If having a child with special needs is really a race than I wonder… Am I the Tortoise? Or the Hare?
Somebody warned me once about pacing myself in this long race. They warned me that I would burn out, definitely more than the usual parenting circumstance. I heard the warning but didn’t listen. Even right now in this very moment I find myself in a dark, quiet room and I still can not sleep. I still can not shut off and relax. I’m not sure if this is a culmination of all the lack of sleep or if I should go see my doctor. It’s probably both, but there is just too much to do, between being Adam’s night nurse and mommy advocate during the day it’s getting hard to deny the importance of proper sleep and good nutrition. I’m one of those; the kind that go, go, go so I guess that makes me the Hare.
I have a plan: rehabilitate, restore, reroute. These are all words I associate with Adam and his recovery. I see the potential in him and though I have a team of support I can’t help but still feel a heavy sense of responsibility. It feels as if Adam is up against a clock of some kind and when time runs out that’s it. That’s how he will stay and all the people who didn’t believe in him would be right. I can see their smirks right now. I can hear them say “well there’s just not enough progress”.. Dismissing ALL the progress he’s made. Progress like breath on his own or pee on his own. I found myself saying “slow and steady wins the race.” That’s how I’d describe Adam as the Tortoise because he could care less about what “they” think. He does things in his time, in his way.
I know that sometimes, maybe most times you can’t make others see or believe what you need them to. I know I’m hanging onto a promise that God shared with me, I know the potential Adam has and so I push, I advocate, I cheerlead him through it, fingers crossed his new physical therapist will too.
Perhaps Adam being the Tortoise and me being the Hare (THX SUSAN!) 🙂 means we are running this race together and in the end my Tortoise will win the race.
This is the Upsee its a harness made by Firefly Company. I LOVE IT!
CHECK IT OUT Online
This is Adam in 2013 and Adam in 2015
The progress is slow but its worth the wait.
This is US LATELY.
(One of my favorite pictures)
Adam will be playing Baseball in Spring with League Of Dreams. Frankie will be his “Angel”.
An “Angel” with League of dreams means Frankie will assist Adam during the baseball game.
I just watched Culture High,
A documentary film about legalization of Marijuana. This movie was a compelling
movie filled w truths about pros and cons 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 both are in the documentary movie, also starring Snoop Dog, Joe Rogan and a few brilliant scientists (forgot their names ) sorry. Jason and Jayden helped save Adam’s life. They guided us out a dark scary time regarding Adam’s health.
In Sept 2012
I contacted Jason David.
The Davids shared their journey about mmj Info and how CBD had helped reduce or stop seizures Jayden’s seizures. He answered questions like: How to apply for a “caregivers” license. How to do this in a safe manner? He also offered MUCH NEEDED hope and encouragement.
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. Lets just say he was close to death. He went into respiratory failure too many times. He couldn’t 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 his 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
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
Will wear RX glasses
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.
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.
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.
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. 😀 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!
Thank God for Adam’s team!
His team of nurses, therapists, family members especially big brother Frankie, even doctors have given Adam support in countless ways.
There is a saying “it takes a village to raise children.” In Adam’s case it takes a whole country. Either way as the medications come down he becomes more and more awake. In fact; TODAY WAS ONE FOR THE BOOKS! During therapy he was actually smiling at me! It wasn’t a huge smile like the old, but a smirk. There was a twinkle in his eye and a smirk on his face. There was even enough wiggle in his fingers like he wanted to grab the toy. Put it all together and it screamed, “I’m in here.
I see you. I enjoy this moment.”
For that; my mother-heart can feel at peace. (whew.. Exhale)