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.
Ever wonder where Batman was born? Well today we brought Adam back to the place it all started: The Neonatal Intensive Care Unit at the hospital he was delivered at. These ladies were some of Adam’s first cheerleaders even before I had a clue of what exactly we were in for. I can still remember the days after delivering Adam when the time for my discharge came up. I remember looking into his incubator at his tiny 2pound body asking God to give me the courage to leave him there. My body not only hurt from the delivery but it physically hurt to think that this precious time for mother and child bonding would not play out as planned. I knew I had to get myself better and heal from the c-section. I knew the time had come for me to leave my baby behind. Thankfully these nurses were there to help me and my husband feel secure in the thought that they would give little Batman great care and attention. They kept their word. In fact they spoiled him rotten. Even to this day he does not like to have a wet diaper, he will NOT pee and poo in the same diaper and he loves loves loves the ladies. Thank you to theses wonderful nurses who work as a team everyday to give little premie babies a fighting chance. Thank you to all NICU NURSES!
This is Adam during PT. I’m so proud of him. I’m seeing him ever slowly coming out of his shell. I can’t wait to see him PROVE DOCTORS SO WRONG (the ones who didn’t believe in him).
Go Adam Go!
Here is what Adam has been up to since the last post in January. It’s been busy and it’s probably going to get busier. Since the rehab facilities deemed Adam “chronically ill” he does not qualify for rehab services as an inpatient. Apparently insurances only want to pay for the acute cases aka “easy fixes”. So I am doing everything within my power to get him services that will facilitate his recovery as out patient. Which has its challenges. I use the word recovery because Adam is recovering from the two brain surgeries and multiple seizure meds. It’s been slow and doctors gave him two years to fully recover. That two years has came and went but I refuse to give up. How dare doctors give God a time frame. As for Adam’s near future he just started Home Schooling. A teacher comes to the home to work one on one with him until he is prepared to transition to a full day than a full week. He also getsVision Therapy, Physical Therapy soon after that Occupational Therapy will follow, he also has been playing Basketball and Baseball with the help of his big brother Frankie and League of Dreams. We are on our way to discontinuing another seizure medication. We will ween another dose of medication in December. It’s been a lot of work for Adam and for all of us who love and care so closely for him. Each time I become weary I just repeat “I can do all things through Christ who strengthens me” and than drink a big cup of coffee😉
Adam Turned 6 years old
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.
WE MADE IT TO D-land!!
It was a dream come true!
There were days when the thought of Adam at Disneyland was something I’d picture in mind just to get through a horrible day. (You know, kind of like how I refer to Hawaii).
Than I thought of it as a far out of reach goal. One day out of the blue I whispered under my breath,
“God, if this Your Will please make it happen. If this is meant to be help us because I do not see a way.”
Let me say He did it!
By an “unexpected gift” of 5 Disneyland tickets! Adam’s nurse was able to go and our hotels conjoined so when her shift was over she just went next door and when morning came I carried Adam to her room as we packed an prepped.
Some may ask how i know it was God’s. I know it was GOD’s plan because of this: the day we went to DisneyLand was the same day they celebrate Epilepsy Awareness Day!
We had NO IDEA UNTIL WE ARRIVED and saw the hundreds of people wearing purple epilepsy awareness shirts and they had Mickey on the front.
God knows the details of our heart’s desire.
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.