Friday, March 13, 2015

A Friday the 13...not to remember


On top of my son having stomach issues...from random vomit on Monday (no fever or vomit after said issues at school) to not peeing Tuesday and Wednesday...to puking on Wednesday afternoon (with no fever or other vomit after coming off the bus) and then...pain in the feeding tube site...to only find out that the balloon broke. Thinking I had a back up tube from the last supply shipment to only finding out that the supplier never had it on their order. So what's a mom to do on a Thursday night when a g-tube is falling out? I taped and ace bandaged it around his tummy, in hopes that the school was able to give me the extra one that I gave them at the beginning of the school year (as a backup). This morning was supposed to be a get ready and attend a very dear uncle's funeral. We loved this uncle so much...he was a great human being...and his surviving wife...my husbands aunt is just as great. Anyhow, I woke up, got dressed and made up. I then woke up all the kids, ironed and called the school to see if I could drop by to pick up Kenny's extra g-tube that they had with all of Kenny's medical supplies. Nope! They couldn't find any sign of a feeding tube. No box...no nothing. So, now we have to wait till Tuesday for a new one. 

I then get a call asking us not to bring our Kenny to the funeral. REALLY? He might upset and disrupt people? I already had him ready to go...he was even doing the sign for the Father, Son and Holy Spirit. How can they ask that of us? My husband and I were beyond hurt. We were both in tears! And to not stick up for us. really? Yes, my son is loud, runs around, and cant say true words...oh, and much of what he does, is awkward and clumsy...but he is alive and loves people and gatherings of any kind. He doesn't mean to be loud, but because he is severely deaf and had autism...his voice is loud and very repetitive. We dont go to too many place with him because of these issues, but thought we were safe with family. Ive always heard that you need a villiage to help raise a child (especially a special needs child), and yet, its just...well...not that. I really dont think people realize how bad it feels to be looked at...the head shakes in dislike...why? Because we are doing the best we can with what we've been dealt. Every day is a struggle, yet my husband works hard, i work hard...our children...work hard to keep it all together, the best we can. 
We've been through so much in these past 8 years (a death of a child, a baby teetering on death in the NICU then all the ups and downs of having a medically fragile child that can pass at any time ...amongst many other hurdles)...that this was the straw that broke the camel's back and we just couldn't handle it. We have a child who is almost eight but developmentally more like a 2.5-3 year old. We have to give him medicine daily and worry about every cough or stare in case his lungs are giving out or if he's having a seizure. We never thought We'd have to stick up for our developmentally disabled/medically fragile child from those close to us...but unfortunately...it happened. I wont let my son who has beat many obstacles and odds...just to smile, laugh, run and play, be discriminated against...by anyone. I love our families...I really do, but when it comes to my son, I...WE, wont be pushed aside. We've come this far...20-something years together and 8 kids, many weights have fallen on our shoulders and fingers pointed at us...this time, we're not bowing out gracefully. We did nothing wrong and we wont hide our handicapped child away from the world! We wont allow any more sadness, stress or bullies hurt our spirits and break us. We've only ever wanted to keep family together...have family stick up for us...for our son...

Thank you for supporting us and God bless.

1 comment:

Kathleen said...

I am sorry for your family.
My own children are mostly grown now. They are 27,22,21,18,17,& 15. It breaks my heart to hear them say they don't like my family. But I understand, they have seen them for who they are. My youngest is disabled. He was in the hospital for months fighting for his life and no one came. My one sister was several states away battling cancer so I understand. No one else could even visit while a ventilator breathed for him and we sat in the same clothes for days afraid to leave his side for even a moment.
My parents were great but they were taking care of my other 5 children that we were trying to shield from just how bad things were for Jonny.
After Jonny got home, my sister suggested we put him in a institution, so as not to impact my other children. Life with Jonny did impact them; it made them compassionate and accepting of others. My sisters have let us know that certain family events would be too hard for Jonny- code for he is embarrassing and we don't want to deal with him.
We continued to deal with them pretty regularly because of my parents. It broke my mother's heart to see how her children acted. My parents loved Jonny and were so proud of every tiny step forward.
My parents have gone home to Jesus and I barely see my sisters. We are happier that way.
Jonny is generally less embarrassing now and my sisters want to do things with my family but we rarely see them. My children remember how they treated their brother and don't want anything to do with them.
It will be a loss for those who treat you badly. Your children are blessed because they have you. They will grow up loved and confident and caring. Those who sought to push your child away will be the ones on the outside. So pity them and continue to stand strong for your family. May the Lord continue to bless your family.