So much to report in Jordan’s World!!
Jordan had a pretty good summer, baseball games, swimming
and lots of time with family.
The fall has come with starting grade 8 which is going to be
an exciting year for Jordan. Zander started JK and Travis is in grade 10 as
well as Samantha is in her 2nd yr of University. So many changes
happening within our family. Some good news on the Travis front, no heart
surgery for at least another year. He is being monitored closely and if things
get worse it could be sooner but for now at least another year without that
stress.
Jordan had several significant seizures and spent some time
in the hospital. While there the doctors were concerned about a small stroke
and were running tests. We found out Jordan’s bloodwork came back all messed
up. His platelets were low, his hemoglobin was low, red blood cells were
enlarged and he has anemia. It is now nearing the end of October and he has
been through 4 rounds of blood work in the last 6 weeks trying to figure out
what is going on. We have been given a worse and best case scenario and neither
is great.
Last week we took him in for what we hope is the last bit of
bloodwork before we get some real answers. He has a clinic appt on Nov 5th
and hopefully we will know more then. It has been difficult to deal with and
the stress is unimaginable.
We have come closer as a family through all of this even if
at times it feels as if we are being torn apart and our best friends have been
there every step of the way with us. Sometimes friends become family and that
is an amazing feeling of love.
Trying to stay positive seems like an impossibility some
days and with so much uncertainty it takes all of our energy to keep the people
in our house up in spirits.
“How do you learn to breathe again? How do you learn to live
a normal life when you can’t remember what one feels like? How do you regain
faith when it feels like faith left you standing alone so many years ago? Emotions
are something we reserve for our closest family and friends but love is
something we have for all. Sanity left the building a long time ago and all
that is left is a normal family that might be a super-family in hiding. I know
so many have far bigger stressers than we do and never have I felt why us, but
it does feel like the breath has been sucked out of us so many times that we
sometimes wonder if we will ever get it back again. How do you learn to breathe
again? Or maybe when can we learn to breathe again?
He sits here beside me laughing tonight as he watches Wall-E
and at these times nothing else matters besides those giggles that I live for.
Some of us wonder what our purpose is in life and I know my purpose was to be
his Mother. The many people that know me understand how hard it is for me not
to work, to sit at home waiting for doctors appts, waiting for the school to
call and say he is having a bad day and I need to go get him, waiting, waiting
waiting. I as a work-lover am finding it difficult to keep myself busy and
productive. Some days the ambition is very low and some days I feel I can “do
it all”!! I have a plan and I am getting my plan organized and setting it in
motion and then LOOK OUT!!
No matter what happens with Jordan, I know as his Mother I
am proud of our family and friends for always pulling together when he needs
us. I am proud of my friends who continue to give me strength when mine seems
to be running on empty and most of all I am proud of my family, we are mighty
and we are soft but we always manage to pull through no matter what gets thrown
on our plate.
Jordan is a boy with a mission and these last few years has
made it very clear to me what his mission is!! We all could learn a little from
a special boy that can’t talk but he sure can communicate.
