'It's Not Supposed To Be Like This ...':Special Needs Parenting 101.

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Status: In Progress  |  Genre: Other  |  House: Booksie Classic
A family keeps vigil at the bedside of their little boy, who is currently fighting for his very life in a hospital; the child has significant special needs. This is their story.

Submitted: June 17, 2017

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Submitted: June 17, 2017



It is so unfair.

We didn't ask for this.  Our child does not deserve to suffer like this, so needlessly.  While other children his age get to play outside and have fun like any normal six-year-old child, our son, meahwhile, has to spend time in a hospital bed or at doctor's offices when he is well.

Our son deserves far better than this life.  We feel cheated somehow; we feel we were robbed, and we find it hard to see any silver lining in this.  We are not very happy with God right now; we feel He is punishing us somehow for not going to church or reading the Bible like we should have done.

We are trying to see the good in all this drama, but it's difficult at best.  What good is it when our child can't walk or talk on his own, let alone, feed himself or change his clothes? He is not toilet-trained and he probably never will be.  We have to do everything for him; and I'm the one who is usually stuck inside, caring for Zachariah, while my husband, at least, can take a break by playing golf or going out with his buddies for lunch several times a week.

Zachariah's medical bills are eating us alive; there's no way we will ever get 'em paid off.  We keep getting threatening letters or calls from the billing department, demanding payment; but we keep telling them we are trying our best but we will never catch up, not when Zach gets sick and ends up in the hospital for whatever reason it may be.

This time it's his breathing.  Pneumonia again.  He's knocked out and on a ventilator, so his lungs can have a chance to regroup and recover.  It looks far worse than it really is, but let's face it: Zach's really sick; it's going to take time for him to beat this latest round of pneumonia.  It's because his immune system is so crappy.  Any little bug or sickness that comes along, and Zach's usually the first in line to get it; and he can't get sick like any other child.  When he gets sick, it hits him hard and even a simple little cold or the flu can put him into the hospital.

It's so frustrating.  Then people wonder why I wish that we never even had Zachariah or wish that he could die, so he wouldn't have to suffer any more.  I didn't ask for a child to be born with severe disabilities; we wanted a child who could run and romp and play and talk; but we have a son who can't do any of these things.  He's like a large baby who needs care 24-7, and there's no break in between.  I get so mad at our son and I feel so bad because it's not even his fault.

Just say some prayers or well wishes if you have the time and pray that Zach-man pulls through this latest sickness without incident and that he gets out of the hospital; we can't afford the bills as it is, and yet they keep piling up!  Any and all prayers/well wishes are greatly appreciated; thanks in advance!

Will update you again in a few days with another report about Zachariah; hopefully he will improve!  This is not the life I would want anybody to have!

*End of part one!*

© Copyright 2019 Karen Lynn. All rights reserved.

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