There are a lot of things no one taught me about parenthood.
This week was one of those weeks as a parent you totally dread. Or at least I know I did.
Murphy's Law-(Hoover Edition Volume 1-
If you have no time for something to happen...something will happen to something, somebody to make sure you never over schedule again.
This week was a horribly over scheduled week, and you know what happens... Every time you have something that you've waited months for Jonathan to have a speech evaluation done and Sarah wakes up with the scariest allergic reaction I've ever seen with my own eyes. We spent the rest of the day in an Emergency room, and thus we had to cancel Jonathan's speech eval.
Monday we had therapy , Because I am unable to be omnipresent (able to be several places at once) we had a very important genetics appointment for Thursday.
Tuesday we had more therapy for Daniel. This time the 2nd therapist couldn't make it. She is only available there twice a week and so we couldn't reschedule.
Wednesday we were supposed to have Jonathan go to the same place that Daniel gets therapy at, but Sarah woke up with the worst allergic reaction to an unknown substance I've ever seen. She was suffering from a tummy bug as well. While we did everything we possibly could (bath, benadryl,lotion) with no relief. After getting Daniel off the bus, I decided that I needed some help for her. NOT knowing this area and where the kids urgent facilities are STINKS.
I have to thank my friend Brooks for being Daniel Relief while I dealt with Sarah in the ER.
Don't let the ADS fool you wait times are NOT a good indicator of great care. We got triaged and sent to a bed in a corner and left there for 90 mins before anything was done.. Meanwhile Sarah was hating everything and everybody. I felt badly but all she really wanted to do was scream.
I really would have been way better off being told I did the right thing and be sent home with the blessing and the mandate to call her pediatrician. It would have saved me from having to manage everyone and try to get someone to pick Jonathan up from school. The doctor didn't want to do anything other than repeat what I had already done.. The nurse there was sweet though and told me how to constructively complain..
Stuff Jonathan Taught me...
Alarm clocks...who needs that. I haven't used an alarm clock since before Jonathan was born. Occasionally, we need one when there is something out of the ordinary or when our schedule's been disturbed.
Schedules keep mommy sane....but in the same breath being flexible to adapt to stuff works too.
You are EVERYTHING for your child...including a coach and advocate... but sometimes you need help you have no idea about.
It's never too early to have the bully talk and what to do when one is in your life.
We have plenty and we're only five. I pulled him off the bus because of the verbal and physical abuse no one ever saw there. The principal of his school can do nothing about the bullying problem at her school and no amount of screaming will fix this. By the way, the bullying started the second day of school.
He's been pushed down more times in PE and at recess than I'd like.
I'm praying against anything happening to Jonathan when one of these mean little overweight ginourmous kids jump on him and try to wrestle. He is in the terms of our genetics specialist "floppy" and over flexible.
Don't feel guilty. Because by being sad, he won't undesrtand why mommy is sad , thus making him worry.
Are there times that I feel responsible for what Jonathan has had to endure? Sure... case in point talking to the genetics specialist yesterday. He kept pointing out that I am also a carrier of what he has. so yes and they have medical records to prove that. I have to always keep in mind that as his mom KNOWING what he has to endure daily and has first hand knowledge of this I double feel for him.. We are doing everything humanly possible to get him everything he needs.
I would be willing to take Jonathan and get on a plane and fly to somewhere if we thought anyone could help figure out how to help him. So far as we have been able to tell from different sources we are the 3rd and 4th case of this discovered since they've been mapping the human genome. We are one of the only cases where they've seen an issue regarding the part of the specific Chromosome.
If you happen to know of any Pediatric Children's hospitals that specialize in Developmental or Genetic medicine please let me know.
Which one is it?
The human genome is made up of 23 pairs of Chromosomes. With thousands of variations. Each pair has it's own special function... You get half of mom's genetics from the egg and half from the sperm at fertilization. But even if there are perfect sets, the process of division can cause problems.
One half of our pair on Chromosome 21 is missing some material. This is also the smallest chromosome in the whole genome.
The Location of our Deletion is 21q22.11.
Go ahead Google it. Even Google is CLUELESS. genetic scientists have found that some cancers and even Alzheimers can be located there... but this is NOT US. Trust me on this. Googling a condition before getting interpreted results is quite scary.
Currently I also pray for every time we have to go up and down several flights of stairs to get to our apartment. Daniel is currently in physical therapy trying to work on stairs.
Daniel will be tested for this. However, we have to wait for the Children's hospital to order special equipment so that they can look at the specific chromosome..
Our hope is that Daniel does NOT have this, as Andrew isn't a carrier.
As for us that is what's going on. I hope this helps someone because I feel we're at a low point right now...and we are so ready to go up from here.
Be Blessed
