Living Life To It's Fullest...No Matter The Disability.

The year was 1976. It was Christmas time. And it was three weeks prior to my due date. My parents didn't know until my mom was about seven months along that I was even coming in to their lives (she was obese and thought she was gaining more, though she was eating less). At the same time, she also had a tumor that sit next to me in the womb area, making barely any room for me to grow and made it difficult to move (or even breath out the fluids I swallowed).

I came in to the world literally backwards, butt first. As I did, I tore her to the point of her nearly dying from the severe blood loss.

Then it was shown that from my chest wall, I had a collapsed lung and after further inspection, that I had a Tracheal Fistula (my esophagus was basically severed, almost completely).

After stabilization, airlift transport and an eighteen hour surgery, where I "died" four times, I had my lung re-inflated and had the fluid removed. But I was also trached and they had to do the repair along with everything else to my esophagus.

First, it was that I most likely wouldn't live past 24 to 48 hours. Then, the first week. Then the first month. Then six months.

All the while, per the doctors, I would *NEVER* walk independently, talk, feed/drink independently (as in require tube feedings) or have viable pregnancies.

Plus once my parents even fathomed bringing their almost-three-year-old daughter home FOR GOOD in 1980, they were once again met with resistance. They were firmly told that there was NO way that they could sustain me on their own and it was best to place me in an institution to get the level of care THE DOCTORS felt I needed.

Well, I went home with my parents, against Doctor's advice. My in-home nurse was FIRED after the first three weeks of not allowing my own mother to care for HER child in any way. And both my mom and my dad had started me on a path of learning and doing. Walking, talking and eating.

Today, I eat anything I want. And drink anything I want. Of course, thanks to my esophageal tract still being way too narrow and having a "dent", I have at times, trouble swallowing my food without it going the wrong way. Rice and carbonated sodas being the main culprit.

I walk ALL over. Have ran 7-mile races, and plan to run the four-miler (and walk, too!) in September with one of my kids.

And I have three great kids. Each unique in their own way. One like their mom. One like their dad. And one with a mix of the two of us.

Please, I urge you strongly to watch the following video. Yes, this man has had a MUCH harder life than I could ever have had, medically speaking.

Thanks to the UNCONDITIONAL love of his father, his dedication to his son, and the fact that this man NEVER ONCE let the obstacle of severe disabilities his son has hinder the now-grown man from enjoying life to its fullest capacity despite being so severely disabled that he requires a Speak Box and a wheelchair.

Believe me, you will need to get out a handful of tissues, because you WILL cry from the awesomeness of witnessing the powerful pull of love.

Thanks to fellow member Rainey, from the FaceBook group, Abled & Disabled United for Community Change for initially posting the video on the group's wall.

Doing Things Different This Time.

I'd gotten a call out of the blue from Bryce's Case Manager over at Child And Family Services (where he gets his therapies as needed, and sees his Psychiatrist).

Before leaving from his appointment earlier in the month, I once more mentioned to be sure to let me know about Day Treatment Day Camp. I skipped last year as to give Bryce a "break". This year, that mistake will NOT happen again.

Plus, Bryce enjoys going! Hr goes to different places. And it's all-expense paid by the funds received by Day Treatment.

Medicaid picks up the tab for my child to go. Federal Grants and community donations help fund the various activities.

Not only does my son get to do fun things Monday through Friday, but he receives the help of a trained staff in behavioral issues, and talks with a registered Psychiatrist or Psychologist once a week.

But apparently (according to the Case Manager), things are going to be a tad bit different. In a GOOD way!

Those that pick which students are in need of Day Treatment services during the school year will be there to watch the kids that are NOT being served within the school setting (including MY kid) and observing them to see if indeed they can qualify for help and to get the ball rolling.

Two years now, two teachers agreed that Bryce needed extra help in the classroom. Behavior management, primarily. He's been disruptive of others, non-compliant at times, not staying on task or being well organized. And I can only do so much from home. And the teacher herself can only do so much individually with him, seeing as there is a minimum of 18 kids in her class that ALL demand attention at some point.

Even if he can get assistance via the Day Treatment Therapist for an hour a day, or every couple of days, I think, and truly believe that it would make a tremendous amount of difference.

And my hope is that when all is said and done with the summer's Day Treatment Camp and the observances made, that Bryce will be one of the ones that will be selected for the extra help.

Though, I must admit, it's a bit hard at times to stay positive or optimistic about things such as this. After being shot down, ran over, screwed over and flat-out denied so many times, it can sometimes be difficult to stay in that positive frame of mind. Especially since I have yet to be able to fill out the papers to place Bryce in DTC.

He "Graduated"!! (Of Sorts)

Yesterday, Bryce had another medicine check appointment. But with his NEW (again) Case Manager tagging along.

We went through the usual jargon. How do I feel the levels are, how's he doing at home and at school. And how are the mood swings and yadda yadda.

After everything was hashed out like about the Accommodations problems with the school and about more Behavior Modifications at home and at school, and about upcoming Day Treatment Camp for the Summer, it was time to leave.

After I had picked up all THREE months worth of prescriptions (which to me felt funny), I said "so when are we coming back?". Well, my jaw hit the floor and I went bug eyed when I heard...

"Not for another three MONTHS (unless an emergency arises)".

This will be the longest length EVER for Bryce to be in between appointments. And this is a GOOD thing, seeing as it shows significant progress in his behaviors, struggles with his ODD, ADHD and his Mood Disorder. And it's a good sign that means the levels of dosages for his medications are right where they need to be.

So all in all, it was a pretty good appointment. I honestly could not ask for a better Psychiatrist for my son or other patients under his (the doctor's, of course) care. That man GENUINELY cares about the welfare of his pediatric patients AND their family unit (from siblings to the parents). And he NEVER disses an idea you give or gets huffy for saying "no" to a treatment or dosage change. He knows YOU are the parent and that indeed YOU as the parent, know YOUR child best.