already confused as I'm thinking of how to say it.) 

So, okay, RAPSN is a protein that binds good things.  (I'm already lost, ha.) My RAPSN is mutated (not working, or missing) from my skeletal muscles. Because they aren't working correctly, the acetylcholine receptor (AChR) basically fire the signal to get my muscles to work and the RAPSN isn't doing its job. 

I can diagram a sentence.  I can take a blank canvas and make it beautiful.  I cannot understand science. So on Friday, 7/28, I said, "so I am going to put it this way and I know it's probably not the same thing but I just need to understand it."

"Go ahead." Doctor said, laughing because he knew it was going to be good.

"So say these AChRs (I call them "Autumn Chmil" :) ) are magnets. And these little blue rapsn are the matching magnets.  Is it fair to say that the rapsn magnets aren't working right, so they aren't magnetic, so they aren't catching the AChRs?" 

"Yes.  That is it. Unlike your magnetic personality, of course." 

Could you imagine that this whole time we just had to get new magnets or fix the old ones?! 

There is a whole community of people like me.  Of people who pretend to tie their shoes so no one knows they need to rest.  Of people who have to lie down to put their hair in a bun.   Of people who can't brush their teeth without help.  There are people who are as equally dumbfounded as I am that they can do something every day for four days in a row, but then won't be able to do it for the next three days, but might have a run of eight good days.   Guys, I make sense somewhere. 

I found Facebook groups, support groups, what color the support ribbon is, what kind of object is used as the CMS "logo." I found out great stories and I found out not so great stories. In the middle of dinner, I'd ask Dann if X muscle was a skeletal muscle and I'd absorb his answer.  A lot of times I'd mumble, "makes sense now." It is absolutely insane. 

The heart is not a skeletal muscle.  I DO remember I asked Dann that almost as soon as he read the email.  For the last few years, I just kind of had it in the back of my mind that I'd die of a weak heart because I have a muscle weakness.  It was kind of common sense.  But, hot dog, my heart is just fine.  

The diaphragm though... well, all of those respiratory failures make perfect sense now. Now when my mom says, "you weren't strong enough to breathe," it makes perfect sense. 

The problems chewing. Getting dressed.  Buttoning buttons.  Scratching my damn face.  Keeping my eyes open + trying to stop my eye from crossing when I am too tired.    Keeping my neck up when I am unwell.  It all makes sense.  

So what's next? 

Treatments. There are medicines in the states that can & do help.  One is called Mestinon. From all that I've read and people that I've chatted to, it has been life changing. Honestly, I tear up when I think about it.  Sure, I'd love to be like you, but just to get back to the old me would be amazing.  Or imagine me getting to actually dance with Lennon when he gets married.  I simply get so hopeful it feels like my heart might burst.   Anyway, I have a severe mutation, not sure if I said that already.  But I still don't think it's as bad as what some people have.  Some people are on oxygen & breathing machines full time, and that's not me. I am grateful. 

There is a chance that this medicine might not work. There are other medicines, not approved by the FDA (shocker.) So I guess we will have to drive to Canada. The Botox idea is still 100% on the table. I'll be standing tall and for a long time.   I simply can't believe it. 

There might even be the option for gene therapy down the road, not too far.  I will be the perfect candidate. 

Dr. Kelley is eager to begin treatments. Obviously, I am more than ready.  He is hoping to get me into the University of Pennsylvania with one of the top neuromuscular doctors there.  But he also doesn't want to drag his heels any longer, I agree. There is a Doctor in Minnesota that he knows who is the top doctor for CMS. He just doesn't think it's necessary for me to venture out there.  Come football season, I reckon my whole family will deem it necessary. 

We will have to have a ginormous party in disguise of a wedding. I'm still stuck on that, only now it's the only thing that plays on my mind when I am going to sleep at night.  A nice, normal bride.  God. It's just a miracle.  

There is also the thirty-three-year history of me. CMS is different for everyone (the logo is a snowflake, PS.) What happens to me may not happen to the other people. That is why this is so tricky to diagnose in everyone.  The progress that science is making every day is literally changing my life.  CMS on the RAPSN gene is a relatively new discovery and it would not be found without genome studies.  Many people I am meeting have gone undiagnosed until much later in life. Some people don't make it at all because doctors don't know what they are dealing with. As I was saying, my doctor has a whole lifetime of history on me.  On what worked and didn't work.  If nothing else, I will help save someone's life.  The universe has almost always been kind to me, it feels good to give back. In fact, as we were sitting at the doctor's office, his colleague joined in and they got to chatting about another case.  After some research, it was discovered that the patient had a RAPSN issue too. I didn't understand the jargon, but as it sounded, it seemed like I significantly improved a baby's life and future lives just by handing over my history.  

So, I don't know.  I want to raise awareness.

I have shirts designed, hashtags created, fundraisers thought of.   It's a rare disease.  1 in 500,000 will be diagnosed. If there is more access to doctors and more diagnoses, there will be more people to learn from.  More people to learn from equals more data.  More data equals more evidence of effective treatments.   More effective treatments means less ICU rooms filled with teary-eyed friends and family watching their Wonder Woman rely on a ventilator for eleven days. So please help me spread the word.  

This CMS is hereditary. I really encourage you to read the link I will share. Dann has to get tested. If Dann comes back as being a carrier, that would mean any future children he and I would have, would be at high risk of also having CMS.  We have Lennon, who is all we ever needed.  Lennon is a carrier. I am sad for him.  I just hope that if he falls in love with a girl and wants to start a family, she is not a carrier.   This is a beautiful life I have, don't get me wrong, but the thought of my grandchildren having this is just as bothersome as when I thought Lennon could.  Lennon is perfect.  I am grateful. 

Here is the link:

http://www.congenitalmyasthenicsyndrome.info

Please read it.  It is part one of the mystery of autumn. 

It looks like we have quite the adventure ahead of us, but at least there is direction now. 

What do you think of #AutumnStrong?  Of course, the symbol had to be a snowflake and not an elephant or peace sign, ha. 

I'll close with this: 

"I don't know, I'm pretty optimistic," Autumn said as the appointment came to an end.

"Good. You should be!" Dr. Kelley said with a smile.   

Edge of Your Seat Kind of Story.

A running theme in most of my posts throughout all of my blogs is my hopelessly optimistic attitude. My meeting with Dr. Kelley was a long and informative and over-my-head most of the time. 

For those of you just tuning in: I have to tell you that Dr. Kelley is world known doctor, scientist, specialist, geneticist. He calls the shots in the medical department of my life.  He found my chart in CHOP when I was eight months old. My parents and doctors were at the end of their ropes when my mother got a call from a doctor asking if he could try to help. No one asked if they could help then.  Doctors were scared of my tiny little self (and I think some still are.) My mom welcomed his help with open arms. It took a while, but he got me stable. He got me home to be with my family. Kelley assured my mom that I could go into public schools and be successful.  For those of you who know me, you know that I love school. I can remember hearing that phone call at the fresh age of four & seeing the excitement in my mom's eye when she told me I could go to school.  I spent years, miles, and monies as a professional student. There was nothing that I loved more than going to school while I was there. 

When I found I was pregnant, I contacted him to make sure it was safe to carry this child. It was him, and only him, that I trusted when he said that Lennon and I would be perfectly fine. I often have to shake the "what ifs" from my head because I was so scared that I was even too scared to contact Kelley. It took him about 45 minutes to return my email.  At the 46th minute, I was enlightened to the fact that I was  going to be a mom.  The single most rewarding and exhausting title that I have ever taken on - no degree required either! And I can assure you, there is no greater love that I have than the one for this little boy of mine. 

When I wanted to get a tattoo, and my mother tried to tell me that my disease didn't allow it, I called his office.  His secretary said that he was in Australia and he would get back to me when he could.  Within twenty minutes I had a call confirming I was just fine to get tattooed.  It only took me five years to get one. 

So to conclude the introduction, Kelley is a mover and a shaker.  What he says goes. When I am sick, well, on death's bed, perhaps, he calls he shots to get me well or to stay well.  He has not failed me since he found me & he hasn't given up, even if he ended up more discouraged than I have been at times, I'm sure.  

Gosh. Am I a chin wagger or what? I blabber when I'm nervous. Or when I see someone older than 42 months old :-) 

Friday.  (The Friday that I am referring to is Friday, March 10, who knows when I'll actually get this post live.)  My mom, husband, son, and I all hopped in the car and drove down to Philadelphia (in a snowstorm!) to do a few things.  One of those things were to see Dr. Kelley. I haven't seen him since before Lennon was born.  We had to talk about January.  About a new action plan in case something like that happens again. About Lennon & what happened since Lennon.  About my response to the supplements I'm taking. 

It was a lot to take in. 

Firstly, he was ever so impressed with my improvements since that last time that he saw me. My muscle strength is much better than it was when I was pregnant (and I feel like I was my strongest overall when I was pregnant.) I actually have reflexes in my knees and ankles, which he's always had a hard time getting any sort of reaction.  Dr. Kelley is also impressed with how I am standing.  But most of all, he's impressed to my response to the citrulline.  

Citrulline is an amino-acid.  It's name comes from the Latin word Citrullus, which means "watermelon." It helps to reduce body fatigue & does a bunch of other stuff that I simply can't remember or don't know to begin with. Citrulline is something that I lack most days, and when I am sick to a point of causing fasting (remember - I can't fast,) it is incredibly low. In the middle of January, Dr. Kelley suggested that we try this. It is relatively new as far as treatments (2-3 years.)   It was put in my feeding tube three times a day.  At first I didn't let the Citrulline get any credit for my improvement.  It was all me, of course.  But then I walked about 50-75 feet, unassisted and without falling. There is no way that was all me, because I have been looking for "that me" since September of 2013. Before you think I'm a nutjob, you should know that Dr. Kelley (and presumably a team of doctors,) have cured heart failure with Citrulline. Sure, it's a lifelong supplement for me and the other guy, but the other guy has a working heart, and I have muscle tone. 

Because of this Citrulline my muscles are getting sort of defined (?) again.  Sometimes they ache as if I have been working out and sometimes I can feel the difference just when I'm sitting doing nothing. When Kelley examined me, he couldn't get over how big my muscles are, and neither can I. It's kind of a pain in the ass to take the citrulline Bc I have to mix it with other food. Sometimes I throw it in a shake and chug it (yuck!) but it really is totally worth it. I believe in Citrulline, and so does most of my family. I have some independence back and that's lovely. 

So then there is this genetic test. This is something that Kelley has wanted to do for a while, but I guess I never got around to it. On Thursday, 3/30, my parents and I are headed for some blood work. We are going to do a test called GeneDX. Kelley is hoping to see if/where the mutated gene is on my mom and dad, and where it ended up on me, if that is indeed what the case is.  I am nervous and scared with this one.  Only scared because of the needle. But nervous because it's pretty much one of the last chances left to find some sort of diagnosis. Medical science has come so far recently that I must believe we will get the answers we have been looking for for thirty years, and if we have answers, maybe there's a treatment - or a cure. It's just too out of this world for me to comprehend.  I'd take treatments though. It's a start. Perhaps we'd know what to do to get me better faster, longer, and make sickness less of a risk.  I don't know.  I'm crazy anxious about this one. 

(Fifteen days later.)

The blood work is in approximately twelve hours now. It's crazy.  I'm trying to be cool like Danny Zuko, but I'm really hopelessly worried like Sandra Dee, or worse, the beauty school drop out, Frenchie, hallucinating in an almost Peach Pitt. Just can't make up my mind on who would be serenading me.  Why am I nervous? Well, as stated, the needle itself is scaring the bejesus out of me. But then there's the impending results.  We ARE opening a Pandora's Box.  Just can't be sure if it's a box 'o shit or a trunk of treasure.  There seems to be some bliss in ignorance. & like honestly, I can't put my mom or my husband through anymore crap this year. I just kind of want to stay still. Silly. 

But wait. 

There's more.  

I hope you're sitting down. 

When I was eight(ish,) Kelley had hoped and had me evaluated for some pretty major surgery.  He was hoping for a surgery that would basically straighten my hips and legs out. He believed it would benefit me greatly.  The orthopedic surgeon (at Hopkins, I think) concluded upon evaluation that I was not strong enough to handle the surgery & that I'd also run the risk of being paralyzed. That was something he, nor Kelley & my mom, were comfortable with taking. 

Things were left at that.  Years of physical therapy.  Of adapting. Of overcoming. Of setbacks. Of living. Of triumph, if I do say so myself. 

So then on that snowy Friday afternoon a few weeks ago I said, "remember that surgery that we talked about all of those years ago? Do you think something like that is an option now?" It was almost a whisper because I couldn't believe I was actually suggesting I'd get knocked out again. 

He said no, that's not an option anymore, because it isn't the least invasive or effective way to do it.  But, he did say there might be a way.  

Botox. Casting. Repeat. 

So the deal is that they would paralyze (botox) my legs (one at a time,) and cast it so that the tendons in my knee would be forced to straighten. I'd be in casts for an average of six weeks per leg. He theorizes just one treatment per leg will be enough. Then, or possibly during, I would have surgery to slice the tendons in my hips. The surgeon would do a Z-shaped slice into each side and, hopefully, that would relieve some tightness in my hips. Between that and the casting/Botox treatments, Kelley thinks I'd stand up straight. 

And kick the wheelchair to the curb. 

I'll let you read that sentence again.  

It was actually this: 

 "I think she's trying to ask if would walk like me and you." My mom said for me. 

"I don't see why not." He said.

Could you imagine? Me? Standing up all the time and walking alongside of you? No longer staring up your nostrils when we are talking. No longer in the general fart vicinity. Me. Just like you. 

How? Well, Dr. Kelley believes that my muscle strength - when it comes to walking and standing - is severely debilitated because of my inability to stand erect. It makes sense, sort of. I use so much strength trying to pull my body along that I tire out fast. So perhaps it would work.

I don't believe this shit for one minute. I have no reason to doubt Dr. Kelley. He really has rarely been wrong with me.  But there is a first time for everything. This is just too out of this world for me to wrap my head around. Will I try it? Yeah, of course.  I'll do whatever I can to help Lennon have a normal mom. But, like, wow. 

Imagine the heartbreak if it doesn't work.  Not for me, because although my opening line is about optimism, I am also a realist. But the heartbreak of my mama & family. My friends. Maybe my husband. He is a fool and really loves me any which way, so I don't know if his hopes are up. That would be a crazy disappointment, if it didn't work. 

But then, just maybe, it might. What do I do then? My entire life has been this way. I have never let it define me, but it has helped me become who I am. The adventurer, the never settle, the carpe diem, the-funny-but feisty-and-a-bit-of-an-ass that I am today. For the better part of twenty years I've fought being "the-girl-in-the-wheelchair" and now I'm like woah, relax, that's my role.  Just yesterday, I picked up my new wheelchair and criticized every part of it.  I ultimately said to the gentleman, "sorry, it just doesn't get easier to accept that a wheelchair is a part of my life. Let alone be excited about it."  (And also, I picked pink.  It's a bright cherry red, at best.) But the wheelchair game is all know.  It's like I'd have to make a new identity. A completely new character for Miss Autumn Rose. I've worked quite hard on this character for so long.  

But honestly, don't get me wrong, I'm going to do it.  The very first thing I thought of when Kelley said that I'd walk is that Dann and I would renew our vows- we'd have another wedding. And my lord, would I dance.  With my husband.  With my son. I'd dance down that aisle. I'd dance to my car.  I'd twist and shout. I'd Macarena. I'd electric slide my way into your hearts all over. I'd dance more than Ellen ever has, because all I've ever wanted to do is dance.  And the whole world could watch because eventually they'd stop staring because I'd finally BLEND in. Do you even know how long I've been waiting to blend in? To not be noticed or stared at? It's just such a wonderful thing to imagine. To not have anxiety when I think about being with Lennon at school things - I can tell you that I am crazy nervous over kids making fun of him because of his mom. To take Lennon for walks.  To just be like you. 

So. I don't know.  It sounds like some interesting times are ahead. If you are the praying kind, just send some my way. Let God's Will do what it will. Let the good vibes come my way.  Let whatever is meant to happen, happen. 

And, I suppose, get ready for an adventure. 

xoxo, A

Thankful Thursday

Thankful Thursday 

As some of you may know I always practice being grateful.  Recognizing all of the good things in life is important and appreciating them is even more important. I spent a good ten days off of sedatives while being in the hospital. My mom and my husband would give me pieces of the story as they felt I could handle them.  I had some time to go through all of the emotions that come with a "trauma" like I went through. I was mad.  I was sad. I was tired. That was on repeat for about 24 hours. Then, when my mom showed me a recent photo of Lennon, the switch flipped and I was grateful.  Grateful to be breathing. Grateful to have my family.  Grateful for my son. In the days after, I would focus on things to be grateful for, especially when things got scary because there were times when they did. I did what I always do and focused on the good.  After all, there is always something to be thankful for.

Nurses- The nurses in both the ICU and the pulmonary floor were wonderful. There was one that I didn't care for, but as I learn more I realize I may have imagined why I didn't like her rather than any of that actually happening. Each day after I got off the ventilator and got back with the program, whatever nurse I had for the shift would tell me how much better I looked and was doing. For six good nights, I had a nurse named Lindsay.  She reminded me of my childhood best friend in so many ways.  I was grateful that I had her. When I was frustrated at the feeding tube or when I thought I wouldn't get out of there, Lindsay would sit with me and talk to me. She'd tell me why the feeding tube was important.  She'd remind me that the bottomline was to get back to Lennon and stay with Lennon. Then Friday into Saturday when I had a tiny, little episode, she basically told me to shut up. It sounds rude, but sometimes I need to be told to shut up. She told me to focus on breathing and not waste my strength panicking.  She had so many good points.  Sometimes I need to be put in my place, and she did it.  Then she didn't care about giving me ice water at 2:30 in the morning and would wait until I was done.  Again, I hope you're never in my shoes, so I'll tell you this: Once you are off a ventilator and then sttuck on a bi-pap machine, ice water is the best thing in the entire world. I could not get enough of it and Lindsay knew that.  She was simply the best. 

Then there was another nurse, a dude.  His name was Jeff or John.  He was a little eccentric and he had no clue what the heck to do with me, but he knew I wanted to eat.  I was on a clear liquid diet at the time and I hated it. I sounded so ridiculously picky for someone who almost died, but I don't like ginger ale,  lemon Italian ice, or mist twist or whatever drink they had for me. Oh gosh. The broth.  If butt was ever served in liquid form, it was this broth.  I couldn't even stand the smell. Nurse J knew that.  I was sound asleep and he came busting through the door. He said, "I know you're trying to rest but they want to do a swallow eval on you.  Wake up and let them do this so you can get home!" He was so excited.  I was moved up to a puréed diet after that, slightly better than clear liquids.  

I don't know the name of the ER nurse.  But I remember her as being super nice and patient.  I remember her listening to my mom and not being a robot. I just couldn't tell you what she looks like or her name. 

   Then for all of the nurses who explained what was going on to my husband.  They would explain whatever medicine they were giving me. They would explain the machines. They would explain reactions. They would tell him to go home and take a shower and nap. They didn't have to show him that kindness. I'm grateful. 

Water - Ice water, cool water, running water. It's sounds so silly but even when I was younger and laid up in the hospital, I always wanted to feel the water when they would wash my hair.  So this time, as I already expressed, I drank more ice water than I ever have in my entire life.  I had a cool washcloth on my head for a good week. Also, I didn't touch running water for 23 days.  I had needles in both arms and hands at any given time. One of the very first things I did when I got home was run the water over my hands.  It was a wonderful feeling. A fresh start.  Rejuvenation. It really is one thing that I think anyone would miss. 

That This Wasn't My First Time at the Rodeo -  I know that this doesn't really make sense, but I'm pretty grateful that this wasn't my first time getting this sick. Sure, it's my first time getting this bad and being old enough to remember it, but by the time I was seven years old, I had four cardiac arrests and fifteen, if not more, respiratory arrests. Would you like to know how many I've had since I was seven? ZERO. ZIP.  ZILCH.  NADA. I had respiratory fatigue this time around, but I never once stopped breathing (thanks to my mama!) So I know how this game works. And this was an easy game, it just seemed harder because I'm a mom now and because I'm old enough to remember it. I knew I had a lot to lose this time around.  But now, given my history and vast experience in the ICU and not-breathing world, I know that if there's one thing I do, it's that I bounce back. I know how this is going to go. The next weeks, months will be full of testing and changing. I'm already walking. I'm already getting dressed on my own. I'm already with Lennon on my own while Dann is at work.  It's hard to believe that a month ago I was pretty much on me deathbed, and now I'm almost back to normal. But that's how I roll. 

        And I have to add this little story in because it was a turning point.  There was a doctor, I wish I remembered her name, but it was probably the second or third day that I was awake and things are still sketchy then. This doctor came in and she held my hand for a second. She probably saw through the bi-pap mask that I was scared out of my mind, but she also knew that this wasn't my first time at the rodeo. I was coughing a little bit and my sides and ribs just ached from the sudden coughing. But she said, "do you know why you're coughing so much?" I shook my head no. She said, "because you're finally moving and stretching your lungs out. Things are moving. I know that you don't think you're doing better (I didn't.) but you are." I shook my head yes, but I didn't believe her. And then she said, "You been through much harder stuff, Autumn.  You gave birth to a child.  You are much better than you were two days ago. You have a lot to look forward to. This is minor.  You have many more years left." And she closed with, "That little boy is waiting on his mom."  

     She then started to chat with my mom and I just started to think about all of progress I made since day one. When I was born, I wasn't breathing correctly (surprise, surprise!) The doctors had no clue what my deal was. They told my mom that I wouldn't live to see a week. Then it was a month. Then it was a year. Then nearly seven years went by and I was back in ICU. They told her to make funeral arrangements because I wasn't going to come out of this one. Well, I'll be damned. If I'm anything, it's stubborn. (I also have a thing for proving people wrong.) I went through a lot by the time I was seven. The next big deal would be Lennon. When I found out I was pregnant (unplanned and utter surprise,) I freaked. That's probably an understatement. I'm not embarrassed or ashamed to say that I had no plans to keep the pregnancy. BUT with another nudge and poke from nurses (three of them.) and Buckley's "Hallelujah" playing in Liverpool One,  I took the clearly given signs, swallowed my fears, called my mama to tell her the news, and hope to crap that this pip in my belly and I would both survive. We did.

    Back to now. That doctor simply saying that I gave birth to another human being. I grew it inside of my less-than-ideal-conditions body, I got sliced open to bring him into this world, I healed, and recovered (not as much as I hoped.) It was all I needed in that moment to get motivated. To stop being scared, or try to, and to focus on getting my strength back and kicking this damn illness to the curb. I sat up on my own the next evening. Not for very long and I couldn't hold my head up, but I did it. I progressed rapidly from that moment on. Within two days I was holding my head up for a few minutes at a time, two days after that I kicked the bi-pap for good, the next day I was yelling at the twits who wanted to send me to assisted living. Like I said, it wasn't my first time at the rodeo. I knew where I was headed - home to my blonde-haired cutie. My nana always said that experience is the worst teacher because she teaches the lesson after the test.  But in this instance, experience was on my side. 

Oh, my nana. 

Not Sure What To Call This Section - As you may or may not have read, my dreams or whatevers were full of my nana. From the very beginning of the sedation until Wednesday, the 11th, when the sedation finally wore off, she was there. As I mentioned I didn't see her. I saw photos of her. Old movies of her. Memories of a time that we simply won't get back. As I got further away from the sedation, the dreams were silent and in brown and teal - colors from her bar, at least how I remember it.  Right at the very beginning everything was realistic and vibrant and loud - visual and audio. But I knew or felt that my nana was playing these stories for me. Home movies is what I thought to myself during one. And I wondered how I've never seen them before. There was a connection, a closeness, a bond, perhaps, that I can't explain.  I have a terrible time settling on  what happens after we leave this earth, but I do not have a difficult time telling anyone that my nana was with me the whole time. I'm sure other family members were talking to her, maybe even shouting a prayer or two, but that great lady was with me. And of course, I'm grateful for that; she was my comfort and my guide for those eleven days. But, here's another aspect that I've come to realize just in the last ten days or so. It brought me closure. It was a final goodbye - coherent - from my nana. It was something that dementia robbed from us. I miss her and I wish she was still living on this earth with us, but the longing and the bitterness, and the ache, and anger have just washed away. It's so hard to explain in a comprehensible way. Maybe it's because it's not a goodbye, but it really is a "I'll see you later" type of deal, and I was "fortunate" enough to be with her again.  I'm not sure.  I just know that for me, in this moment, I am at peace, which is something I begged for for all of 2016.  I wish that I could give my family some sort of closure regarding our nana, without the ventilator, of course.  But I know she's waiting for us. And she will turn you away if you try to arrive to the party too early. :) 

As always, thanks for your continued prayers. Thank you for taking the time to read this little blog.  I hope that you find things to be grateful for each day. 

xoxo, 

A 

What the Heck Happened?

I don't even know where to start with this one. (I want to get this written before Pip comes home tomorrow because I am going to snuggle his face until he is sick of me.) It all happened so fast.  December 30, 2016 at 11:40 pm while finishing up my wineglass for the next day's festivities, I got very nauseous and very cold.   I sealed my glass and took a hot bath. I hoped to crap I wasn't sick for the next day as it was my niece's first birthday and I waited the whole year to celebrate.
The next day, New Year's Eve, I felt like utter garbage but THOUGHT I was getting better as the day went on.  I even thought that, perhaps, I'd make it to my niece's celebration after all.

Then Lennon was a party pooper and came home because he wanted to be with me.  I, despite my best efforts, couldn't eat, and started to feel ill again by 10 pm. Then I noticed I had an unusually difficult time breathing.  Nothing I was concerned about, I just noticed that I had to focus on catching my breath.  Then I couldn't take a deep breath. Then I couldn't hold my head up.

To be fair. I haven't been this bad since I was six. Although I'm not old enough to say this, that was almost 26 years ago- hypothetically, if I was that old.

Lennon was up by the time the ball dropped, which I was grateful for because I had a feeling I was headed to the hospital, I just didn't think by an $1100 ambulance ride nor did I think I would spiral so quickly and be virtually unconscious within two hours.

Shortly after midnight, I told, more like gasped, to Dann that he had to calmly call my mom and call 911.  Jacob answered my mom's phone and although he did what he was told, which was to get my mom, we got disconnected.  I couldn't wait for that to get sorted out so Dann called 911 and that's when things get cloudy.

The EMTs came in and simply couldn't freaking grasp that I had an undiagnosed medical condition, which apparently became a trend in the coming days. My brother got here shortly after the EMTs did and tried to explain to them what my story was but they didn't want to listen.  Literally all but kicked him out instead of listening, and with me, I'm not in a textbook; you're not going to find journal articles on me. You're not going to meet other people like me.  What my family says, what I say, is the most truth and diagnosis you're going to get. These two could not wrap their heads around that. Before you think anything, I have the utmost respect for people in the medical field, but these two EMTs were not what I needed, although they did get me to the hospital.  I remember wanting to lie back down on my bed and they couldn't let me (because apparently it's easier to breathe sitting up?) and then just leaning on Dann because I couldn't hold my head or my body up.
I looked at my brother and I can remember him saying she needs oxygen, and that's probably the last thing I remember besides him carrying me out on the stretcher with the other EMT and asking me if I wanted to go to CMC.

The ambulance ride was long and difficult. I couldn't breathe even with the oxygen and it was not getting better. I can remember hearing my mom's voice when I got to the ER. She asked if she could come in. Thank the good Lord that she did because she virtually saved my life.  It was still hard to breathe, obviously, but I had myself convinced that it was all good because I was at the hospital.  My God was I so wrong.  It must have taken longer than I remember it because apparently my dad brought my mom's car down and my mom took him back home before any real thing went down.  Before she left, she told the doctor to get a ventilator ready or a crash cart as this wasn't her first time in the rodeo. BUT she made it back by the time I would need them.

They came in to take blood.  For those of you who followed my pregnancy and delivery story with Lennon, you may remember that my veins are terrible and I am next to impossible to get blood from.  Lady EMT tried but she couldn't. So a gentleman named Joe took my blood. He told me that my veins were a bit crooked but they're alright, and I laughed with him and said ha, that's what they say about me in general.  My mom was back by then.  I laughed at my own joke about being crooked.  I don't know if she did.  As I said this wasn't her first time at the rodeo and I guess she knew where this was going.  She suggested that they get a crash cart ready and to intubate me.

I can remember her asking me if I had Dr. Kelley's information in my phone.  But I got cocky after I survived the pregnancy and I didn't have it.  Shame on me. I was able to tell Dann how to search for his information on my phone which lead him to a huge information packet with my doctor's phone numbers.  It took quite a while to hunt him down.  But I'll save that for later.

Then they came in to test my gas levels in my blood.  Did you know that was a thing? I didn't. They take little picks, almost like a finger prick for a sugar test, but at your wrist. And I guess they test the gasses that way. I can remember asking my mom if they did this when I was a baby and she said yes. I told her my entire life I wondered what those odd scars were about, seriously all my scars could be explained but these tiny little dots on my wrist, and that night I finally figured it out - and probably gained some more.

This is where is gets really blippy. Snippets, if you will. The guy who was testing for gasses had to go to my other wrist. Apparently, I told my husband and the nurse that I couldn't breathe for real and that's when my mom said that I must be intubated.  I wish this doctor was the guy with me the whole time because he refused her apology and thanked her because she knows my case better than he does.  I'm going to find out his name and thank him.

Then I guess that's where the fun began. I was on a sedative while on a ventilator, but that didn't mean I was out of it.  I was awake for five to ten minutes at a time and I was able to write and eye roll to communicate. The medicine causes amnesia, so basically, I have snapshots of moments. I want to share them so get ready to laugh and cry and maybe even restore some faith in humanity and whatever god you believe in.

NANA -
My nana was with me the entire time.  I never saw her but I felt her.  At the very beginning, I went to her bar like I did every Friday night.  She wouldn't have me. I walked up the steps like I used to and there was a note taped to the door (she was famous for that.) In her beautiful handwriting she wrote, "Not Ready Yet. Go Back to Mom's. Love, Nana."  It was even in gold. Now, I don't know much about what happens when we leave this earth. I can tell you  that I don't think we are just done. I can also tell you that when I was getting CPR on her bar when I was a child, I 100% saw my Gram Chmil, my great-grandma, and a childlike figure, who as I got older, learned was more than likely my father's oldest son. But I don't know. Anyway,  I think that perhaps my nana thought that if I saw her that I wouldn't want to leave her - and at that point I probably wouldn't want to leave her and so I simply wouldn't. I don't think I'd be able to figure "it"  out.  After that, maybe I woke up for a few minutes.  But she was with me the whole time.  I spent a few more minutes/hours/days, I don't know, trying to find her.  There was a point that I was in the bar, with the only grandpa that I've ever known, Billy, but Nana wouldn't see me. If Billy said anything to me, I don't remember.  We were just sitting in our usual spots in a very full bar, too full to see Nana.  Then, maybe as I got stronger, I stopped wanting to see Nana.  I avoided her once because I thought if I saw her, I'd  never see my Lennon again and I knew enough that that wasn't what I wanted.  So after that she played me the most beautiful picture shows - old fashion and shades of brown. She never left me. Not once. She was my serenity. She was my company. She was my guide as long as I needed her.  I spent all of 2016 chasing memories of my nana and we picked up right where we left off. I'm sad that she is gone, but I am glad that I wasn't alone.

A Mother's Love
If you asked me if my mom ever left me while I was out of it, I will tell you no.  When I try to remember awake moments there is no time that my mom is not there.  And she is glowing and beautiful.  Warm.  I knew she was fighting for me with those doctors.  I can remember her coming and telling me she got a hold of Kelley. I can remember her asking about my blood pressure and feeling so badly that she couldn't untie my hands as it was protocol for patients to have restraints with a ventilator in.  But for someone in a wheelchair to not have their hands - it's just the worst - and she knows that.  Then my mother took Lennon and kept him with her every night and took care of him.  I cannot express my gratitude enough.  To know he was safe and somewhere familiar was all I needed.  Apparently, the fight got real with those doctors and my mom and she expressed that she was going to get me transferred if they didn't start listening to her and my Dr. Kelley. Ah, Dr. Kelley.  He's known me for say thirty years. I don't think we ever actually met his wife because why would we? So my mom hunts down Dr. Kelley to his home office number.  Mrs. Kelley picks up the phone and my mother explains who she is. Mrs. K says that she will get a hold of Dr. and he will be right in touch.  My mom said, "thank you. I'm pulling at straws here."  And, maybe just what my mom needed to hear, Mrs. K says, "you keep pulling, dear."   It sounds so insignificant, but I suspect it may have been just what my mom needed to hear.

Then there's this mother's love.
I cannot describe the motivation, the drive, the fire, the fight that being a mom gives you. Every day you get shit done that you thought you couldn't do.  Every day you make it.  I hope that you never find yourself in my situation, so let me tell you this: When you are threatened with the reality of missing out on watching the person you love the most on this earth grow - When you are threatened with that handsome boy losing his mama, you fucking battle. And that is what I did. There was a point, who knows which time they had me intubated, that I thought I was going to die. I remember vividly trying to tell Dann not to take Lennon to England right away, not to take him away from his cousins and everyone he knows so soon after losing his mom. And no one understood what I was trying to say. I fell back to sleep being heartbroken for my little man who was going to lose his mom and all of the people he knows in a heartbeat.  That was just what I needed. That little boy flooded my heart and my dreams.  I am alive today because I didn't want him to not have his mother.  If it wasn't for him, I think I would have given up.  I was so tired.  I was intubated three times. But I had to get back to Pip.  Love drives this earth.  Through thick and thin.  Love does and don't ever think otherwise.

About Love -
You all love the shit out of me and I love you back.   When I woke up - oh my lanta - I simply couldn't believe all of the posts and prayers and messages. The visitors. The family and friends who would sit and hold my hand whether or not I knew you were there, I felt you.  I cannot thank you enough for holding my hand because I was so fucking scared and so alone.  Falling down a rabbit hole into an abyss. My brother and sister-in-law who took Lennon every day so my mom could have some sanity. My sister and brother-in-law for doing the same. My sister and my friend, Krissy, for hanging out with Lennon.  You all have left me speechless and full of gratitude.  I am moved to tears - quite literally - as I write this.  You love Lennon as much as you love me. Thank you.    My friend, Stefanie, was there probably all but two days. When I didn't even know she was there, she sat there. For my girl Michelle, who I met ten years ago when I went into a salon to get my eyebrows done.  She made that trip up to CMC to do my hair. It made me feel almost human again. All those visitors and gifts. My god.  Thank you.  For your prayers and your juju and your healing thoughts, thank you from the bottom of my humbled heart, thank you.

This British Guy Who Has My Heart -
So you may not know this but I know Dann because he would come and get rid of spiders in my flat in Liverpool.  He was the boy next door. Never did I think that he would be the guy battling alongside my mom to ensure my survival. He didn't not leave me except to shower. He held my hand. He sang to me every night except for the last night because he actually sang himself to sleep. He suctioned my mouth.   He fed me. He wiped my tears away when I cried that I'd never go home. He made me laugh. He didn't leave the room when they were pulling the feeding tube out and I was being a baby.  He's spent more time on the phone with Dr. Kelley than I ever have.  He told people to shut up when they were talking like I needed to go to assisted living (COULD YOU IMAGINE?!?!) I don't know how or why I was the lucky one to get to marry him, but I am thankful.  There's just no one else I could have married that would be my voice and my temper and my stubborn when I needed it so badly.

So What Happened?
I don't freaking know.  They think it was some sort of virus that just attacked my lungs.  My metabolic condition didn't help things because I decline so rapidly. I hate knocking doctors but some of them just were not listening and it was not working in my favor.  I was put on a ventilator three times.  Pulled off twice too early. I was not strong enough and the doctors were not listening to my mother or my husband.   Before the third time, they said they were going to do a tracheotomy. My mama just about had enough of it then.  She called Dr. Kelley who immediately called and said that he will fly me out of there if they are not capable of taking care of me as he advises. There was no word of a tracheotomy since then.  I was then on the ventilator for four days.  Pulled off on the fourth day and stayed off. I needed time to build my strength to be able to breathe. Not many people in that hospital wanted to give me time. Then or after. I was being fed via feeding tube - that took two days for them to put in (with a metabolic condition, I can't fast.)  In my feeding tube, there is lots of protein. It has been this was since I was a baby. It hasn't failed me. But the doctors who didn't know me before January 1 thought they knew better.   They did not.   Apparently one doctor actually had the nerve to say that he would treat the symptoms once I was diagnosed. Are you kidding me? I've been undiagnosed for 32 damn years.  Do you think I faked it this whole time?!?! I wish I knew his name because I would give him a special shout out in my thank you letter.

So after I was pulled off of the ventilator - I am to assume this is January 9 or 10 by now, I wasn't out of the woods, but I was able to see the clearing.   A huge issue was that the CO2 in my body was sky high when I went into the ER.  Because of my muscle weakness I am unable to expel CO2 completely when I get too weak to breathe. That is why my head felt like it was going to blow up and that is why I couldn't breathe. That is also why after I was pulled off of the ventilator, my brain/body reacted as it would react in a panic attack only my brain would really tell my body to stop breathing.  After I came to on Tuesday, the 10th, I had a few more episodes and put on a bi-pap machine to help get rid of the rest of the CO2.   I was awake and I remember ALMOST all of it from then on out. My last episode was that Tuesday going into Wednesday and I woke up convinced I wasn't at CMC.  I was also convinced that I had a ghost busters mask on, so there's that.

For eight days I communicated via pen and paper. There were times that someone had to hold my wrist so I could write.  But with my love of words, I find it beautiful that when push came to shove it all came down the the written word that we've so abandoned in this tech age.

I kept my sense of humor. The nurses quickly learned that things suck a butt, that I'm sassy but funny. That I am a picky eater. That if it looks like it should be in Lennon's diaper, I won't be eating it.  One of my bracelets said "Limb Alert" because of my mid-line catheters. When I was moved to a step-down unit, I warned the nurses that yes, I do have limbs and that I planned on keeping them.  I also asked if they had a bracelet for sassiness and if there was one to indicate that I was vocal.  They chuckled.

I have been stuck approximately fifty times.  I have more bruises than I've ever had at once.  I have had two mid-line catheters - Google that if you don't know.  I have a voice that sounds like a 85 year old smoker.  I am tired.  I am alive.   I am grateful.

But I was pissed.  And I was even more tired.  I was tired of this nonsense all of the time and I do believe if I didn't have my Lennon, I would have just thrown in the towel. I asked Dann a thousand times why I can't just be normal. Why I always have to go through the hard shit. I had myself a well deserved pity-party, brushed my feeding tube off and then focused on getting better.

I will close with this because I am exhausted, but I know so many of you wanted to know what happened.  If you're reading this, then you know me.  You know my condition.  You know my perseverance and my stubbornness. You know that I am sassy and can be a sarcastic jerk.  You know my drive and my setbacks.  You know I do not rest for long nor do I let that much stop me. You know that I am funny and I try to be kind.  I am generous and that I only say no when I must.  You know that I am grateful and I am humble. You also know that I am stuck in a body that limits me every day.  That obviously betrays my spirit whenever it pleases. So I want to ask you this one simple thing to do from here on out - and I only ask this of family normally - love your body.  Appreciate your perfectly abled body. Take care of it. Be grateful every day that your body works. That you can get up and get dressed and brush your teeth.  That you can walk down the street with ease.

And you know what, tell your friends and your family that you love them.   Tell them every single day.  Hug them.  Hold their hand.  Appreciate every moment you have with them.  Take photos.  Regardless of what you look like. Those photos will be all your family have left when you're gone.  Be grateful for every moment you have. I was making a damn wineglass and 24 hours later I wasn't breathing.

Again, I appreciate your continued prayers, juju, vibes, and thoughts as I recover.  It will be a while because this one really knocked me on my arse, but I'll get better. I am forever grateful for you all, genuinely. You've all made me smile even if I didn't respond to your message or post or whatever (I am tired!) I hope to get in touch with you in the coming weeks.




xoxo, A

It's a cold and it's a broken "Hallelujah."

So I try to remain optimistic and delightful at all times.  It's how I roll.  I try to stay grateful and remind myself there are plenty of things to be grateful for. 

So as my first year of my journey with Grief comes to a close, here I am. Searching. 

I have had days that I have not been very grateful, or at least I didn't act like it.  

I've had days that I know life comes together.  

I've had days that I simply muddle through while missing my nana immensely. 

I've had days that I'm on top of the world and wishing she could be here to see it. 

All in all, at least I've had days. That's a privilege that will stop abruptly, whether it's tomorrow or forty years from now.   

So I find it particularly important to stick with my thanksgiving tradition of a Thankful Thursday blog post.

 It's not because everyone is doing it. 

        It's because I need to do it.  

My friends.  - Whether it's three in the morning or a lunch date that lasts for hours, they're there.  To make me laugh, to help me make sense of things, to listen to my guilt, to support me. I have real stand up friends and a few of them completely surprised me this year. From the people that I've texted and asked "when it will get better" or "do you think she's okay?" to the friends who get me when I say that "I'm just not into the holidays this year, but I do it for Lennon."  I thank you.  There are so many of you who have reached out or just sent some comfort. Just thank you.  

Guilt. - My oh my, does guilt change your soul. Nothing changes your actions quite like guilt does.  I am sure I am not alone when I say I lay awake at night and think of all I didn't do or, maybe worse, did do. Not enough time, not enough visits, not enough patience, too much sass, too much social life. In the grand scheme of things, I know that, wherever my nana is, she isn't holding a grudge about me being short with her when she asked how my ex was doing. I know she isn't clinging to the fact that I had a strict no smoking rule in my car. And I also know she probably isn't upset that I missed a few pizza nights here and there.  But I am. So I changed my behaviors over the last year.  Now, I try to treat everyone like they're someone's nana (or grandfather.) I try to take a deep breath when I want to shout. I still can't stand smoking so that's just not going to change.  And when I'm having a sad day, I do something nice for someone.  Usually I seek out an old lady and buy her a meal. The first time I did it, I choked out the words  "I should have done this more with my nana while I had the chance," and that old lady gave me a grateful & understanding smile. And today, I just wished another lady a happy thanksgiving quickly, she didn't even realized I paid for her.  I just wondered where her family was and how silly could they be to not spend time with this lady. Luckily, they don't know how much they'll miss her when she's gone. 

My tattoo artist.  - I know. But let me tell you. The relationship you have with your tattoo artist is intimate and steady. You cannot bounce from shop to shop and get the same experience. One of my tattoos took a total of sixteen hours.  Sixteen hours with a dude who's stabbing you repeatedly with a tiny needle that's coloring your skin forever. It's intense.  I had my first tattoo almost ten years ago. In the midst of a heartbreak. Since then I graduated with a master's (five tattoos during those years,) I moved to England (the sixteen hour one before I left,) I got married. Birthed a child.  Found/lost/found/lost/on repeat in regards to my faith.  & lost my nana.  Now, many people have been with me through that. But my tattoo guy doesn't give a crap what I say & he usually has good stuff to say back. When I asked him about using ashes and drawing up my nana's bar sign, he said he'd do it. Then when I came in with just her signature. He didn't mind that I was crying. There were no words exchanged. No cliches said.  No hugs.  No nonsense.  The dude let me cry, which is what is needed sometimes. Now, I have "Love, Nana" tattooed on me, & when the going gets tough, I swear that tail end of the A pops out like she's telling me to relax.  I'm grateful for every tattoo - even the ones I covered up. They're illustrations to my story.  

That I'm a jack of all trades! - I never stop. Obviously, I'm a mom. But I'm also a crafter, a LulaRoe consultant, a poofy organics guide, & I have an actual  job. I have little opportunity for grief to catch up to me.  I love doing my crafts. It's therapeutic & I'd like to think my nana would be proud.  My husband is my biggest fan of whatever I make & he always cleans up my crafty messes. & Pip always asks me to make him things and that warms my heart.  Dann used to joke that I didn't know how to relax & now I simply don't have the time. 

The guys of mine.- Lennon and Dann are my gratitude in people form. I can tell you every cliche about how wonderful my husband is and they'd all be true and not enough to express how amazing he is.  I wish I was exaggerating but he's pretty perfect. Lennon. That boy is my sunshine. He makes me laugh and he makes me crazy. He greets me every morning with a smile and he holds my hand as he's falling to sleep.  He is the real deal. Even though he may or may not shout, "free the boobies," as he's leaving the post office.  (Ok. Maybe Dann does have a flaw.) When I am sad we get into a big bear hug with the three of us and I am reminded I'm one lucky lady.  They're both happy and healthy. I cannot ask for more. 

My siblings. - we are like any family and we get on each other's last nerves. But there is no one that I'm prouder of or more defensive of than my gaggle of Chmils. My brother is my saving grace and I am grateful that he is successful, happy, and healthy.  He's always ready & willing to help, & if you catch him off guard, he might tell you a joke or two. My older sister. Her battle with addiction is no secret. Over the years, she's taught me how to love unconditionally and honesty, and also how to give tough love. I'm grateful that she's alive today because if you asked me six months ago, I'd have told you she probably wouldn't be. Sthe has another chance  & I hope this time is the golden ticket to the sober life she longs for. My younger sister.  My challenge.  Let me tell you. This girl drives me insane in every way possible. Let me also tell you.  No one has my back like this girl. She is my ride or die. Bodyguard, big mouth, or private LulaRoe deliverer, she's my girl. I'm lucky to have her as a sister, even if she makes my blood pressure go sky-high & my jaw tighten so much I might shatter my teeth. I've learned that little sisters do that.  I'm glad she's mine. 

 I'm also grateful for my sister-in-law & my brother-in-law. Jess is a perfect friend.  She lets me complain when I need to complain.   She helps me figure things out & talk through things. She is a sister to me and she's one I always needed.  The Other Corey.  He's a riot.  He's a no nonsense guy. Honest.  An under the table marine biologist. He puts Christa in her place when she's getting too rowdy. (To be fair all of the Chmil kids need to be put in their places more often than not.)  His dry sense of humor makes me chuckle and we all need some of that. 

     Of course, it goes without saying that I am grateful for all of my nephews and my beautiful niece. They warm my heart.  

My mama. - yeah. This is her third or fourth appearance.  I could actually post a reason every day that I am grateful for this lady.  But this time, I'm grateful for our convos. As I get older I realize that my mom and I are the same. She makes me laugh Bc she's a little zany.  She makes me crazy Bc she's a little impatient. She gives me a second to breathe Bc she offers relief. I probably do all that to her too.  

I've clung to my mom this last year (full on clinger.) I'm grateful for the meals.  For the laughs. For the not so fun times. When we unpacked my nana's boxes in silence and then tears and then laughter.  I know that I am beyond lucky to have my mom with me.  I try to make it a point to annoy my mom each day to keep her on her toes.  But really, I'm just needy.  She greets me with a smile and she tells me to go pound sand when needed.  Gratitude comes in many forms. 

I hope that,  even if you have had a hard year, even if you feel like a grinch, that can recognize how lucky you are to have your family & friends with you. That you can see that you have a roof over your head & food on your plate.  Hug all of your family members whenever you can. Be thankful for them today. 

And so it goes

It's hard to believe that it's a few days any of six months since my nana passed away. 

It's almost comical that people really tell freshly wounded grievers that time will heal the pain.  It doesn't. You just grow numb to it in some lucky moments.  It catches up to you though.  You'll be sitting in an ordinary situation and it will just hit you.  You'll think of them in a present way and it will smack you right in the soul that there are no longer present moments with your loved one. 

It's a beautiful thing at the same time. You learn a lot about yourself and those around you. You explore moments in your memory that you almost forgot about. You feel your heart break in a million pieces and have faith in yourself that you will put yourself back together again. And sometimes, if I'm honest, you just straight up and lose your shit because the hurt sucks and is unbearable. You spend a lot of time by yourself (or with a two year old.) You may grin and bear it, but you make it. 

I have yet to dream about her. It's weird because I'll dream about being in the bar and it's open and there are customers.  Just no bartender. She's always somewhere but never seen.  She's talked about. Her presence is felt, but I just can't see her. I just long to see her and hear her.  I hope that eventually It does happen.   I've searched for videos that I "know" I had and cursed myself for switching my phone a million times and losing voicemails from her. (Would they survive five years?) I've dug in my memory and begged my mind to give me a sound clip of her.  It's just so, so odd that I just can't hear her voice in my head. I can imagine any voice you can think of, but not hers.  

She didn't want to be buried.  That's hard. I have no where to go. When my friend's mom died, I'd go to her grave whenever I had too much on my mind. I never realized how much it would affect me to not have a grave to go to. Just for some peace and seclusion. It hurts to pull into the bar because I just wait for her to come to the back door to see "what's doin'." 

I've tried to treat people like everyone is (or will be) someone's nana. To live and treat people like my nana would because she was an extraordinarily kind woman. 

I just cannot believe she's gone. 

That right there. That is a genuine statement that I say or think at least once a day. I just think of all she did in her life and it's just stopped.  Simple and easy as that.  Only it's not simple or easy, is it?  I almost regret going to to the nursing home after she passed. It's a sight I cannot get out of my head. I know that I needed to be there, but I wish, just for a second, I was in England or somewhere that I couldn't get to her then.  It haunts me most of the day. I see it when I go to sleep and I see it if I let my mind wander for one moment. 

The roses that were at the funeral home for her were the most beautiful roses I have ever seen. I wish it was normal to take a photo in a funeral home because I will not see roses that beautiful again. She looked beautiful.  She looked peaceful and not tired anymore. There were so many roses.  So.  Many. She was literally surrounded by roses and it looked like she was on a bed of roses. I mean, as beautiful as death could look, she nailed it.  It was almost as if the area that she was laid out in was glowing. It sounds like such a cliche, it's obnoxious, I know.  But when the pain is too much to bear, I think about those roses and how honestly peaceful she looked, finally.  I think that's what I did while we were at the funeral home.  I remember smiling and just going on about how beautiful the roses were. People probably thought I was crazy. 

As I've mentioned, I haven't lost someone as close as my nana was before.  This is my first time at the rodeo, and for that, I know I am lucky.  It's such a learning experience.  Is this grief really chained to me for the rest of my life?What if I live for 70 more years?  Does other sadnesses just take over or are they separate? This was such a hit for my wide-eyed and bushy tail look on life. And I think, maybe because I am a writer, that I just can't let go because I can't put into words how I feel. (I could probably draw it, ha, it would look like Mr.  Messy.) 

So. I don't know.  I don't know if there are any other words people can offer me.  I think that l, much to my dismay, is something I have to do on my own. That's interesting because whenever others have lost someone, I was always ready to help. Ready to talk.  In their faces. I never once thought that they would want to be left alone. The last six months have taken a lot of what I thought I knew and changed it.  

I don't have a way to end this post.

Simple and easy as that.