Thursday, November 19, 2015

An Outsider Looking In...

An outsider looking in might just think that our lives are doom and gloom with a child who has special needs.
Little do they realize that our child is exactly what lights up the dark corners of our life. But there is a dark side to special needs parenting.
One that people don’t often realize when they think about what our lives must be like. It’s really all the outside challenges that we face while caring for our child.
It comes in the form of having to fight for government services, which most of the general public falsely assumes covers all the financial care and overall needs for children with disabilities.
An abundance of emails and telephone calls to follow up on your child’s affairs ranging from making appointments to following up with agencies designed to assist you through the special needs journey.
The financial stress of never knowing how you’ll fund out of pocket medical, therapy and equipment costs that insurance denies.
The utter exhaustion because you realize that you can’t just be a parent, but that you must also juggle the title of being your child’s personal secretary and advocate.
Searching for opportunities that otherwise wouldn’t exist or just land in your child’s lap, hunting for foundations, grants, and seeking donations through endless fundraising.
Sometimes the feeling of being of being alone can be very overwhelming at times.
It is in realization that you can’t even go out  without the world staring at your child and looking at you either with tremendous pity, relief your child is not theirs.
It’s in the lack of kindness and consideration when you desperately need a disabled accessible parking spot with eight-feet of clearance to unload your child with his ramp, but can’t find one because an able-bodied person with no parking permit has decided they are more of a priority that day.
These dark things can add up, and they feel sometimes like they are smothering you while you’re working so hard at being the very best parent to your child with special needs.
They can make you question your own worth, and sometimes make you feel like you are failing. Failing to help your child in all ways possible.
We must remember what it is all for – our child. And keep marching towards that beautiful guiding light on the special needs journey. That light is worth all the dark corners that we endure.
( I got some of this from a friends Facebook page. It really hit home today. Thanks Melanie)

“To be a star you must shine your own light follow your own path and don’t worry about the darkness for that is when the stars shine brightest.” unknown
The Dark Side to Special Needs Parenting
5th, April by Noah’s Miracle

Friday, November 13, 2015

The Journey to Real Food

The last few days I've been thinking about how and what I feed Noah has changed over the years. He got his gtube when he was 5 years old. When it was put in we were shown how to use it maybe once and we were sent home. I remember feeling so overwhelmed with it all. At that time Noah was fed over night via a feeding pump and didn't have anything at all during the day.
Before he got his gtube I would rock him to sleep every night and would put him to bed after he fell to sleep. It was my very favorite part of the day. After he got his gtube we were afraid that he would move around in his bed at night at pull out the tube, or worse get it wrapped around his neck. So we decided to put him in his green feeder seat, lean it back and strap him for the night.
The first several nights were so hard for myself and Noah. Being rocked to sleep was no more. We had to hook him up to the feeding pump after he was strapped into the chair. It was a big adjustment for the both of us with many tears shed. It was so hard..... 
I would say this was our routine for probably 2 1/2 years and I started thinking ( I don't why it took me so long) How odd for Noah to be only eating during the night. I then got the idea to feed him his formula throughout the day. I would still put his formula in the feeding bag but I wouldn't have it go through the pump. I would hang it and let it gravity feed into his belly. This process still took about 45mins to drip in. Not very convenient if we wanted to go anywhere but Noah could finally actually lay down in his bed and bit on a normal eating pattern like everyone else.
 At that time I had the habit of watching medical shows. I happen to be watching a documentary called A Girl Without A Face it was about a little sweet little girl named Julianna that was born with Treacher Collins Syndrome. At one point in the show they were taking Julianna to one of many appointments and had stopped along the way to feed her. She too had a gtube. Her Mom was feeding her in the car at a rest stop like this: 
And I start  thinking, Wow what a great idea!!! It was a lot quicker process then using the feeding bag. We did that for awhile. Maybe 2 years, when my mind start turning on overtime again. I know pretty scary....
What's wrong with feeding Noah real food? Why does he have to have only formula in his gtube? On to the long road to getting his doctors to except the idea that Noah is better off with a blenderized diet, instead of just formula. We bought a Vitamix and haven't looked back.
The best part of blending Noah's food, it almost feels "normal." I can make his food and pack his lunch like all the other Moms. Noah has been a lot more healthy and isn't congested all the time.