First we have to say THANK YOU again for the love that
has come our way since the devastating news (that we always
knew was coming--but still....).
We cannot begin to express enough thanks ever to everyone
who has loved us in big and little ways.
Seriously floored and grateful beyond words.
I loved watching Mark in his maid outfit steam clean our
and Uncle Dave bend over and give Kyle a kiss on the
and Amy listen to me swear and gnash my teeth.
and for treats that have shown up on our doorstep.
and for people hugging and loving my children.
and for dinners that have been brought in.
and for podiatrists that have made house calls.
and for so so so so so many acts of love and kindness.
and for social workers that let me text anytime
and cry into the phone.
and for everyone who is anyone at the Huntsman Institute
who has touched our lives.
and for people who say F cancer for us and with us.
I am so so grateful for a boss who went above and
beyond to make sure I could be home with my husband now.
I am so so grateful for co-workers in the "business
closet" that have truly been my friend and cared
about me and my life and my husband.
We are crushed and our hearts are filled with a sadness
so deep and heavy that it consumes us at all the worst
My kids are the hardest to watch.
Digesting this is a blow, a punch in the stomach.
I have a feeling that will be the case for a long time
Some good news is that I had a boss that worked and
worked until she could find a way to let me have
time off with my husband (since I did NOT qualify for
FMLA until December 23)
Long story short is that *I* can take a leave of absence
for *MYSELF* and be home to take care of Kyle.
That starts on Monday after I finish up some lists
and things to do at work.
We know that there are many people who want to visit,
and as I said on Facebook, without being rude, there
need to be parameters for Kyle at this point in time.
Kyle is tired and visiting makes him even more
tired. It is emotionally and physically taxing on him.
That is the honest truth.
Wise words from people who have been through this before
are as follows:
**Please keep visits short (1/2 hour or less)
That's what he has in him for now.
**Please call or text ahead of time and make sure
he's up for it. (If you need a cell number message
one of us on Facebook) This varies from day to
day and hour to hour honestly.
**He is home during the day and also available then.
Again text beforehand to see how he is and if
he's up to it.
**Nighttime is when his pain seems to come on strong
and visits after about 8 PM are too late (I know
we are worse than 90 year old people).
**He would love a text or email as well if there's
something you want to share with him, or want him
to know, or want to say.
**This is also a sacred time for OUR family.
Please be respectful of that time. (No one has
been disrespectful so far in case anyone is worried!)
Thanks again for an outpouring of love and acts of
kindness. I don't even know who to thank for half
This is our update for today.