No, I’m not okay.

 No, I’m not okay.

I’ve lived through this once before. My husband, Jeremy, and I held each other together through some of the darkest years of our lives. He’s been my rock through more than I can put into words, and I genuinely don’t know how I would have made it through some of those years without him.

Now we’re doing it again.

Except this time, my little boy is 16. He’s becoming a young man, with his own voice, independence, and incredible resilience. I’m so proud of who he is, but there’s something absolutely gut-wrenching about watching someone you’ve loved for 16 years suffer, knowing you cannot make it stop. No matter how fiercely you love them, there are things you simply cannot protect them from.

Yesterday, I stood in our home with my terrified daughter beside me, having to make the decision to administer emergency medication we’d never used before, hoping I was doing the right thing.

Jeremy was at work, because life looks a little different these days. But the moment he knew what was happening, he made his way home as quickly as he could. Through everything we’ve faced, I’ve never had to question where his priorities are. His family comes first, and knowing I have him beside me through all of this means more than I can explain. I truly couldn’t do this without him.

No, I’m not okay.

A dear friend I’ve known for over 15 years passed away on Halloween. Someone my age, with the kindest soul and five children. There’s something shocking about that. You start questioning everything. Your own mortality. The fragility of life. Why good people suffer. Why any of this happens.

I’m angry. I’m scared. I’m grieving. I’m exhausted.

It’s not just one thing. It’s the accumulation of everything. The fear, the grief, the uncertainty, and the realization that no matter how much we try to control our lives, so much of it is completely out of our hands.

I’ve spent today in a fog, barely wanting to move. I know I should take a shower. I just need to move.

People tell me I’m strong, and I know I am. I’ve survived so much in my 48 years. But being strong doesn’t mean I don’t fall apart. It doesn’t mean I’m not terrified, or that I don’t sometimes wish someone else could carry the weight for a while.

Sometimes life shatters you into a million pieces, and all you can do is hope tomorrow is better.

Better for Adrayn. Better for Sloane. Better for Jeremy. Better for myself. Better for you.

Because we all deserve a little peace.

I know there will be better days. I know this is just one day.

But today, as the rain keeps falling and doesn’t seem to let up, I’m going to allow myself to grieve. To be angry. To cry until there’s nothing left to cry about.

Hell, I’m probably getting my period, too. 😂

But crying is a release. Sometimes it’s the only thing that makes the weight of everything feel a little lighter.

So I’ll let the rain fall. I’ll let the tears come, and eventually I’ll get off my goddamn ass and take that shower.

But for now, I’m giving myself permission to not be okay.

Good Vibrations

Did I just massage Woody Harrelson?

How did I keep my cool? Why were my hands so steady?

Well... the more life I live, the more I feel that all is aligning in the way and "order" that it must for us to understand and grasp the lesson.

Last year at this time I was living in the moment... each minute holding my breath in hopes that my son would make it to the next minute without having a seizure. It was a hellish year that forced me (and my husband) to understand defeat more than ever. To know what it is to stand on the sidelines and have no control. 

Well, this August Adrayn will hit his ONE YEAR mark of being seizure free!

It all started when my husband's agent submitted him for a movie with Woody Harrelson. This sparked a thought in my head.. "I am going to meet Woody Harrelson". Then when that opportunity passed, my father received a call from his union buddy about a driving gig for the a film being shot here in the cities. Which again had me thinking... Yep, here it is again... "Hello Woody!". From there I think fate had some play... it was fate that my dad stood overlooking the city of Saint Paul  while  setting up a set and his buddy called him over to  chat with Woody... they had a nice human to human chat about Bob Dillon... and fate that said movie stars' Massage Therapist (or as Woody calls me Masseuse) cancelled on him, and that I went to school in my 30's to change my whole career path to become a Massage Therapist.... ahh... all aligning...

I will acknowledge it all. I openly and graciously accept this amazing gift that my dad, and the universe sent me.

It is here to show me something.

Am I THAT amazing of a massage therapist? Am I super personable and awesome to be around? 

Well... I'd like to think so, but maybe it's more...

Maybe this is all happening to show you how accessible it all truly is. 

Tap in. 

Listen.

Align. 

Allow.

You deserve it. 

On a side note... thanks Dad. I'm so happy to hear the joy in your voice when you see how amazing this experience has been and that you made it happen. It is beautiful to know that you are finally being treated with so much thoughtfulness and love for all of your hard work and dedication.

You are the best Dad a gal could ask for. I am forever grateful. 

Mucho Love!

AdraynLOVE

I am a lady with superstitions. I fear that by saying things are going well, that I may somehow have a super-power that throws it all off... So I will just say that things are better than they were pre-diet.

Pre-Diet:  Typically Adrayn would have 1-2 Grand Mal Seizures every 4-5 days, and 0-100 "Drop" Seizures daily... 3 out of 4 weeks.
Post-Diet: His last Grand Mal episode was scary... he had 4 in a 24-hour period, that being said... it was on 6/21 (3 WEEKS ago!!!), and his drop seizures followed for less than a week. He will still have a day with a few drops, but NOTHING like it was!

It's odd... walking around, feeling more freedom from the beast that is Epilepsy. By no means am I breathing freely, but I am much more relaxed... and boy am I getting more done.
To somehow put into words what it is to find out that your child has Epilepsy... well... I don't know if I can do it justice. I guess I felt trapped... sitting by my child, hip to hip for the last 6 months. I didn't want him to face this alone, so I sacrificed myself. Sleep, nutrition, sanity... you name it. Not too bright, but I guess I'm learning as I go, and let's face it... the pool incident last summer has shaken me to my CORE and I haven't been able to let him go too far since. I am working on it..... and will go further down the rabbit hole once I can step back and take it all in. 

I must admit that Pre-Epilepsy I would have more "I'm tired" days, and "I'll do it tomorrow"... well, no more! EVERY day is a question mark, so when we're on a good streak I GET SHIT DONE! I am super woman... and after everything that I have faced the past 365 days I am seeing that I CAN do more than I had ever imagined!
With the loving support of my husband, I can make time to love my family, measure and concoct special meals 3X a day for my son, nurse and cuddle my little baby girl, shop, clean, have dates with my step kids, AND run a business!!! What? Yes! Can I get an AMEN!?! 

Adrayn has shown me so much about myself this past year... mainly, that I am MUCH more capable that I had ever dreamed.
So, in the last 365 days I have GAINED 500+ gray hairs, and LOST about 30 pounds. Not the best way to lose those extra baby pounds, but I don't get too hard on myself these days. 

Thank you Adrayn... If this never happened to you, I would never have seen this strength and beauty within. I would have never known how much support I have from ALL facets... (Babysitting, video monitors, car repairs, neighbors hugs, and California 'goodness'), we are blessed....soooo blessed. 

We. ALL. are. 

Take this time.. this very moment to realize how amazing you are. I was blind, and then Adrayn showed me... maybe he will show you too.

Mucho Love!

Sloane Bologna

Sloane,

Wow... I cannot believe that you are heading towards 11 months old!
With so much going on one can easily become lost and overwhelmed... but, you bring be back from the insanity... always.
You have begun to go from a "few" steps, to full blown walking in days... Your little baby jeans move so adorably with each step.

You always amaze me.
I am one truly blessed mama to have you in my life.

I remember when I had my tarot cards read for my 35th Birthday, the reader stated that you would be an amazing person.. actually the word she used was Buddha. She also stated that your brother Adrayn would be a Healer... and I can see that happening with all of his experiences with Doctors and Hospitals.

Back to you... my beautiful Sloane. So patient with me as I tend to your brother's needs. You have the most genuine and gentle soul I have ever come into contact with. Full of hugs and kisses... following your big brother around so curiously.
You love ANY food that is placed in front of you. You are not picky whatsoever like Adrayn was. One area that you could stand improvement in would be the car... you despise being in the car... anything over 10 minutes and we hear the ear piercing wail that could easily render one deaf.

You love to co-sleep with us, and feel your mama nice and close... you nuzzle your way right in towards my warm breath.

I love you so much. I couldn't have been more blessed to have you in my life.
xo,
Mama

Baby girl...

 Sloane Bologna (Boppa's nickname for you),


Wow... where has the time gone?!
You are nearing 9 months old already!


I fall more in love with you more each day. From your smiling face in the morning... to your warm breaths as you sleep. My little Sloane.


I must admit that I was a tad fearful of having you... a little girl. I was raised around boys, and felt more at ease around boys... I knew that you would change me, as your sister has... for the better.


I hope to have the mother/daughter relationship where you look up to me as a guide, trust me like a dear friend, and laugh with me like a carefree child.
I wish us a beautiful relationship, but also a beautiful individuality. I don't want to change you, but assist you in blossoming into Sloane.


You are now eating avocados, bananas, all baby foods, and wafer crackers. You are currently still being breastfed and take formula when I'm away at work. I would say that your first word was Mama... but that's up for conjecture as it always seems to be unintentional (doo da MAMA sssss dooo)... but hey, we'll stick with that for now. :)


Papa likes to set you on the toilet at 10:30am every morning so you can "expel waste", and it is actually working... well, 50% of the time. The other 50% we still get you to the toilet, but just not as timely. You seem to love it, and I think you will be quick to pick that up.
You sure are a quick little learner! You are constantly pulling yourself up to tables, couches, and even a leg! You have dared to stand on your own (by 8 months!), but seem to not be in a rush toward walking freely.


Take your time little one... I have all the time in the world to watch you grow.


I am so blessed to have you in my life little one. Thank you for choosing me as your mother.
You are amazing.
I look forward to all that you have yet to show me as I have already learned so much from you.


Mucho Love,
xo-Mama

30 seconds

"Mama close your eyes..... Mama open them......"

I am under a big white sheet with the biggest blue eyes smiling at me.

"Mama close your eyes.....", tears just stream a hot liquid down the side of my face and then I kiss those warm cheeks filled with rosy life cuddled up next to me.

I have my little boy.

I cannot forget one detail. It is forever imprinted in my brain.

Beautiful day. Sunny... blue skies, puffy white clouds.

Adrayn was sitting on the outside of the ladder to the pool as Jeremy went in with Sloane inside the house to get ready for work. I was beginning to mow the back yard with an old push mower as Adrayn was filling up a medicine syringe in the pool and squirting me with every pass of mowing... Giggling the whole while.

When Jeremy came out to head to work my attention moved.... 30 seconds.

Jeremy asked where Adrayn was. I ran to the pool. He was there.... At the bottom..

I turned into a machine right then.

My emotions were gone. I jumped over the side and scooped up his limp body... I noticed he was twitching under the water. I then laid him on the ground and saw that his face was blue... he was not breathing. Jeremy placed Sloane down and ran over in disbelief. I have never seen fear in this man like I did yesterday.

He started rescue breathing and then placed Adrayn on his side.

I picked Sloane up and dialed 911. The ambulance was in our backyard in 2 minutes or less.

Jeremy got Adrayn breathing prior to the ambulance so we started seeing the blue slip away to gray... Then flesh... I then jumped in the ambulance with Adrayn and Jeremy stayed back with Sloane to meet us at HCMC by car.

We were rushed to the ER to get a chest x-ray. Adrayn was talking on the ambulance ride but when we arrived to HCMC he was lethargic so more tests.

After 2 hours we were sent to pediatrics for overnight supervision.

My beautiful little boy is here.

I urge you to all rethink those summer pools as it was so silent, and Adrayn was always confident in the pool prior to this incident (always with supervision, of course). He was dying and I didn't know....I wasn't there when my baby needed me. Thoughts still race through my mind... what was he thinking, what if Jeremy didn't ask? I have to let it go and just be thankful.

I am... I am sooooo thankful that he is alive, and that my reaction was survival mode, and that Jeremy asked where he was and was a pro at rescue breathing. I am so thankful that Adrayn is sitting next to me with a new chance at life and yapping my head off about snowballs and staining my shirt with cherry juice.

It hit me last night when he was wide awake in the hospital at 10pm..."Mama close your eyes... Mama open them".... this would have been a game that we almost never got a chance to play....

Hug your babies extra tight tonight. Be thankful. It only takes 30 seconds.

First Loves

Dear Parker and Presley,

I have been wanting to write you for so long, but it hasn't ever come together like I'm hoping it will today. My mood is right... the kids are busy with Papa... it is time.

I wanted to thank you from a space that had been untouched in my heart until I met you. My glowing beautiful children... step children...
You have awakened a part of me that I didn't know I could handle. You have shown me a side of myself that I always wanted to be. I am more than thankful to have met you in this lifetime as well as to still have you in my life... in Adrayn and Sloane's life as well.

I remember Parker... when you were so small and shy... then once you warmed up to me you were loud and wild just like your untamed red lion's mane. You were so excited about being outdoors and when you were pent up all winter you were not shy to run around the house naked... I even remember a time when you were showing me how you could blast a toy rocket off of your "boy parts"... yep... I'm sure that will be embarrassing someday... like now. :)
Now, you are more reserved, and protective of your feelings. A bit more video games and books. I still see the fire in your eyes when you and your Papa wrestle or you play in the pool on a hot summer day. I love you dearly my beautiful red headed step child. More than you know.

Oh Presley... my sweet, thoughtful girl... you were only a mere 4 years old when I met you... I am probably the only woman you truly remember your father with. You always wanted to copy everything I did... from my beauty mark to my shoes... this helped me to want to be a better person. Always. Your thoughtfulness has never escaped you, even as you grow older... you have become even more thoughtful! I look forward to our cooking/baking concoctions gone awry! At least we know that it typically takes only 3 times to get it right! I will never forget our taffy pulling, or Kids News... you always know how to crack me up. Love you!

I am so loved, and blessed in this life. I am truly surrounded by the most amazing people... and you two top the charts.

Mucho love my sweets. I know I am not your birth mom, but I do know that I love you more than you will ever know, and to me... that's what a parent is all about.