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.

Sunday, March 1, 2015

So much to update on!

Ahhh...it feels so good to finally be updating with some awesomely amazing news! First off, let me start by saying that life has been really good to us lately (knocking hard on wood). There has been no real sickness for Kenny...which is HUGE considering he is usually sick all season long. Minus a few unexplained seizures, hes been pretty healthy! Last week, Kenny had an EEG...still no word on the results...but he was a trooper!
I do have some fun news to share...Kenny is almost potty trained!  I give this huge accomplishment to his teacher! She saw that he was ready when i was so stuck in the same rut, day in and day out. She saw the possibilities when i was burnt out and exhausted. We do have accidents daily, but...just like a 2-3 year old learning to go in the potty, Kenny is doing awesome! We just have to keep in mind that just because his age is 7, his mental age is more of a 2-3 year old...sort of hard to swallow, but true. 
At school and at speech therapy, he is learning many, many signs and is really working on verbally saying things...school, bus, outside, backpack, and names of some family members! He has been wanting to do things on his own...but wants me, his momma to (doing the sign for "help") help him in some way. Yup, the kid is a mommas boy. Yay me (eeek).
As you all know, this winter has been brutal...i mean...tons of snow and record below zero temps....and that means...HIBERNATION for me! So while being couped up in our house, I've been working on couponing (which i took a break after thanksgiving)...and let me tell you...its addicting and actually makes shopping fun...almost adventuristic (if that's even a word)! To spend more than .75 on a box of cereal is crazy to me now! The way to start, is by buying several newspapers with inserts. I belong to a couple of Facebook groups and pages that coincide with some blogs that I'm following...i recommend you doing the same. Now keep in mind, couponing, when you want to stockpile, means you only match up sale items with coupons...only a few items at a time so you don't get overwhelmed. There is a lot to learn, it has taken me about 4 years to finally understand the whole concept...it takes me a whole day to just plan, print, cut and organize my shopping trip...but well worth it! I will be talking more about couponing in future posts! 
Ok, back to this winter and my hibernation....Valentine's Day and Pintrest encouraged me to do this:

I am secretly hoping i am creating fun memories for my kids to tell their kids ;)
My Instagram addiction (in which i also have) has taken hold of my daughter, who loves to post pictures of the dinners i have made...


Thatsmygirl!!! Haahaaahaaa

And since we've been doing fairly well with this new house...(i say new, but we've been here almost a year this month), my husband has decided to take the next step in his business...he is going digital! It means that money will be a little tighter (especially since the county keeps raising our property taxes) because of the lease of a digital printer, but it will also mean that he is taking his company into a whole new area of signs/banners/graphics making! You cant make money without taking the plunge...soooo...we are. Many prayers are needed that we can pull this off...its a huge gamble and I've been worried about finances...so prayers please. 

Finally, its that time of year...lent...and...cupcake bake sale every Friday at our church. So I'll leave you with an image of the variety of cupcakes from the first fish fry bake sale. Ive been trying to make many different kinds each week so i know which ones are popular. 

This is all to get me prepared for a big event that i will be doing in April (more to come)...