Wednesday, August 19, 2015

THIS moment.

I started this blog to document my pregnancy with Adrayn. It has grown to be so much more. I am not timely in my writings... as I truly only write when I feel the need to. From time to time I will reflect back on older posts, as it can be a beautiful reminder of how much I've grown.



25 Weeks Pregnant with Adrayn
This blog was named "electrobabymama" as a joke. I was documenting my pregnancy via the internet... and the name was born from that. Looking back, it seems oddly fitting as I am the mother to a child whom has Epilepsy: aka wild electric storms in his brain. What a wild journey this blog has been. The most beautiful, and difficult times of my life. I hope this blog marks another story of beauty.



I was going to wait to write this, but I cannot live in fear, and the moment has struck me now. Now, I live for the moment.

Friday. 
THIS Friday, Adrayn will be ONE YEAR seizure-free.
I honestly never knew this was a possibility when I was in the thick of it.
I was almost resigned with this new way of anxiety-ridden life. A life of helplessness.

I am still coming to grips with the precious moments lost to seizures, and depression. Moments lost with an infant girl due to many overnights in the hospital. Moments lost to a son that was in a deep haze, post-seizure. There were many losses that year. Day by day, and moment by moment we made it through that hellish phase.

I cannot dwell too much in that year, or I it can be emotionally consuming. I will acknowledge how I have grown from it, and how I will begin each day with a grateful heart.

I have been more than fortunate with blessings this year. I know many respond with "You deserve these wonderful things"... and to that I say "Yes I do, but YOU do too!". This is something I am still in the beginning phase of learning, and will always hope to improve upon. I am stronger now, and the tools I have gained in my journey will only help me to persist, and succeed.




Let's look forward to a year of bliss and beauty. 

Mucho Love,
Mama Dray














Thursday, May 28, 2015

Next Stop, Normal and Perfect.

Yesterday marked one year of Adrayn's journey with the MN Epilepsy Group.

Jeremy and I have had our issues with this group in regards to not allowing Adrayn on the Ketogenic Diet initially because they thought it was too much work for us. Then after repeated harassment on my end, the Doctor submitted and allowed this to happen (months later). Then, our lives changed.

As part of the typical medical world, this clinic requests annual testing to make sure that Adrayn is staying on track with his learning, and that the seizures did not cause damage to him cognitively.

Well... his check-up was interesting... three hours of  testing for my little man, and endless questionnaires for Jeremy and I.
We literally filled out 3 pamphlets with 60+ questions that were all the same, but said differently. Why? Does the Doctor think he'll catch me in a lie? Then... we hit one question that still burns me.

"Is your child perfect in every way?"

Wow.. really? I like that Jeremy wrote "What does this even mean??" next to the question (one of the many reasons I love that man).

Anyhoo... Adrayn was just getting over a head cold, so I'm sure being forced for 3 hours to answer questions like: "Which picture has a boy", "Jump on one foot",etc. he was ready to hit the road.

As Adrayn was in one room, Jeremy and I were taken to another room where a Child Psychologist was updating us how he was doing on his tests.

"We want to make sure your son is normal, and that he can do the menial tasks that are needed in life. At this time he does not hold the attention span like a normal child would his age to do these "boring" jobs that we put in front of him."

Normal? Is it normal to do a task that has no purpose, just to please someone?

Jeremy's response:
"Our son is home schooled, and he will not be testing the same as the other children because he is taught differently... he leads us. This month he wants to learn about letters and numbers, so we are opening him to that world. We are not forcing him, he is asking."

That is the beauty of learning. Want... curiosity... it keeps us young. I am re-learning many things in my life through and with my children... and I love it!

Adrayn is far from any kid I have ever met, so I guess he's not "normal". He is truly unique in every way possible. He will never fit a mold, or be "perfect in every way". I love that about him... and I love that about everyone!








Mucho Love!

Wednesday, December 31, 2014

love.

Love,

I came across this beautiful quote, and it led me here, to write you another love letter... eons since the last.


We have grown immensely over the many years we have shared. From all of the trials and tribulations that we encountered, no doubt many would have run for the hills.

Not us. 

We absorb... learn... and grow. 

We continue on our path, hand in hand with the goal within sight. 

We are a rare breed, my love.

Thank you endlessly for your support. 
I would have crumbled without you last year in particular. 


I thank the universe for having you in my life.

Looking forward to a calm, and serene 2015!

XO,
Wifey

Tuesday, December 2, 2014

Poke. poke. poke.



In my opinion curiosity didn't kill the cat, it woke it up from it's long slumber.
If I wasn't a curious person, I would have accepted what the Doctor's told me about my son. 
That medicine was the ONLY way. 


I joined groups. 
I asked questions. 
I did research.
I had support and assistance all the while with my curious partner in crime.  
We dug, and dug, dug. 
We experimented and tried new methods. 

This diet thing is working. 

You know what that means?
Food IS thy medicine... more than you could ever know... so watch what you eat!

Curiosity has led me to beautiful places with mystical outcomes. 

You should try it. 
Follow the path. 
Eat the cake.

You may just find something that you were looking for all along. 








Tuesday, October 14, 2014

Life IS too short for that...

Releasing toxic relationships isn't permanent. 
It is a choice for the here and now. 




My husband and I have received a sharp  reality-check when it comes to outside support, both emotional, and physical. After a year riddled with many trials and tribulations, sadly, some of the closest relationships in our lives don't really "get it". It has been an unreal wake up.




I think that I have always tried to "Make the peace" in many relationships in my life... I would suck it up and grin (with the occasional meltdown)... as I'm sure most of you did, and still do in your personal lives. 

Why? 

I had to ask myself that again, recently. 

Why? 

I am in pain when I allow certain relationships to continue with a blind eye. They serve me no good, as I am not being my genuine self. 
I go back and forth... Are my expectations too high? Maybe. Why? Because that is what I would do. 

It's all a vicious circle that always ends in sadness.



I will read positive quotes and affirmations, and they typically have a message like "Life is too short to stay angry". Well, I have always strived to appreciate these words... but I think I had interpreted them wrong all along.

I have always been a huge people pleaser... and still am to some degree. My old mindset would have read this message as "Stay in toxic relationships because doing the opposite would be negative". Wow... YEP... people pleaser!

Now I see these quotes in a whole new light thanks to this past year, and namely Adrayn. 

This quote now reads... Which relationships are you currently in that grow you? Which do not? Which relationships harbor too much negativity? 
STOP and reflect. 
Breathe. 
Then, don't be afraid to let them go. 

Yeah, it's a bit more wordy than the old mindset, but it's all about wellness, contemplation, and being authentic.




Once you let a toxic relationship go, it will be gone forever... well, in the form that had no growth for you. That is not a bad thing, but a beautiful thing. 
If this was an important relationship, hopefully it does return... healthier, more inspiring, and contented.
Sadly, though, we must realize that sometimes these relationships do not come back... and that is the "fear factor" that keeps many of us from letting them go to begin with. 
Life is always in flux, and we must always be riding the waves. 
Someone that was your best friend for 17 years may not be more than a phone call once in a blue moon, whereas the gal you met at the park last week could turn out to be your new partner in crime. 

This is how it is now. 
It will change. 
It always does. 

The time to be authentic is now... because.... honestly, THAT is what this life is too short for. 

Mucho LOVE!


Monday, July 14, 2014

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!

Thursday, May 8, 2014

Serenity

Wow.


What a year.

I am learning so much. It all is in a painful way for me, personally, but nonetheless it is hopefully all for the better. My mom and I went to get our "Chakra's Cleansed" recently... I have done this before, and pretty recently at that... however, this day it was needed more than ever.
I awoke to hearing my son having a seizure downstairs in bed with my husband. I could hear it through the floor... his choking breaths... gasping. It almost stopped me from heading out to the appointment, but it didn't as my husband sternly said "You need this, you need to be well for Adrayn".

He was right... I have been seeking help here and there, and it all does help... but temporarily... then I'm back in this same rut... the "victim" role that I tend to seep into when I'm most lost.
This time, this "cleanse" was different. I walked into it in a sullen and dark mood... I had puffy eyes from crying all morning... all week... I have been so lost.

I will say that I am not "fixed" by any means... I am also not happy about what I am facing in anyway... BUT I do feel a little more comfort in knowing that it has nothing to do with me...
Suzanne, my mom, and I danced around the "what ifs" and circled the "worst case"... all of it lead me back to an answer... simple, and hard to cope with.... I HAVE NO CONTROL.

Yes... I am the MOM and YES I have say in if my son is on medication, vitamins, his diet, or what he come into contact with... but other than that... I really have no say. I have no say in what Adrayn's fate is, or if he will outgrow this... if he will take to the remedies I put forth... that is up to him and the "universe"....

Then I got to thinking... do any of us know what will happen to our children...? Ever? We must love the moment.... always live for the MOMENT, as it is really ALL WE HAVE.
I know it sounds cliche, or maybe a tad wacky... maybe all of this is making me a nut-job?! I don't care... as it does bring comfort... in a small way.

One day at a time I will become stronger... one day at a time I will heal myself. I see how me doing that is helping my son.

During his next seizure I will hold him, and I will imagine that my motherly warmth will help him. I will not run away, I will not assume that I am so powerful that I create them. That is Amy playing the victim...because this is all too heavy to deal with.

Well.... I must deal. I chose this life, and I must face it head on.

Bring it. I am ready.

I am now on the path to serenity.