Sharing stories of fear, frustration, hope and acceptance

MMJ Patient #batman

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Okay I just watched Culture High,
A documentary about legalization of Marijuana. This movie was a compelling
movie filled w Truths about pros to ending marijuana prohibition. Government does not want that. The documentary can tell u why.

Either way our Dear Friend Jason David and his son Jayden saved Adam’s life.
They guided us out a dark scary time for Adam’s health. Both are in the documentary movie, also starring snoop Dog, joe Rogan and a few brilliant scientists (forgot their names ) sorry.

In Sept 2012
I contacted Jason David.
The Davids shared their journey about mmj Info and CBD to help reduce or stop seizures. He answered ? like How to apply for a “caregivers” license. How to do this in a safe manner? He also offered hope and courage.

in Dec. 2012 Adam was an official MMJ Patient. He had his first dose of CBD butter. He was on 44 seizures pills in one day, he could not breath on his own. Llets just say he was close to death. He went into respiratory failure too many times. He couldnt move or smile. It was an extremely scary time. It was a difficult reality to face: Adam had two sections of his brain cut out, he had a breathing tube, feeding tube, a shunt in head and HE STILL SEIZED! The CBD helped reduce the seizures.

WE HAD NOTHING TO LOSE SO fast forward to NOVEMBER 2014
Adam is still an MMJ patient but
now can:
Play baskeball (w assistance of course)
Eat by mouth- purred food
Breath on his own
He is down to 12 seizure pills a day
He holds his head, moves it side to side
Smiles
Will wear RX glasses
More alert
All this because of our ability to access safely MMJ.
IT TRULEY IS THE DIFFERENCE BETWEEN LIFE AND DEATH! Politicians and negative opinions should have ZERO say so about how I ensure my child’s medical well being. If I would not have chosen to look out side the box, or listened to doctors and gave up Adam would be dead right now. It was not ever a decision we took lightly.

This medicine has saved my sons life! Please don’t judge those other parents for finding hope in this important medicinal plant.
And for those who have and will offer support..
We love u.

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HAPPY 5th Birthday Adam!

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First, I need to thank everyone who has prayed and offered their support to our family in anyway. The past five years we’ve been through ALOT and YOU have helped us through. Thanks to all the prayer warriors out there!
Keep it up!

After everything Adam has been through HE STILL SMILES. Truly there has never been a smile that shines so bright! To know Adam is to fall head over hills in love. It’s a special kind of love. One that he exudes generously to all who BELIEVE. It’s God’s love as innocent and pure as it could get, its direct from Heaven.

I’m his mom-so blessed. I wish him a happy birthday so grand even his little Deaf ears hear it. I wish him/ pray him more hours alert, more purposeful movement, more play and a stronger immune system to protect him on more family outings. None of these things money can buy. None of these can be put in a box and gift wrapped but just imagine when they come true! Imagine how good Adam will look doing them!

Yesterday we took Adam to church and held a special mass to give thanks for all he has overcome. Family and friends gathered and prayed and after we went home to have cake and icecream, including Adam. He had a wonderful time. Thanks Be to God.

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So much fun is happening around here! FINALLY!!!! We are continuing to reduce seizure meds on Adam. It’s been a long year and FINALLY Adam is slowly showing consistent, positive responses.
He is more attentive, his eyes are wide awake and smiles/ smirks more often, he is re-learning about peek-a-boo and patty-cake and bubbles.

He has a new dog named Mia. Mia loves to be by Adam mostly when he takes her cruising in his wheelchair.

Adam has gone HORSEBACK RIDING!
Yes! See picture to prove it!
He started horse riding therapy.
His first time was last Tuesday.
Watching Adam ride away on the horse (of course with therapists all around him) was one of the highlights of my life. I felt like I was letting him ride off into the sunset, to land of pure happiness. As I stood there I realized this precious moment in life had taken my breath away and I could only whisper, “GO ADAM GO” as tears of pure blissful joy skipped merrily down my cheeks. It was the BEST PLACE THIS CHILD HAS EVER BEEN. Can’t wait to go back.

He lost a tooth!! A TOTAL SURPRISE!
Thank goodness the nurse was with him and calmly went fishing for the missing tooth. I would have freaked!

Let see… What else…
Oh. The park. Adam also went to the park with his big brother Frankie.

Adam is truly turning a corner.
Each day I’M SO SO THANKFUL TO GOD. Words don’t describe. He is making a comeback… More and more this Adam resembles “old-Adam”, “healthier-Adam”. I’m realizing that he never left…. Adam’s personality NEVER left. It NEVER changed. It was/is there for the unveiling. I am more hopeful and more determined.
LETS DO THIS ADAM!!!

Significance of March 30

March 30, 2005 our first son was born;
March 30, 2012 our second son had his first of two brain surgeries.

I’ve been really busy preparing for Mr. FSW 9th birthday. I enjoy the creative aspect of party planning but not the time restraints. He’s such a good boy and he’s a great big brother. He deserves an entire day of everyone’s attention. For once its all about him…
Than why? Of all the 364 other days in a year did Adams surgery also occur on his birthday.

It’s a reminder two years ago was Adams surgery. Incase you don’t know: traumatic brain injuries such as his are given a time limitation of two years as a “new baseline.” They told me whatever he is like at two years after surgery is what he will probably remain at… Doctors said he functions at a 6week old child’s ability level… I disagree.
So on this weekend I will be reflecting on the growth of my two boys and the significance of March 30, to our lives. I will certainly be counting my blessings and looking closer at what I think really matters.
OPTIMISM, HOPE, FAITH and LOVE. NOT TIME.

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I’m That Mom

In the days shortly after Adam and I returned home from the eight month hospital stay life as we knew it was so different than before. Adam was so sick, I didn’t know exactly how I was going to get myself or him through it. His health was extremely fragile. I had to learn not only how to operate complicated equipment but how to be efficient with the two hands I have.
Thank God we have a nurse accompany us on doctor appointments. In the beginning I remember thinking, wow I’m “that mom”. It’s going to take me 20 trips just to load the van and four hours to get ready. Yup. I’m that mom. The mom who is pushing through what from an outside perspective looks like a mother’s nightmare. Pushing through all the un-thinkable things that come along with being a parent of such a medically fragile child. I’m “that mom” that has a sign on her sons wheel chair: “My momma says I’m special”. Just to state the obvious. YES MY SONS A HOT MESS BUT IM STILL PROUD OF HIM. Or when things go wrong and I know good and well my hairs a mess and my make-up… Well what makeup?? Some days there NO TIME!!
Yeah I’m that mom. I’m the mom that pulls out a big ziplock bag of ten different meds to give my son and have coffee with a friend at the same time. I’m that mom.
His health is still a complicated situation but at least now days there’s a calm that he exudes. These days he smiles more. :D there are less and less hospital stays and these days I’ve reached a place of acceptance that allows me to smile a true smile of gratitude as I push my son in his chair. These days being “that mom” is starting to take on a different meaning. These days I’m in a place that has allowed me to give myself the time and chance to reach out to other moms just like me.

The other day I went with a new friend and her son who is just like Adam only 15. It was an extremely rewarding good time. He (just as Adam) is such a joy to be around. It was so wonderful to observe his mom doing ALOT of the same things I do as Adam’s mom. It reminded me the importance of reaching out. I know I’m not the only mom in this situation but sometimes it feels that way. Parents like us have to try harder and search farther in order to find others in similar experiences. This new friend showed me I’m not the only one. She showed me an example of what 15 years worth of positive relentless hope, faith and endurance can add to life and she has no idea that she’s “that mom”.
To her I say, you are “that mom”.. You should be proud!

Best Brothers Forever

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Life is not about Life or Death. It’s about love.
Adam has taught me to LOVE FEARLESSLY. I used to fear that his quality of life was lacking and I worried about all the things he was missing.
More recently I have realized that there are all kinds of people in this world with all kinds of issues or disabilities to overcome. It should not be called life but love.
Its what every person is looking for in one way or another.

Adam is no different. As I focus on allowing him opportunities to experience love I’m filled with pure awe as he responds. These photos of him and his brother Frankie are ones I am MOST PROUD of. These moments are what our life is ALL ABOUT. PURE LOVE.

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Go Go Go

In this day an age is it ever possible to slow down? It’s almost a restlessness that I can’t shake. Gogogo dodo dodo. I ask myself what will it take? A cozy couch? A few good movies? The time can’t came soon enough.
The fact that Christmas is around the corner doesn’t help either.
I’m almost saddened by what Christmas season has become. The pressure to purchase for everyone you know is exactly what stores want.

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