My last post was back in October 2015 when this whole roller-coaster ride started...
Much has changed.
Quick catch-up medically speaking:
-YES, I do have confirmed Long Q-T Syndrome, LQTS1 to be specific
-My children and parents were tested... The rest of my family (brother, Dad's brother's etc...) will have to be too. We had some MAJOR stress while waiting for the results to come back, funds were not transferred to the US government for their tests to be done in Maryland and it was delayed by almost another month, waiting...
Treading water, waiting for answers bites, BTW.
Thankfully in the middle of this the Children's Hospital of Eastern Ontario (CHEO) won a landmark case so that testing can start for other's here at home.
-ALL four of my children have inherited the mutant gene, there was a less than 6.5% chance they would all have it, but... they do. My Dad also has it, so it was inherited through him.
- KNOWLEDGE IS GOOD -
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GOOD NEWS!
I am now stabilized on beta-blocker #2 and have been released from The Heart Institute care for the next 2 years.
We are applying to a program through CHEO to get an AED (automated external defibrillator), with 6 of the 8 people under our roof having LQTS1, we are considered high-risk. We looked at getting one ourselves but they are farrrrr from cheap. We already need to find funds for Medical Alert for everyone and costs of appointments (time lost off work and PARKING, gah!) the relief of having this covered and knowing we'll have one on hand is -priceless- to us.
We are applying to a program through CHEO to get an AED (automated external defibrillator), with 6 of the 8 people under our roof having LQTS1, we are considered high-risk. We looked at getting one ourselves but they are farrrrr from cheap. We already need to find funds for Medical Alert for everyone and costs of appointments (time lost off work and PARKING, gah!) the relief of having this covered and knowing we'll have one on hand is -priceless- to us.
The boys are just starting...
2 have started beta-blockers and 2 are waiting to go for stress tests and start medication. The big rush is for the younger 2 who also have ADHD, and ADHD and ODD which means they need to take medication that could trigger the LQTS. Boy #3 has been having particularly bad issues since being taken off his medication as a precaution when this all started. Household damages, Suspensions and other school issues, Police involvement and Youth Services counselling level issues... fun times. We are exhausted, but we are on it.
LQTS is a juggling act and it's a super hard one when you're dealing with children.
Sit in the office discussing with one of the 3 doctors involved and every-single-little decision is guessed and 2nd and 3rd and 4th guessed because NOBODY (doctor or parent) wants to be THE one that made THAT decision when/if a 13 or 11 year old dies later. With adults the issues etc... are laid out and ultimately the patient has the final say. If the patient dies, it was their choice and everyone else can, albeit it uncomfortably, wash their hands of the decision when/if it goes bad.
No stress, No pressure... nope.
We also have had a buuuuuuuunch of other stuff going on, most of which we have kept to a very small circle of people but now that we're actually heading into court cases it'll be out and taking up all our time.
We are dealing with 5 cases right now triggered by the 1st.
--> My Ex, the boys birth father, has asked to have support payments changed and also for visitation, after 6 years of no contact... This cracked open a few things. The boys have been afraid to go to school, having nightmares etc... much the same as when visitation stopped because of death threats and the CAS getting involved.
Though we were planning on last-name changes for them, end of the summer, before the renewal hand-fasting we have had to change that plan.
-->Greg is petitioning to adopt them, making up the other 4 cases.
This is something we have dreamed about and wanted... the boys too, but decided to let well enough alone and just change their names. The bees nest has been poked now and not by us so we are forced now to move forward for the health, safety and sanity of the children.
We have been wading through the system and it's been a long sticky go but we're getting there. The boys each saw a separate lawyer and signed paperwork saying they would like Greg to adopt them, THIS-is-what-they-want.
The other issue here is IF I ever were to succumb to the LQTS myself, Greg has no custody. Arthur is 18, with Greg's help and my parent's he could apply for the other 3, it would be long and messy. In the mean time they could wind up in foster care and/or back with thier birth father. Not Good.
WE ALL NEED THIS DONE for everyone's sake.
It's the right thing to do.
The stress and time involved has been incredible... leading to other issues, such as my bladder prolapsing again and infection after infection because of that. I'm fighting off another UTI as well as a head-cold as I type this.
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Which leads to another decision, that is not popular here but I NEED to do for ME.
I've packed up all my painting supplies until we're through this quagmire.
Nearly everyone has heard of the Spoon Theory by now, if not...
We have waaaaaaaaay too much going on between the court cases and the million and six medical appointments for my Dad and four boys.
The house is falling apart... cleaning, cooking, repairs...
-LIFE-
I just don't have the spoons left for Art.
I have tried...
I have tried so hard and it has just left me a sad crying puddle at the end of the day when I can't...
This year's Soul Art Day was the final straw. Made sure to get extra sleep all week, upped the self-care etc... and was ready for a whole day to actually DO IT... and then the day before we got a call: The younger 2 boys needed a 4-6 hour appointment at CHEO the next day.
THIS is what life is like now and dropping the medical or the court cases isn't an option.
We can't make plans, we don't know when we need to leave for something. Greg HAS to work, so I'm trying to juggle the rest.
I have no spoons.
I have taken all my paintings down from around the house, they make me sad.
The Art Finder and Red Bubble Stores will remain open and I can access the Art when/if anything sells, but there will be nothing new til I feel there are spoons to spend.
This also gives me the chance to re-organize and re-evaluate my space before starting in again.
All my painting supplies, as well as the ART have been moved down to the basement.
It feels much bigger in this house already...
It actually feels GOOD.
I can breathe again, just a little and after gasping and struggling so much over the past 6 month... I'll take even a small mouthful of any air that offers relief. Happily.
Said my piece...
Going to go find a book and some tea and relax before the phone calls start again.
Good-Bye with Love,
Sarah
